Finnian's Journey

Moving On

2011-01-09T21:04:00.001-08:00

After a great deal of thought and wrestling with the decision in my head, I've decided it's time to retire Finnian's Journey. This has been kind of an emotional and agonizing decision - this blog embodies so much for me: everything that my life has become with the addition of Finn to our family two and a half years ago. However, at this point Finn is just one of our kids, and Down syndrome isn't the focal point for me that it once was.

I am going to leave Finnian's Journey up, and hopefully new parents of babies with Down syndrome will stumble across it and read parts of it and see that this journey is an incredibly enriching one.

I've started a new blog where I will continue to write about all the things that spill forth from my mind - including, but not limited to, Finn and Down syndrome.

Life As I Know It

I am so very grateful for all the support I've gotten by way of this blog, all the incredible parents and chromosomally enhanced children I've gotten to know, and all the friendships I've gained. Thank you, everyone, from my heart of hearts.

I hope you'll visit me at my new blog!

The R-word

2011-01-07T23:03:00.000-08:00

A lot of talk has been made about not tolerating the use of "retard" and "retarded" as derogatory slang. It's easy - or at least easyish - to confront someone on their use of the R-word(s) when it's a peer, someone subordinate in some way (as an adult to a child), or a stranger. But how should the situation be properly and constructively dealt with when the offender is a superior, or someone in an authority position (as a boss, for instance)?

I'm very curious what you, my Ds blogging friends, have to say about this.

A Long Overdue Post About What Finn's Up To

2010-12-28T17:34:00.001-08:00

Boy, life sure has a way of getting in the way of blogging, huh?

I can sum up what Finn is up to these days in one word: TROUBLE. In a nutshell, he's into everything. And he's a very determined little guy. And I'm pretty sure he's snickering at me behind my back as he puts me through the paces.

He's figured out how to climb up on his toy chest and . . . redecorate.

He climbs. Boy does he climb.

He's figured out how to make good use of a step stool:

Here's some general rabble rousing:

Oh, and look what a smarty pants he is:

Accidental Mohawk

2010-12-07T20:44:00.000-08:00

It was an accident, I swear it was!

See, here's what happened: I put Finn in the tub and got Daddy's electric trimmer out to give Finn a trim, as usual. I'm running the trimmer up and down the back of his head and notice that he's getting bald spots. The blade guard that controls how close it trims had come off the blade and I didn't notice! So he's got all these glaring bald spots and the only thing I could do at that point was . . . well, give him a Mohawk!

Daddy and all Finn's brothers and sisters are horrified. I'm actually partial to boys with Mohawks (call me strange), but this was not what I intended. No, really!

Hmmm, maybe it's time to get this bad boy a tattoo.

Done

2010-11-30T13:06:00.000-08:00

We had our final OT session this morning. Emily asked if we wanted to extend services for a month, and I declined. With the holidays coming up and all, I'd really rather have our calendar freed up, and I don't see the benefit to Finn to have one more month of OT.

So we're done - done with early intervention. No more therapy. I am honestly relieved. All the therapists Finn has had have been committed to their professions and passionate about what they do, but I still can't attribute a single gain Finn has made to therapy. (And in all honesty, I'm left scratching my head, wondering how true believers in therapy quantify the benefits of it. I know there are those parents out there who assume that we've just had a bad all-around experience with early intervention - which is true to some degree - and that I'd feel differently about it if only we could get better therapists.) I won't go so far as to say it's all been a complete waste of time; some things you just don't know until you go down the path, and in order to discover that therapy was not the end-all be-all for us, we had to go down the path of early intervention. Do I wish I had trusted myself as a parent a little more? Or that I had had more faith in Finn to progress along his own path? Yes. And I'm sure there will be times in the future, as we fly solo, so to speak, when I will second-guess myself. But I also know that is the nature of parenting - parenting any child.

I am looking forward to a schedule free from therapy appointments, days when we can instead go for long walks, go to the park, and just be.

I assume our Service Coordinator will be closing Finn's file. I don't know what that will mean with regard to transitioning him to the school district when he turns three next summer. I have no idea at this point if I even care. Maybe we'll take another year to just be. Who knows?

Behavior and Discipline

2010-11-27T16:30:00.000-08:00

I yelled at Finn, I think for the first time, yesterday. I was loading dirty dishes into the dishwasher and he grabbed a handful of dirty silverware and flung it on the floor, and I responded with "Damnit, Finn!" And he cried. And I felt pretty crappy.

This is one of his favorite pastimes, grabbing what he can from the dishwasher as soon as the opportunity presents itself. I try to keep him out of the kitchen using a baby gate when I'm doing dishes, but sometimes I forget the gate, or I think I can load the dishwasher really quick while he's otherwise occupied, but there's no fooling him.

Some of his other favorite things to do are:

- lamp tipping
-repetitive toilet flushing
- swiping his sisters' shoes from their closet and tossing them over the baby gate into the kitchen for the dog to chew (I am convinced that the two of them are in cahoots)
- emptying drawers and cabinets
- emptying the recycling bin in the kitchen
-flinging books from book shelves

I am aware, from previous child rearing experience, that these are all normal behaviors for toddlers to engage in. What I am having trouble with is enforcing limits and boundaries with Finn - teaching him what is allowed and what is not.

The hard part is the fact that deep down inside, I really don't know how much he gets. I'm pretty certain that he understands "no" and when I say "no" to him in a firm voice, he will look at me and stop what he's doing. But he's usually back at it within a minute or two. And what I don't know is: does he not get it (or only get it momentarily)? or is he just being stubborn?

This is one area in which his lack of communication skills is a definite hindrance. He can't talk to me, and I don't know how much of what I say to him he actually understands. It seems pointless to sit and attempt to reason with him. I do redirect him when he's doing something he shouldn't be doing, but so far that doesn't seem to make a huge difference. I think he's too young - at least developmentally - to try time-outs on, or, really, any sort of consequence.

The fact is, he seems like a much younger baby to me than his actual age. On some level, I've begun to think that this is one way in which those evaluations might be somewhat helpful - if I know he's cognitively at a 12- or 15-month level, it would seem appropriate, then, to deal with his behavior issues as I would a typical 12- or 15-month old (and I'm only guessing; I don't know where he falls cognitively, as it's been a while since he was evaluated), and not his actual age, which is almost two and a half.

On the other hand, I can definitely see how easy it is, because he's clearly behaviorally and developmentally at a much younger level than his actual age, to coddle him and baby him, and in the long run, I'm not sure how helpful or harmful that might be.

I wanted to post about this, initially thinking I might get some advice from parents out there who have been there. But now that I think about it, I guess I know that there is no magic answer. I'm sure teaching Finn boundaries will be very much like teaching my other kids boundaries, it will just require a lot more patience.

Sigh.

Monkey See, Monkey Do

2010-11-17T21:23:00.000-08:00

Score another developmental jump for Finn: he's now engaging in pretend play and imitation.

Yesterday he toddled into our room, grabbed the remote from the shelf below the TV, held it up to his ear and started walking around talking on the "phone." I was truly floored; I rarely talk on the phone (with six kids? It's pretty near impossible), so it's unlikely that he's copying me. More likely his older brother, Kevin, who is on the phone quite a bit. In any case, he's copying someone, and I was flabbergasted that he made that connection - that he found something that resembled a phone, and did with it exactly what a person does with a phone.

Now it seems to be his new thing, wandering around the house chatting away on the "phone." I love it!

Then tonight after dinner, as we were clearing the table and doing dishes, Finn went into the kitchen drawer where the dishtowels are kept, pulled one out, and began wiping down the cupboards - and then he tried to hang the towel on the oven handle where I usually hang a towel!

Seriously, this kid never ceases to amaze me.

Other things he's started doing are "reading" books and taking his sisters' purses and hanging them on his shoulder. Like, he really gets it. I can almost see the wheels turning in his little head.

I know that when I learned that I had a child with a developmental disability - a child who is clinically deemed mentally retarded - it devastated me and scared me so much. What did it mean? What would it mean as he grew up? Would it mean that he would never be able to learn, to experience life? And I see all the time that that's not what it means at all. He's soaking it all up like a little sponge.

Not to overestimate all this, but I know that this type of play is developmentally significant. And it makes me feel like he is going to be just fine.

Wordless Wednesday

2010-11-03T15:49:00.000-07:00

There's a New Sheriff in Town . . .

2010-10-31T21:06:00.001-07:00

. . . and I reckon he ain't gonna take no guff.

Happy Halloween, pardner.

Down Syndrome Awareness Month: Real Life With a Child With Down Syndrome

2010-10-30T13:39:00.000-07:00

As Down Syndrome Awareness Month wraps up, I'd like to share some with final thoughts.

A little over two years ago, my son was born with Down syndrome. In the early days and weeks, I was overcome with grief and fear, and even anger. I had already paid my dues in life; what did I do to deserve having a child with a lifelong diagnosis? It felt like a life sentence, and when I thought of the irreversibility of it, the permanence of it, I at times felt like I was physically suffocating.

I and my family have traveled quite a long way over the last couple of years with Finn. In time, the grief and anger evaporated. Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold. For the most part, we live in the here and now. We take it as it comes, and so far, it's been a wonderful journey. I've made my peace with my son having Down syndrome, with his being different. I adore every inch of him, his body, his heart, and his mind, and I wouldn't change him if I could.

It's changed me, having Finn. It's made my heart more tender towards those who are different, and harder towards those who are cruel or callous or unaccepting of those who are different. It's made me more aware that we all have our trials, that there's always somebody who has it worse, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.

Being an advocate in the world of Down syndrome is tricky business. There are two categories of people to whom we are advocating, or trying to raise awareness: the general population whom we want to see that our children are people just like anyone else, deserving of respect and kindness, and those who might actually find themselves in the position of facing a diagnosis of Down syndrome for their own child. What's tricky is that as an advocate, I want to be honest and forthright - I want to show the world at large that my son is wonderful, and that having a child like him in our midst has turned out to be quite a blessing, while being honest to expectant and new parents that yes, it is scary and shocking in the beginning, but those feelings dissipate, and yes, your child will be different, but different can be beautiful if you allow yourself to see the beauty of different, and yes, there will be unique challenges and frustrations to face when raising a child with Down syndrome, but the truth is, no child, extra chromosomes or not, comes with guarantees or without challenges and frustrations.

What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a bad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we're pretty much like any other family (albeit a slightly larger one than average!). This is just life, and it's pretty great.

Anticlimax

2010-10-29T10:24:00.000-07:00

And with that, we're done with speech therapy.

Finn has been receiving in-home speech therapy once a week since mid-July - so three and a half months. During that time, no fewer than four sessions were skipped: once because Finn had a cardiology appointment, once because the SLP was on vacation, once because she was sick, and once because . . . well, she just never showed up. In that three and a half months, she was on time maybe three times. All the other times, she was anywhere from ten to twenty-five minutes late, and last week, she showed up fifteen minutes early (which is just as inconvenient and annoying as being late). She often brought along a student/assistant who sat here looking extremely bored each time she was here, fidgeting, sitting with her chin resting on her fist, only interacting with Finn at the SLP's specific direction, and just generally giving the impression that she was just putting in her time.

Here's what speech therapy consisted of for us: playing with toys. A variety of toys that the SLP would bring. Nothing special, though, just toys. Musical toys are a big hit with Finn, so lots of musical toys. Singing songs and doing animated hand movements with the songs.

That's it.

No oral-motor exercises of any kind. And honestly, I'm really not convinced that he'd even be receptive to oral-motor exercises at this point, so my saying this is not a complaint, just an observation.

My point is that nothing - absolutely nothing - happened during three and a half months of speech therapy that we don't already do with Finn.

On the list of positives, the SLP had a really good rapport with Finn. He liked her a lot, and would often crawl into her lap and give her his famous great big hugs.

He is most definitely using more signs now than he was three and a half months ago, and more spoken words (though they are difficult to understand, and I doubt anyone outside of his immediate family would understand the words he says), but I think it's just the natural progression for Finn. He'd be exactly where he is now without the speech therapy.

So I'm disappointed, not because it didn't yield more results, but because I just don't know what the point was. This SLP is supposedly THE BEST. She's very reputable and well known in the community among parents who have children with speech and language delays. I'm not sure, at this point, exactly what criteria makes a SLP good at what they do.

Anyway, we're done now. Her contract with us is up as of today, so this morning was our last session (she showed up twenty-five minutes late, and with her bored assistant). When we said goodbye, that was it - no ceremony or emotion. Not that I expected any.

Sigh.

Down Syndrome Awareness Month: Early Intervention/Therapy

2010-10-24T20:16:00.000-07:00

I've been struggling to write this post for a couple of days now, writing it and rewriting it, abandoning it and then restarting. Although this is an important topic that I think warrants discussion during Down Syndrome Awareness Month, I seem to be having trouble finding the right words, and I don't want this to come off as a rant against Early Intervention and therapy.

The truth is, though, that I'm not a fan of Early Intervention or therapy - at least not for babies . . . at least not for babies with Down syndrome . . . at least not for my baby with Down syndrome.

Early Intervention is something I've spent much time agonizing over during the two+ years of Finn's life thus far. Is Early Intervention really necessary? Is it even actually beneficial in any real, tangible way? What about the downside? Do the supposed benefits outweigh the inconvenience and intrusion on our family? Does it foster a perspective of Finn being "defective" in some way?

When we learned that our baby had Down syndrome, the first "line of defense" offered to us - when he was a mere few days old - was the therapies and services available through the State, collectively known as Early Intervention. I remember that, in my sleep-deprived, shell-shocked, grieving state, I was taken aback by the social worker who sat in a chair across from me in Finn's little room in the NICU, telling me that Finn would need to go to "baby school." "As a newborn?" I asked. "Well, you want him to be the best he can be, don't you? Of course you do. Then yes, this is what you will need to do for him," she told me very matter-of-factly.

And so it goes for most new parents of a baby diagnosed with Down syndrome. The weakest spot in any parent's armor is a place where fears and hopes reside, and where guilt can magnify those fears and hopes. Add in a diagnosis, and the weak spots are even further compromised. What does it all mean? Will therapy make him more "normal"? Will lots of hard work help him overcome his disability? Can we manipulate him to be minimally impacted by his diagnosis? Should we try to?

So within a short time after Finn was released from the NICU and came home with us, there began a parade of social workers and therapists who came out to our house to examine and evaluate Finn and construct his first IFSP (Individual Family Service Plan) which contained developmental goals for him to strive for, and a plan of action to achieve those goals.

Over the two+ years of Finn's life, we have undertaken PT (physical therapy) for the first year and a half to address gross motor skill delays, OT (occupational therapy) for the past eight months to address feeding issues and fine motor skill delays, and ST (speech therapy) for the past three months to address speech delays. Has any of it made a difference? No, I do not believe so. Having had five babies before Finn, I clearly see that Finn, just like all his siblings before him, continues to progress, master skills, and reach milestones on his own time line. I cannot attribute a single gain he has made directly to therapy.

I know this is a controversial and, frankly, unpopular position. There are a lot of families out there who are firm believers in therapy, and the more the better; families who believe that early intervention services is going to make a huge long-term difference in their child's skills and abilities, and that they should fight for every service available because their child is entitled to them. I'm just not one of those parents. I've watched my other kids master skills and develop their own strengths and talents in their own time, and Finn is no different - his time line is just a little different, that's all.

And yet, even having had five babies before Finn, and seeing them all do things a little differently (one walked at 12 months, and another not until 16 months; some talked earlier than others, some potty trained earlier than others, some became voracious readers at age 5, and some didn't; I could go on - seriously, watching my kids is like watching a live science experiment), I still got sucked into the whole Early Intervention mindset when Finn was a newborn.

If I had it to do over again, knowing what I know now, I would opt out of Early Intervention altogether. I wish I hadn't expended so much energy agonizing over it - will it help him? am I cheating him by not having him in more therapy? or is this all just a waste of time? I wish I hadn't expended so much energy being resentful of demeaning and dehumanizing evaluations, of therapists who can't be on time, of the intrusion on our life as a family. I wish I had had utter faith that Finn would do his thing in his own time.

Hindsight is 20/20.

I've become a big believer in life as therapy. I think Finn's best therapists are his family members - the people who spend every day with him, who love him and shower him with affection, who act as role models for him, who encourage him by including him - not the Early Intervention therapists who spend an hour a week with him.

I also believe that I can serve Finnian best by being a loving parent to him and not a therapist. I don't think every interaction with him should be therapeutic or designed to encourage some skill. What a drag for him that would be, to constantly be in "student" mode. But this is another pressure a lot of us parents seem to feel - that we constantly have to be interacting with our children with Down syndrome in a productive, educational, and therapeutic manner.

I think it's possible that Finn will benefit more from interventive services when he's older. Just like trying to teach a a person how to drive a car or do calculus is far more productive when they're sixteen rather than five, I think the same can be said for Early Intervention; they probably get a lot more out of it when they're older, when their brains and bodies have matured enough to absorb it all.

Along with this, I think it's imperative to respect their limitations. A child with Down syndrome is never going to have the same global abilities and skill levels as a "typical" child. That's just a fact. And it's a bitter pill to swallow when you've been given the shocking news that the baby you have is not the baby you thought you were going to have. But if we, as parents, can make peace with that - that, yes, "more alike than different," but still different, and different is okay, I think we could save ourselves a lot of heartbreak and angst. I truly think that in this way, Early Intervention is destructive - it fosters a mindset that our children are broken and can be fixed, that life is more valuable the more one is able to achieve. I don't want Finn to grow up feeling that we see him in that way, and I don't want my other kids to see Finn that way.

That is not to say that skills and abilities should not be encouraged, or that we should just let our children languish. I just think that children with Down syndrome - at least babies with Down syndrome - learn the same way their typical peers do: by being allowed to be inquisitive, by being allowed to explore, by being loved and played with and stimulated with talk, song, hugs, and play.

We quit physical therapy almost a year ago, and I've never looked back. Finn has continued to master gross motor skills in his own time, most recently by taking his first independent steps and within a couple of weeks becoming an almost full-time walker. Pretty soon we will be opting out of OT and ST, thanks to new regulations here in California which require families to procure services through their health insurance carriers before the State will cover them. Our health insurance carrier has approved coverage for services for Finn, but practically speaking, what they're offering us is too inconvenient to be feasible for our family. I am actually relieved. I finally have an out - we can quit Early Intervention and I don't have to feel bad about it.

I don't know what will happen next summer when Finn turns three and ages out of Early Intervention and becomes the responsibility of our school district. I'm not so sure that I'm going to jump to send him to preschool when he's three. I'll cross that bridge when I get to it, but what I do know for certain now is that I'm not a fan of going along with what is prescribed if I don't actually feel it's in the best interests of my child and my family, taking into consideration our unique circumstances, needs, and goals.

So if I had the opportunity to speak to new parents of babies with Down syndrome about Early Intervention, I'd tell them this: consider your options. Consider putting off therapy for six months or a year, and just spending that time falling more and more in love with your baby. Consider minimizing therapy and only doing it once a month. Consider refusing any services that don't meet your family's needs (like services that require you to drive across town, or services with time slots available only during what is your child's nap time). Consider opting out altogether.

There is something to be said for just being.

Finnian And the Case of the Disappearing Sandwich

2010-10-21T21:14:00.000-07:00

This was Finn's lunch today. A sandwich. Peanut butter and honey on whole wheat bread.

He has come so far with eating. It doesn't seem all that long ago that I was crying over avocados (okay, so it was six months ago), feeling pretty hopeless about his feeding issues and wondering if he'd ever eat table food. He eats pretty much everything now. He even swiped a slice of pepperoni pizza off the table when my back was turned last week, and he ate the whole thing.

Our cupboards are not bare of baby food just yet. I still resort to it when I need to get him fed quickly, because the truth is, it took him a solid half hour to eat that sandwich. But he ate it. All by himself.

Finn's First Shoes

2010-10-20T14:24:00.001-07:00

Now that Finn is walking more and more, I figured it was finally time to get him his first pair of shoes. I wasn't sure how he would react to having something on his feet, as he's never worn shoes before (I've put shoes off with all my kids until they were walking), and I've never been able to keep socks on him. So he's been a barefoot boy for over two years now.

I was a little torn on what to go with for him. Do we put him in some kind of "special" shoe? He doesn't wear orthotics, and, though I'm not an expert, I haven't noticed anything indicating that he needs orthotics. So "special" shoes (whatever those might be) seem kind of unnecessary. I decided to start with Pedipeds. These were the first shoes Lilah wore, and I loved them. They're all-leather, soft-soled (but durable enough for outside), and lightweight - in other words, not too cumbersome or restricting. Plus, they're super cute, and when you're a cool little dude like Finn, you gotta have the stylin' kicks.

But alas, he figured out very quickly how to take them off. So we'll see. I sure do like these shoes. But I think I'll try some Converse sneakers that tie next.

Down Syndrome Awareness Month: Siblings

2010-10-17T13:37:00.000-07:00

Down syndrome n. congenital disease marked by mental deficiency

Really, Webster? A disease? Come on, seriously? My brother is not diseased. He's a healthy kid who happens to have Down syndrome. He walks and gives hugs and knows his own bedtime routine. Which is more than we can say for you, Webster. All you do is give misleading definitions. Ha.

My brother's name is Finn, and I love him to death. He has blond hair, blue eyes, a great smile, and likes to dance to the Rolling Stones. And if you look closely, yes, he has Down syndrome. So . . . what's the big deal? One extra chromosome in each cell, right? I mean, the more, the merrier! But sadly, lots of people don't seem to agree with me. Why? Is it the eyes? Do you not like the way they slant? Sorry, can't help you with that one. Could it be the way his tongue sometimes sticks out? Well, I'm sure that at some point in your life you did the same thing. No? Oh, I got it this time. It's because he's different. Well, here's a newsflash - we're all different anyway!!!

I love having Finn for a brother. Having him in my life has taught me so much. I've learned lessons so much more important than whatever I've learned in math or language arts (sorry, guys). Lessons about respect and equality. In all the ways that count, however small, Finn has made the world a better place. At least my world. If not for him, I:

- would not have made a speech in front of my school about the r-word
- would never have understood disabilities
- would have had less respect for those with disabilities
- would not have a problem with the r-word

And if not for the speech I gave at school, I would not have taught others about the r-word, and that's only, what, a couple hundred people unaware of the discrimination? Unfortunately, some were left unaffected, though, because the word "retard" is still thrown around at my school (sometimes)! I mean, man. Some people just don't get it! But some people do.

Well, that's it. I love Finn, and he's one of the biggest parts of my life. After you get past the whole Down syndrome thing, he's just a human being. Just like me. Just like you.

***

As you can see, Kevin is very protective of his brother. The oldest of our kids, Kevin definitely has a better grasp than the other kids do of what Down syndrome is, what its implications are, and he is more aware of the ways in which Finn is different - different from the siblings that came before him, and different from other kids his age.

Our other kids don't really have a deep understanding of what Down syndrome is. Joey (age 8) and the twins, Annabelle and Daisy (age 6) know that Finn has something called Down syndrome, and we've told them in the simplest terms, appropriate for their ages and level of understanding, that there are a lot of people who have Down syndrome, that they're all different, and that, as far as we can tell right now, what it means for Finn is that maybe he looks a little different, and it takes him a little longer to learn how to do stuff. They're cool with it. Really, it's just so abstract to the younger kids at this point. Lilah (age 4) - who is very, very attached to Finn - I don't even think she knows that he has something called Down syndrome. She wasn't even two yet when he was born, and it seemed pointless to try to explain it to her back then, and it hasn't come up for her yet.

All the kids really adore Finn. They dote on him. I don't want to say, though, that they adore him any more than they've adored or doted on any of the other babies that have come into our family; I don't believe they love him any more or differently because he has Down syndrome. It's just that, yeah, he's kind of staying a baby for a little longer, so he's enjoying the kind of attention from his siblings that they've showered on each baby, just longer.

I think one of the prevailing misconceptions out there in the general public is that having a child with Down syndrome will negatively impact the other children in the family. It's just not true. My kids don't see Finn as a drag. Finn definitely has the role of The Baby in the family, but he fits right in. They shower him with affection, they include him in their play, and yes, sometimes they get mad at him if he gets into something of theirs. I think the biggest negative impact I've seen on my other kids is Finn's therapy and how intrusive that can be on our routine and family time - but I'm not a big proponent of early intervention, so that is most likely my own feelings that don't even register with the kids. The fact that Finn has Down syndrome does not in any way affect the things we do as a family, or the other kids' ability to do the things they want to do. We do the things most other families do: we go to the park, we go for walks, we go out to dinner, we go shopping, we play games, we have picnics, we have dance parties in the living room. We took a family vacation this past summer. The kids play Little League, they are enrolled in music lessons and dance classes. Having Finn hasn't taken away from any of that.

One day, a long time from now, it's true that Finn's siblings might be required to step up and take on some role of responsibility for Finn. I guess that can be looked at as a possible burden. I'd like to think, though, that my kids will have compassion so ingrained in them that they won't see it as a burden. It would be nice to think that in any family, even so-called typical families, the kids grow up to be loving, compassionate adults who would help their siblings out if the need arose. Because the fact of the matter is, even families without Down syndrome have trials and hardships. Shit happens. And none of knows what tomorrow will bring.

I don't believe that Finn landed in our family at the hands of some divine force for the purpose of teaching us anything. But I do believe that as a natural consequence of having Finn in our family, each of us in our family is learning some very valuable life lessons - and the kids, who are naturally so much more open to these lessons, are soaking it up. Compassion, tolerance, and kindness to all people. My kids are growing up knowing that different isn't a big deal, and that we're all different in our own way anyway. They are growing up with an absence of prejudice, and absence of fear of those who are different from them. They are growing up with the belief that everyone deserves kindness and respect, and that the world has room for everyone, no matter what their abilities, skin color, or beliefs are. They are growing up knowing that they are no better or worse than anyone else. They are learning about devotion to those they love. They already understand that every human being has value.

Monica & David

2010-10-15T08:56:00.000-07:00

If you haven't been privy to all the buzz, a film aired on HBO last night titled Monica & David. It's a documentary, filmed by the cousin of the Monica in the title, showing a glimpse into the lives of two adults who have Down syndrome. Monica and David, the film's subjects, met at their adult life skills program, fell in love, and got married. The documentary shows the wedding, and a window into their life together for the year after their wedding.

I'll just say right off the bat that I did not find this film uplifting. Which is not a bad thing, just a fact. It's a film that makes you think. It makes one ponder the realities of life as an adult with Down syndrome, and the realities of their families. I was crying at the end . . . but not for the same reasons I cried when I watched Deedah. I find myself in a funk this morning, turning the film over and over in my head.

Most of the parents I've gotten to know through the Down syndrome blogging community are, like I, mired in life with a baby or child with Down syndrome. We are still striving, working towards something, full of hope and fantasy and idealism about the future. It is next to impossible for me to visualize Finn beyond babyhood/young childhood. That is not because he has Ds, it's just how it's been with all of my kids - I just can't fathom them very far beyond where they are now. Each step in the progression of life brings a new reality concerning all my children; ten years ago I would not have been able to imagine Kevin as a teenager, and yet, here he is today, a bona fide teenager. I can't really picture him as a man, but one day he will be just that, as will Finn.

In Monica & David, they've arrived. They are the adults that our kids will one day be. Not that our kids will be exactly like the two individuals featured in the film, but probably something somewhat close to that. Like all people, typical and atypical, they will continue to progress in their abilities and knowledge, but the progress will be measured in much smaller increments. For all intents and purposes, they are where they will remain.

So what I found about the film is that it's a very honest look at the lives of adults with Down syndrome. It was not a film meant to sugar-coat, and it doesn't sugar-coat. If you see the trailer or read a blurb anywhere summarizing the film, you might be led to think, "Oh, wonderful! Two adults with Down syndrome getting married and carving out a life together for themselves." But that would not be a completely true synopsis. Yes, these two individuals with Down syndrome fall in love and get married. And the love and affection and devotion between them is incredibly inspiring and moving, it really is. But what you also get to see is that they dream of having children just like a lot of other married couples - yet they can't, and they don't even know it. What you see is that neither of them seems to have a good grasp of what Down syndrome is, or that they have it. What you see is that yes, they are married, but they live with her parents and are almost completely dependent on them.

None of this is bad. It is what it is. But it's certainly eye-opening.

I think so many of us who at this stage have very young children with Ds hold onto the fact that our kids have been born in a different era; so many advances have been made in medical care for individuals with Down syndrome, as well as therapies to address their developmental impairments. A lot of us hope - some even adamantly believe - that it will be different for our kids. That if we do enough therapy, feed them the right concoction of vitamin supplements, and send them to the right schools, it will be different. They will one day hold real jobs and live independently. That's the ultimate goal of all this work we're investing in them now, right? That they will one day live independently.

Me? I don't pin a lot of hope on that for Finn. It's not that I'm a pessimist - I consider myself a realist. I believe it's possible that he'll one day live independently, but not highly likely. And in all honesty, I am okay with that. I have pretty much accepted that chances are really good that he will always be dependent on us. And gosh, we have the perfect setup: we actually have a separate apartment downstairs, with its own kitchen and everything. If I weren't in my right mind, I might think that some divine force was at work when we bought this house five and half years ago - long before Finn was even a twinkle in our eyes.

What scares the shit out of me is knowing that we are 40 years older than Finn, and if he lives to be in his 60s, well, it's not hard to do the math and realize that we won't always be here for him. That, my friends, sends a cold jolt through me at times and keeps me laying awake at night in semi-panic. I can't bear the thought of him ending up in some institutional setting, so I can only hope that his siblings will be able and willing to look out for him when the time comes. But what about their future spouses? What if they're not willing?

Auughhh. The stress of this will surely take years off my life.

And you know what? What really makes me sad about it all - and ultimately what I think left me feeling sad about the film - is that this honest dose of reality makes it really difficult to advocate for the lives of babies with Down syndrome. I suspect there are three main camps of people who will watch Monica & David:

- Families of adults with Down syndrome who will be able to relate on many levels;
- Families of babies and young children with Down syndrome who will feel like a bucket of cold water has been thrown on them;
and
- People who have no relation to anyone with Down syndrome who might have their feelings confirmed by the film that it's not a life they'd want - to raise a child who will always be dependent.

I know that Finn's life is worthwhile, as are Monica's and David's lives. But can the world see that? No amount of talking or advocating is going to convince anyone. Unless you're living it, it's just really hard to fathom.

Down Syndrome Awareness Month: Stereotypes

2010-10-12T14:52:00.000-07:00

Women . . . they just can't make up their minds.

Black people are such good athletes.

Jews are naturally frugal.

Men - all they care about is their work.

Italians are such good cooks!

Do you see a theme here? It's called stereotyping. Stereotyping is a form of prejudice - even when the notions involved might be seen as positive - because it indicates an unwillingness or inability to see different classes of people outside of the molds that have been created for them by society.

Don't you think that the above statements are offensive?

What about these:

Children with Downs are so loving!

Oh, I LOVE Downs people!

Downs people are always so happy!

These are statements that we parents who have children with Down syndrome hear ALL. THE. TIME. And they always come out of the mouths of people who are not themselves parents of children with Down syndrome.

Those statements seem positive and complimentary, don't they? And, seriously, who wouldn't want their kid to be happy and loving all the time? The problem is that these comments reinforce stereotypes about Down syndrome and don't allow room for individuals with Ds to be actual human beings. It turns them into caricatures, one-dimensional creatures devoid of true feelings, opinions, and personalities.

Let me just clear some things up here -

First of all, you don't KNOW Down syndrome unless you live with it day in, and day out. I don't care if you volunteer with people at your church who have Down syndrome, or if your best friend's cousin has Down syndrome, or if you shop at a grocery store that employs a person with Down syndrome - that does not make you in the know about Down syndrome. I don't even care if you've researched Down syndrome at length, or if you're a therapist or teacher who works with kids who have Ds; trust me, your knowledge and experience is defined by the limitations of the context of your relationships with these people, so you're still not witnessing or experiencing the entire, broad context of knowing Down syndrome. And even if you do have an intimate relationship with somebody who has Down syndrome, you only know that person and how Down syndrome manifests in him or her. So for anybody to say, "Oh, I LOVE people with Down syndrome!" - well, it just rubs me all kinds of wrong. And I hear it a lot. So stop it.

Moving on, let's talk about this popular notion that people with Down syndrome are extraordinarily happy and loving. I don't know where these ideas come from. I suppose it can be argued that all stereotypes have some basis in reality (maybe the cognitive impairments associated with Ds leave individuals with Ds generally unfettered by the prejudices and stresses so common in the general population?). Maybe some day when Finn is all grown up, I'll be eating my words - maybe he will, in fact, fulfill the happy, loving image so many people seem to have - though, if that happens, I'd like to be able to chalk it up to a loving, nurturing upbringing and not just that he's too stupid to be anything but happy. So far, I'm not seeing it, though. He's only two, but he shows us a full range of emotions all the time. He can be damn crabby. He's stubborn and determined. He's resistant to things he doesn't want, and shows a clear preference for certain things. He gets mad. He gets frustrated. And yes, he is affectionate and loving.

He's a person. A real, flesh-and-blood person. Just like you are, just like I am.

And that brings me to another popular notion: that people with Down syndrome are God's special angels. Okay, it's no secret that I don't believe any of that hooey, but I'm not going to debate religion or divinity here. I just want to say, though, that assigning special, divine purpose to people with Down syndrome - or to anyone! - wow. That's a lot of pressure, a pretty high calling to live up to, folks.

Finn is human, not superhuman, I can assure you. The state of his genetic makeup can be broken down very scientifically - he's got an extra twenty-first chromosome in each cell of his body. This happened on a certain night in October, 2007 when Mom and Dad got to feeling a little frisky, and a certain sperm nailed a certain egg, and whamo! The chromosomes went just a tiny bit haywire and voila - Trisomy-21. So these bonus chromos of Finn's give him certain traits, like crooked pinky fingers, slightly up-slanted eyes, and, yeah, a lower-than-typical IQ. The end.

He's not a cartoon character, or an angel, or a clone of every other person with Down syndrome. He's a unique individual. He's human. A real person.

Down Syndrome Awareness Month: Breast Feeding a Baby With Down Syndrome

2010-10-07T12:51:00.001-07:00

DISCLAIMER: I do have a decidedly pro-breast feeding bent. However, this post is not intended to judge or criticize anyone who chooses not to, or who for whatever reason can't, breast feed. My intention is only to share my own experience in the hope of correcting some misconceptions and giving hope and encouragement to any new moms out there who would like to breast feed their new baby with Down syndrome.

***

One of the many widely-held misconceptions about Down syndrome is that babies with Down syndrome won't be able to breast feed. This notion, I think, is propagated by medical professionals who, sadly, are still a generation or two behind in the perceptions they have about Down syndrome in general (this outdated knowledge base is also a factor behind the high termination rate in prenatally diagnosed cases of Ds, but I'll get to that in another post).

I'm not a medical professional or a trained lactation expert. I'm just a mom who, before Finn was born, successfully nursed five babies for the long-haul, and was determined to breast feed my sixth baby who has Down syndrome. And I'm here to tell you that the notion that babies with Ds can't breast feed is misguided.

Breast feeding a baby with Ds can be challenging. The two main things associated with Ds that can hinder breast feeding are low muscle tone, and immediate and prolonged separation of mom and baby due to issues the baby might have that require a prolonged stay in the NICU. These two scenarios are not a given with all babies with Down syndrome; not every baby with Down syndrome is faced with difficulties in breastfeeding to begin with, but difficulties are not uncommon.

One of the most common traits of babies and people with Down syndrome is hypotonia, or low muscle tone. What this means is that their muscles tend to be lax, and their overall posture in infancy might be described as "floppy." This low muscle tone can hinder a baby's ability to effectively latch on and suck, and a poor latch and a weak suck hinders mom's ability to produce milk, and so a vicious cycle is set in motion: the baby has trouble with latch and suck, therefore mom doesn't produce ample milk, therefore the baby doesn't get enough and gains weight poorly, therefore supplementation with formula may be implemented, causing the baby's interest in the breast to lessen, resulting in even less milk production by mom, resulting in complete abandonment of breast feeding and a confirmation of the belief that babies with Ds can't breast feed.

The other scenario occurs when a baby with Ds is born with medical issues that necessitate separation from mom, and perhaps precludes oral feeds. The inability to establish breast feeding within the first few hours after baby's birth can definitely inhibit breast feeding, and certainly the longer mom and baby are unable to nurse because of the baby's medical issues, the harder establishing breast feeding will be.

Combine those two situations and you definitely have an uphill battle!

However, with perseverence and the right kind of support, in a lot of these cases the hurdles can be overcome, and a happy breast feeding relationship can be established.

Since I'm not a trained lactation expert, I won't try to set forth specific techniques on how to overcome the challenges most commonly faced in breast feeding a baby with Down syndrome, but I'll share my own experience with Finn:

Finn has always actually had pretty good muscle tone. I'm sure he's got lower tone that his "typical" peers, but he's never been noticeably "floppy" or overly-flexible. So whether low muscle tone played a part in our nursing challenges, I really can't say.

What did most definitely stand in the way was his almost immediate hospitalization and inability to take oral feeds for over a week. As I described in my last post, Finn was born at home, and we had him at home with us for roughly a half a day before we had to rush him to the ER because he was spitting up blood. In those first few hours after he was born, he was so sleepy, and he never really woke up enough to latch on well and nurse. Then we took him to the ER where he was hooked up to all kinds of tubes, wires, and monitors. By that evening, he was diagnosed with an intestinal blockage and admitted to the NICU. He had surgery the following morning to correct his duodenal atresia. This was major gastric surgery which involved a 3-inch incision in his abdomen, cutting the ends of his unattached bowel and attaching those ends, and also the removal of his appendix while they were at it. While his intestines healed, he could not take any nutrition by mouth; he was fed intravenously for several days before I was allowed to attempt nursing. My milk came in during that time, and I began pumping at regular intervals around the clock and storing my milk for him to take when he would be able to. I already knew that he'd most likely have to start with bottle feeding, and it became clear to me pretty quickly that we had some major challenges ahead of us.

I was pretty heartbroken at the prospect of possibly never being able to nurse him. For me personally, breast feeding is just a huge part of how I mother my babies, and I could hardly fathom not being able to share that with Finn.

Fortunately, when he was ready to tolerate oral feeds, the nurses in the NICU were pretty supportive of my desire to breast feed, though it was frustrating because everything in the NICU had to occur by the clock and by the numbers. He had to be fed on the schedule the nursing staff set down for him, and if I couldn't make it to the hospital in time, he was given a bottle (of breast milk). If I was there to nurse him, he had to latch on within a certain number of minutes or I was made to call it quits and give him a bottle. The same went if he didn't take the prescribed number of ounces in the time allotted (they would weigh him on a specially-calibrated breast feeding scale before and after I nursed him to see how much he had taken; if he spit up, the napkin he spit up on was weighed and subtracted from the number of ounces he had been fed). It was all very stressful, and I spent a lot of time crying. The stress and the pressure didn't go very far in helping us get a good breast feeding relationship established. There were lactation consultants on hand, and they were helpful, but all in all, it was a frustrating, discouraging situation.

Convinced that Finn would do better at home where I could nurse him around the clock without the constant supervision and vigilance of the nursing staff, I couldn't wait to get him out of the hospital. When he was discharged twelve days after he had been admitted, we were nursing, but it was hit or miss, and I was using nipple shields because he seemed to do better with the rigid shape of the shields which were similar to the bottle nipples he was already becoming used to. I would nurse him and then Michael would follow up with a bottle of expressed breast milk to make sure he was getting enough.

As I suspected, he did seem to do better once we got home, and within a couple of days I was able to ditch the nipple shields. He was latching on well (it seemed), and nursing well (it seemed). It wasn't long before we stopped supplementing with bottles of breast milk, and I was exclusively nursing him.

However, he wasn't gaining weight. He was 6 pounds even at birth, and lost the typical several ounces that babies lose directly after birth, then lost more after his surgery. I think in the NICU he went as low as around 5 pounds. By the time he was discharged, he was back up to his birth weight, but a week after being home, he was still at 6 pounds, and after another week or so, he only gained an ounce or two.

I'll never forget our pediatrician - whom I love for the most part - sending me home with several cans of formula and telling me that Finn most likely just wasn't going to ever be able to nurse well because of his Down syndrome. I was devastated. None of my babies had ever received formula, and I felt like a failure.

Fortunately, my midwife insisted that (a) if I was going to supplement, it should be with the breastmilk I had stored while Finn was in the NICU, and (b) I needed to find a really good lactation consultant. I did both. I found a lactation consultant who refused to believe that Finn wouldn't nurse because he had Ds. Yes, it was going to be a challenge, but it could be done, she insisted. She set me up with a SNS (supplemental nursing system) and spent oodles of time with me and Finn over the course of several appointments, observing us and giving me tips on positioning, etc.

Despite my perception that Finn had learned how to latch and nurse well, it apparently wasn't the case, and because he actually wasn't latching properly and his suck wasn't great, my milk production went down, so he wasn't getting enough, and the cycle was set in motion. With the LC's help, though, we were, finally, over time, able to overcome the hurdles that were in place. Unfortunately, my milk production never recovered on its own and I began taking herbal supplements to increase my milk production (fenugreek and blessed thistle), which helped to a degree for a time, but eventually I began taking Domperidone, which helped immensely, and really, was the final missing puzzle piece for us.

At twenty-seven months old, Finn is still nursing. He's had a couple of nursing strikes during periods of teething, but he's come back to it each time. At this point, it's probably as much for me as it is for him. He's my last baby, and I guess I'm having a hard time letting go.

Getting breast feeding going was definitely an uphill battle for us, but through perseverance and good support, we were able to make it work, and it's been completely worth it to me.

Writing it all out at this point, I can see how it might look more daunting than it's worth. Not everyone will want to go to those lengths (and not everyone will face the same, or any, difficulties). But for anyone who has their heart set on breast feeding their baby with Down syndrome, I guess the moral of my story is that it can be done.

Down Syndrome Awareness Month: Receiving the News

2010-10-05T12:45:00.001-07:00

October is Down Syndrome Awareness Month. Unfortunately, I couldn't commit to taking part in the 31 for 21 Blog Challenge this year (boo!), but there are a few topics near and dear to me that I would like to write about during this month.

A question that's been posed to me over and over since Finn was born is "Did you know he had Down syndrome before he was born?" The answer is no, I did not.

The next question is usually, "Didn't you have prenatal testing while you were pregnant with him?" And the answer to that is also no, I did not - with the exception of a mid-pregnancy ultrasound.

I've written about my experiences with regard to these questions in detail over the life of this blog, but for anyone who hasn't followed our story from the beginning, here it is in a nutshell:

Finn is our sixth baby, and, ironically, the only pregnancy during which I did not undergo any prenatal screenings for genetic abnormalities. I say ironic because I did do the usual screenings with all of my other pregnancies. With Kevin, my first pregnancy, I was 29 years old, and at that point in my life I was a very passive patient who just went along with whatever the doctor ordered, no questions asked. So when the AFP blood panel was recommended as a routine screening at 15 weeks, I did it, without ever giving it too much thought. Same with my second pregnancy. By the time I was pregnant for the third time (with twins), I was 36 years old, and it was recommended that I undergo an amnio because of my "advanced maternal age." I declined, as I was unable to justify the risks in my own mind. I did, however, submit to a First Trimester Screening, which consists of a detailed ultrasound which specifically examines the nuchal folds on the fetus's neck (which can indicate a genetic anomaly) in conjunction with a specialized blood panel. When I was pregnant with my fifth baby at age 38, I again declined an amnio, but did undergo the First Trimester Screening again. Lilah was a planned home birth (I was, by then, a much less passive patient!). However, because of early pregnancy bleeding, I was under the care of both my midwife and an obstetrician for about the first half of my pregnancy.

When I look back now, I realize that each time I was pregnant and underwent prenatal genetic screenings, I did it, for the most part, under the assumption that everything would come out okay - normal. I don't remember ever really suffering through much anxiety over the test results. I just did the screenings without a whole lot of thought, because that's just what you do, right? I don't think I ever gave much thought to what I would do if any of the screenings came back showing something unexpected. I just don't think it really occurred to me that anything like that would happen to me - I couldn't envision it. Not that I felt I was special or anything, but . . . I guess on some level, I figured I had already had more than my share of unexpected and devastation elsewhere in my life - what were the odds of lightening striking yet again?

I was 40 years old when I got pregnant with Finn. By then I had completely washed my hands of conventional obstetrical care. Finn was going to be another planned home birth, like his sister Lilah was, only this time, no obstetrical involvement. I put myself completely in the care of my midwife. Even so, I could have undergone whatever prenatal screening I wanted, but I opted out of all the screenings except for a mid-pregnancy ultrasound, mostly because I was dying to know the baby's gender, and because I figured if there were any serious anomalies that would preclude a safe home birth, it would show up on the ultrasound. The ultrasound showed a perfectly-developing baby boy, and we were thrilled - the score would be evened: three girls and three boys.

During my last trimester, I began to retain A LOT of amniotic fluid. I developed polyhydramnios. By the end of my pregnancy, I was as big with Finn as I had been full-term with my twins. My midwife and I knew that polyhydramnios could be an indication of an abnormality, but neither of us were overly concerned. After all, I had had the ultrasound which didn't turn up anything irregular. She kept a close watch on me and the baby, and we were both doing fine.

I went into labor at right around 38 weeks with Finn. When my water broke, the amount of fluid that gushed and gushed was unbelievable. He was born in the wee hours of the morning on July 7, 2008. The birth itself went just fine, though the whole thing took quite a physical toll on me. All the excess fluid and the extent to which my uterus had been distended kind of put my body into shock, and I could barely stand up without help after Finn was born (it was the same after my twins were born).

We were very surprised with how big I had gotten to see this tiny 6 pound baby emerge. I was so exhausted by the birth that I don't think I was completely lucid or able to focus on details. I was surprised by Finn's small size, but noticed nothing troubling about him. Michael was concerned about how the baby's abdomen looked - it appeared distended. I couldn't see what he was talking about. I just needed to rest. Our midwife stayed for a couple hours after the birth and then went home. Later I learned that she did not go home to sleep, but to pull out her textbooks and do research. Something about the baby didn't seem quite right, but she didn't want to alarm us, and nothing seemed life-threatening, so she went home to gather information before bringing anything to our attention.

I slept. The baby slept. I woke every so often and tried to nurse him, but couldn't get him to latch on. I was too exhausted to be concerned. I knew that babies are born with a reserve of fat and that they could actually go a day or so without feeding after birth and be fine. Besides, I remembered that it took some time for some of my other babies to become alert enough after being born to nurse. Finn didn't pee or poop either during those first several hours. I wasn't concerned. I was too tired, and my whole body hurt. I felt like I had been run over.

My midwife came back early in the afternoon of July 7 to check on me and the baby. While she was there, Finn opened his eyes for what seemed like the first time. I will never forget that moment. I saw it in his face then, that he had Down syndrome. It was fleeting, and I pushed the thought away. No, it can't be, I told myself. I didn't say anything. I noticed that Sue, my midwife, was doing an extremely thorough exam of the baby - way more thorough, it seemed, than she had done of Lilah when she was born. Still, I refused, or was unable, to register that something might be amiss. Then she showed me his palms, how they each had a single line crossing them (which I had never seen or even heard of before), and she gently said, "You might want to bring this to your pediatrician's attention when you take Finn in." "Why?" I asked. "Because," she said, "it can sometimes indicate certain genetic anomalies." I went cold then. "Like what?" I asked. But I knew what she was going to say even before she said it. "Down syndrome."

Things got crazy shortly thereafter. Finn was by then about 12 hours old and still had not nursed, nor peed or pooped. Suddenly he started spitting up blood, and that was really the beginning of the rug being pulled out from under us. Leaving our midwife with our other kids, Michael and I had to rush our newborn to the ER where over the next several hours he would be hooked up to an IV, have a tube fed into his stomach to flush it repeatedly, and undergo a number of exams and tests which would eventually show that he had a duodenal atresia, which explained my polyhydramnios, and also explained why he wasn't peeing or pooping. He was admitted to the NICU, and we went home that night with empty arms. The next morning, at one day old, Finn underwent major abdominal surgery to correct the duodenal atresia. Relatively speaking, in the gamut of abnormalities and surgeries, this was fairly straightforward and routine, but it was, of course, devastating to us to have to leave our baby and to see him struggle to recuperate from the surgery. He spent 12 days in the NICU, and it was during that time that we received confirmation via a blood draw that he did, in fact, have Down syndrome.

Sometimes I wonder, looking back, if the news of his Down syndrome might not have been quite so crushing had we not also been dealing with his having to have surgery and to be in the hospital instead of at home with us. It all seemed to compound it.

Nonetheless, I really feel that his diagnosis was delivered to us in the most gentle and humane way possible. Really, Finn himself was the first one to tell me, when he opened his eyes and I saw it in his face for that brief moment. I wasn't ready to accept it then, but there it was. I actually hold that moment as very precious now. My midwife suspected almost immediately after he was born based on different observations she made, but she wanted to be sure before she said anything, and she wanted to give us time to bond with him and get to know him without a scary diagnosis standing in the way. I will forever be grateful to her for the way she handled it. And the doctors at the hospital were very kind when his diagnosis was confirmed. Not one of them ever painted a grim picture for us of Finn's future, and as I sat there hour after hour, day after day, crying and trying to come to terms with it all, it was the doctors and nurses who told me over and over, "Who knows what he'll be able to do? Just wait and see."

There's really nothing I'd change if I could. I don't at all regret not having prenatal testing - I'm glad I didn't know until after he was born. I had the luxury of just enjoying being pregnant and being excited about the coming arrival of another new baby. Had I known beforehand, I know myself well enough to know that I would have been scared and depressed - it would not have been the joyful experience it was. And knowing beforehand probably would have induced me to give birth at a hospital instead of at home, which I know I would have regretted.

I'm glad that Finn was born at home. Not that I'm advocating home birth (I'll save that for my other blog!), but for me, it was the best thing. Giving birth at home allowed me a measure of love and support I never had with any of my hospital births. Finn was born into loving hands, in surroundings comfortable and comforting to me, and we were given hours and hours to be with him and love him without a diagnosis getting in the way. It would have been a whole different story had he been born in the hospital. A number of people seem to think the whole thing might have been better, or safer, had he been born in the hospital. I am here to say that that is just not the case. Being born at home did not cause his Down syndrome, and wouldn't have changed the outcome of his duodenal atresia. Being born at home was the best thing for him and for us, and I'm extremely thankful.

And that's the way it unfolded for us.

And He's Off!

2010-10-02T15:28:00.000-07:00

This footage is from this afternoon, but Finn did his first real walking last night. Over the last month or so, he would occasionally take two unassisted steps when moving between furniture, but real, honest to goodness walking? I swear I've lately been feeling the beginning of a faint despair, wondering why he hasn't really walked yet. Watching him tear around the house behind his push toy, and even stand unassisted in front of a mirror and clap and dance with his reflection, I kept thinking, "He could walk if he wanted to, he just hasn't figured out yet that he can. When's he going to figure it out?" And as with most things with Finn, just when I'm getting to the point of feeling really concerned and sad, he takes a giant leap. Time after time he shows me that he'll do things when he's ready, and not a moment sooner.

So I just happened to walk into the living room last night and lo and behold, there was Finn, holding a ball in one hand and toddling across the floor. I swear, I thought for a split second that I was hallucinating. Seeing him traveling upright like that was a little like walking into the room and seeing your cat walking upright - it was that unexpected and alien a sight.

And since then, he's been toddling all over the place - there's no stopping him now! It's so funny, it's like he's been doing it forever.

How sweet it is, the payoff after all the waiting. Every achievement is so hard-won with him, and all the more precious because of it.

Words

2010-09-23T13:26:00.000-07:00

A lot of hullaballoo has been, and continues to be, made about the R-word. And I've been right there, shaking my fist, demanding a change in attitude and vocabulary, demanding sensitivity and compassion for my son and people like him.

I have to admit, though, that there are other words that sting me personally (and I'm sure others in my shoes), thanks to Finn and his extra chromosomes. That's the thing about having a child like Finn - it changes your perspective about certain things. And I'm here to say that that's not a bad thing.

The other words I'm talking about are words like idiot, and moron, and imbecile. More words that we casually throw around to describe what we perceive to be stupid or substandard. And like retarded, they're all born out of what were once upon a time merely clinical terms used to describe individuals with developmental disabilities.

I admit it: I am guilty of being a long-time user of idiot - even since Finn was born. I have, however, found myself becoming very aware of my usage of the word, as well as other people's use of it (and the others mentioned above). And I've decided to eliminate those words from my lexicon. Because they do sting.

I'm not going to go on a big crusade to end the use of those words, because the truth is, as my friend Dan pointed out (I asked Dan his thoughts on all this a while back, being that he's taken on the language issue in such a big way):

"My personal opinion is that 'idiot' and 'moron' are sort of archaic.
You would never see a medical report that listed your son as an idiot
or moron. You could quite possibly see a report listing him as
retarded. And so 'retarded' and 'retard' are much more hateful, in my
opinion."

I think this is a good point, although I do have to say that there is clearly a movement underway to eliminate "retarded" even from medical terminology. I don't believe I've ever seen anything in any paperwork, medical or otherwise, pertaining to Finn that included the word "retarded;" in fact, just today, I received a copy of something from his pediatrician that lists him as "dev. delayed," which, really made me feel very pleased with the progress that has been made in describing these individuals in non-offensive terms. That said, though, I think it may end up being a double-edged sword - if "retarded" is successfully eliminated as a clinical term, then eventually won't it be considered perfectly okay to use in a non-clinical manner, just like "idiot" and "moron" have evolved?

What I'd like to see is the elimination from our human vocabularies, in all of their varieties, of any and all slurs that in any way put down any class of people - be that cognitive ability, race, gender, sexual orientation, whatever.

That said, I fully acknowledge our need as a people for epithets, for words that emote and express frustration with life's little stupidities - yes, even stupid people (and by stupid, I am not referring to IQ, but rather a failing to exercise common sense or class). So I offer you here a list of alternative language:

Adjectives:

Asinine
Ridiculous
Unbelievable
Absurd

(Try unbelievable with an exclamation point, and with extra emphasis on the third syllable: "UnbeLIEVable!" Very effective. Go ahead, try it. Also, "ridiculous" and "unbelievable" can be used to boost each other, as in "Ridiculously unbelievable!" or "UnbeLIEVably ridiculous!"

Nouns (Words to Describe People):

Ass
Asshole
Asshat
Jerk
Bonehead
Buffoon
Dolt
Twit
Shithead
Meathead
Jackass
Numbskull
Fool
Dickhead

I'm sure I could go on an on. And perhaps you think I'm kidding. I'm not. Although I do hope you find these lists of alternative words entertaining, I'm serious about using them to replace idiot, moron, imbecile, and yes, retard.

Come on, people, really. It's really, really not too difficult to think before you speak, to exercise a little sensitivity and compassion for who your audience might be. And honestly, putting forth just that little effort will probably make you feel good.

Down Syndrome Awareness Video

2010-09-19T21:34:00.000-07:00

In case you missed it via Facebook, check out this wonderful video:

(And notice who's featured in it!)

If Only The World Could See Him Through Her Eyes

2010-09-16T13:25:00.000-07:00

It's interesting to see, with all the kids I have, the alliances that have developed. Finn and Lilah, they're tight, those two. At twenty-one months apart, they're the closest to each other in age aside from the twins. I always knew they loved each other and got along well, but since Lilah started attending preschool recently, I'm really seeing how close they really are. The three mornings a week that Lilah isn't here, although I try to do things to keep Finn occupied and entertained, I can see that he misses his sister. He often wanders aimlessly from room to room, I'm sure looking for her. Yesterday when I picked Lilah up from school, her teacher reported to me that she was sad and out of sorts in the morning, saying "I want Finnian."

And when they're together, it's a joy to behold. Lilah sings silly songs to Finn, she "reads" books to him, she finds things for him to bang on because she knows he loves to bang on things. She talks to him with the assumption that he understands everything she's saying, and she also speaks to him in his language; there is often a volley of "Babababababa," and "Da ... da ... da ... DAHHHHHHHH!" between them, and then they both crack up as if over some joke only the two of them get. She hugs him with abandon, and often. She cheers for him without condescension, and helps him without pity.

And you know what? She has no idea that he's different. Sure he's two years old and then some, and he doesn't walk yet or say much in the way of real words. Sure he gets a kick out of pulling hair, and he can often be seen with his tongue protruding from his mouth. To Lilah, Finn is just Finn, and he's always been the way he is, and it means nothing to her. He's just her baby brother.

And yes, she is blissfully ignorant of his impairments and limitations. The day will come, I'm sure, when she will be more conscious of his differences. But I think she'll still love him and accept him without reservation even then.

I wish the whole world could see Finn through Lilah's eyes.

Good Eats

2010-09-07T12:30:00.000-07:00

Perhaps some (a lot!) of you are growing weary of my posts about Finn's eating. Indulge me anyway!

Feeding has been one of the two major, stress-inducing issues we've had with Finn (the second being speech/communication, which really, compared to feeding, has been a far smaller concern thus far). Feeding has been an issue for a very, very long time. Long before he was even a year old, I was concerned and stressed out over his apparent inability to handle anything beyond purees (and even getting him on purees in the first place was an ordeal). This is why whenever he makes strides in the area of feeding, I am inclined to shout it from the rooftops!

Feeding seems to be following a typical pattern with Finn with regard to mastering any new skill: just when I finally feel hopeless, he suddenly takes a step forward, as if to say, "Geez, Mommy, have some patience, will ya? I'll get there when I'm ready."

So over the last several weeks, Finn has made great strides with foods in the way of showing a definite interest in foods other than his usual fare of jarred baby food, pestering me for food when we sit down as a family for dinner, allowing me to feed him a variety of things from my plate with a fork, and signing "more." He has become very proficient at self-feeding things like pretzels, crackers, Cheerios, and Veggie Straws. It's now time to put the two together: encouraging him to self-feed regular table food. Behold:

This was a HUGE first: he sat down with the family and had for his dinner exactly what we all had for dinner (penne pasta with marinara and meatballs, cut up into bite-size pieces), and he fed himself. He did put a little too much in his mouth at one point, which caused him to gag and spit it out, but he got right back on the horse, so to speak. And he finished that entire bowl of pasta and meatballs.

Way to go, big boy!

Fed Up With Early Intervention

2010-09-01T21:02:00.000-07:00

Finn has in-home speech therapy every Wednesday morning at 9:00. Every week his SLP is late - anywhere from 10 to 25 minutes late. Today? Well, today she just didn't show up at all. I waited. And waited. And waited. And posted my frustration on Facebook. And waited some more. All the while growing more and more peeved. It's not as if I don't have other things to do. And I plan things around Finn's therapy. So when she's late, it throws all my planning off, which is frustrating to say the least.

So, in the end, she never showed up this morning. I tried calling her at about 20 to 10, but only got her voice mail, and didn't leave a message. By the time it was a quarter to 10 and she was 45 minutes late, I started thinking, "Well, what if she shows up now? I just won't answer the door!" But she never showed. At a few minutes past 10, I called her number again, leaving a message telling her that I wasn't sure what happened and asking her to call me.

She finally called me back at a little after 6:00 this evening. Know what she said? She said that she had put us down for Thursday mornings from now on. Problem is, she never discussed this with me! So if I had never called her and left a message, would she have just shown up tomorrow morning? I have no idea. Apparently she can't fit us in on Wednesday mornings anymore - something to do with the school year starting . . . I don't know. What does this mean? Have we been displaced by another of her clients? Are we not as important, so we just get booted from the Wednesday morning time slot with no discussion? I have no idea.

And I can't do Thursday mornings. Or rather, I won't. Lilah, my three-going-on-four-year-old, just started attending preschool three mornings a week, which means that Tuesdays and Thursdays are the only days now that I have her home with me. We already do OT on Tuesdays, which means those are mornings that we can't go to the park or do other fun things. In another year, she'll be in kindergarten five days a week, and I'll be damned if I'm going to use up all the days I have left with her doing therapy with Finn - therapy that I'm not even convinced is having any impact on him.

So I called Rebecca back and told her that Thursdays will not work for us, that I need either a Monday morning slot or a Friday morning slot. We'll see where that goes.

The thing is, she's supposed to be THE BEST. She is highly regarded as a SLP. And she does have a great rapport with Finn (which is not to say that I believe he's actually getting a whole lot - or anything - out of ST). I like her as a person. She's good with my kid. And she comes to my house (when she shows up), and I guess she's one of the only SLPs who does in-home therapy in our area. I'm not inclined to dump her and start over with someone else at this point - especially since Regional Center is only covering ST for us through October and then we have to go through our health insurance which will likely make us go across town for ST, which I will not do, so effectively I expect we'll be done with ST come November, until Finn turns 3 anyway and is transitioned to the school district.

Blah. I'm just so fed up with the whole thing - Early Intervention as a whole. If you believe that your kid is making some huge gains as a direct result of EI, then more power to you. But looking back on two years of this crap now, I don't feel that it's been an overall positive experience for us. The benefits - whatever they are - certainly have not outweighed the negatives.

I remember being in the NICU with Finn when somebody first came and talked to me about Early Intervention. I was told that he needed to start therapy as soon as possible, and I remember being bewildered and saying, "As a newborn? He needs therapy as a newborn?" The woman - I guess a social worker from Regional Center - said in this no-nonsense tone, "Don't you want him to be the best he can be? Then yes, he needs to start 'baby school' as soon as possible." That's what they do. They sell it to you like that, playing on your fears and your guilt, and you're led to believe that if you're a good parent, if you want what's best for your child, this is what you'll do: you'll put him in this program from birth that will attempt to normalize him. And even when it becomes a huge imposition on your time, even when your other kids are impacted, you keep going because that's what you're supposed to do, and quitting altogether is too scary because you don't want to look back and feel like you didn't do everything you could do.

Looking back, I wish I would have asked that woman: what exactly is the goal of Early Intervention? What exactly are the benefits I can expect to see? Does therapy guarantee anything for my kid?

Kevin, my thirteen-year-old asked me today, "Mom, why does Finn have therapy? You hate it. And isn't he going to learn how to do all those things anyway, just slower? What's wrong with that?" Astute kid.

Fed up.

Look Who Had Spaghetti For Dinner

2010-08-30T13:11:00.001-07:00

Finn's repertoir of edible fare - and by that, I mean foods he willingly and enthusiastically eats, and actually chews and swallows with little to no gagging - is expanding by leaps and bounds these days. Off the top of my head, here's a list of non-pureed things that have gone down well with him of late:

Pretzels
Veggie Straws
Graham crackers
Meatloaf
Potatoes (chunks of baked potato with butter and sour cream)
Eggs (prepared pretty much any way)
Oatmeal (the grown-up variety!)
Peas (!!)
Spaghetti
Filet mignon (I kid you not)
Toast (wheat, with butter and jam)
Banana chunks
Chicken breast (baked)
Rice

I am very pleased. He's clearly ready to handle a diet of big boy food. The main issue at this point is that he doesn't self-feed much (except things like crackers and pretzels), and feeding him is a very slow, tedious process. He can handle this stuff - and clearly wants it - but he doesn't gobble it up, so it takes a lot of time to feed him table foods in amounts and cut up into consistencies he can handle. So I do still resort to purees pretty often, just because it's quicker.

We're making strides, though!

Steps

2010-08-29T10:33:00.000-07:00

All the waiting has paid off: at just shy of 26 months old, Finn took his very first unassisted steps this morning. Two, to be exact. And I was there to see it!

He's been cruising around furniture for months, becoming more and more proficient at it, and several weeks ago mastered his push toy. I knew it was only a matter of time before he took his first steps hands-free, and figured it would happen almost accidentally, without his even realizing he was doing it. And that seems to be exactly what happened. He was standing up holding onto my legs in the kitchen and he let go and took two steps over to nearest cabinet. At which point I started jumping up and down and yelling for joy, and poor Finn started crying because of the ruckus I was making. I wish I had some video footage of it all, but of course I don't; these moments happen so unexpectedly, it's impossible to be armed and ready with the video camera.

I knew he would walk in his own time, just like everything else. And I know that, though he's taken the first steps towards becoming a real walker, like everything else, it will progress in slow motion and it will probably still be quite a while before he's using walking as his main mode of getting around. It's all okay, though.

It's just amazing how much every little thing means.

Jennifer Aniston: The R-word Strikes Again

2010-08-20T13:53:00.000-07:00

It's old news by now, and I contemplated not even addressing Jennifer Aniston's gaff from yesterday, beyond posting about my disappointment on Facebook. I don't know that there's anything I can say that hasn't been said out there on thousands of blogs concerning this incident already. However, I have a responsibility to Finn, and to my family, and to society to speak out.

Let me say first that I have been a fan of Jennifer Aniston's for a long time. One of her most admirable qualities, I think, has been her poise; in the public eye, at least, she's always seemed like a classy chick. Until yesterday when she offhandedly called herself a "retard." Wow. It just stung to hear that word come out of her mouth, and so casually, and to see Regis and Kelly chuckle. The sad thing is that it's almost certainly not an isolated incident - if she got caught on camera saying it, chances are pretty good that it's a word she's tossed out before.

I brought it up to Michael last night, and he reminded me that, back in the day, before Finn came along, I wasn't above using language like that either. I am ashamed to admit that it's true. You don't know what you don't know. It's true that when I used to use language like that, I didn't connect it to anyone specific. It was just a funny put-down that never occurred to me might hurt anyone. Cringe, cringe, cringe. It's no excuse. How or why it didn't occur to me is unfathomable. I'd certainly like to believe that had anyone said to me, "Hey, that's pretty hurtful and offensive," that I would have felt ashamed and really taken some time to think about it and understand it.

However fair or unfair it might be, people who choose to be in the public eye should be held to a higher standard than the average person. Like the CEO of ARC said about JA, "A person in her position ought to know better." She should. She should know that she's influencing millions of people and that any words she speaks in public affect millions of people.

"Auntie Jen, what's a retard?" "Oh, Coco, it's nothing. Just a silly word that means dumb, that's all."

(I imagined that, but probably not too far off the mark, you know?)

I've searched and searched online and can't find any indication that she's even addressed the incident. She must know that people are up in arms about it.

"Ms. Aniston, sorry to bother you, but the emails and letters are rolling in about the 'retard' comment you made. We've got ARC and the Special Olympics writing in, and a lot of parents of retarded kids. It's all the buzz in the blogosphere. We better do some damage control. Your new movie is coming out, and this might hurt potential box office . . ."

"Oh, let's just ignore it. I have a million appearances to make. Anyway, I'm sure all the reasonable people out there realize that I didn't mean any harm. Geez."

(Okay, I imagined that, too.)

The thing is, the people who are up in arms about it are people who are personally touched in some way by disability. The general public? Not so much. In my online attempt to find some response by JA to the incident, I came across a shitload of support for her, defense of her comment, and outrage that anyone at all is getting their knickers in a twist over this. And I think that's what bothers me most of all. Collectively, as a society, we still excuse and allow slurs against the disabled. It's no big deal. It's funny. My son is still largely invisible and inconsequential. He's never going to make millions, he's never going to discover the cure for anything or come up with some groundbreaking invention, he's never going to be a CEO or a politician or anyone's mentor, he's never going to get anything more than a token higher education, and it's reasonable to expect that he may never be able to live independently. So he doesn't matter. He's hardly human. He certainly doesn't have feelings (he's not intelligent enough to have real feelings), so backhanded comments against the disabled can hardly mean anything to him. And his family? Well, we're just too fucking sensitive. Nobody means any harm. We need to just get over it.

Ahhh, the whole thing just makes me feel incredibly tired and sad. Such an uphill battle to get a little respect. Why is that so much to ask? Why are so many people so much more interested in their right to freely express themselves at any cost to their fellow humans than in showing a little sensitivity, a little compassion, a little acceptance, a little respect?

IFSP meeting

2010-08-19T13:12:00.000-07:00

Our IFSP meeting was this morning. In a nutshell, blah.

I got a copy of Emily's report on Finn at the meeting. I'll just say what I always say: it's disheartening to see your child reduced on paper to numbers, scores, and percentages. None of it was a surprise; I know that he's delayed in all areas, and I really feel like I've made my peace with that. Not that he's not doing great! He really is, and he's making strides all the time. Still, seeing someone else's assessment of your child just kind of stings.

Our meeting this morning was with our new service coordinator, Celina, who was very, very nice, very thorough and professional (and very young!).

Emily is, of course, recommending that OT continue once a week. Rebecca, our SLP, has not submitted a report, as her contract is not up yet. Celina informed me that we are, in fact, being required to submit request for coverage of services to our private health insurance carrier, contrary to what our former SC, Amber, told me when I last spoke to her. Apparently, Amber just decided to give me part of the story, and then she bailed on us. Nice.

So here's where we're at: Regional Center apparently never did approve funding for in-home OT for Finn past the end of their current contract with Emily, which is now at an end. They did approve funding for in-home speech therapy for Finn, but only for a short-term contract, which is up in October. Amber never told me any of that. She just told me that Regional Center had taken my concerns into consideration and decided to make an exception and continue to allow us in-home therapy.

So as it stands now, they will be submitting a request to our insurance carrier to cover OT. If our insurance carrier approves it, they will NOT cover Emily, nor will they cover any in-home therapist; they will only cover clinic-based therapy, which will mean having to take Finn somewhere else for therapy amidst all the other responsibilities I have with all the other kids, and paying a $20 co-pay per therapy session. The same will go for speech therapy when that contract is up in October. If our insurance company denies coverage, then Regional Center will continue to provide the services, with the therapists, that Finn has been receiving.

I've already made my decision: if we are forced to utilize services through our insurance carrier, I'm opting out. Trucking across town for group therapy and paying twenty bucks a pop for the privilege is just not practical for us, and I honestly can't see the justification. While I think he benefits from therapy to a degree, I absolutely don't think that the benefit is so great as to justify that kind of expense, inconvenience, and disruption to our family routine. I just won't do it. And I won't feel guilty about it, either.

Over time, I've come to see therapy and the service industry as more and more of a trap. They convince you that your child needs to be in the system, needs the therapies, that therapy is the main thing that is going to make this major difference in how productive and "high-functioning" your kid ends up being. And after convincing you that therapy and services are an integral element in your child's success, it turns out that they can't or won't provide said services anyway. It's all a myth. You can spend your kid's childhood therapizing the shit out of them, and it's not going to guarantee anything - it doesn't guarantee that they're going to master this or that at any prescribed time, and it certainly doesn't guarantee that they're going to be independent adults one day. Their capabilities are hard-wired into them from birth - that's what I think. Therapy may give families tools to assist their children in developing certain skills, but I am not at all convinced that therapy is what is making the major differences in our kids' lives. Love and inclusion and good health care are the things that have changed the quality and longevity of people's lives who have Down syndrome.

So anyway. Like I said, blah. Feeling kind of cranky about the whole thing.

I've seen Deedah, have you?

2010-08-18T20:46:00.000-07:00

It seems to be the latest buzz in the Down syndrome community. If you don't know about it, check out this trailer:

I ordered the DVD about a week ago and it came in today's mail. I couldn't wait to watch it. It's a short documentary about a six-year-old boy named Jonathan who has Down syndrome, narrated by his seven-year-old sister, Charlotte, nicknamed "Deedah" by her brother. The trailer got me all choked up, so I figured the actual movie would, and it did. Seeing the honest love between this brother and sister is very moving, and it did remind me very much of how much Finn's siblings adore him, and accept him without reservation. Deedah is very sweet and moving, and anyone who doesn't just fall in love with both of these kids clearly has no heart.

The back cover of the DVD says:

"Deedah" is about a wonderful relationship between a brother and a sister, but it's also about letting go of what you think you know, opening your eyes to others and embracing what makes everyone special."

That really sums it up; what a wonderful, yet simple, goal that we all should strive for.

I think the orders for this DVD are probably pouring in from families of children with Ds, and I think that's great. It shows that life with a child with Ds is not terrible or scary - it's just life. But what I'd really like to see is other people ordering and watching this DVD and passing it along to other people. Everyone needs to get a glimpse into this family's life and see that being different is okay, and that everyone has gifts to offer and is worthy of respect and acceptance.

The Boy In the Mirror

2010-08-17T14:34:00.000-07:00

I love when I catch Finn doing something so cool and unexpected like this:

Notice how he lets go and stands without holding onto anything for long stretches? I kind of think that he doesn't even yet realize he's doing it. I really think he could probably walk unassisted if he wanted to . . . he just doesn't know it yet.

Tests and Screenings

2010-08-16T15:48:00.000-07:00

When I take Finn to see our pediatrician for regular checkups, the doctor goes down a checklist of things that need to be addressed for children with Down syndrome. Where he got this checklist, I don't know. He's a wonderful doctor. There are so many things I love about him; he's warm and personable, he always takes the time to sit down and make me feel as though our family matters to him, in the thirteen + years he's been our pediatrician, he's never once rushed though an appointment with us, and although he and I don't always see eye to eye on every issue, like vaccines and infant sleep issues, he always listens to my concerns and respects my feelings concerning my kids.

He's not an expert about Down syndrome, though. I think he said that in all the years he's practiced, he's only had two or three other patients with Ds. Which is fine. So he uses this checklist.

So at Finn's two-year well check a couple of weeks ago, he's going down the checklist. And he mentions that it's time for Finn to have his hearing and vision checked again. I told him flat out that I'm not taking Finn in for the booth hearing test again - it's a waste of time because the results are always ambiguous, they'll just tell me that Finn needs to have a sedated ABR which I am NOT going to do, and I have no reason to think that Finn's hearing is impaired. He agreed with me, but he did say that maybe we should at least go back to the ENT to make sure Finn's tubes are still in place (the pediatrician couldn't tell). I said okay. He also mentioned that Finn should go back to the opthamologist to have his vision checked again.

We got the forms in the mail a few days ago from our insurance carrier approving the referrals to the ENT and to the opthamologist. A little while ago I picked up the phone to call both of those doctors and schedule appointments for Finn, as well as the cardiologist to schedule the sedated echo which our insurance company also approved.

But then I put the phone down without dialing.

Sometimes I get tired of all the specialists, of all the tests and screenings Finn is "supposed" to be subjected to. And it's not even as though he's got a list of doctors a mile long like some kids with Ds do - Finn's a very healthy little boy. And I guess that's the thing: he IS healthy. So why does he have to undergo all these screenings? I certainly don't take any of my other kids to any doctors unless they present symptoms of a problem.

I realize that along with Down syndrome comes a greater risk of a lot of things, and a lot of those things are silent - there may not be any outward signs of certain conditions. I'm fine with doing periodic blood draws to check his thyroid function. I realize that he actually was born with a hole in his heart and that it's necessary to monitor that. I'm even okay with having his vision checked once in a while. Do I really need to take him to the ENT (which requires taking up an entire morning driving across town, waiting in a packed waiting room for a really long time, and paying a $20 co-pay for the privilege of all of this) just to see if his tubes are still in? I know they'll fall out eventually, but if he's not getting ear infections or showing any of the other issues he was having prior to getting tubes, then what's the point of checking?

I know there are parents out there who feel strongly about subjecting their kids to every screening available. I'm sure it goes along with wanting to do what's best for our kids to ensure their good health, but over time I've become less and less enamored of all the special medical treatment our kids are supposed to be subjected to just because they have Ds. Having Ds isn't a disease or an illness.

Anyway, I didn't mean for this to become another post I give from atop my soapbox. Really, I am interested in anyone's thoughts on NOT taking Finn back to the ENT until/unless I start seeing clear indications that his tubes are out and he needs new ones.

Friends

2010-08-15T14:58:00.000-07:00

One of the most thrilling things is finally getting to meet, in person, someone I've gotten to know online. I've been lucky enough to have had the chance to meet several people, face to face, whom I first became friends with through the blogging community. Today I had that privilege again: I got to meet Jennifer of Three's A Charm, and Cheri of Raising Reid in the flesh. Oh, and their gorgeous children, too!

I have to say that it unexpectedly brought me to tears seeing all these beautiful chromosomally enhanced kids together. They were all loving on each other, and it was just really, really cool. I brought Kevin along because I wanted him to see these other kids who are like his brother whom he has become such a huge advocate for.

There are more photos here for anyone interested in taking a peek.

I hope I get to see these wonderful ladies and their kids again!

If you think that having a child with Ds isn't fair to the other children in the family . . .

2010-08-12T11:04:00.001-07:00

Daisy, age 5, made this for Finn this morning:

Translated:

"I love you Finnian. You are the best baby and Finn you are silly, you silly baby, so this is what you are, a baby."

ECHO Echo echo

2010-08-11T13:38:00.000-07:00

Well, it was that time again, time again for Finn's semi-annual echocardiogram to check on that pesky ASD of his. So off we traipsed to the pediatric cardiology office this morning (and let me just say, if you ever want to experience a cross-section of children with different disabilities, go hang out in a pediatric cardiology waiting room for half a morning. Lots to see. Funny how that kind of thing used to be very off-putting to me and now I feel a connection to all of them and their parents. There was a little Hispanic boy with no hair and Down syndrome, ambling all over the waiting room, and I swear I was ready to kidnap him . . .).

As far as the actual echo, it gets worse every time we go - not Finn's ASD, just his cooperation level. He's more squirmy and less cooperative than ever now, plus he's developed a fear of the dark, plus stranger anxiety, and all this together does not make for a very successful echo!

So the bottom line is that the cardiologist wants to do a sedated echo, and I (get ready to be shocked) have agreed. The doctor would like to, once and for all, get a good picture of Finn's heart so he can document that the ASD is closed (or not), and I would like to, once and for all, get some closure on this whole heart thing so we don't have to keep going back every six months. So sometime in the not-too-distant future, after our insurance company and God approve the recommendation for a sedated echo, I'll take Finn in to the "short stay" unit of the Children's Hospital where they will give him something by mouth to make him nice and sleepy and they'll take some excellent pictures of his heart, and hopefully that will be that.

In other news, Finn had his two-year well check with our regular pediatrician last week. Nothing exciting to report, which is a very good thing. He's gained about three pounds in the last six months (wooty-hoo!), and about a quarter-inch in height.

All in all, Finn is doing fabulously, he really is. He's trying out more and more table foods, he's doing a little bit of signing, lots of mimicking (and it often sounds as though he is speaking, in his very rudimentary way, actual words), he's tearing around the house behind his little push-toy and is well on his way to walking. There is nothing I am losing sleep over. I am so in love with him, I swear I could eat him up sometimes - I just think he is the coolest little dude.

Emily, our OT, has been in the process of evaluating him over the last couple of sessions, as we have our IFSP meeting coming up. I know he's roughly at about a 12-month level in most areas. There was a time when this would have broken my heart, but I honestly just don't care anymore. He is who he is. Rebecca, our SLP, deemed him "very smart" last week during ST. And it's true that he often surprises me with how on the ball he is, how quickly he catches on and figures things out. But even that I take with a grain of salt. Smart schmart - whatever. Emily asked me what goals I want to set for Finn for the next six months, and I really had a hard time with that one. What I finally came up with was this: I just want him to be healthy and happy. I can't ask for more than that.

Look At That Boy GO!

2010-08-04T07:43:00.000-07:00

CAUTION: If you don't want to hear the utter craziness of a passel of kids, turn your volume down.

It's so funny to see Finn upright like this! And I'm once again struck by the fact that these things can't be forced. I tried a number of times to get him to walk behind his push toy over the last few months, and he would just collapse his legs, refusing. He just wasn't going to do it a moment sooner than when he was ready to. And now, look at him go!!

Those are some fine motor skills you have there, Finn.

2010-08-01T09:23:00.000-07:00

Not So Wordless Wednesday After All

2010-07-28T15:54:00.000-07:00

Looks like we've suddenly got a new Service Coordinator. I was informed by letter from our new SC today. What happened to Amber, who has been our SC since Finn was a newborn? I can't help but feel like I've been dumped. I know there are lots of different possible reasons for the switch (and, in fact, upon receiving the letter today I did call our new SC to introduce myself and to schedule our IFSP which is due next month, and she gave me some vague explanation for the switch that sometimes cases are just re-shuffled among Service Coordinators), but I can't help but feel like the switch was made at least partly for personal reasons. I think I might be somewhat of a pain-in-the-ass parent because I don't always just go with the flow, and things had definitely become a little adversarial between me and Amber. Whatever the reason that we've been given a new SC, it bothers me that after two years, there was no word from Amber directly - no warning that there was going to be a change, no message from her explaining or wishing us well. I guess I just expect too much of people.

Anyway, the new SC sounded nice enough on the phone. We'll see how it goes I guess.

Wordless Wednesday

2010-07-28T11:13:00.000-07:00

Scraps

2010-07-25T13:19:00.000-07:00

We went on our first ever family vacation the week before last. We packed up the kids and drove up the coast for a few days. It was a wonderful experience for all of us.

As we were driving along the winding roads, we passed a good-sized camper truck. Michael said to me, "See that? Something like that for me, you and Finn." Puzzled, "What about the other kids?" I asked. "Ohhhh . . ." then it dawned on me what he meant. Someday. When all the other kids are grown and out of the nest. Maybe Finn will still be with us. And maybe it will be the three of us taking vacations together. The thought made me feel warm inside. It used to terrify me that Finn might never be able to live independently, that he may always depend on us. I'm not scared of that anymore. I hope he can one day live his own life independently, but if he can't, it'll be fine.

***

While we were away, Finn for the first time ever pulled himself up to standing and then let go, holding a standing position hands-free for a second or two. He also began walking holding onto my hands. Funny how these little things can be such a big deal.

***

Last week Finn started speech therapy. It's impressive how much he mimics. He's using the sign for "more" more and more often now, and he mimicked his SLP saying "more" (sounded like "ah-moh"). I have no idea where ST is going to lead him - will it teach him how to speak? I have my doubts. Like a lot of other developmental skills, I'm not sure speaking can be taught. I think it's something that will emerge in its own time if it's destined to emerge. I guess the point of ST is to give him tools to communicate, in whatever form that is.

Here he is singing, after watching his sisters sing:

Wow.

2010-07-22T13:49:00.000-07:00

Adoption Fundraiser

2010-07-19T10:23:00.000-07:00

Sandra of DS New Mama, mama extraordinaire of a handful of kiddos, including the beautiful Summer Rain, is in the process of adopting not one, but TWO gorgeous little chromosomally enhanced little girls from Eastern Europe. This is an expensive undertaking! Please help out by considering buying a raffle ticket (or a few) for this gorgeous piece of art Sandra and her family are raffling off to raise funds for their adoption.

All in due time . . .

2010-07-09T14:15:00.000-07:00

Check him out:

This is the first time Finn has ever walked with his push toy, and he did it completely spontaneously, all on his own. I've tried standing him up behind it, and he's always just firmly refused by collapsing his legs. But look at him go now! Unfortunately, I wasn't home this morning during the excitement, but my fabulous eldest son, Kevin, was quick to grab his video camera to record the procession. And Finn was kind enough to show me his new trick when I got home.

It's funny . . . this always happens: just when I think he's never going to do something, he goes and does it, the little rascal.

Two

2010-07-07T12:43:00.000-07:00

On my mind

2010-07-06T21:22:00.000-07:00

In a few short hours (about four, more specifically), my baby will turn two. His birthday has obviously been approaching for weeks, and I've been just fine and dandy with it. For the last few days I've been drafting in my head what I'd post here to commemorate his second birthday - something positive and upbeat, something that conveyed how I adore him and how much his very presence has changed our family and opened my heart. And all that is true.

And yet.

As the day wore on today, as I herded kids and did chores and ran to the store to buy one last birthday gift for Finn, I felt myself feeling more and more out of sorts. Until finally around dinner time, the tears started, which I've continued to brush away on and off for the last few hours.

I feel sad, and I'm not sure exactly why. I don't think there's a simple answer. It's far more complicated than the usual bitter-sweet melancholy I feel with the turning over of years with each of my other kids. It's different with Finn. It's all so very different. And I guess that's the crux of it.

I think back to those early days and weeks, and how scared I was. What did the future hold for this tiny baby who came crashing into our family with his extra chromosomes, with his extra issues? How bad would it be, how hard would it be - for him, for all of us?

I even went through a fairly prolonged period of holding out hope that he would only be mildly affected by Down syndrome. Mildly affected. I was fixated on that notion for a while, I'm ashamed to admit now. I think it all started with him rolling over for the first time at three and a half weeks old - three and a half weeks! And it wasn't just a fluke, because he kept on doing it. So I grabbed onto that, hoping that it was a sign of things to come - that he would reach all of his milestones on time, or even ahead of schedule, that he would be the superstar kid who made it into the medical texts by having the extra chromos but none of the delays and issues typically associated with those extra chromos. I guess it was a coping mechanism - I created this fantasy as a means of coming to terms that my baby was different, defective in the eyes of the world.

But over time I figured out that his rolling over at three and a half weeks had no bearing at all on anything - except that he could roll over at three and a half weeks.

And over time, I adjusted, I coped. I accepted. I got to a point of knowing in my heart of hearts that I wouldn't change anything about him, not even that he has Down syndrome. I have come to believe that in fully loving him and accepting him just as he is, without reservation or qualification, means always having high hopes for him, but also accepting that he will have limitations, that there will be things he will never master - but that it's still possible to see the value and beauty of his existence.

So why am I feeling so sad and down on the eve of his birthday?

The delays have become more numerous and more apparent the older he's gotten. It's no longer abstract, it's reality. At two years old (okay, three and a half hours shy of two years old), he doesn't walk, he doesn't talk, and he doesn't eat table food. I know those things will come in due time. When is anyone's guess. I'm okay with it for the most part. I guess what's painful is just that every achievement is so hard won. There is so, so much patience required in parenting a child with developmental delays. And patience is most definitely not one of my strengths, but interestingly, it's not all that hard to be patient with Finn. But I wonder how patient the world will be with him.

And now, in writing it all out, I think I've gotten to the heart of it: it's still a hard world to raise a kid like Finn in. People like Finn are still viewed largely as less than. They are still marginalized. Prejudices and misconceptions about people with Down syndrome still abound. People still throw around words like "retard." I would venture a guess that a good deal of my own friends are still secretly glad that it happened to me and not them. It's still something people don't want to happen in their family.

I've changed. I believe I've become a more compassionate person thanks to the addition of Finn to our family. I believe my mind and heart have been opened to the plethora of differences in all people. At the same time, I think I've become more hard-hearted to small-mindedness. I've donned a new hat among the many I was already wearing: the hat of Advocate. Which means I have to speak up on behalf of my son and all people like him, even when it's painfully uncomfortable. The knot of friends who comprise my "inner circle" has shrunk, I'm sure because of changes I've undergone.

Sometimes I still feel scared, like I did back in the early days and weeks. The future is a huge question mark. It's not Finn I worry about so much. It's how kind or cruel will the world be to him?

So I rocked him tonight in the dark of his room for a long time, thinking "just a little longer . . ." holding him tight, and wishing I could protect him always.

Speech Therapy and musings

2010-07-05T13:53:00.000-07:00

I got a call from our service coordinator Friday morning. She informed me that she "took my concerns to the management team and they've decided to make an exception for us" and cover individual, in-home ST for Finn. I got the distinct impression that she wanted me to express gratitude at this great favor she's done for us (roll eyes). Or maybe I was just imagining it. I can only imagine what she presented to the management team about me and my phone conversation with her when she initially told me that Regional Center wouldn't cover ST for Finn! Well, the squeaky wheel gets the grease, right?

This is good news, and I am grateful. But also weary and resentful. I was under the impression that Regional Center, our service coordinator, and we were supposed to comprise a team that would work together in the best interests of Finn. Instead, it's become a contentious relationship - us against them. They're supposed to provide certain services to benefit Finn (which we pay for with our tax dollars), and yet we have to make a stink to get him the most basic services which he is legally entitled to based on his diagnosis. I understand that the problems in the system are driven by money - or rather, lack of money. And I understand that our service coordinator is probably in a thankless job, likely underpaid and overburdened with cases and clients. I'm sure it must be very stressful to be in the position of gatekeeper of the services that families in need are clamoring for.

But where does this leave us, the families? Where does this leave Finn? It leaves me, I feel, in the position of having to make a stink to get the services that Finn needs (or at least I'm told he needs . . .)

Ack. And all that said, I still have very mixed feelings about therapy. Is it helping him? Is any progression he makes thanks to the therapy he receives, or is it all within him to begin with, skills and accomplishments waiting to emerge in their own time, regardless of the presence or absence of therapy? Is therapy a valuable expenditure of our time, or would that time be better spent just being and allowing Finn to be? I agonize over these questions constantly.

Let me share another couple of snippets from that book, The Short Bus, from the chapter the author wrote profiling his time spent with a young woman named Katie who has Down syndrome:

The first year of Katie's life, Candee [Katie's mother] tried her best to fix her daughter. She counted Katie's steps. She compared Katie's development to "normal" kids. She bought training devices shaped like toys. She was instructed to buy a book called How to Train Your Down Syndrome Child.

Every interaction was instructional. Every moment, an opportunity for teaching. And in Candee's mind, "it accomplished not a goddamn thing. It is the myth that drives the pyramid scheme of the service industry. I realized," Candee said, "that I had not been Katie's mother. i had been her trainer, and I had been sucked in."

***

Candee asked Katie what she could do to help her, to support her dreams. Katie responded, "You can teach me to dance." Candee was at a loss at first. She didn't get it. "Teach you to dance? What good does that do?" Katie smiled and said, "If you teach me to dance, then we can dance together."

Uh huh. Live. Just live.

Read This Book.

2010-07-01T14:21:00.000-07:00

The Short Bus: A Journey Beyond Normal by Jonathan Mooney

I recently read this book and it made quite an impression on me.

In a nutshell, it's a memoir by a guy who, in early childhood, was diagnosed with dyslexia and ADHD, labeled "profoundly learning disabled," and thus landed in special education and a passenger on "short bus." As an adult, in an effort to make peace with his differences, he bought an old short bus and went on a journey around the country, interviewing people with differences - differences that made them social outcasts. In this book, he recounts his journey and profiles the people he met along the way.

I reviewed the book here, but there were so many passages in the book that really struck me, and I found myself highlighting and underlining and dog-earring pages so I could discuss them here. Here are a few:

There were faces of kids who were told every day that they needed to be normal, had to be normal, had to change themselves.

In this comment, the author is referring to a classroom full of kids in a special education class to whom he gave a presentation when he became a public speaker as an adult. I fear that this is basically the crux of what Finn will face over his entire life. That he is viewed as a set of problems and deficits that we should strive, strive, strive to remedy in order to make him as "normal" as possible. Whatever that is. Normal. Pffft.

People say to me all the time about Finn, "You can't even tell he has Downs. He must be very high-functioning," and "Thank goodness he's high-functioning!" I won't even speak to the part where physical appearance has nothing whatsoever to do with capabilities. But really - we have no freaking idea how "high-functioning" he is. And what does "high-functioning" mean, anyway? Doesn't it really, secretly, mean "as close to normal as possible?" Because that's what makes people feel just a little more comfortable with Finn and people like him. And what a kick in the face to individuals who are not "high-functioning." Are their lives of any less value?

The [“short”] bus emerged out of federal legislation, the Individuals with Disabilities Education Act (IDEA) of 1975, which mandated that children with disabilities be educated in a public school setting. It was a historic moment for my tribe, but there were problems. Schools were not required to fully integrate students with disabilities, and a segregated system of special education programs was created. Then along came segregated transportation: the short bus. Thrown together under the rubric of special education, these passengers included kids with physical disabilities, Down syndrome, learning disabilities, autism, as well as emotional problems. Special education and the short bus grouped together all these different students, expanding our culture’s definition of disabled. The short bus as a symbol of special education says as much (or more) about that culture – its values, beliefs, fears, aspirations, and injustices – as it ever did about people with disabilities.

A-freakin'-men.

My parents and I were told I was broken, and that my deficits should be diagnosed, treated, and cured. But the medical model gives the doctor all the power and dehumanizes the “patient.”

Although the author's "issues" were very different from Down syndrome, this still strikes a chord with me. I've always felt to some extent that professionals and lay-people alike have tried to measure Finn and quantify his value as a human being based on how well he can overcome his disability. And is it even really a disability? Down syndrome is a condition present in every cell of his body which manifests in a ways that make him different, and in ways that make him the same as "regular" folks. Why is that even considered a disability? I feel like ever since Finn was born and we were told that he has Down syndrome, we've been encouraged, pushed, expected, to help him, push him to be something that other people can feel okay about.

I realized what the short bus is all about: It serves a social function. Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are – not normal, not whole – a negation that calls into being its opposite: the normal. The normal looms over all of our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we . . . The short bus polices that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.

Something to think about, huh?

Normalcy, though, is first and foremost an idea that arises from statistics. The normal, norm, or normalcy do not exist in the real world of people, despite the fact that we are told that we can modify our behavior and train our bodies and minds to reach it. We are told to chase it – in our culture, in our families, in our lives. But when we chase it – as I did – it disappears. Normalcy is like a horizon that keeps receding as you approach it.

I'm still trying to figure out what this so-called normal is. Wait. No, I'm actually not. Because I know that there is no such thing as normal. Take a good look at yourself. Are you normal? How, or how not? What about your parents? Your kids? We all have issues. We all have things about us that are troublesome, things that might make other people uncomfortable. We all have different talents and shortcomings, strengths and weaknesses. Why are we so conditioned as a society to accept nothing less than this mythical normal? Imagine a world in which everyone was the same. Imagine a world with only vanilla ice cream. No chocolate, no chocolate chip, no cookies 'n' cream, and certainly no Chunky Monkey or Brownie Batter. Really? Is that what we want?

A policy of emphasizing speech for these children is really a policy of forces assimilation of a unique minority group.

The author is remarking here on deaf and deaf-blind children who are pushed to undergo rigorous speech therapy in order to teach them how to speak, using their mouths and voices. And although Down syndrome is not the same as deaf or deaf-blind, the reference to "forced assimilation" jumped off the page at me. I think to a large degree, that's what my long-lived and ongoing struggle over therapy boils down to. What's it all about? Is it about helping Finn be the best he can be? Or is it about forcing him to assimilate, to be as much like a normal kid as possible - as high-functioning as possible?

So what did we learn from our short history of the feebleminded? If the social history of mental retardation is a story of shifting realities, one thing has not changed at all: Cognitive minorities are still one of the most socially and economically marginalized groups in the United States.

Uh huh.

[John Langdon] Down had great empathy for the individuals he studied and worked with. He described them in glowing terms as angels, perpetual children, and as almost impossibly kind. While this is better than most descriptions of people with disabilities, there was also a subtle form of dehumanization in this description of people with Down syndrome – it was as if they were in fact a different species.

Yes, and this seems to have endured very much so over the decades. It's something that I personally abhor - this notion that Finn is an extra-special gift, that he's an angel from God, that he was sent to us with some divine purpose or lessons to teach us, that we can always count on him to be happy and good-natured because he's got DOWN SYNDROME for god's sake. It's insulting. He's a person with likes and dislikes, opinions, and moods, just like everyone else. He's not otherwordly. He's got an extra chromosome, that's it. It's utterly scientific and physiological. Assuming he is one-dimensional takes away his humanity. Don't do that to him.

All of this leads to two important points. First, the struggles of individuals with Down syndrome don’t stem from their extra chromosome, but mainly from how they are treated. Don’t get me wrong, individuals with Down syndrome do face specific health challenges . . . . But, from what I have learned, their greater struggle is against discrimination.

The second point is that Down syndrome is far from an aberrant human experience. In fact, it is connected to all of us. At the moment of procreation, every one of us is birthed as a result of a game of genetic roulette. Spin, spin, spin your chromosomes and see what comes up. The genetic process is dependent upon variance and diversity of genetic combinations. One writer has estimated that there are some 65 trillion different genetic combinations. While this variance is a great strength, genetic roulette does create chromosomal abnormalities. Down syndrome is one of the most common “errors” to both occur and survive to term.

Just some of the author's interesting observations about Down syndrome after researching it and spending time on his travels with a young woman with Down syndrome.

This book obviously got me all fired up. It really touched some inner nerves for me, and it made me laugh and cry. It has taken up permanent residence on my bookshelf, along with Roadmap to Holland and Gifts, even though it's not a book specifically about Down syndrome. What I love about this book, though, is that it shows that Down syndrome certainly doesn't have a monopoly on marginalized groups of people.

Please read it. Read it if your family is affected by Down syndrome or any other aberration. Read it even if you're not personally affected by disability or difference - we all owe it to each other to try to understand what it means to be different.

Screwed

2010-06-24T14:02:00.000-07:00

I got the call this morning from our service coordinator, the one I've been waiting for regarding the speech eval Finn underwent last week. I was informed that, yes, Finn now qualifies for speech therapy, but Regional Center has now decided to "enforce the law that went into effect last year" which, boiled down, means that we now have to go through our medical insurance to get services for Finn. Regional Center will continue to pay for Emily, Finn's OT, until her contract is up which is in two months I believe. All new contracts and new services, apparently, have to be submitted to private insurance first, and Regional Center will only cover services that are not covered by insurance.

What does this mean for us and for Finn? It means that we have to obtain referrals to therapists from our pediatrician, and we have to obtain authorization from our insurance carrier. We have an HMO, so we can only use providers in our network, and neither Emily nor Rebecca, the SLP who did Finn's speech eval and whom we were crossing our fingers to get as his speech therapist, are in our network. So it means no more Emily in a couple months, and no Rebecca. It also likely means that even if our insurance will cover therapy, it will only be a limited number of sessions per year (which may be fewer than he would have otherwise received). Regional Center would then cover any therapy beyond what our insurance will cover, but it would mean switching therapists yet again at some point in the future. Going through our insurance also means that it is highly unlikely that we will be able to get in-home therapy, and I will be required to drive across town to obtain therapy for Finn. Which I am not able or willing to do due to all the other commitments I have with my other kids. Oh, and it also means paying $20 co-pays for every therapy session.

Our SC did inform me that Regional Center is still willing to pay for Finn's therapy provided we give up in-home therapy and switch to center-based group therapy. She said there are two locations they contract with - the one she most highly recommends is about a 30-minute drive in clear traffic. Can't/won't make a commute like that. The other center is apparently local to me. I guess I will have to check it out before I reject it outright, but I have to say that center-based therapy is not what I want for Finn, for various reasons.

I knew this whole insurance thing was a possibility, and yet, it still took me by surprise. I started crying on the phone to our SC, to my chagrin, and then ranting at her. I told her that I feel that Finn has already been screwed because he was, by law, supposed to be automatically eligible for services from birth just based on his diagnosis of Down syndrome, and yet we've had to fight to even get him a speech evaluation, and here he is, about to turn two years old. I asked her, "What about the fact that he's entitled to services in the most natural environment? That's our HOME! Not some center 20 miles away." I really went off on her. And then I apologized, telling her, "Look, I know you're just the messenger, I know you're just doing your job. But you have to try to understand where I'm coming from. My kid is being screwed. And some day, when he's all grown up, society is going to look at him and say, 'Look at the retard who can't take care of himself!' And all because he's not being taken care of NOW the way he should be."

Ugh.

I don't even know if I believe that. I still find myself completely torn down the middle about services, about the value and the toll of therapy. I guess what upsets me so much is just the feeling that Finn and kids like him are so fucking dispensable. They're not valued members of society, they're not viewed as human beings with the potential to grow and contribute. They seem to just be very easily discarded. I feel a very palpable sense of marginalization right now, and I'm outraged.

And this whole thing, I swear to God, just makes me want to take Finn and the rest of my kids and go live off the grid. You know, some farm or commune or something, where it doesn't matter what Finn can achieve. Where he can just be.

I don't know what's going to happen now with therapy. I was too upset to give Amber an on-the-spot answer about switching to center-based group therapy. I guess she's going to go ahead and submit whatever necessary paperwork to our pediatrician to get the ball rolling on the insurance front.

Meanwhile, Finn is oblivious to all this bureaucratic bullshit. Either that, or he's decided to find solace in a bottle of vodka.

Okay, the bottle's empty, but I thought finding him with this was fitting.

Speech Eval

2010-06-18T13:20:00.001-07:00

We finally had our speech eval this morning. We originally had it scheduled for last week, but Finn got sick so we had to put it off.

Anyway, I liked the SLP a lot. She was very warm and spent close to an hour playing with Finn while asking questions of me and taking notes. When I told her that Finn has never received any speech therapy and that we've had to fight just to get this evaluation, she was appalled. When I told her that the reason we've been given is that Finn is supposedly "not cognitively ready to benefit from speech therapy," she was appalled.

So, basically we've been screwed big time as far as ST goes.

Unfortunately, we can't turn back the clock. Here we are, and all we can do is move forward from here.

She had lots of things to say and observations to make that left me feeling very hopeful. She noted that Finn does mimic certain sounds, he does babble quite a bit, he does follow some verbal cues and commands, and he definitely responds to music, which she said is a wonderful tool in teaching communication. She said, "He's got lots of potential." I told her, "He's got TONS of potential."

Without a doubt, though, he's got severe speech delays. He needs speech therapy. She's going to submit her recommendation to our service coordinator that he begin receiving ST as soon as possible, hopefully with her.

In possible bad news, there is talk that Regional Center is sending letters out to families informing them that they must go through their private health insurance now to receive services, and that Regional Center will only cover what isn't covered by insurance. This could be not so great for us because:

We would only be authorized to see therapists in our network (presently, neither Emily, our OT, nor Rebecca, this SLP are in our network), and those therapists may not do home visits, plus it would mean starting with therapists we don't know or have any rapport with;
The co-pays! Sheesh. At 20 bucks a pop . . . sheesh.

But so far we haven't gotten any letter from Regional Center about going through our insurance, so for now I'll just keep my fingers crossed.

Can someone enlighten me about orthotics?

2010-06-11T10:16:00.000-07:00

Seems like orthotics are the hot thing in toddlers with Ds. I'm torn. How do I know if Finn needs orthotics? Keep in mind that he does NOT have a physical therapist, nor am I interested in getting one at this point. However, is it only a PT who makes the recommendation for orthotics? I wish I would have asked about this at the Ds clinic a couple months back - it just didn't occur to me at that point. Do all kids with Ds need orthotics? Finn has always had pretty good muscle tone and apparently reasonably firm ligaments and joints - he's never been much more floppy or bendy than my typical babies were. I do think he's flat-footed, but aren't all babies and toddlers flat-footed until they get older? Finn has been pulling to stand for several months, and cruises very proficiently along walls and furniture, but I'm starting to wonder if orthotics is the one thing that's holding him back from actually walking. He has an appointment for his 2-year well baby check next month, so I suppose I could ask our pediatrician about it, but I'm not super confident that he's going to know much more than I do about this issue.

Would appreciate some input from you knowledgeable, experienced parents out there!

Unveiling: Kevin's Website

2010-06-06T19:35:00.000-07:00

It's up and running!!

As it turns out, the school project was to create a website. However, the students did not actually publish their websites to the web. So we took Kevin's and published it ourselves. You can see it here:

got down syndrome?

I am incredibly proud of Kevin for being such a loving and vocal advocate for Finn and for all people with Down syndrome. He continues to make quite an impact on his peers.

Many, many thanks to everyone who sent photos of their beautiful children for Kevin to use on his site; we are very grateful!

Save Your Pity

2010-06-06T13:45:00.000-07:00

Notice anything different about this duck?

Disability is everywhere.

Before you furrow your brow and go "Awwwww . . ." in pity, you should know that this duck was doing all the things the other ducks were doing: getting around on land and in the water, chasing after bread crumbs, and squabbling and playing with her flock mates. She seemed perfectly content.

Don't pity my son because he has an extra chromosome in each of his cells. Don't pity him because he looks a bit different, or because he's slower to learn than ordinary kids. Don't even pity him because there are certain things he may never be able to do. And please don't pity our family because by some random twist of fate, Finn landed in our lives.

Save your pity for children who have nobody to love them, who are abused, neglected, or don't have shelter or enough good food to eat. Save your pity for children who are living in war zones, children who are suffering from terrible illnesses. Save your pity for families who desperately want but are unable to have children, or for families who cannot provide for their children, or who have lost children to sickness or accident, or who are watching their children suffer and waste away.

Don't pity us for the hardships you might think we have because of Finn. We are some of the most fortunate people alive.

And don't pity a duck who can swim and fly and make sure she gets her share of the bread crumbs.

Domestic Adoption

2010-06-05T09:27:00.000-07:00

In the Down syndrome blogging community, international adoption of babies and children with Down syndrome is a well-known reality. Did you know, however, that there are babies and children with Down syndrome right here in the United States who are waiting for adoptive families? Adoption of a child anywhere in the world is a loving choice; to my way of thinking, there are no geographical boundaries or borders, nor should there be patriotism, when it comes to providing a loving home for a child in need. That said, there may be families who have considered adoption of a child with Ds, but the prospect of international adoption seems too daunting. Enter organizations like The National Adoption Awareness Program, which facilitates adoptions of children with Down syndrome within the United States. This organization also facilitates the release of babies with Ds by their birth families who make the loving choice to place them up for adoption.

There are options; please pass this along.

Perspective

2010-06-04T14:00:00.000-07:00

There is a family in our neighborhood who have been faced with a devastating tragedy. Last year, their 4 year-old son was playing outside in the yard and somehow got a jump rope wrapped around his neck. He survived, but he has suffered profound and irreversible brain injury. He is now in a 24-hour care facility.

We don't know this family, although it seems that most everyone in the neighborhood knows about their situation. Their older son played Little League with Kevin a few years back, so we were acquainted with them in that way back then. I was talking to another parent today who is well-acquainted with the family and she told me that the little boy is for the most part non-responsive. He's not expected to ever improve much beyond the state he's in now.

And people think Down syndrome is something to fear.

Honestly.

I look at Finn, and I see his delays. My god, he is almost two years old and not yet walking or talking or even self-feeding with any reliability. But you know what? Who cares? I don't. I just don't. He is the sunshine of my life, he knows so much, he loves and is loved. He will walk, and talk, and do a million other things over his life. The sky is the limit.

I am thankful for Finn, for everything about him, for everything he continues to teach me and my family every day about what matters.

This is not a new topic for me; I've touched on it many times here before - the whole prenatal testing issue and the apparent quest for perfect children. There is no such thing as perfect - at least not permanently perfect. Anything can happen, in the blink of an eye. There are no guarantees in life. There are no guarantees that the "normal," healthy children we give birth to will remain "normal" and healthy forever.

So be thankful for what you have, in all its imperfection.

Speech!!

2010-05-26T09:50:00.001-07:00

I've written before about my frustration with Finn still not receiving speech therapy. Well, that may finally be about to change (finally!).

Emily, our OT, has been of the mind all along that Finn not only needs ST pronto, but is in a position to absolutely benefit from it (despite our SC deeming him "not cognitively ready to benefit from ST"). She sent a letter to our SC a few days ago strongly recommending that Finn receive ST based on the readiness she has observed in him. I was pleased that Emily cared enough to take it upon herself to send the letter, but in all honesty, based on our track record with our SC, I really didn't expect anything to come of it. I figured Amber (SC) would ignore the letter. But I got a call from Amber this morning saying she got Emily's letter and she is arranging for Finn to get a speech eval by a very reputable SLP in our area (I've heard really good things about this therapist).

I'm very pleased!

There's a New Superhero in Town, and His Name is Kevin.

2010-05-25T17:14:00.000-07:00

There was an incident at school today. Here, Kevin, age 13, recounts it in his own words:

So today I came out of my first period class (language arts), and my friend came out of his first period class (tech). He told me that we had a substitute in tech. And then he told me that in class, the sub had used the word “retarded.” He told me that she said, “Oh, hey, I did this thing wrong. I must be really retarded today.” I couldn’t believe it, and neither could he. So I waited for period 4 to roll around, which is when I have technology. And after class I went to the sub and asked to talk to her. I said, “I heard in first period that you used the word ‘retarded’.” At first she tried the denial approach. “Oh, did I?” she said, sounding surprised. “Yes, you did,” I said. “And I just want you to know that that word is a very offensive word referring to disabled people, and that I have a brother with a disability.” “Well,” she said, “I think it depends on the context you use it in.” “No.” I said simply. “No. It really doesn’t.” “Well,” she continued, (personally, I think she was still attempting to defend herself. Some adults are like children! They won’t own up to the fact that they made a mistake.) “I would never use the word referring to someone with special needs. I respect your view.” “Thank you.” I said, and left. It was a bit embarrassing because the kids in line for the next class were staring at me. I’m not sure why. But I’m glad I did it because if I hadn’t I would have felt guilty or disappointed, and when I told my friend that told me in the first place what happened, he said “Way to go, dude! You stood up to a teacher!”

The kid's got chutzpah, don't you think? And certainly more integrity and more heart than some adults.

I am blown away that a teacher would so casually throw a word like that around. I can hardly wrap my head around it.

And it still amazes me how people will defend their use of the word by saying that they were not directing it at a person with actual disabilities, and they wouldn't dream of doing any such thing. I mean, really. How can people not see that when you say anything or anyone is "retarded," you are making a derogatory comparison to a person with actual developmental disabilities? So, by their logic, would it be okay to say "nigger" as long as you weren't actually saying it about a black person? Or would it be okay to say "faggot" so long as you weren't actually directing it to a person who is homosexual?

Come on, people.

In any event, I am incredibly proud of Kevin.

Baby Steps

2010-05-18T21:17:00.000-07:00

One of the most trying challenges we've faced with Finn is feeding. It has been a long, slow road getting this boy to eat anything other than purees. But look at this:

That there's what you call self-feeding :) Just a couple weeks ago, anything I put on his tray would be flung to the floor in short order. And anything with any texture would have been gagged on and more often than not, hacked up. And he does still gag, but it's getting better. And he's feeding himself! This is big, folks. Progress.

Everything in its own time

2010-05-12T21:13:00.000-07:00

Take a look at this:

This is a first for Finn. It happened tonight and I was there to see it! He's been proficiently cruising - stepping sideways - along furniture and even walls for several weeks now, but putting one foot in front of the other is a first. He figured it out all on his own. We actually have a little push-toy meant for this purpose, but each time I've tried to stand him up behind it, he balks. He just needed to find his own way, in his own time.

Honestly, it brings angry tears to my eyes all over again when I think back to how Eun, his former PT, used to force him to walk laps around the living room, held up by his hands, with weights on his ankles, and him crying in protest. That was just never going to work, and it was mean to boot. I just don't think walking is something you can force - as with any child, they'll do it when they're ready.

And I know Finn is still likely months away from being a full-fledged walker, but man, look at him go!

Smarty Pants

2010-05-12T09:19:00.000-07:00

Here's a little snippet from OT yesterday:

Emily had Finn playing with shaving cream on a mirror. He was quite enthralled by it (I think especially by the cute little boy who did all the things he did and made all the sounds he made). She comes up with all kinds of creative activities to engage Finn - like having him retrieve little pom-poms from a plastic ice cube tray - excellent practice of the pincer grasp.

Finn is very vocal these days, and it feels so much like he's just on the brink of . . . something. He clearly wants to talk with us, and I believe that hidden in there is an ability to develop spoken language. He's trying so hard.

He now says "mama" and "dada" in context.
He claps his hands and gives a hearty "YAYYY!!" when pleased with something (sounds like "AAAAHHHH!!"
He mimics me saying "Shhhh!" (Sounds like "tthhhh")
He mimicked me saying "water" the other day (sounded like "addah")

Oh, and also, he does this fake cry when I tell him "no" (because the truth is, the boy is into EVERYTHING). Clearly, he's not above a little manipulation to try to get his way about things.

I remember shortly after Finn was born, I started reading Babies With Down Syndrome, and I got to the part that stated very matter-of-factly that children with Down syndrome are mentally retarded. It hit me like a brick to the chest. I knew next to nothing about Down syndrome at that point. I guess I had some vague understanding that they were the ones who were in the Special Ed classes when I was in grade school. To me, they were just oddities, slightly strange-looking people, usually with bad haircuts, who lumbered about awkwardly. My mother referred to them as Mongoloids when I was a kid - I think that was just the still-accepted terminology back then. I probably only saw a handful of people with Ds in my entire life before Finn was born. So I just didn't know much at all about it, what it would mean for us, for our family. When I read in that book that my son is mentally retarded, I was horrified and scared. What did it mean? I envisioned him growing into one of those people with a bad haircut and ill-fitting clothes. I envisioned our relationship always being one of caretaking, and not one that involved any two-way interaction.

For the longest time, coming to terms with the mental retardation piece of it was the hardest part of the whole thing for me. Not because I had this need to have brilliant, high-achieving offspring, but because I very much wanted to know that I would be able to have an actual relationship with my son that went beyond my leading him around.

And I remember posting about my struggle here, and Tara Marie over at Emma Sage telling me that as you go along, the whole mental retardation thing means less and less in your daily life. I didn't believe her. I thought it would always be this glaring neon sign we'd be dealing with - a gargantuan elephant in the room.

But Tara was right. It means less and less these days. Really, what does it mean at all? It means that it takes Finn longer to master certain skills. It means that he has a learning disability, and learning will take him longer than it takes the average kid. It means that some concepts he might never fully grasp.

So what?

Right now, it's just not a big deal. And that's the truth.

Request

2010-05-07T20:33:00.000-07:00

My oldest son, Kevin, whom you might remember from The R-Word Speech fame, is working on a school project for which he has to create a website. He has chosen to create an advocacy/anti-r-word/Down syndrome informational website. (This was all his idea, by the way - no prompting whatsoever from me. Actually, he told me that some kids from school who watched him give his speech that night suggested it to him - way to make a difference, Kevin!) He is going to be putting some of his favorite photos of Finn on his website, but would also, if possible, like to have some photos of other children with Down syndrome. So I'm putting out a request: if you have a photo of your child with Ds which you would be willing to allow Kevin to put on his website (which will eventually be published to the internet), please email it to me at bloggymamaATgmailDOTcom. When his website is completed and published, I will post a link here.

Thanks!

Mama

2010-05-06T09:24:00.000-07:00

I remember reading some interview with Sarah Palin a while back, in which she was talking about her son, Trig. At the time, Trig was approaching his second birthday, I think. In the interview SP said Trig was not yet talking, and that she longed to hear him say "mama." I remember reading that and thinking, although I understand that longing, I found that I didn't feel that with Finn. The attachment between Finn and me is undeniably there, whether he says "mama" or not; there is no question that he knows I'm his mama and that I adore him, and that's good enough for me. So it really hasn't been a big deal to me that he hasn't said "mama."

Finn actually started babbling "mamamamama" when he was around seven months old. It was clear that he had the ability to make those sounds, but as far as I could tell, that's all it was - babbling. It wasn't a specific, purposeful attempt on his part to name me or address me. And after a while, he stopped babbling "mamamamamama" and moved on to other sounds.

A little while ago this morning, Finn was playing on the floor next to me as I folded laundry. Suddenly he stopped what he was doing, looked up at me, right into my eyes, and said "Mama." He had a big grin on his face, and then he started clapping for himself. It was a first: he was actually purposefully saying "mama" to me. And it was the sweetest sound in the world.

I guess it was a big deal to me after all.

A Special Visit

2010-04-29T10:19:00.000-07:00

Yesterday we got to meet Lisa of Genetically Enhanced! She was in our neck of the woods on business and stopped by our house for a visit. Such a great girl, that Lisa! We wiled away the afternoon talking about all sorts of stuff while my kids ~~ran around screaming like banshees, thereby undoubtedly acting as birth control on our guest~~ played quietly and shared nicely with each other, thereby making a good impression :)

Seriously, though. Finn was completely enamored with Lisa, as you can see:

And such a good sport she was, letting him drink from her water glass . . .

And play in it, too.

I love meeting my "internet peeps" in the flesh!

I hope we can do it again sometime (if we didn't scare you away for good, Lisa!), but next time I hope to get my hands on that little Sheridan!

Strides

2010-04-27T13:41:00.001-07:00

It seems that I have less and less to say these days here on FJ. I'm still here, but I guess Down syndrome is just not the focal point for me these days that it once was. There is a period of time when you start out on this path when Down syndrome is the focal point, and there's lots to say during that time. There's an adjustment to made, coping and accepting and figuring out to be done. And over time, you slowly lose that focus, and life just becomes life, and your child is just your funny, cute, huggable, quirky child.

And so it's been for me. I guess those are my strides.

As for Finn, well, he's making strides, too. Great strides. I have all these video clips of him doing this and that, and I keep thinking I'll sit down and upload them all. But, eh. Probably people are getting tired of my recent video-blogging, and honestly I'm feeling too lazy to do all the editing and uploading. But I will brag nonetheless.

First of all, he's cruising along the furniture like mad lately. Remember how he had stopped pulling to stand and I was worried? Ha! Apparently just a little break while he focused on other things. He went back to pulling to stand with a vengeance, and now cruises as well. And climbs. And climbs back down off of things backwards, which he figured out all by himself.

I got him this toy . . .

. . . thinking it would help develop cognition (with its cause and effect theme) and fine motor skills. In order to open each door, the button in front of it has to be either pushed, or slid, or turned. Finn got it almost right away. And he mastered the one that has to be turned before any of the others - which is the last one I expected him to master!

And speaking of cognition, he just really seems to be making leaps lately. I've really started seeing him show some problem-solving skills. Like knowing to turn his little piano with the keys facing towards him when he finds it upside down. Or like this morning: I wanted to vacuum our bedroom, but I wanted Finn out of the way because he likes to chase the vacuum cleaner. So I put him out in the living room with his sister and closed the bedroom door and proceeded to vacuum. Well, our bedroom has more than one entrance, so what do you think Finn did? He went around and found a door I had left open and came in anyway!

He likes to take my hands in his and make me clap, hand-over-hand (as if he's the therapist). So he's seeing that he has control over his environment. And he's clapping himself all the time, and saying "YAYYY!!" in context. He also says "up" now. It's more a mimicking thing, he doesn't yet say it in context, but I see language developing. And lots of babbling, multi-syllable stuff.

Feeding is slow-going. But strides there, too. Baby ones, but strides nonetheless. He's doing better with figuring out how to take bites and chew. Still a lot of gagging going on, but I think we're slowly headed in the right direction.

Really, I can't ask for anything more. He's perfect.

Wordless Wednesday

2010-04-21T11:42:00.001-07:00

Top

2010-04-16T10:49:00.000-07:00

Sometimes - pretty often, in fact, I find Finn doing something that just amazes me. Like this:

It sure looks to me like he gets it, don't you think? And then I feel almost guilty for being so surprised. I really try so hard to keep my hopes for him high, and my expectations reasonable. Maybe on some level, I set the bar for him just a tad too low.

Anyway, go Finn!

Struggling

2010-04-11T20:32:00.000-07:00

I've been thinking about this whole struggling thing. How Finn has to struggle so much to achieve the things that other kids breeze through. How sometimes it feels like everything is a struggle for Finn. And how sometimes I get down about it.

Today I had something of an epiphany: Finn doesn't struggle. In fact, pretty much nothing is a struggle for him.

See, here's the thing: struggle implies suffering, at least to some degree, or working against some force or great odds. In fact, the dictionary app on my iPhone defines "struggle" as "to make (one's way) with violent effort."

And you know what? That doesn't sound like Finn at all. He's not suffering in his efforts to achieve or to reach milestones. I wouldn't even say that he's working against some force or great odds, and I certainly wouldn't characterize him as making his way with violent effort. He's just going along, living life, exploring the world, figuring stuff out along the way, mischievous, inquisitive, and happy as a clam (well, mostly - except when I'm changing his diaper against his will or removing him from the edge of the bathtub, or, like tonight, when he's vomiting up his dinner all over me).

Any struggle that's going on is mine, and mine alone. Finn has no idea that he's any different from anyone else. He has no idea that it's taking him longer to reach milestones and master skills than it took his brothers and sisters. He doesn't have a clue that his abilities have been reduced to numbers in a thick stack of papers called an IFSP. He doesn't care. And he's not exerting any huge effort to get to this arbitrary place he's supposedly supposed to be at. He's just being himself, and he's perfectly content with that. He's doing everything he's supposed to be doing, on a timeline that's his alone. I'm the one who sometimes feels sad because he hasn't yet mastered this or that. I'm the one who sometimes struggles knowing that he's always going to be different.

I guess I need to lay off the struggling, huh?

Check Him Out!!

2010-04-10T14:57:00.000-07:00

Hand-me-downs

2010-04-09T10:46:00.000-07:00

I have a soft, squishy spot for seeing my little ones in their older siblings' hand-me-downs.

This is Joey at 20 months (6 years ago!) -

And here's Finn, today, at 21 months -

Love my boys :)

The R-word: A Different Perspective

2010-04-08T12:37:00.000-07:00

This morning somebody left a comment on a post I wrote a while back, Beaten Down. Since this person went to the trouble of trolling the internet looking for sites on which to share his/her thoughts, and then created a Blogger profile specifically for the purpose of leaving his/her thoughts on my blog, I don't want any of my readers to miss out on this person's words of wisdom:

Not only am I amazed by your reaction to a word, but more so that you feel the person who used it had somehow wronged you. It is unfortunate that so many people who have been cursed feel the need to use their grief as a weapon on others around them. Know this: You are not a hero; the world does not owe you anything because you created a defective child and you have no right to molest the lexicon to suit your unrealistic sensitivities. What's next? Outlaw the word fat, short or ugly because those words can be hurtful? You are the true monster here, not the ones who use your dreaded word. You are an enemy of free speech and therefore free thought.

Apparently not being satisfied with his/her own words, s/he went on to leave this comment just a few minutes later:

Not only am I amazed by your reaction to a word, but more so that you feel the person who used it had somehow wronged you. It is unfortunate that so many people who have been cursed feel the need to use their grief as a weapon on others around them. Know this: You are not a hero; the world does not owe you anything because you created a defective child and you have no right to molest the lexicon to suit your unrealistic sensitivities. What's next? Outlaw the word fat, short or ugly because those words can be hurtful?
I am sure it is stressful dealing with a handicapped child and you have every right to be offended, but to work to outlaw words is the first step in working to control other forms of expression.
The world should not have to walk on glass to suit your fear of semantics.

To this person, I have this to say:

First of all, I would like to extend my deepest apologies for the personal offense my defective child is to you. Likewise, I am truly and sincerely sorry for being the monster that I am for bringing such a child into the world and inflicting him on society. You are right: it is horribly wrong for me to expect or fight for compassion and acceptance for my child - or for anyone else for that matter. Your right to free speech is much, much more important. Your apparent philosophy is clearly the better way to ensure that the world is a safe, good place for everyone to live - at least the people who have a right to live, that is (excluding, of course, defective children like my own, gays, blacks and other people of inferior ethnicities, Jews, and, well, I'm sure we can all think of a lot more).

I have no doubt that your children - if you have children - are perfect specimens. You would not accept anything less, and rightly so. The world is blighted enough by inferior, defective people. You would abort any fetus that grew in your (or your wife's) womb that did not pass every possible test and screening for normalcy and perfection. And I don't blame you one bit. Raising a handicapped child is a burden so huge and monstrous and oppressive that I can't even begin to describe the hell I live in every day. I cry all the time, I can't eat or sleep, I have plum-colored circles under my eyes which tell of my continuous pain, and I wish only for the sweet mercy that death will bring me to deliver me from this hell.

However, I'm guessing that you don't have any children. A person as smart as you wouldn't take the risk, knowing that even a perfect fetus can grow up to become an alcoholic, a child-abuser, a drug addict, a homosexual, a hemophiliac, a person with autism, or a host of other things. You also no doubt realize that your perfect fetus could become maimed in a terrible freak accident, or become brain injured by sickness or accident. So, no, I'm sure that someone of your intelligence and wisdom wouldn't take the risk.

I have a few final words I'd like to say to you:

FUCKING LOSER. YOU ARE AN OOZING BOIL ON THE ASS OF HUMANITY.

Just exercisin' my right to free speech.

Another Connection

2010-04-07T14:04:00.000-07:00

I've been wanting to get my girls into swim lessons. My dear friend, Jen, put me in touch with a local college girl who gives private swim lessons to kids over the summer. So I called her last night and signed all three of my girls up for three weeks of daily swim lessons for this summer.

That in itself is exciting. To add to the thrill, though, is this: this swim teacher? She's one of six kids in her family, and . . . (drumroll . . .) she has an adult brother who just happens to have Down syndrome. Jen had told me that when she gave me her contact info, so when I talked to the swim teacher last night, after we covered the business of swim lessons, I took a deep breath, and said, "Can I ask you about your brother?" I told her that I have a little boy who has Down syndrome. She was very open with me and told me all about her brother. She said that he's almost 25, and that when he was born, the nurses told her mom that she may as well leave him at the hospital and give him up for adoption, because he'd never walk or talk or do anything and would just be a burden. Man, oh man. She said thank goodness her mom thought differently, because here he is 25 years later, graduated from high school, with a part-time job doing landscaping, healthy and happy. I asked her what it was like for her growing up with a sibling like him (she is younger than he is). Know what she said? "I've never known any different. When I was little, I thought every family had a kid like him, and when I got older and realized that not every family does, I thought the families that don't have a kid like him were strange." She said that some day when she gets married, she would like to adopt a child with Ds.

It was just really, really neat to talk to her.

***

In other news, during the feeding portion of OT yesterday, Emily got Finn to eat TWO entire cheese puffs. She thought cheese puffs would be good because they dissolve fairly easily. Okay, it's junk food, but seriously, folks, I'm up for anything at this point. I'd be thrilled to see him eat candy and pizza. Anyway, it was a sloooooowwwwww process, feeding him those cheese puffs - it took a good 20 minutes for him to eat the two - but he took bites off of them, and he chewed (!!), and swallowed, with nary a gag or spitting out.

Progress, people. Progress.

How an Avocado Did Me In

2010-04-05T21:12:00.000-07:00

I was going through old pictures last night, reliving Springs and Easters of years gone by. In the midst of it all, I came across these photos:

They're from a year ago. I remember I took them because I was so thrilled at the time that I had gotten Finn to eat some avocado - he actually seemed to like it (not that you can tell from the picture!). I'm sure I thought at the time that we were well on our way to all manner of table foods.

I felt really, really sad seeing these pictures last night. A whole year has passed since then and guess what: Finn still only eats pureed baby food. Table foods? Yeah, right. Oh, he'll scrounge the occasional Goldfish cracker discarded on the floor by one of his sibs, and he'll sometimes even manage to get it into his mouth. Sometimes he'll suck it till it's soft and mushy and swallow it, but he's as likely as not to gag till he's red in the face and hurl whatever's in his tummy. Sometimes I can get him to take a few bites of a cheese omelette or some oatmeal, or a bit of cookie placed strategically between gum and cheek. But other than that, it's strictly baby food and mama milk.

What I'm getting at is that there has been very little progress over the last year in the way of eating. I know that with time - lots and lots of time - and therapy, and perseverance, he will eventually eat regular table foods (. . . right?).

It's the struggle that's getting me down. The fact that NOTHING comes easily for Finn. I mean, this is not news, it's not a revelation or an epiphany. But for some reason, that picture of the avocado? It was like a slap in the face. Here we are, an entire year later, still eating baby food. He doesn't even like avocado anymore!

I try very hard to just live in the moment with Finn, to not look too far ahead and wonder and worry, to just appreciate what is now. And most of the time, it really isn't too hard to do that. I try hard not to make comparisons. That's a little harder. When you have as many kids as I do, it's hard not to make comparisons. But I try not to dwell on those comparisons, and usually it's not too hard not to dwell.

I've said a thousand times that I don't care when Finn walks. And most of the time that's true, I really don't care. Until I see pictures of what my other kids were doing when they were the same age Finn is now. Until I hear about other babies - babies with Down syndrome! - who are around Finn's age and doing more than he's doing. And every day I'm noticing a little more how much harder it's getting to lug around a 22-pound creeping-up-on-two-year-old.

And then I remind myself that how soon Finn walks, or accomplishes anything else - has no bearing on how far he will go in life. It has no bearing on his capacity for love and happiness, and it is not a barometer of our parenting.

I feel guilty even admitting that I have these feelings sometimes. In my eyes, the sun rises and sets on Finn - I mean that with all my heart. But sometimes this is hard. Sometimes it hurts my heart. Sometimes it makes me sad.

Brothers

2010-04-01T14:04:00.000-07:00

Blog Love

2010-03-31T14:10:00.000-07:00

Here are the rules:

1. Copy and paste the award on your blog.

2. Name the person who gave the award to you and link to their blog (or hyperlink).

3. List 10 things that make you happy.

4. Pass the award on to other bloggers and visit their blogs to let them know.

This award was passed on to me by Maggie over at Take a Walk on the Happy Side, where she had some very kind things to say about me. I am flattered, honored, and humbled. It really is so nice to receive recognition, especially from someone I hold in such high esteem. Maggie has a beautiful pair of identical twin boys who each sport a bonus chromosome, and she writes a wonderful blog. If you haven't visited her blog, go check it out.

Ten Things That Make Me Happy (in no particular order):

1. Blog love! Did I mention how nice it is to receive recognition? It makes my day.

2. Writing. Really. Writing is such a big part of me. It's a balm, an outlet, a way to connect to others.

3. Reading. I always have a book going, and I always carry a purse big enough to fit a book into so I can read on the fly.

4. Hanging out with my husband. I know that sounds corny, but it's true - I totally dig him, even after almost 11 years together. He's a great guy, a wonderful father, and he makes me laugh until I pee my pants. Oh, and he cooks.

5. Ice cream. Particularly Ben & Jerry's Half Baked or Brownie Batter. But really, any flavor will do.

6. Catching my kids spontaneously hugging each other. It makes everything else seem worth it.

7. Getting the latest issue of People magazine in the mail every Thursday. Sad but true. That's often the highlight of my week.

8. Snuggling with a kid or three in bed on a weekend morning.

9. My morning coffee. Can't do without it.

10. A brisk, solitary walk on an overcast morning, alone with my thoughts. Very cleansing.

I'd Like to Pass This Award to:

Let me say first that there are so many wonderful blogs out there. My Google reader is full of them! There are three blogs in particular that I'd like to recognize:

The Conservatory For Flittering Thoughts, by our very own Dan of Down With Oz. If you haven't checked out his newest blog featuring his poetry, do yourself a favor. It's seriously awesome.

Bridget's Light - This has been one of my favorite blogs for a long time. Lisa is such a wonderful writer and advocate and, truly, Bridget's light shines through in all of Lisa's writing.

Mirabel Ruby - This is a fairly new blog. Emily gave birth to Mirabel Ruby this past January and has been writing about her beautiful new daughter and the changes her family is undergoing ever since. I really admire her grace and outlook.

Thank you again, Maggie!!

A Close Encounter . . . or, My Stalking Finally Pays Off

2010-03-29T21:14:00.000-07:00

I'll admit it: I like to do my grocery shopping on Monday mornings because I know "Linda" (not her real name) works on Monday mornings. She's the girl who bags groceries at my supermarket, and who has Down syndrome (Michael talked to her once and posted about it here). And who has been the object of my secret admiration for months.

I've always wanted to say something to her, open up a conversation, you know? But what? How? I mean, do I just say, "Hey, my kid has Down syndrome just like you!" Uh, no, I don't think so. And really, I don't want to bother her while she's working anyway. And there's a part of me, too, that feels like I have no right to intrude on her life just because it so happens that I ended up with a child who has the same diagnosis she has.

But still. I like to do my shopping when I know she'll be there. And I like to take Finn with me, and purposely go in her checkout line. I always hope she'll look at Finn and . . . I don't know . . . just know, I guess. I guess I've been waiting for her to open a conversation.

Anyway, so this morning I took Finn and Lilah to do our grocery shopping and we got in her checkout line and as she's bagging our groceries, she admires Finn's faux hawk. She asks me how I get his hair like that, and I tell her with gel. "He lets you?" she asks. "Well, he struggles, but I manage." Then she tells me how that's just like when she was little, she remembers her mom trying to fix her hair and how she didn't like it. She's cooing at Finn and saying how cute he is. So I take a deep breath and smile and say, "He has Down syndrome, too." Her eyes lit up and she said, "Does he?" "Yes, he does," I tell her. She said, "He can work here with me when he grows up."

I'm still smiling. I mean, it was really a very mundane and brief conversation, but it was seriously thrilling for me.

Ds clinic visit

2010-03-24T14:13:00.000-07:00

Our appointment with our local Down syndrome clinic was this morning. It's really a neurology clinic affiliated with the children's hospital, seeing patients with all kinds of neurological issues.

Although it was not a whole team of doctors and specialists as I had imagined a Down syndrome clinic would be, I'm not sorry we went. It's run by, as far as I can tell, one doctor, a neurologist. After filling out the requisite paperwork, we were taken back to a small exam room where I turned Finn loose from the stroller and he proceeded to wreck the joint :) A "coordinator" came in to ask some questions, and he noticed Finn's Stones t-shirt, so we had a nice chat about the Stones and when their music lost its magic (he would have had a better conversation on this subject with my husband, for whatever that's worth).

Then Dr. Tourney, the neurologist came in. What a character! Kind of a goofy-looking, middle-aged woman. No white coat, just street clothes, and a child's backpack in bright, primary colors on her back (containing Finn's chart, etc.). Way to put the patients and parents at ease! I liked her right off. She had a thick British accent and kept referring to Finn as "a delightful little chap," and our pediatrician, who, it turns out, she went to medical school with, as "quite a lovely fellow."

I can't say we learned anything new from the appointment, though she is obviously extremely knowledgeable about Down syndrome. We were there for about an hour, and she asked a ton of questions about Finn from birth to now, and she examined him. She seems to think that our pediatrician has covered everything very well as far as diagnostic tests and so forth for Finn, and didn't seem to think anything is necessary that we haven't already done. I did mention the eye-rolling thing to her (which I still notice him doing from time to time), and from what I described, she doesn't think it's anything to be concerned about. She's also not concerned that he was pulling up to standing and has now stopped; she said that development for all babies - not just those with Ds - tends to often be a start-and-stop process.

So no earth-shattering revelations, but I'm glad we went just the same, just to have all our bases covered. The doc said she'd be "delighted" to have us come back once a year so she can

"have a little look at the chap."

Today

2010-03-23T17:12:00.000-07:00

Finn had OT this morning. I have to say that Emily really offers more than just OT - she works on a variety of things with him including a little speech, a little PT, a little cognitive therapy. I'm very pleased with how things are going. She is not at all concerned about the fact that Finn has stopped pulling to stand. Like several commenters mentioned, she also said that a lot of babies regress in one area when they're making strides in another area (and I do remember this was the foundation of one of my favorite baby books when Kevin was a tyke, Touchpoints by T. Berry Brazelton).

Anyway, he showed us today that he can pull to standing, he just doesn't seem to want to. So I trust that it'll come back when he's ready.

In other news, we had parent-teacher conferences today, and the twins' kindergarten teacher was telling us about a neighbor of hers and her husband's. They live in a condominium development and there is a young man in his 20s who has Down syndrome, and is living there in a condo on his own. She said he's got lots of support from family, but he's living on his own, he has friends over, he plays his stereo and dances, and he catches the bus every morning to go to work. I almost cried on the spot hearing this!

The possibilities are endless, I tell you!

Progression, Regression, and the Inevitable Worry

2010-03-22T14:12:00.000-07:00

Finn has completely stopped pulling up to standing over the last week or so. Before, he was pulling up to stand on every piece of furniture and surface he could get his little hands on, and even taking a few cruising steps here and there. And then it just stopped. A week and a half ago, I took him and his sister to the park, where there is a set of eight or ten stone steps leading up to a big grassy area. I couldn't keep him off those steps; I would set him on the ground, he was crawl over to them as fast as he could, navigate his way to the top and take off scampering into the grass. I'd retrieve him, and he'd start the whole thing over . . . and over . . . and over. I took the kids to that very same park yesterday morning and Finn crawled over to those steps and sat at the bottom looking up at them, unwilling to go any further.

I can't figure it out. And I'm trying very, very hard not to worry myself sick over this.

He's not showing any other worrisome signs or symptoms. He seems well and happy (you know, except when he's good and crabby), and his babbling seems to really be taking off - not that he's saying any actual words, but he seems to be making a wider variety of sounds ("ba," "ma," "da," "ga,") using different inflections as if he's really trying to get some point across.

But still. This regression. It has me worried. What does it mean?

I try to remind myself that with Finn, progress has not always been in the same form as it's been with my other kids. Sometimes it's forward, sure. But sometimes it's lateral. Sometimes it's static. And sometimes it's two steps forward and one step back.

[Deep breath . . .]

Speech Therapy and Feeding Issues

2010-03-18T20:40:00.000-07:00

A lot of people have asked me why, at 20 months old, Finn doesn't qualify for speech therapy.

I know, it's crazy, huh?

It seems like pretty much everywhere else in the country (from what I've gathered reading other blogs), babies with Ds typically receive ST from birth, addressing oral-motor issues and development before speech begins to emerge. This make complete sense; a SLP is trained and educated to address oral-motor issues and development which, it would seem indisputable, impact both feeding and speech development.

Here in California, though - or at least in my part of California (as I understand it, EI varies widely even from county to county - why, oh, why isn't there a universal standard?), feeding issues are addressed by occupational therapy. And Finn's OT actually is working with us to address Finn's feeding issues (he is still on purees only; he doesn't seem to know how to chew; he has pretty serious texture aversions and a highly active gag reflex). She's good, and very patient, and seems to have all kinds of tricks up her sleeve. However, it's not really her area of expertise. She's a trained OT, originally from Chicago, where feeding issues are addressed by SLPs. It was only when she moved to California a handful of years ago that she began addressing feeding issues, because that's one of the things OTs here are expected to address.

What I was told by our service coordinator a long time ago was that Finn wouldn't even be evaluated for ST until he was 18 months old. So when we had his last IFSP meeting and eval last month when he was 19 months, he was deemed not ready for ST because he's apparently "not cognitively ready to benefit" from ST. Despite the fact that all over the IFSP paperwork that came out of that meeting, it says, "Mom's main concerns are speech and feeding."

Even Emily, our OT, wants to see him receive ST . . . now. And if I put up a big fight, I might be able to get it for him. Maybe. But part of my problem currently, too, is that there are no SLPs available to do in-home therapy right now in my area, and with the chaotic and very full schedule I already have with all of the kids, it's not feasible for me to travel across town for center-based therapy. When my other kids are out of school this summer and our schedule opens up, it might be more feasible, although I'd really rather receive in-home therapy. But anyway, I do plan on going after ST for Finn more aggressively this summer.

Oral Motor Myths of Down Syndrome

2010-03-17T11:11:00.000-07:00

There is a really good article here (scroll down to The Oral Motor Myths of Down Syndrome; it's a PDF file, so I can't link directly to it here). It explains in excellent and logical detail the progression of events that likely leads to the tongue protrusion typically seen in Down syndrome, as well as the effects of this on speech development. In a nutshell, it's apparently a circular process: although all babies, including those with Ds, are born nose-breathers, due to low muscle tone, babies with Ds typically have a weak suck at birth. This leads to predictable feeding patterns, which results in fluid buildup in the middle ear, which results in chronic congestion and often respiratory illness, which leads to mouth-breathing and the relaxed and protruding tongue typically seen with Ds, which results in a high, narrow palate, which results in both feeding and speech problems. According to the article, much of this can be prevented by vigilant feeding practices from birth.

The article talks mostly about bottle feeding, but does also touch on breast feeding, and how positioning a baby correctly while feeding, either by bottle or breast, can prevent the fluid buildup in the middle ear which leads to all these other issues.

Except for a short time while he was in the NICU, Finn has been exclusively breast fed. I've always operated under the belief, or at least hope, that this was helping him to develop the oral-facial muscles necessary to facilitate speech development. However, at 20+ months old, and having been breast fed his whole life thus far, although he babbles plenty, he has no discernible words. This article made me look back and examine the progression of events for Finn:

Due to major intestinal surgery at birth, he was not allowed to take any nutrition by mouth until he was more than a week old.
Because of this, we had great difficulty establishing breast feeding (low muscle tone was probably a factor as well, although Finn has always had relatively good tone).
Because of this, he was bottle-fed expressed breast milk for a while; because of his weak suck (due to possible low tone and certainly trauma from the major surgery he underwent, as well as oral aversions from being intubated), he was given a fast-flow nipple, which likely contributed to fluid buildup in the middle ear.
Although we were able to get him off bottles and exclusively nursing in a relatively short time, we faced a lot of difficulty in this endeavor, and therefore probably did not use optimal positioning for feeding, thus also contributing to fluid build-up in the middle ear.
Finn definitely became chronically congested; I remember very well the constant snorting sound he would make. He also suffered from chronic upper respiratory infections for many months during his first year.
The congestion seemed to resolve almost immediately when he had tubes placed in his ears at 11 months old. However, by this time he was already a chronic mouth-breather and even now has the relaxed, protruding tongue, and the high, narrow palate (which I confirmed this morning by feeling for myself).

So. In a way, I am fascinated by all of this, and glad that we can clearly see what happened. But I also feel sad, because what's done is done, and how to undo it now? It makes me sad that this could have been prevented, at least to a degree, but I didn't have any idea at all.

I have no doubt that this is where a SLP comes into play. However, unfortunately, Finn has been deemed not qualified for ST at this time, because he's apparently "not cognitively ready" for it. I'm not at all happy about this, nor do I agree with it, but I also am not in a position to fight it right now. This summer, I will, though.

***

In other news, for the last couple of days, Finn is no longer pulling to stand. Even when I put him in a standing position up against something, he balks. I don't know what to think about this. Trying not to worry too much.

Owchie

2010-03-11T13:15:00.000-08:00

This morning, Finn bit me:

So I poked him in the eye.

Okay, okay, it didn't really happen that way. I didn't poke him on purpose!

Wordless Wednesday

2010-03-10T10:12:00.000-08:00

IFSP

2010-03-09T13:31:00.003-08:00

We got a copy of Finn's IFSP in today's mail.

Sigh.

I promised myself months ago that I wasn't going to read these things anymore. Because, really, what purpose does it serve except to bring me down? Seeing my son, whom I see every day as sweet and stubborn and clever and ornery and funny, reduced to numbers in a sterile report hurts my heart.

But having the thick brown envelope sitting in my hands makes it nearly impossible not to look at what's inside. And so I looked.

From his evaluation last month (chronological age: 19 months), here's where his skill levels fell:

GROSS MOTOR: 6 months

(Really?? The notes say "Finn crawls as his primary means of locomotion. He pulls himself to a kneeling position onto furniture." How many typical 6-month-olds do this? Wouldn't this be rather advanced for a 6-month-old?)

FINE MOTOR: 6 months

(Notes: "Finnian will reach for objects with his hands." That's it. Gah! He does so much more than that!)

COGNITIVE DEVELOPMENT: 7 months

COMMUNICATION/RECEPTIVE: 8 months

COMMUNICATION/EXPRESSIVE: 8 months

SOCIAL/EMOTIONAL: 8 months

ADAPTIVE/SELF-HELP: 8 months

It is interesting to note that he assessed at a younger skill level in every area this time than he did six months prior at his last eval. So, he regressed? No, he did not. He was evaluated by a different person, using a different assessment method this time. Which just goes to show, it's all so very subjective. And none of it - no assessment tool on the planet, nor any person performing the evaluation - can possibly show a true, complete picture of what Finn is actually capable of. None of these evaluations take into account that one of his favorite things to do is open the latch on the dog's crate (fine motor) and let the dog out. Or how he knows exactly where the drawer in the kitchen is with all the tupperware lids, and how he loves to empty that drawer out. Or how he puts a towel over his head and then whips it off, and cracks up, playing peek-a-boo. Or how he knows where to find his favorite toys. Or how he will transfer a toy from one hand to the other when I'm getting him dressed. Or a million other things.

I remember when Finn was a mere 3 and a half weeks old, and he rolled over for the first time. I was shocked and amazed - none of my "regular" kids had rolled over nearly that early. And it wasn't a one-time thing - he kept rolling from that day. And I remember thinking, "Maybe he'll make history and be the first person with Down syndrome on his karyotype, but not have any of the delays associated with Down syndrome. Maybe he'll have Down syndrome but be a genius!" Ahhh. It makes me sad now to think back on how desperately I wanted him to be okay. And back then, in my mind, okay meant as normal, and even advanced, as possible. I had not yet gained this knowledge that a full, happy life, and a life of value, is not tied to how smart one is, or how high one can jump or how early one walks. A full, happy life, a life of value, is tied to loving and being loved, to experiencing joy on any level.

So, yeah, Finn is delayed. How much? I have no idea. These evaluations aren't consistent and therefore can't seem to give an accurate assessment of where he's at. I am making a conscious effort not to take this all too much to heart. Finn is a whole person above and beyond any evaluation report or IFSP. He's delayed, yes. But he's progressing. He's happy and healthy and loved.

IFSP

2010-03-09T13:31:00.001-08:00

Kevin's Speech, live

2010-03-05T21:29:00.000-08:00

Tonight was the night Kevin gave his speech at school, to a packed audience of peers and families. He did a wonderful job, and despite a brief, unfortunate technical malfunction, he nailed it.

This was part of a program in which all the seventh and eighth graders at his school had to perform either a visual or performing art. Kevin was the only one who received a standing ovation. People were crying! Afterwards, as we were leaving, so many people - kids, parents, and teachers alike, were high-fiving Kevin, shaking his hand, and telling him what an awesome message he put out there. He made a BIG impression. My heart is so full right now, of love and pride for this amazing kid, and my faith in the ultimate goodness of people is restored.

A Boy On the Go

2010-03-05T12:15:00.000-08:00

Not only does he stand now . . .

He climbs, too.

This boy is keeping me busy!

Dress Rehearsal: R-word speech

2010-03-04T20:25:00.000-08:00

Kevin had to do a dress rehearsal today at school for the speech he's giving tomorrow evening, and apparently it went really well. When I picked him up from school this afternoon, he was beaming. I asked him how it went (as practice, he had to give his speech in front of the entire seventh grade) and he said, "It was really impactful, Mom!" (I swear he used that word!) He said that during the speech, a lot of kids were giving him thumbs up, and afterwards several kids made a point of telling him how "awesome" they thought his speech was. A few kids told him that they have siblings with autism or other diagnoses, and that they understood exactly what he was talking about. One girl said to him, "Wow. I am never going to use that word ever again." When he told me this, I was just overcome. This is what it's all about - making a difference. Another kid told him that it was the "second best speech" he'd ever heard, the best being Martin Luther King, Jr.'s I Have a Dream speech.

I'm so proud of that boy. And I can't wait for the real thing tomorrow evening!

Beaten Down

2010-03-03T20:34:00.000-08:00

After today's session with Finn's new "infant stim" therapist, I've decided to can her. As I posted last week, she was a half hour late the first time she came. I emphasized to her that I have to be out of the house by 12:20 to pick my twins up from kindergarten. Apparently 11:30 on Wednesdays is the only time slot she has available. Fine. If that's the case, then she really needs to be on time if we're going to get anything close to an hour of therapy in, which is what she's contracted for. Well, she was late again today, and this time didn't even bother acknowledging or apologizing for being late. Also, I'm not at all impressed with what she appears to have to offer. She plays with toys on the floor with Finn. Period. We do that already. Emily, the OT, does that. It's overkill. She's not wowing me. So we're done with her; I've already contacted our SC and told her to let her know that she doesn't need to come back. And in all honesty, if this is what "infant stim" is all about, I'll cheerfully do without a replacement.

After the infant stim therapist was here (and I rushed out to get my girls from school), I called Emily, our OT, to get her input. I can call her like that, whenever, to blow off steam and to get her input on therapy, because we have a rapport outside of therapy. We're in the same book club. She's a fellow mom in the neighborhood. Her kids go to the same school my kids go to. We have friends in common. So I called her because I wanted to get her input on canning the infant stim therapist and pushing for speech therapy for Finn. We've thus far been denied ST because here in California, Finn is deemed too young to qualify for one-on-one ST. So Emily was telling me how she began as a therapist in Chicago, and how different EI is there and in other parts of the country, and how in most areas, kids with Ds get ST from birth.

During the course of the conversation, in describing her frustration with how the EI system in California is set up (and I agree, it's screwy), she did the unthinkable: she used the R-word. To me. Today, of all days, the day we're Spreadin' the Word to End the Word. For crying out loud. And she used the word to describe the EI system! Can it get any more ironic than this, folks?

You know what? I kind of lost it after I got off the phone with her. I didn't say anything to her because I was just so stunned. But when I hung up the phone I started crying and shaking - a full on meltdown. Kevin, my 13-year-old, was worried when he found me crying at the kitchen table. "What's wrong, Mom? What's wrong? What happened?" So I told him - this smart, sensitive, compassionate kid who thinks the world of his baby brother, and who is on his own crusade to change people's attitudes - I told him that someone used the R-word in conversation to me and that it just really, really hurts.

I know this sounds rather melodramatic. But it felt like the straw that broke the camel's back. Why am I fighting such a clearly losing battle? It's no use. These words, and these attitudes, they're everywhere. We can't get away from them. It hurts so much, people. I felt just completely drained and defeated.

I like Emily a lot! She's great at what she does, Finn is responding really well to her, she's wonderful. And I know she didn't mean any harm, I know she didn't. She's not a bad person, she's a really kind, wonderful person. But see, even she - a person who makes her living at working with developmentally disabled children - throws that word around without even thinking about it. How are we ever going to change something so insidious?

You know that speech that Kevin wrote? He's going to be giving it in front of the student body and their families at his school this Friday evening. I guess some kids have gotten wind of the subject matter of his speech. Want to know what one kid in one of Kev's classes said to him a few days ago? He said, "Hey, I hear you wrote a speech about a retard." Punk-ass kid . . . why I'd like to . . .

Ugh. Ugh. Ugh. Somebody get me a hole to crawl into.

All that said, I only let a few minutes go by before I knew I had to call Emily out on this. Of course it would have been easier to just let it go, ignore it, pretend I didn't hear it, pretend she didn't say it. But I couldn't. So I sent her this:

Hi Emily -

I want to tell you again how much I appreciate your help and input. I'm so glad that we have you on our team now.

I have to say something, and this is really uncomfortable. On the phone today, when you were talking about how the EI system is set up in California, you said, "That's just RETARDED." Ugh. That word hurts. I'm thinking you probably didn't even realize you said it. But see, that's the problem, it's become so insidious in our language that people don't even realize they're saying it, and they have no idea the people it hurts. Finn is developmentally disabled, and he will be for his whole life. So this is HUGE to me, a really, really big deal. It hurts me, as his mama, when people talk like that. And despite the fact that it's really difficult and uncomfortable to call people out on it, I owe it to Finn to try to change attitudes.

I just wanted to put that out there. No hard feelings. I adore you and am so happy with everything you're doing with Finn.

Lisa

Oh, and here's something my oldest son, Kevin did (he's actually going to be giving this speech at Beechwood school this Friday evening): http://www.youtube.com/watch?v=33IxIdS1vYk

And she did respond and was very apologetic, which I appreciate. It's not apologies I'm after though. It's a change in attitude. And I guess the best I can hope for is that when called out on it, people will at least think before they speak in the future.

A New World

2010-03-03T09:28:00.001-08:00

Today is Spread the Word to End the Word Day, a campaign spearheaded by the Special Olympics to put an end to the use of the words "retarded" and "retard." I and my family have very strong feelings about this, but it goes a lot deeper than just eliminating hate words from the world's lexicon. What I want, in my heart of hearts, is a change in attitude. Yes, please stop using the R-word. It's not about being "politically correct," it's about human decency. But don't stop there. Examine your feelings about people who you perceive to be different than you. Do you see them as less than? Is this what you are passing along to your children? These attitudes ripple outward like a stone thrown into a pond. If you turn the other way when you see somebody in a wheelchair, if you hiss at your children "Don't stare!" when you encounter a pair of deaf individuals communicating in sign language, if you avoid the checkout line at the store in which the girl with Down syndrome is bagging groceries, if you get all up in arms because your child has been placed in a classroom with a child who has learning disabilities, you are promoting an attitude of intolerance and non-acceptance. You can stop using the R-word, and you can tell your children not to use the R-word, but if there is not a change in basic attitudes about and towards people who are different, then no real change has taken place.

I want the world to be a better place for my children. It rips my heart out to think that Finn will grow up facing these attitudes and hearing words like "retard" being thrown around. But it's not just Finn, it's my other kids too. They are also growing up seeing these attitudes and hearing these words. I want them to grow up in a world where difference is just another flavor. And you know what? I want that for your kids too.

Baby Steps

2010-03-02T21:05:00.000-08:00

Finn took his very first cruising steps today! Check it out:

This is actually footage of his second go at it today; he did it for the first time this morning when Emily, our (wonderful!) new OT was here. Ever since he figured out how to pull up to standing a couple weeks ago, he's been pulling up on everything - he even pulls up against the refrigerator in order to reach the magnets. It's just so awesome to see him progress like this - and all in his own sweet time.

Bare Necessities

2010-02-25T13:27:00.001-08:00

Sorry, couldn't resist.

Therapy Schmerapy

2010-02-24T21:40:00.000-08:00

I think I am stuck in this mindset that the therapists are the enemy. Well, maybe that's a little harsh, but I definitely have this us against them feeling.

So this week we've started with the new therapists. Our new OT, Emily, came on Tuesday morning. It was good. It definitely helps that I have a rapport with Emily already. She was very warm and playful with Finn, and he responded to her very nicely. She played on the floor with him for a while first - and even had him placing balls in a container by himself, which I didn't even know he could do! - and then worked on feeding with him for the second half hour. As far as feeding, Finn is still strictly on purees. He has some serious texture aversions, so we are going to work on that and hopefully get him finger feeding table foods over time.

The other therapist, an "infant stim teacher," came today, and I have to say that she got off on the wrong foot with me from the get-go. It all started with her calling me last night to set up a time to come out and do an initial assessment of Finn to see where he's at and what he needs. She seemed pretty inflexible about when she could come out - and with my having six kids, most of whom are involved in various extracurricular activities, plus staggered school drop-offs and pick-ups every day, it's not like my schedule is wide open. So I finally agreed to have Finn skip his nap today (grrrrr!) because she said that 1:30 this afternoon was the only time she had available. Fine. So this morning she calls to tell me she had a cancellation, could she come over at 11:30 instead? I told her that would be fine but I absolutely had to leave the house by 12:20 to pick up my two kindergartners. So she shows up a half hour late! She said she had trouble finding my house. Okay . . . woulda been nice if she woulda called me. Whatever. So we crammed what was supposed to be an hour-long assessment into 20 minutes - and really, all the "assessment" was was me signing a bunch of forms. Whatever.

So Chris, that's her name, she apparently does "global" therapy - a little PT, a little OT, a little ST, cognition, etc., etc. I'm trying to have an open mind, despite the fact that she got off on the wrong foot with me today, and despite the fact that I think I just resent the whole idea of therapy because of the intrusion, and the fact that it just feels like they're seeing my kid as a collection of problems that needs to be fixed. I know I have a bad attitude.

I do have to give her props, though, for asking about the other kids who might be here during therapy and expressing a desire to include them and have them help. Eun always seemed put off by my other kids and it was always very stressful trying to keep the others occupied and out of the way when she was here working with Finn. I mean, we have a passel of kids, that's our reality.

We are not going to be doing separate PT for the time being, as our SC has been unable to find a PT that can work with my very limited schedule availability. I am totally fine with this. PT is not one of my main concerns right now, and Emily and Chris will both be doing a little bit of PT with Finn anyway.

So there you have it.

Beyond Acceptance

2010-02-23T21:13:00.000-08:00

Last night I caught a few minutes of the Olympics. There was a segment in which Bob Costas sat down with Tom Brokaw, and they were talking about former Olympic snowboarder hopeful, Kevin Pearce, who sustained critical head injuries while training in Utah in December. Kevin remains hospitalized and is undergoing rehabilitation. His doctors and family hope that one day he will be able to speak again, and walk unassisted again. Life can change in the blink of an eye.

The segment on TV revealed that Kevin is the youngest of four boys in what appears to be a loving, close-knit family. I was really struck by the interviews with his family members.

And then, there it was: one of Kevin's brothers, a young man by the name of David, has Down syndrome. There was footage of Kevin, before his accident, with David, and then interview footage of David talking about his brother. I stood there watching with a lump in my throat and tears in my eyes. And a feeling of peace washed over me.

It's the exact feeling I had when I saw Finn pull up to standing by himself for the first time a couple days ago. This little voice inside me whispered, "He's going to be fine. He is fine."

I know that Finn is never going to fit into the parameters of what most people consider "normal" or "typical." I know he will talk differently than most, and walk differently. I know that he will never be a brain surgeon or a rocket scientist. I know that he will always have limitations that most people don't have.

That's, I guess, the "down" side of Down syndrome.

But I don't care. I had this quiet realization recently - very recently: I would not change a single thing about Finn. No, I would not even change the fact that he has Down syndrome if I could. It was not all that long ago that I would have made the opposite statement. It wasn't long ago when I felt and said, "I love Finn with all my heart, but if I could take away the Down syndrome? Yes, I would." I am realizing now, though, that my heart, and maybe my head, are in a different place now. I don't know where the change has come from. I think the path of acceptance is a winding one, with lots of corners, bumps, valleys, potholes, and sometimes even hairpin turns. There is a lifetime ahead of Finn, and I am not fool enough to think that there won't be times in the future when I might despair, when I might hate the Down syndrome.

But today, right now? Finn is perfect in my eyes - exactly the way he is. I can't imagine him any different from who he is, and truth be told, that extra chromosome he sports in all his billions of little cells is an integral part of him. Without Ds, Finn would be a completely different Finn. I don't want a different Finn. Would I change the world? And all it's misconceptions about people like my son? And all it's cruelty and indifference? Yes, most definitely. But Finn? I wouldn't change a single thing about him.

I feel at peace.

Ds Clinic

2010-02-22T10:06:00.000-08:00

Recently I learned that the children's hospital Finn spent his first couple of weeks in has recently opened a Down syndrome clinic. That's what the website calls it, a "Down syndrome clinic." Through the blogging community, I know a lot of other parents who have children with Ds take their kids to a Ds clinic periodically, and based on what I've read on other blogs about this, and from the website of this particular Ds clinic, my impression was that a Ds clinic is a team of doctors, specialists, and therapists whose focus is on Down syndrome.

I love our pediatrician, and we've been with him for a long time - since my oldest was born 13+ years ago. He's a wonderful doctor, and while I have no problem continuing to take Finn to see him for his overall care, he's not particularly knowledgeable about Down syndrome, so I thought maybe having a team of specialists whose focus is on Down syndrome see Finn periodically might be a good idea. However, it appears now that it's just one doctor, a neurologist. We got a referral from our pediatrician, and I went ahead and made an appointment for Finn for late in March. But I'm kind of wondering right now what's the point? Is this necessary? What benefit should we expect to get from this? If this "clinic" really just is one doctor - a neurologist - what exactly is the point? What questions should I ask? What should my goal be in taking Finn in? Should I even be bothering with this?

I'd really appreciate input here! What has your experience been with a Ds clinic?

Tada!!

2010-02-21T15:10:00.000-08:00

As I came in the house this morning, Kevin said to me, "Hey, Mom, does Finn pull himself up to stand yet?" "No," I said, "Why?" Kevin said, "Well, he just did it a minute ago." I didn't believe him. Or, rather, I thought he must be mistaken. Maybe he saw Finn pull up on his knees, which he does all the time, and decided that was close enough to call it "standing." He said that he had opened the bench seat by the front door, and Finn crawled over and pulled himself up to a standing position to see what was in the bench. Then he showed me; he opened the bench seat again, making sure Finn saw from where he was sitting, and sure enough, Finn crawled over and pulled himself right up, as if he's been doing this for ages.

And, I of course, sat there clapping and blubbering like a fool (I believe I heard Michael say, "She's having a mommy moment.").

We took the kids to the park a little while later, where Finn pulled himself up to standing repeatedly.

Seems like such a small thing to make such a big deal about, I know. What is the big deal? Finn is 19 months old and this is the first time he's ever done this, that's what. And he's made this leap in progress without having had any physical therapy since early December. When I saw him pull himself up onto his feet with my own two eyes, and I sat there crying tears of pride and happiness, all my second-guessing myself over having reduced his therapy over the last several months went out the window. Suddenly, my faith was restored that he will do the things he's supposed to do in his own time.

Michael said the other night, "Having Finn is like raising a baby in slow motion." It's so true, and really, so wonderful. We get to savor and appreciate each stage, and each step.

No

2010-02-20T14:12:00.000-08:00

One of the questions posed to me during the last two of Finn's developmental evaluations was "Does he understand 'no'?" The answer I've given has been that we really haven't had much occasion to tell him "no." He's never been naughty as of yet, and doesn't get into much mischief.

That's all changing suddenly.

He's developing quite a heightened sense of curiosity and adventure lately - as well as a stubborn streak. He's at that stage where some of his favorite pastimes include:

taking all the books from the lower bookshelves and ripping the covers off
throwing things
opening drawers and emptying them
tipping things over, like step-stools and floor lamps

I am finding myself saying "no" to him quite a bit lately! Does he understand? It's hard to say. Sometimes he pauses in his mischief and gives me an impish grin and then keeps right on doing what he was doing. Sometimes redirecting him along with "no" works, but often, he'll navigate his way right back to the place I removed him from so he can continue on his merry way.

Yep, he's definitely one of my kids.

Kevin's R-word speech on YouTube

2010-02-17T14:46:00.000-08:00

Spread the word!

IFSP meeting

2010-02-12T20:24:00.001-08:00

This morning we had Finn's semi-annual IFSP meeting with our service coordinator. Finn was sporting a nice shiner for the occasion (damn table leg!):

Because, you know, it's important to make a good impression on those social workers.

Anyhoo, it was actually a fairly stress-free meeting, as we did not have to deal with the typical evaluation beforehand since we dumped our PT recently. Instead, our SC just used a written screening tool, where she went down a list - several pages long - and asked us, "Can he do this?" "Does he do that?" and "Is he able to so-and-so?" They were all basically yes and no questions.

What was proposed to us as far as services go - and this is the stressful part for me - was either:

A. A "global" therapy program at a clinic, where he would receive PT, ST, and OT by rotating stations in the same center. This would be a twice weekly program, each day's program consisting of about 3 hours (so a total of about 6 hours per week).

B. In-home therapy by three different therapists, each for one hour per week.

Option A is out. The clinic they would want us to go to is about a 30 minute drive from our house, and I just cannot do that for a variety of reasons, among them, having other kids with staggered school pick-ups every day. It's too far, the times would not work, and I have Lilah to think about - I do NOT want to be dragging her around to deal with Finn's therapy. It wouldn't be fair to her. Also, six hours a week seems like an awful lot to me - too much. I just can't do it.

So we've agreed to option B, at least for the time being. Regional Center has agreed to assign Emily as our OT, and we will be given a new PT and an "Infant Stim teacher" who will work on cognition and language development.

Do you see what I've done, though? I've backpedaled on my previous decision to reduce services. We will now be doing weekly therapy not only with just a PT, but with two additional therapists as well.

I have to say straight out that I am still so, so torn on the whole therapy thing. I really am. I just don't know what the right and the wrong are. I do not at all regret that we've spent the last six months only having PT once a month (and none at all since early December) - although I have second-guessed myself plenty. But it's been really, really nice to not have to work our schedule around therapy, to not have that intrusion, and to just let Finn BE. And he's been fine. He's been happy and healthy and inquisitive and explorative. Has he met the goals we set for him at his last IFSP? No. I don't really recall all the goals we set for him (although I don't think there were many), but I do know that one of them was to have him taking at least a few steps by now. He's not. He's still not even pulling up to stand (well, he often will in my lap, but not on furniture or anything). And truly, truly, I am fine with that. I am not in a big hurry for him to walk. I really just don't see the huge benefits of him walking ASAP. He will walk eventually, of that I have no doubt, and that's good enough for me. (This, coming from a pretty high-strung mom!)

That said, there is a part of me, of course, that wonders if we're doing all we can for him. Are we holding him back? Would he progress by leaps and bounds if he had a lot more therapy?

I don't know, I just don't know.

So we've agreed to what will now be three hours of therapy every week, assuming all three therapists can work with my schedule, which is pretty limited (I absolutely cannot do afternoons with all the activities my other kids are involved in). And already, I'm feeling a little resentful about the intrusion it will be, and I'm feeling a lot of guilt for Lilah, because I don't want this to take away from my opportunities to take her to the park and on playdates. She will be starting preschool in the fall, and I don't want to steal these last few months from her.

Gah. This mom stuff is so hard sometimes.

In the words of a 13-year-old boy

2010-02-11T20:12:00.000-08:00

This is a speech Kevin, our oldest son, wrote, and which he will be giving in front of the student body and their families at his school in a couple of weeks.

I just want to note that this is Kevin's cause, and one he is pretty passionate about. We, his parents, have never pushed him to take on this cause. He loves his brother so much, and takes his responsibility as an advocate very seriously.

___________________________________

I know that history can sometimes be boring, but just for a second let’s think back to the Civil War, when Abraham Lincoln was still America’s president. He made a speech called The Gettysburg Address. In his speech, Lincoln said that all men are created equal. Now let’s fast-forward in time to August 28, 1963. On that day Martin Luther King, Jr. made his “I have a dream” speech. He also said that all people should be equal. I strongly agree with this, and I’m sure many of you think you agree, too.

Now today, here in 2010, I’m making my own speech.

How many of you here discriminate against people of a different race than your own? How many of you discriminate against those of another religion? Probably not many of you. But I’m not done yet.

How many of you discriminate against . . . my baby brother, or people like him? I doubt that any of you think you do. But let’s think about this. I’m sure many of you here have used a single word that hurts like a missile. That word is “retard.” I could ask you all if you know what “retarded” actually means, but I doubt many of you do. Many people use it to describe something they think is stupid, annoying, ridiculous, or useless. It actually refers to someone with an intellectual disability, like my baby brother, who has Down syndrome. When you say “retard” or call something “retarded,” it shows ignorance and insensitivity. It sounds uneducated. Some people think it’s okay to use as a casual insult because they aren’t specifically referring to the intellectually disabled. This is not true; the word “retard” is inappropriate and unnecessary and unacceptable. It’s offensive and hurtful to my brother, my family, and all other people with disabilities and their families.

It is true that doctors once used the words “mentally retarded” as the official term describing the intellectually disabled. But the word has evolved into a hurtful, offensive insult. There is absolutely no reason why the intellectually disabled should be compared to something YOU believe is useless or stupid. It’s like saying, “You’re stupid, and these disabled people are stupid, so I’m gonna insult them and you by saying you’re as dumb as them!”

My baby brother is sitting on the floor watching me closely as I write this speech, a smile on his face. Is it my brother’s fault that he was born with an extra chromosome, that he has Down Syndrome? No. And yet, he will deal with discrimination for his entire life, unless we do something to change that. A very simple thing: stop using the words “retard” and “retarded.” Just remove those words from your vocabulary.

Maybe some of you know somebody with an intellectual disability, and you understand.

Some of you will walk away when I am done, laughing, and saying, “That speech was retarded!”

Some of you will agree with what I’ve said, but continue using the words and being hurtful anyway.

But some of you will truly understand. You will educate other people to know that everyone, regardless of race, religion, or intellectual ability, deserves to be treated with equal kindness, respect, and dignity. You will truly understand what it means to be equal.

Politics, the R-word, and good ol' Sarah Palin

2010-02-10T11:07:00.000-08:00

Sigh.

I'll be honest. I'm not one much for politics. I probably should be more aware of and invested in what goes on politically in our country, but the only excuse I can offer up is that I keep busy enough taking care of and worrying about the things in my own little world. Not that I don't have opinions about certain national and global issues. But I generally don't spend a lot of time or energy focusing on what political figure is doing or saying what these days.

However, this latest thing concerning Sarah Palin is impossible to ignore.

Let me just say that I know full well that people tend to have pretty passionate opinions about Sarah Palin - my experience is that people either love her (generally, the right-wing religious types) or hate her (generally, the more liberal types). I'm sure there are people who fall somewhere in the middle in their assessment of her, but the former has been my general observation.

Without exposing my own political views too terribly much, I'll just say that I don't really know where I fall. I find myself having conservative views about certain things, and very liberal views about other things. Maybe that makes me an Independent?

Anyhoo. Back to Sarah Palin. I have not followed her politically, mostly because I just don't care much. However, when John McCain first named her as his running mate a couple years ago, my first reaction was gladness. Finn had just recently been born at that time, and I suddenly saw all kinds of possibilities with having someone in the White House who was the parent of a child like mine.

Since then, I've become very aware of people's strong feelings about her. Within the Down syndrome parenting community, there are people who think she is akin to the Second Coming of Christ. And there are others who detest everything she stands for and consider her to be a blight on the face of disability advocacy.

As for me? I've tried to ignore everyone else's opinions and give her the benefit of the doubt. Not politically, but as a parent. It's just very difficult for me to believe in my heart of hearts that a parent really could just sell out their kid in favor of their political agenda. But that is, in fact, what Sarah Palin has done. In one breath, she calls for the firing of Rahm Emmanuel for his use of the term "fucking retards" in reference to his political adversaries, and in the next, she defends Rush Limbaugh's use of the R-word, writing it off as "satire." So, I imagine, then, that she and her family sit around the dinner table up there in Alaska and make jokes about "retards," of course with sweet little Trig sitting right there. And it's okay, because it's satire! They're only joking. So it's okay, right?

What a fucking hypocrite.

I'm disappointed. And I'm finished giving her the benefit of the doubt.

Finn's 18-month well baby checkup

2010-02-03T13:54:00.000-08:00

Finn and I visited our favorite pediatrician this morning. The highlights:

Finn weighs 19 lbs. 8 oz. He's actually lost a bit of weight over the last couple of weeks because he had the stomach flu and wasn't eating much for a week or so. I can't remember his length, but according to his file, he's grown an inch and a half and gained a pound and a quarter since his last visit 3 months ago. Good news!
We're getting a referral to a Down syndrome clinic that recently opened at our children's hospital. Apparently it's staffed by a team of doctors who are especially knowledgeable about Down syndrome. While I love our pediatrician, and we've been with him for a long time (since my first was born 13 years ago), he's not especially well-versed in things relating to Down syndrome, and I think it could be beneficial to visit the Ds clinic and get recommendations for things we can do to optimize Finn's overall health and development.
I've been a tad concerned about Finn's urine output lately, as he is peeing through all his diapers in short periods of time. It might just be the diapers, I don't know. But I also know that diabetes associated with Ds is not unheard of. So we decided to do a blood panel to check his blood sugar levels. While we're at it, we're having his thyroid re-checked (his thyroid panel at 12 months was normal).
I talked to the doc about Finn's recent eye-rolling episodes. Honestly, I am just not as concerned about it as I was a few days ago. I've observed him doing it a couple more times since I posted here about it. The last time I saw him do it, he was sitting on the kitchen floor playing and babbling, and then he did it - he rolled his eyes way up. But the thing is, he kept babbling the whole time, and it seems to me that if he were having a seizure, he wouldn't have been babbling while doing it. It seemed pretty innocuous at that moment, and I haven't seen him do it since. The pedi is not super concerned about it, but did say to keep an eye on it, and if it continues and/or if I become very concerned again, we can certainly investigate. Also, there is a pediatric neurologist on staff at the Ds clinic we're getting a referral to, so I will definitely take my concerns about these episodes there as well.

Interestingly, Michael just happened, by pure chance, to catch one of these episodes on video:

(That's Michael doing the funny voice . . . such a comedian, that man.)

Sometimes he's done that off-to-the-side eye-roll like that, and other times, it's been more rolling his eyes straight up. So, I dunno.