Chromosomes 101

In Kevin's seventh grade science class, they are currently learning about chromosomes (in honor of this, Kevin wore his "My Brother Has More Chromosomes Than Yours" t-shirt to school one day recently - gotta love that kid). the teacher has given the kids a very basic overview of chromosomes and the role they play in the development of a human being.

She explained to the kids that each person is made up of a contribution of 23 chromosomes from the mother and 23 from the father, making 46 chromosomes.

Not hard to see where this is going. Yes, the subject of Down syndrome came up, and the teacher explained that sometimes one of the parents contributes an extra chromosome and this results in something called Down syndrome. Kevin said that she didn't go into any depth really about Down syndrome, but she did say something along the lines of, "It's not necessarily horrible, but it's not necessarily good, either. It's basically just not normal."

Ack, there's that word: normal.

I asked Kevin how this all made him feel, and he just kind of shrugged. For the record, the teacher apparently knows that Kevin has a sibling with Ds.

I'm not sure exactly how I feel about this. I guess a little sad. I mean, I don't expect a seventh grade teacher to go into a lot of depth about Down syndrome, but I think what she said is actually very telling about the general ignorance out there about Ds.

I wish it weren't judged as "not horrible" or "not good" or "not normal." I wish it were just seen as a variation in the vast landscape of human beings.

A Terrific Opportunity to Make a Difference

Please take a moment to check out this post by Lisa, lovely mama to the beautiful Sheridan over at Genetically Enhanced:

We Can Make A Difference! Let's Help the CDC!

Look what Finn's up to . . .

Seems like he's on his way to . . . something.

He actually did this a few times a while back, but as part of his moratorium on bearing weight on his legs, he gave this up too. But suddenly tonight, he was getting into this position repeatedly.

Hmmm.

Something that has really struck me lately is that having Finn is giving me the opportunity to watch someone bloom in slow motion. It really has given me a deep sense of appreciation for so many things I took for granted with my other kids.

Opthamologist

Finn had a regular follow-up appointment with the pediatric opthamologist today. It was a complete non-event, which I guess is good. Everything looks good, he seems to see just fine, and the doc didn't mention anything about the apparent smaller optic nerve that he made note of 9 months ago. Whatever. Sometimes I feel like we're just going through the motions for some of this stuff. If your kid has Ds, there's a checklist, apparently, of things to have checked periodically, whether they're exhibiting symptoms or not. Not sure how I feel about it at this point. I'm throwing the hearing eval out the window, that I know. Vision, the doc said come back in a year. Okay.

I dunno. This doctor is a good doctor, I guess. He's got a good bedside manner, a good reputation. We actually took Joey to see him when he was a baby because he went through a period of occasionally crossing his eyes (he outgrew it), so Finn is actually not our first experience with this guy. He's nice. But kind of a ding bat. The first time I took Finn to see him, you might remember that he was of the opinion that Finn must only have mild Down syndrome. A doctor, for crying out loud! Today he was of the opinion that Finn was a little girl. He kept referring to him as "her" and "she." It was too comical to even get offended over; I just kept snickering to myself.

Sheesh.

Visit with ENT

Finn had an appointment with the ENT this morning for that cyst on the back of his ear. Yep, it's going to have to come off, and it's going to have to be done under general anesthesia at the outpatient surgery center :( A relatively minor procedure, but still . . . my baby.

I had also resigned myself to consenting to a sedated ABR since I knew this procedure would require that Finn be put under anyway. However, after my conversation with the ENT today, I'm again nixing the sedated ABR. I told him how Finn had "failed" the last booth hearing test he underwent and how, based on that, the audiologist recommended doing a sedated ABR. Dr. C, the ENT, however, said exactly what I've thought all along - that the booth test is BS. Okay, he didn't say "BS," but he did say that they are notoriously unreliable and not at all a good guage for any baby Finn's age. He also confirmed what I already knew, and that is that any hearing loss associated with Ds results from fluid buildup in the inner ears (due to especially small ear canals and inner ear anatomy), but that since Finn has tubes in his ears, there is no reason to think that this is an issue for him. He even checked both of Finn's ears and confirmed that they're both dry. He said that the best guage of Finn's hearing at this point is us, his family, who live with him and see how he responds to sounds of every range every day - and we have no reason to believe, based on what we see with Finn, that he has any hearing loss. In fact, I've noticed a huge improvement in his response to sounds since he got the tubes placed in June.

So, no sedated ABR, and that's final. And really, I'm thinking of just foregoing the stupid hearing tests from here on out unless something changes and we have reason to think he needs a hearing test. I'd rather just follow up with the ENT periodically to check the status of his tubes.

And speaking of tubes, I swear that has been such a good thing for Finn. Not only has there been noticeable improvement in his response to sounds, but he hasn't had a single ear infection since he had his tubes placed. He's actually in the midst of his third cold since getting his tubes, but he seems to be able to fight it off so much better now.

Impact

As the Third Annual 31 for 21 blog challenge draws to a close tonight, I wanted to share some final thoughts.

When I first started this blog not quite 16 months ago, its only intended function was to create a central place to update friends and loved ones on how Finn was doing after he was born. Over time, through this blog, I became a part of a large, loving community of other families touched by Down syndrome. The support has been invaluable to me. And from there, it has evolved into a means of raising awareness about Down syndrome, by sharing with the world (or at least whomever stumbles across my humble blog) a window into a pretty regular family's life with a child who has Down syndrome.

In real life, I still often find myself doing the whole song and dance to strangers and casual acquaintances who only just realize or discover that Finn has Down syndrome. What song and dance? Where I try to sell them on Finn and how great he is. I'll hear myself saying things like, "Oh, it's okay! He's great! We adore him! He's the light of our lives!" And while that is all absolutely true, it always feels icky that I find myself doing that, and inside I'm saying "Shut up! Shut up! Shut up!" and yet I can't seem to stop myself from blathering on. I think what it comes down to is that I so very much don't want anyone to pity Finn or our family. I worry that people might see Finn as a tragedy, or at least a burden, and our life with him as very difficult. It makes me sad to know that a lot of people we meet - without really knowing anything about Finn or us as a family, but only being in possession of a small collection of misconceptions about Down syndrome - would not want our life with a child who has Down syndrome. And so I do the selling routine, hoping to convince people that Finn really is wonderful, and we really do adore him.

A couple weeks ago, this email landed in my inbox:

Hey, Lisa.... Im sure you get this all the time, but Im a blog reader - I started from the start and read all the way through... Truth is, my husband and I are adopting (we already have 2 small bio kids). We have known that we wanted to adopt a special needs child, but what that need was we werent sure. Lately, I have been looking into Down Syndrome. I have been looking around the internet to see what all it involved and was it really something our family could handle. I really wanted an insider's view on it and have been mostly looking for blogs of parents with a child with Down Syndrome. And I stumbled upon yours. I just wanted to say thanks.... it has been such a blessing and encouragement to read your blog - to read someone who was willing to be real and lay it all out there on the line. It makes it much easier to see what real life is like. And through you, it actually looks pretty good. Finnian is adorable.... and I say that not just b/c he has DS - ha ha, I know you worry over that, but really, he is a pretty baby.... and I love the dark, curly hair of your others too... starting to ramble... :) Anyway, just wanted to say thanks for being real.... -addie

It made me cry happy tears, and it's stayed with me. To know that seeing our little slice of life has influenced someone in such a positive way . . . wow. I am truly grateful to have an opportunity to make such an impact.

Check out her blog and follow her family's journey to adoption: Blessed Impatience

Follow-up on PT post

I wanted to respond to everyone's wonderful comments on that last post regarding PT, and don't want my response to get lost in the comments section.

First, thank you all for the thoughtful replies. It's so helpful and reassuring to get other parents' perspectives.

If you haven't already, you should read Heidi's post here. It sums up so eloquently everything I've felt about therapy since Finn was an infant. And these feelings were really the impetus in my finally taking a long, hard look at things and deciding to reduce services. I want our life to feel like our own. I want my child to feel like my own (and not belonging to the system). I don't want the guilt that seems to go along with therapy (we're never doing enough to optimize Finn, it feels like). I've often thought that if we did away with therapy altogether and pulled him completely out of the system and had no "performance evaluations" (which is what they feel like), our life would be so great, and we'd have nobody telling us how poorly Finn is doing compared to typical children. Finn would just be Finn.

But I don't feel sure enough of myself to go it completely alone, so we've compromised by reducing therapy rather than doing away with it altogether.

Deborah, I appreciated you response so much. That's what it all boils down to, isn't it: you can push a child and push a child, but if they're not ready to ___________ (fill in the blank), it's just not going to happen. And I know that there are plenty of children with Ds who have received tons of therapy and still don't walk until the age of 2 or even later - and there are children who receive very little therapy who walk before their second birthdays. It's all a crapshoot, and I don't believe you can force it. And honestly, I don't even see the benefit of forcing it - so what if Finn were to walk at 18 months as opposed to 28 months? How would that make his life better?

As for the play things: we have a jumperoo that Finn has used since he was about 6 or 7 months old. He enjoys it. Eun had encouraged us to stop using it a while back, though, because she said that it encourages him to bear weight on his tippy-toes rather than flat-footed. So for the last month or two, I've rarely put him in it. But I do wonder if it was actually helping to strengthen his leg muscles and to feel comfortable bearing weight on his legs. We don't have a doorway jumper (as Esther suggested) because none of our interior doorways have the lip to hang it on (we live in an old house!). I still don't know what to do about getting a walker. Should I or shouldn't I? I'm starting to think that I could talk to 10 different therapists about these things and get 10 different recommendations. It just makes it all so muddy and confusing. As for a play table and a push-type walker, we have those, and thus far they haven't motivated Finn to stand. He used to stand at his play table, but he just won't do it anymore.

And the thing is, I know that Eun's earlier prediction that Finn would be walking by 16 - 18 months was hugely optimistic and probably unrealistic. And I never tied my expectations to that prediction. Somewhere in my head, I've kind of assumed all along that he probably won't walk until he's 2ish. Maybe later. And really, I'm okay with that. To me, when I take away the therapy element and the evaluation element and the IFSP element, it doesn't feel to me like there is anything wrong with Finn. Finn is just Finn. It feels like he is staying a baby longer than my other kids did. And I am really, really okay with that. I mean, don't we mothers pine for our kids' babyhoods? Don't we lament how quickly it flies by? I have a gift: a baby who will stay a baby a little bit longer.