Monday, November 3, 2008

Physical Therapy

When Regional Center initially set us up for therapy for Finn, the whole thing seemed very overwhelming to me. Foremost in my mind was my determination to just try to enjoy Finn being a baby and not fill up our schedule with endless therapies (I'm sure part of this was denial, too). So we agreed to have a physical therapist come twice a month to work with Finn. That seemed like plenty, especially in light of the fact that Finn has always had great muscle tone - so it just seemed like any P/T he received would just be icing on the cake (the cake being the fact that I've tried to convince myself all along that somehow he's going to be the medical marvel, the exception, the baby/child/person with Down syndrome who only has Down syndrome in name but not in any real sense).

But I've started to wonder. Or rather, I guess I've started to face reality. I came across a photo yesterday of Lilah at 4 months old:

(cute, isn't she?)

For some reason, this picture set a little panic in my heart. See how well she's lifting not only her head, but her chest too? Finn doesn't do that. He lifts his head very well . . . but I can't say he's lifting it any better now than he was a month ago. (When you see them every day, it's hard to say . . .) I also notice that when I put him in the Bumbo, his head tends to loll backwards after a couple minutes. Is this normal? I mean, for a "regular" baby. I don't know (and you would think, having been around the block as many times as I have, that I would know, but it's hard to remember at exactly what age who did what). I'm afraid to look on the internet for a chart of developmental milestones. I'm afraid that the first time I am faced with a real, actual delay in Finn, I might fall apart.

This is utterly silly. I mean, when you have a child with Down syndrome, you just have to accept that there are going to be delays. Period. Exactly what delays there will be, and how severe, is all a mystery. But they will manifest themselves. That's just the way it is.

It's still hard to accept. I keep reading this mantra that so many other parents with children with DS seem to repeat: "He'll meet all his milestones, it will just be in his own time." And that should give me comfort, right? It sort of does. But it sort of feels like just one of those syrupy sweet sayings that's just supposed to make you feel better about a not-ideal situation.

Anyway, Finn had physical therapy this afternoon. I asked the therapist if she thinks he is manifesting any delays yet, and she said, very confidently, no. She also pointed out, though, that in a lot of cases, delays don't start presenting themselves until 6 - 8 months. I asked her if she thinks Finn would benefit from weekly P/T instead of just twice a month, and she said yes. So we're going to up his P/T to once a week, but it won't start for a few weeks. In fact, he won't have any P/T until the end of November or early December because our therapist is leaving this week to do missionary work in Cambodia for 3 weeks!

So in the meantime, I'll keep working with him at home and trying to wrap my head and my heart around this whole thing.


Jeanette said...

I call these moments "landmines". You are going about your daily life when you step on a DS landmine. It could be facing a delay, dealing with medical issues, having a DS panic attack, or dealing with someones ignorant comment. They are landmines that give you a strong emotional explosion. As parents we hit them periodically, but the good news is that they pass. I have had these same feelings on more than a few occassions. We too stepped up ECI. Our girl started doing more with more frequent visits. Try not to be too hard on yourself. It happens to us all. That's why I am glad that I have other mothers of kids with DS to chat with on a regular basis. It really helps.

T-rex said...

Finn is still within normal range by my experience, at least. You know he and Lilah (my Lilah) were pretty much identical gestational ages? Her head still bobs and lulls too, and she's starting to lift her chest but NOTHING like your Lilah in her picture. No rolling or anything here either, so Finn's ahead in that, too :)

Jeanette has given you some wise words, but I just wanted to extend some additional encouragement!

JaybirdNWA said...

Lisa, it has taken my wife and I some time to come to terms with the Dx of our son. He is 3 months old now and while we do not deny the diagnosis, we are defying the results and working with John on a daily basis because we know that the delays will come. Keep working with him, the stronger he is now will help him later.

Alycia said...

I think that was a very big step for you upping the physical therapy and I think it is a great idea. I am huge advocate of give them all the advantages you possibly can. Ie. my sister started Ethan extremely early in Kindergarten and I was so upset about it. : ) I swear I think her kids are mine! :) You can always go back to twice a month.

Tricia said...

Landmines. THat is for sure!