Saturday, October 31, 2009

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.


Tara said...

Exactly. And, you're right. If you asked 10 different therapists, you would get 10 different answers. (the therapist in me is appalled that I just wrote that, but the mom in me knows it's true!:)

Mel said...

I think that each therapist is looking at each area of development in isolation- not seeing Finn as a whole person. He may have 'regressed' in not being keen to stand, but is that not a normal reaction to being forced to do something you don't want to do? I think it shows personality and tenacity to dig your toes in like that! He is a toddler- of course he is going to have his own ideas about things and that is great! I'll bet he's doing lots of things in other areas no-one is looking at. Like the representative play or whatever the technical term is with the teacup. All that stuff is probably more important at the end of the day. Luke has weekly therapy and crawled relatively early, and was looking on track to be walking by now, but then the low tone in his core came into play and it has been a slow road to develop that. And even my therapist with years of experience says it is impossible to predict how long each stage will take and can be really frustrating. Have faith in yourself and in Finn.

On the therapy side, we have built some low parallel bars to have inside. They allow Luke to play in lots of ways standing up and are safer than a walker.

Esther and Brian said...

I totally agree that you just can't make children do what you want them to do! For instance, no matter what I do, Eric, my "typical" 14 month old son, hates finger foods, textures and likes to eat Stage 2 foods with a spoon..fed by Mommy. His twin brother is better at feeding himself, but still not where most kids are at their age. Ok, so I can rationalize that hey, they are just 13 months adjusted age- but really, who cares? We practice different foods every day and that is all I can do. I can't make him take it for now. But I also know that he won't go to college with Stage 2 foods, right? LOL
It will all work out for Finn, too. In his own time...and yes, you may have your baby a little bit longer and boy, that is not bad at all!!!

Jennifer said...

This is one that I'm struggling with. I think you'll agree that mothers feel guilty with every child, so why does it feel more urgent with our kids with DS? I don't have an answer, I only know that the inadequacy I feel as a mother is greater with Ellie than with Meredith.

I commented in Heidi's blog and will here too, that if you're a knitter and read the Yarn Harlot (, her essay on Good Mothers speaks to this. She called bulls**t on the Mother Police for mothers feeling like they can't be less than enthusiastic/fulfilled, joyous at having to suck it up and be the grown up.

I think managing the aspects of Down Syndrome (including therapies and the system) are like this. It's a part of our lives and it's great to have them, but why should we be holding parades because of it.

I've been frustrated with therapists who tell me what my child needs based on a 30 minute assessment (these are through EI). It seems they're only using the broadest of parameters and aren't really seeing Ellie for all she is.

(sorry, turning into a rant!) Anyways, as I commented at Heidi's, only you know what's best. Don't let the system or therapists make you second guess yourself. You can always go back to therapy (or change therapists) if you think Finn needs it after a break.

Also, (apologies if someone already mentioned this) have you considered switching therapists for something new? Our first therapist was great and Ellie really liked her, and her sub when she was on vacation, and the student she taught. The therapist we have now, though (and the one we're keeping), Ellie really responds to even more and works her little heart out. Sometimes progress can plateau because of the trainer as well as the athlete.

As an aside, I laughed at Ester's comment about feeding. Ellie was probably 14/15 months and was eating scalloped potatoes and ham for the first time and loving it. My 5 year old, however, was also eating it for the first time (we were making her take "no thank you" bites) and hating every bite of it. Everything it its time.

SunflowerMom said...

Lisa, glad I could say something that helped! With E being on the go & searching for trouble all day, it's hard to get clear thoughts our often. :)