Thursday, May 21, 2009

Therapy, etc.

Finn had his second PT appt. for this week, as I was only recently informed that we can schedule makeup sessions when he misses a session due to illness. We're also in the process of trying to find a different time slot for his PT, as Tuesday mornings at 11:30 aren't working out so well since he's pretty much given up morning naps and by 11:30 he's tired.

So anyway, I was asking Eun this morning what sort of PT he'll receive once he's walking, and she said that once her kids are walking, she usually recommends transitioning them to a "theraputic preschool," which I assume is center-based therapy. She said they do more global therapy/stimulation then: 20 minutes of PT, 20 minutes of OT, 20 minutes of ST, all in a group setting.

And for some reason, hearing this made me just want to cry. I'm confused by my own reaction to this. I mean, didn't I just recently say, after visiting that therapy center for Finn's feeding eval, that I almost wish we could do center-based therapy? I don't know . . . I think my immediate feeling was just one of sadness that Eun won't be his therapist beyond the time he starts walking (I had understood that she would be his PT until he's 3 and transitions to the school district for early intervention services), and also that, in a way, he will be expected/pushed to "grow up" so quickly. Preschool at possibly two years old - maybe sooner? I've never wanted to send any of my kids to preschool that young. Everything is different with Finn. Well, not everything, but so many things. And sometimes it just makes me sad. Sad that we can't really just 100% enjoy him as a baby - that there is so much pressure to get him to progress and accomplish.

I still swing wildly back and forth on the whole subject of therapy anyway. Sometimes I feel like it is the only thing standing between Finn as a "high-functioning" individual and a non-functioning one. And to that end, I am frustrated with the system, frustrated with our service coordinator who is a shitty communicator and has not helped us navigate the system, and to a great degree, frustrated with myself for not being a better advocate for Finn - for not writing letters, calling meetings, making demands. I just don't have the energy right now, which really, is a pretty poor excuse. Then there are times when I feel like therapy is a waste of time. I mean, he's going to crawl when he crawls, he's going to walk when he walks, right? Even Eun said this morning that without PT, he'd still do all those things, but PT is helping him do them sooner. What's so great about sooner, anyway? I don't even know.

Anyway, PT this morning was . . . interesting. Finn showed progress just from two days ago in his efforts to crawl, and Eun said enthusiastically, "Wow, I can tell you guys have really been practicing since Tuesday!" (Ummmm, the truth? No, we haven't practiced at all.) I just smiled and nodded. The girls were running amok through the whole thing, which is typical and very frustrating. They can't stand that my focus is on something other than them for an hour, so they do whatever they can to distract me and draw attention to themselves, all the while knowing that Mommy won't go balistic on them when there's a witness.

10 comments:

Lovin Mama said...

I think its what you do with the therapy that matters. Not that I'm always good at implementing every suggestion, but its the daily routines that work the best for us. And siblings during therapy, oh my! They assured me it would get better. Not! My 7 yo is a major distraction excpet during PT, then she is our best asset. She can get Goldie to do things we can't. :)

Jen said...

You should read Kathie Snow's Disability is Natural. I just started it recently based on Beth's posts about it...it might reinforce some of your feelings about therapy being unnecessary. Or not unnecessary, just...unnatural?

Your PT "recommended" that preschool...she didn't say you were obligated to choose that path. So, maybe you can keep things the way they are, if that's what's best for Finn and your family. You know what's best. All the therapists in the world, no matter how dedicated, will never know your baby like you know your baby.

Ria said...

I get overwhelmed with therapy too every now and then. And not just the therapy, with all the different stuff to implement, but also with everything else I want to educate myself on regarding Down syndrome. It's just a lot of information. My husband always reminds me to take it easy otherwise I'd get burned out. Another mom had good advice for me: You're a mom first! So I've learned to implement a few things here and there, not everything, to fit our lifestyle and schedule. Some days are harder, some days are easier. On the harder days, I feel bitter about moms with typically developing kids not having to feel this kind of pressure, but that's just me not putting my energy to better use. Anyway....
Preschool at 2 yrs seems too early. I'm told Matthew can transition to preschool when he turns 3... or whenever we think is best. So, while your PT has Finn's best interest in mind, you'll know what may work better for him.

Jeanette said...

We moved Sydney's ECI appt around a few times until we found a great time when she is the most aware and open to it. For us it is after lunch. my 5 year old drives me NUTS when ECI shows up. I am a terrible mom and I banish him to upstairs while we do therapy. He get's to watch TV in my room or play games on the computer. Sydney can't concentrate with him bouncing around.

sheree said...

I was just cracking up because I have found myself in the same situation before where the PT was all "wow, you guys have been practicing!!" when in reality we haven't done one exercise.

Thanks for that ;)

Anyway, I think the idea of center-based therapy/preschool is pretty cool. I know it's a lot to digest right now but I think you will come to a decision soon and you'll wonder why you ever doubted it! I hope so anyway ;)

JaybirdNWA said...

Lisa, I share your frustration both as a parent and as a Therapist. I can see where my working with him early on has given him the tools that he needs to build upon but I don't believe that he will fall off the charts without my working with him on a daily basis. I mostly see my role as Therapist/Dad to help prevent poor movement patterns that he has a habit of doing (moving his hips out to the side - external rotation, transitioning from sitting to belly by falling down between his legs instead of falling to the side, etc). But I find that my mindset toward his therapy has changed from when he was 1-4 months old. But in the end, he will walk, crawl, talk, etc when he is ready. But that doesn't mean that I don't give him the tools he needs for those activities. Our view is that he may require a little more time, but then again this just gives us a little more time to enjoy him as a baby.

JaybirdNWA said...

One more thing about center-based therapy. Having your child in a daycare/preshool that is a special needs facility may have a negative impact on how he is integrated into a normal classroom when he goes to school. So you may want to ask about that. I know that that is an issue here in my state.

Loren Stow said...

Oh, I second the whole therapy thing! You have basically read my mind! I can't seem to get it together to do regular excercises at home and while I completely agree that therapy is beneficial, I also sometimes wonder if Kai would just do it anyway? I think the key is that he does it sooner so that the delay in his development is kept at a minimum?
Anyhoo - I think it's difficult to find a balance between 'what's best' and 'what's best'... if you know what I mean?
But, at the end of the day, no matter what is best, it will always come down to moms doing THEIR best - we can't do more than that!

datri said...

Oh, I beat myself up over the "am I doing enough" stuff all the time. I don't think overall it has an effect on the fact that Kayla is "low functioning". You can spend your whole time second guessing yourself on the decisions you make for your kids, especially special needs ones, since we seem to be faced with making so many decisions that we took for granted previously.

Chrystal said...

I am so with you on this. Some (most) days I'm all "therapy schmerapy" and then I keep doing it anyway because I'm afraid of what will happen if I don't. Sucky motive, I know.