Thursday, August 13, 2009

Well, that was depressing.

Finn's PT was here this morning. I didn't even know that she was going to be doing his evaluation today. I knew she was due to do it by the end of this month, but last time (6ish months ago) she told me ahead of time, "Next week when I come, I'll be evaluating him." So I knew ahead of time. This time I didn't know until she got here today. Not that knowing ahead of time would have made a difference - it's not like I could have prepped Finn to do his best work for her today or anything. But still, it just caught me kind of off guard.

There's nothing more discouraging than thinking your kid is doing just fabulously and then watching him be evaluated and realizing that he's . . . not. I mean, he's doing okay, you know? But Ds superstar, he ain't. I know that the older he gets, the more discrepancy there will be in his actual abilities as compared to "typical" kids. And what is up with that anyway? Why do they have to use regular kids as the yardstick? Why can't they use kids with Ds as the yardstick in evaluating kids with Ds for crying out loud? Anyway, when he had his eval 6 months ago, he was close to being on track for nearly everything. Now that he's older, he's falling behind more.

Why do I even care? He's the same baby now as he was before she did her silly eval this morning.

It's funny, because for a little while now I've secretly thought to myself "He kind of reminds me more of an 8 - 10 month old than a 12 - 13 month old." And sure enough, she said today that for gross motor, he's at about an 8-month old level. I don't know about the other areas - she said she has to go over some things before she is able to compute his ability level in other areas and write up her report.

I guess in a way I should be happy. I mean, this means there is no question about his qualifying for services. But honestly, there is a part of me that gets more and more tired of services all the time and I seriously consider just chucking it all sometimes. Disability is natural, you know? It's a normal variation of life. Yes, I want to help Finn be the best he can be, but sometimes I wonder about all this therapy, I really do.

Tomorrow he has OT bright and early in the morning (which I'm really inclined at this point, thus far anyway, to think is mostly a useless waste of time), and then his service coordinator is coming over for our IFSP meeting. I have no idea what to do to prep for that. I have nothing prepared. I'm not sure what to request, what goals to set, etc. And part of me doesn't care. Finn is what he is. He'll be what he's going to be. All these attempts to mold him, I'm just really starting to wonder about it all.


Jeanette said...

I hate evals. We are due for Sydney's 2 year and I just dread it. I don't want to be asked a bunch of questions for two hours where all I say is no, no, no, not yet, well sorta, no, no, kinda, oh...yes!,no, no....

Mel said...

It's all a game- think of it that way. Here in NZ the kids get evaluated to see how much support they will get at school. We 'paint it black' and have to separate it from how the kids are actually doing. Not that we lie, but you just curb your enthusiasm. Finnian IS doing really well. Ignore the PT. What would she know? LOTS of kids without DS are not walking at 12-13 months. So what? He will walk and a month here or there is nothing. We are lucky- our therapy is play-based and practical- ideas for me to slip in at home. I don't want Luke to look back at his childhood and have miserable memories of being 'therapied' or him to be a project. I know exactly how you feel. Do you have the option of a different style of physical therapy?

heidi marie said...

there are lots of charts out for milestones of kids with ds...if you want to see how he does compared to other kids with ds. your pedi or therapists should be able to help you out. but to be honest i wouldn't recommend going by them or over analyzing them. finnian is healthy, adorable, HAPPY, and doing awesome! i know it isn't easy. evals can stink. i just tune them out.

one thing to keep in mind for some encouragement. henry's milestones go in spurts. he will continually improve on things slowly i guess...but it just seems that one day he is doing all kinds of things he never did before...and then it tapers off. he reaches milestones mostly in spurts. especially the biggies like rolling, crawling, cruising, etc. and it never fails. new fine motor skills following along with one big gross motor skill. so while it may seem that finnian could be at a stand still from time to time- he's watching and learning and out of nowhere he will do something and act like he's been doing it for months!!!

Catherine Just said...

Augh. I know how hard that is to digest.
And you are RIGHT ON they should be "compared" to other kids with Ds - NOT "typical" kids.
Seems odd and not "natural".
Sorry you went through that.
I'm not looking forward to that myself. Max is 6 months and doing the same that yours was at this age. Almost everything is on track. He doesn't qualify for OT - and just BARELY got PT because the guy who evaluated him knows the person at Regional Center and figured they might be inclined to give us the service.
I somehow feel proud of Max for being so strong and compare him to other kids with Ds sometimes just like I would if he were typical and proud of him for being ahead of the game in some ways. It's all just an illusion though. He is doing exactly what he is suppose to do right now and it is going to change. I have been warned......and I know I'm going to feel the same way you do.

Brandie said...

The twelve month eval is the worst. I cried after Goldie's. The rest haven't been as bad. I have a lot of mixed feelings about early intervention. Finn is doing great! If you house is anything like mine, he'll learn more from his siblings than any professional!

datri said...

I don't think it gets any easier. Kayla's evals are consistently in the "less than 1/10 of 1 percentile" across all domains. Have been for the past few years. But after the initial shock, I just shrug and know that it isn't who Kayla is.

Lisa said...

A couple of things...

My response to "Is she doing ______?" or "Can she _______?" is always the same. "I have not seen her do that, but it wouldn't surprise me if she could." There have been so many times Bridget has proved me dead wrong :) when I have said, "No, she's not really doing that" or "She doesn't seem to have an interest in that at this point". She's like...oh, really, this.

Bridget is three. I'd say in many ways she's like a typical two or two and a half year old. She is doing lots of great things. She also has a few areas of fairly significant delay. It is what it is. Evals are meant to justify the county/state/school system providing services. Don't look at them to tell you anything about Finn you haven't already seen or known. Also, an evaluation or assessment is a snapshot in time. It tells what the observer has seen on that particular day, but not all Finn is currently doing or capable of doing.

Lisa said...

ps...I am working on a series of posts about the "disability system"(which includes discussion of everything from how the initial diagnosis is presented, to therapy, evals and assessments, to how the language and stereotypes in the medical world and the "service system" as a whole impact our children).

Falling into the trap of letting others (doctors, therapists, teachers) guide perceptions of a child's development or potential is something many of us have done, at least to some degree.

We need to take a step back and re-evaluate how we can best use help that's offered while not inadvertently selling our kids short in the process.

Part I of my series of posts is up on Bridget's Light already. Look for the rest soon.