2.15.2012

the therapy assessment "experience"

Tomorrow is a therapy day marathon.

But not for Ellie this time.

Will is having a huge review/diagnostic experience (for lack of a better word.  Perhaps I should go to bed?)

He'll be seeing a physical therapist, a occupational therapist, & a speech therapist.

He hasn't been in speech since he was nearly 2 and he hasn't been in pt or ot since he was 3.

I'll explain why we're doing this at a later date.  (Maybe.)  We're trying to equalize the playing field and empower ourselves and give him the resources he may require for school.

(Kindergarten next year?!?!  How is this possible???  Do you think they'll put a red flag on his new student file if I fall apart crying when I go register him tomorrow?)

I'm nervous about these evaluations.

Experience was a terrible word choice.  That makes it sound like we're going to Disney World or something tomorrow.

I will probably treat him to McDonald's.  That's not as great as Disney World but for a 4 year old, it ranks right up there.

I think he is doing great.  Sure, we have things we are working on and certain tasks that are challenging him right now but don't all little kids?

And some things give him extra challenges since he has limb differences.  And he knows this.  And I really, really, really don't want him to feel discouraged if a therapist isn't very sensitive in conveying how he does on the test to me.

(I'm taking my handy dandy new ipad I won along with some new magazines for him to read to hopefully distract him while I go over results with the various therapists.)

Selfishly, I'm nervous because if I have to cram even one more therapy into my week... yikes.  Actually, that's not true.  Ellie no longer has therapy on Mondays so technically I could fill that day again with therapy but I love love love my Mondays "off" now.  So two?  I don't think I can handle adding potentially two more therapies into our lives.

When Will was a baby and a toddler, I remember his various therapists doing these standardized assessments of his skills.  It used to drive both the therapist and I nuts because he would "fail" certain tasks ("able to grab an object using two fingers on one hand.)  Yet - he could still do the task (Grabbing an object) just not in the way it was described.  It almost didn't seem fair - like he was being set up for failure simply by the way the questions were asked.  They were written for the "typical" child - not a child with hand and feet differences.  It's like we tell school principals that we are visiting with lately - we expect Will to be held to the same standard as other children.  We expect him to master the same skills.  We just need him to be given the freedom and grace to get there differently.
I hope tomorrow's assessments aren't standardized like that because it is disheartening and makes it seem like he "can't" when he is really very capable and can do things - just differently.

Goodness.  I kind of have a rather bad attitude, don't I?  Normally I think I'm pretty optimistic.

Perhaps it will be a very wonderful & encouraging experience?

All I have to say is that he is one amazing kid.  And I really hope they see that tomorrow & recognize who he is ... regardless of how well he "performs."


(And forgot to post a whatca wanna know today... so here it is in a nutshell for the question from Bryna regarding potential surgeries for Ellie's dislocated shoulders:
As best as I currently understand it (although I'm not going to say never because whenever I do that, usually what I think can't happen, does)... she won't be having surgery on her shoulders.  Though they seemed to cause her a lot of pain as an infant, they no longer do and we do a lot of stretches to help increase her range of motion through the shoulder.  Apparently, her uppers doctor is treating her shoulders as one unit with her elbows.  Ellie's elbows are working really, really well.  (remember, she has a joint condition affecting all joints in her limbs)  Because her elbows work so great, there is no reason to apparently operate on the shoulders.  We just keep stretching and helping her learn modified ways to reach or accomplish various tasks.)

1 thoughts:

ywilbur said...

One of the things I wasn't prepared for was the big fat zero they gave Kharan for pencil grip on Kindergarten skills test. Right next to the 4/4 score they gave him for printing his name and the 2/4 score for drawing a stick figure.

I just learned 3 days ago that Kharan fits diagnosis for dyslexia and I cried like a fool, as Kharan likes say.

Some days you just don't feel optimistic! Then you cry like a fool and move on.

I once had a dog. My first solo dog as single person. I took him home from pound because I volunteered there and they said at 3 months that he was dying and wouldn't live out the night and he was my 'snuggly' pup. So, 12 years later I cried like a fool when he did.

That dog taught me so much though: he had hemophilia, nearly bled to death with every puppy tooth that fell out, excruciating joint swelling. All that I was like wow OK then. But, one thing he kept getting was itchy which would lead to chewing and then bleeding sores so went to a doggy dermatologists (yes they have those) and what made me cry like a fool was: this dog was allergic to 3 grasses, 4 weeds, 2 shrubs, 5 types of trees, various flower pollens, roach dust and mold!

I don't know what trying to say just felt like sharing that story. Sometimes Archi's story makes me sad or bitter and other times it makes me say wow and inspires and other times it strikes me as profoundly funny...like something in a comedy! Dog with hemophilia, ok sure I get that...but let's throw in allergies and lots of them. I bet Archi would have gotten a big fat zero in 'how to be a dog'.

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