Saturday, February 12, 2011

6/52 Words

I didn't pick the most exciting thing to photograph for the theme this week, but it is the topic that came right to my mind when I saw the theme was Words.  (Warning:  lots of sarcasm from a Special Needs parent ahead). 

Clayton's therapy evalutations always take place at the beginning of the new year.  So just when I get all excited about new beginnings and fresh starts, we have to tackle goals and setbacks and all the protocol that comes with testing Clayton.  The last few years have been the same:  each therapist starts questioning me on what kind of goals I want Clayton to have for the upcoming year, and they are met with the same old grimace on my face as I reluctantly say "let me think about it."

Just Words on Paper

What am I supposed to say?  Re-evaluations are becoming the time of year when Brian and I have to look at each other and say "Well, that didn't work.  What else can we try?"  When Clayton first came home from the hospital, his PT goals were easy:  get him sitting up, crawling, walking.  Then we had to come to the realization that walking wasn't going to come easy.  So as a parent, you readjust to the idea of a walker.  Okay, that didn't exactly work.  Let's readjust again to the idea of a wheelchair "just until he gets going in the walker."  Yeah, right.  Years later, we're testing power chairs.  Does that sound like we're moving toward a walker? 

Um, no.

Clayton didn't meet any PT goals this past year.  Granted, he did have a major setback with the Shunt Debacle of 2010.  But in 2009, he only met one PT goal.  I'm not blaming Clayton.  He does work hard, and his strength in general has improved greatly over these last couple of years.  But then, that's not on The Test.  The Test is cut and dried:  can he do it or not?  And because of that, The Test only shows that he is on the level of a six month old physically.  Well, how freaking exciting is that for a parent to read each year?!  

And as far as OT goals go, I just get frustrated for Clayton.  I know it can be done, but all these dressing goals, self-care goals--how does one do that one-handed exactly???  Especially when that one hand is definitely not the strongest in its class.  Clayton is learning to use his left hand as a "helper" for his right hand, but he still has a long way to go in figuring out the logistics of using both hands together.  And the OT Test also compares Clayton to a regular seven year old.  Here's an idea:  how about you test his ability to adapt instead of the old "can he do it or can he not?"  Because more often than not, if he does complete a task on The Test, it isn't the way The Test wants him to, so he doesn't even get credit for it.  HOW COMPLETELY FRUSTRATING!    

My mother's heart mourns each year when I read these "results."  (Like I didn't know what they were already!)  I have to consciously remind myself that they are indeed "just words on paper," and they tell nothing of Clayton's actual story.  Like all the things he CAN do:

At seven and a half, Clayton . . .

1.  memorizes a song after hearing it once, twice at the most (and even sings the parts every once in a while!)
2.  memorizes the clothing and mannerisms of everyone in a room or on a Gaither tape!
3.  manages to call the people he wants to talk to on an iPhone even though can't officially read their names in the contacts list
4.  knows right from left
5.  knows the routine involved in driving and operating a car (talks us through it every time)
6.  memorizes the route to anywhere after just one trip, and if you go a different route the next time, starts with twenty questions on why the different route
7.  greets everyone at church with a smile, and shakes many hands each Sunday
10.  rides the tube behind the boat when other kids his age are scared of it
11. counts to ten, sometimes twenty
12.  spells his name
13.  kicks booty in Speech Therapy
14.  remembers every detail of a story or event, even after years have passed
15.  thanks people for the smallest of things, which usually melts their hearts
16.  generally brightens the world of everyone he meets!

I'll end the list there, although I'm sure there are some major things I'm leaving out.  I'm positive my mom will be adding to the list as soon as she reads the things I have included!!

So TAKE THAT, MR. TEST!  No matter what the circumstances, your numbers can't begin to measure the abilities of my child.  This momma finds that the results of the evaluation are as follows:  WE'VE GOT ONE PRECIOUS MIRACLE ON OUR HANDS!


Amy said...

OH, I could have written this one! I feel you...believe me. We are in the same spot. I can say a lot of the same wonderful things about Emma. Strangely, I still haven't given up yet. I continue to believe for what those papers and words might indicate is impossible. Call me crazy! But, I keep standing.

I do know your frustrations, and I get a little annoyed too when there is not a place for giving credit if the child solves the problem in another way. Seems silly!

Just wanted you to know that you guys are NOT alone in living this.

Karen Mills said...

I'm looking at your list and I see things so called "normal" seven year olds can't do. Celebrate the victories, because they are the stuff of life. The Test captures one moment, your list captures a life!

Patti H said...

Yes everyone is blessed that has met Clayton. Yes he is a miracle !! You go Clayton !! You are one big ole Momma Bear too Ashley. Hugs my friend