The Things That Don't Change Don't Keep Progress from Being Made

We're in the middle of getting Lily reassessed--last week I met with the school and we did a 504 for her to make her accommodations legally binding, and I came home with paperwork from them to fill out. We also went to the pediatrician to see about medication for the ADHD symptoms, filled out assessments there and got forms for the teachers to fill out (which they did the same day I sent the forms to them). This week I have more forms to fill out for the neuropsychologist we see on Thursday.

In the midst of looking through piles and piles of paperwork to unearth an assessment on Lily when she was in kindergarten, I of course ran across the huge stack of Bobby's assessments and records. I sat on my closet floor, the piles in my lap, and read the last formal assessment again--a decade ago this month, and saw how little things had changed in terms of language delays, academic delays, and shook my head in disbelief that so little could change while, at the same time, so much could change. No, academics will never be my son's strong suit; even Rosie has surpassed him academically, but the changes that really matter, oh my, those are so numerous and significant that they deserve recognition and applause.

Verbally, Bobby is in the first percentile. How painful that was ten years ago to read, to hear, to accept. Not because I wanted him to be the smartest, the best, but because of how hard he worked (and still does) to overcome these weaknesses and how often they limit his ability to process and understand information. And yet, that same report showed strengths in the visual and performance that placed him well above many of his peers at the time.

Bobby is a bundle of surprising and unexpected contradictions, and words on an assessment can and will never capture the reality of who he is. He is kind-hearted, sweet, loving. He is mastering sarcasm (last week I asked him to do something and he cracked, "Sure, ask the 22-year-old autistic kid to do it." He laughs a belly laugh like I do, from inside himself that must be let out, that cannot be contained. He delights in being helpful (most of the time), and can spend hours in animated conversation with Lily and Rose about Pokemon, Yu-gi-oh and Dragonball-Z. He can annoy the hell out of them, too, proving that normal sibling goading is a skill he has mastered well.

I will remember these things as we go through this new assessment for Lily, that words from an assessment can not possibly capture her totality, her wonderfulness, her exuberance for life, her zest and her zany smile that light up a room. I will remember that we go through all of this because she needs some extra help to allow her to be her best, not because we want to change her, cure her, make her other than who she is, but because we want her to have the help she needs to reach her potential.

the only way to clean a room--in a trench coat!

Who we are, the totality of our personhood, that is an indelible part of us. Pieces of paper that catalog our weaknesses cannot capture the whole of us, only guide us in way to get around the weaknesses by capitalizing on our strengths. I will remember that, counter each listed weakness with a strength, and we will get through this, recognizing it for the hassle that must be gotten through, rather than making it into a catastrophe. 

And if it comes that Rosie will need reassessment for additional help when she reaches the same age Lily is, we'll get through that, too. They're just unpleasant hoops that must be jumped through.

Rosie arranging toys.


melbo said...

Nobody knows better than you how far he's come and I agree, sometimes the assessments don't capture that fully. How can they? They are not the sum total of a person as you rightly pointed out.

I know W has a processing delay - I know that delay in an academic setting has its problems, as it will in life - he will need to ensure he has time and space to think.

I love him, I can see how bright he is and how witty. When he is calm, so much seems possible for him. But what breaks my heart is that someone in the future may judge him entirely by a report. That would be a big mistake.

We know our kids and I think we just want others to take the time to know them too. It doesn't seem too much to ask but sometimes it feels as if you're asking for the world.

farmwifetwo said...

"Reach her potential"... ooooh... curing... brain transplants... bad, bad, bad... But it certainly is nice to read the eldests growth and changes in his reports.


Have the same problem with my youngest's reports. This lack of growth that you know has happened but never shows up on the reports. Which is why I've kept records, homework, DSi pictures and flipnote drawings. This morning I watched this amazing smart child, who has proven that being severely autistic doesn't mean you are severely ID, do a sheet of -9's (subtraction) today without a calculator. Do you have any idea how long we've been working on math facts and he just sits there, ignores the calculator and fills in the sheet??? WOW!!! Yet, had someone tested him instead of letting him do the sheet as he saw fit - not in linear order - he would have failed. Had some therapist demand he do things "this way only" he would have failed.

Potential = independance and yes, that may mean "curing" like my eldest has been "cured". It also may mean living with some form of supervised care. Why would I ever accept the Dev Ped's comments "he'll need life long support and here, read these". That isn't accepting, that isn't parenting, that's simply being lazy and doesn't help the child become an adult which is the the parents job... disabled or "normal" child.

Anonymous said...

Although I re-iterate another's comments, this moved me greatly:

"Bobby is a bundle of surprising and unexpected contradictions, and words on an assessment can and will never capture the reality of who he is."

I feel this deep in my bones about my own son and my own self. Some things will persist with us throught our lives. I do not seek a cure for either of us, only to understand, accept, and have a good quality of life.

Despite this, we each march on and make our own progress and meaning. I am grateful to those who have compassion and open minds.

Thank you for a lovely post.

K Wombles said...

Melbo, sometimes it really does feel that way,to see them in their totality.

fw2, doomsday predictions about where our kids will wind up don't help us or our children. If the professionals would instead tell us that with dedicated effort, our children will be able to make incredible progress, parents and kids would be much better off.

aquietweek, figuring out what we have power to change about ourselves and what we're simply going to have to accept and find work-arounds for is key--that way we don't waste effort and energy but instead target that effort and energy to where it is most effective.

Thanks for stopping by and commenting.

Brenda said...

I love the step back and perspective you offer to this story. Most of all, I love the belly laugh from your son.

K Wombles said...

Thank you, Brenda. :) He laughs a great deal, and it's always a blessing to hear it.