Seeing the Delays in Writing

Jamie and I just came from Cooper’s Treatment Plan meeting. We do these quarterly. It feels like monthly sometimes.

Today, we discussed his standard diagnostic assessments with cognitive testing. Man that is a mouthful.

If you live in our world you know about the Vineland, the Behavior Assessment System for Children, the SDQ, The CASII, the Gilliam Autism Rating Scale and the Weshsler Nonverbal Scale of Ability.

All of these are black and white standardized tests that are used to tell you that your child is autistic.

In our case, they are used to tell us that our child still has nonverbal, severe, level three setting, autism. It hasn’t gone away. Not like we expected it too.

These assessments are required by the state. They are required in order for him to get the help he needs.

We do them often. Or at least it feels like often.

I will never get used to any of them. I dread them actually.

They are long. They are black and white. There are a lot of numbers and percentages. Most of the time they don’t make any sense.

You will want to skip ahead to the end and see the answer. Even though you already know the answer.

If you are like me you will get a pit in your stomach as you read through them. You will get a little tense. You will feel your husband’s hand on your leg. You will notice he is breathing a bit differently.

You will read about your family history. About your child’s developmental history. Their medical and health history. You will read about your vaginal birth. You will feel weird reading about a child’s life summarized into a few pages of paper.

It will seem weird reading your exact words…’mom describes Cooper as….’ ‘Dad says…’

You will read words like ‘level three setting’ and ‘severe’ and ‘intellectually impaired.’

For a second you will think this can’t possibly be right. This can’t possibly be your child. You will feel a little hurt that these people ranked your child in this way. You’ll wonder why.

And then you’ll get mad because you know they are right. They are incredibly accurate.

But then you will remember that these are just tests. Black and white, standardized tests. They don’t take into account how amazing your kid is. Or the progress they’ve made.

You’ll find comfort in that. A little bit at least.

I want you to know that I am in an okay place with my son’s diagnosis. I know he is autistic. I know he will be autistic for his whole life. I know he may never speak. I’ve accepted that he will most likely live with us forever.

And yet, seeing the delays in writing never gets any easier. Sitting in a room with his team always puts a pit in my stomach. And I love his team! I love his school!

I just don’t want to do it. I hate it actually.

Jamie handed me a Kleenex box before we started. Which I didn’t need. It’s just hard.

I hate reading about how delayed he is.

I despise hearing that he kicks. Or that he’s aggressive.  I never know what to say. Do I apologize? Am I supposed to be embarrassed?

I don’t make excuses anymore. When he was younger I used to say…’maybe he was just tired or having an off day.’ I don’t do that anymore. It wasn’t helping anyone. Especially not Cooper.

I’m eight years in and I know these are just words. Important words, yes. Trust me. I know. I get that. But damn, seeing it in writing all the time is hard.

I may be numb to it. I no longer cry. But I do feel bad after.

But you know what helps? Seeing my amazing kid right after. Watching him cut with a scissors. Spell the word ‘blue.’ And trace his name.

Hearing his therapists say that he is the star pupil. That he is learning to brush his teeth on his own. And that they are working on pairing the ‘m’ sound with ‘a’ for ‘mom.’

Seeing his face when he sees that his mom and dad are at his school. Getting his hugs and kisses.

And seeing how far he has come in the last year.

I’m not sure if seeing the delays in writing will ever get any easier. I can’t say for sure.

They sting. They make me feel sick. They make me want to lash out sometimes. Cry. Run away. Steal my boy away from the weight of his diagnosis.

But, I know they are all accurate. They are the truth. And accepting that is one of the hardest battles you will ever face as a parent.

This is autism. It’s not going away. It’s very serious. The delays are real. And the therapy is needed.

Some days I swear I’ve mastered all that. And some days, it still takes my breath away.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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