Writing my Son's Story a Little Differently

His progress knows no limits to his dad and me.

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Hello friends,

I want to brag about my son Cooper for a minute. His dad and I just finished up his yearly assessment with the state. I know every country is different when it comes to autism. Heck, states and even counties are different in the USA. Services and supports vary. Some better than others.

We live in a fantastic state for disabilities. Minnesota values people with additional needs and prioritizes their independence, goals, and dreams. We are blessed to get the supports and services that we need to help our son live his best life.

Now in saying that, it feels like we are always doing an evaluation of sorts. Never-ending questionnaires asking what he can and can’t do. The state, county, insurance, school, therapy…it feels constant. It feels like we are constantly having to prove his diagnosis…something we were once afraid and wanted to run from, now we have to prove and run too. It’s an interesting twist as our son has aged to eleven, almost twelve.

And often, after the meetings, we feel bleak. We feel like we’ve just ran the marathon of his life in a 2-hour appointment, listing out all of his hards, his cannots, his will nots, and so on.

No, he doesn’t have friends. No, he can’t talk. No, he has no self-care. Yes, he self-injures. No, he can’t be outside alone.

They tell you to describe his hardest day. I now have him leave the room when we do it. I don’t want him to ever hear his hard parts listed out like that. Not ever.

He is no longer evaluated next to his peers because it’s not apples to apples anymore. Instead, he is evaluated on his progress from the prior year. And his regressions. Forwards, backwards, and no change. Data on a chart.

A beautiful life summarized in 13 pages.

2020 was a hard year. 2021 has been better. 2022 he turned a corner. But still not back to normal. The isolation we have always lived intensified.

For too long our sweet boy lost his therapies, he lost his outings into the community. We saw his anxiety spike to dangerous levels.

He lost sleep. So did we. We saw the heartbreaking realities of self-injuring. We also learned that when we do venture out into the community, he needs two to one in the community at all times.

Those are all hard pills to swallow, no matter how big the drink. On paper they are bleak. Said out loud they are wearing.

But then, we spoke of our son’s dreams. In prior years, I didn’t know what to say at this part. Because he never shared them with me. Now, not a day goes by when he doesn’t ask me for something.

And I got to say the sentence out loud, ‘my son wants to be a pirate and go on a treasure hunt.’ And we all laughed and smiled because it’s the most wonderful thing ever.

We then spoke about his color.

He wants to ride a firetruck and a train. He loves boating and swimming. He can type his favorite things into YouTube. He sleeps every night with his brother. He asks for him daily. His nonverbal communication is unbelievable.

He’s a sixth grader! He rides the bus. He found his place. He loves going.

He rides horses now! And can hit all by himself at Miracle League Baseball. He’s having a birthday party soon and he wants 10 presents.

I used to get so caught up in quantifying where he fell on some chart. Or his prognosis for the future. I can admit that. Because I wanted his life to be easier. I wanted his struggles to stop.

Well, they haven’t. In fact, on paper, they are probably worse.

But when I write his story, it’s written a little differently. Because for the first time ever this year he rode a horse. And he jumped off the boat into the water. He had a camp out on his grandma’s living room floor. He goes to the salon to get his haircut now.

He says words when he wants. He tattles nonverbally on his baby brother daily. He has the best laugh you will ever hear.

His progress knows no limits to his dad and me.

The evaluations are necessary and important. That I know. But try not to let them make you sad. Because they are black and white. They don’t have any color in them.

Focus on the color moms and dads. The light that these kids bring into this world. And tuck the black and white parts away in a drawer for when they are truly needed.

This morning Cooper pretended to be an elephant. He sure loves elephants.

Thank you for being here,
Kate and Cooper

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