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When I Learned My Son With Autism Is in the Bottom 1% of His Peers

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So much has changed in such a short time for my son, Timothy. I’m having a hard time catching my breath.

Last week was hard. I learned Timothy is being discharged from IBI (intensive behavioral intervention) therapy which has been his second home for almost 18 months. But that’s not the hard part.

The hard part was reading he was in the bottom one percent of 100 of his peers. Oh how that hurt my heart.

A general blanket of numbness came over me as it sunk in. Yes this is real. It’s not going away any time soon. And even as I felt it wash over me, I was calm. I knew these things already. I was not surprised.

These are some other things I know about my son.

1. I know my son and I know his struggles are real and not buzz words.

2. I know that when he tries to print his name, today he can’t, and that’s OK.

3. I know that when he tries to make it to the toilet, sometimes he can’t, and that’s OK.

4. I know that when he tries to fit in he won’t today, and that’s OK.

5. I know that when he tries to eat “other” foods, today he can’t, and that’s OK.

6. I know that when he tries to tie his shoes, today he can’t, and that’s OK.

7. I know that when he tries to do everyday kid things, today he can’t, and that’s OK.

8. I know that when he rides the bus (aye, it ’tis the short one, folks) he wears a harness to keep him safe, today, and that’s OK.

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9. I know that at 7 years old he wears diapers still, today, and that’s OK.

10. I know he feels happiness today and that’s OK.

11. I know he feels loved today and that’s OK.

12. I know he tries today and that’s OK.

Maybe tomorrow he can do something he can’t today. Maybe not. I am OK with that, either way. We live for today and what he can do. This is what Timothy’s autism looks like. How about yours?

A version of this post originally appeared on The Book of Timothy

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Originally published: June 8, 2015
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