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What I’ve Learned in My 10 Years as the Mom of a Child With Autism

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I’m not big on anniversaries other than my wedding day.

But this month is a huge anniversary, one that needs to be recognized and shared. You see, this month 10 years ago, my son Justin received his autism diagnosis months after his initial one of pervasive developmental disorder. For the first time ever it was official, written on his pediatric charts, used when charting his future educational course. It was the first time we ever used the word “autism,” said the word out loud, tried it on for size.

His diagnosis coincided with a whirlwind of decisions my husband and I had to make. Although our school district would be taking Justin the following September at the tender age of 2.5, after viewing their program we realized our son would need more, and that he’d never receive it in Virginia. We also had only eight hours monthly of early intervention services that did not include applied behavioral analysis. We were quickly realizing if we wanted to do our best by our son, we needed to relocate to New Jersey, both for its school and early intervention services and proximity to our families. I spent hours researching where to live, going by word-of-mouth recommendations rather than observation as none of the school districts would let me visit prior to moving. We were thrown so many loops, but we asked questions, went online and soaked up as much information as we could.

We learned.

Ten years later, I’m able to look back at so much of what I’ve learned as the mom of a child with autism for a decade — wisdom I’d like to pass on to any of you just starting your journey.

You will learn that no matter how close you are to people, some of them won’t get your life. You will learn to let them go.

You will learn to value your child’s progress in incremental steps without needing boundless leaps.

You will learn you can meet your child’s needs and will exceed your own expectations.

You will learn more about autism than you ever thought you’d know. You will learn to love educating the world about your child.

You will learn you’ll always worry about what will happen to them after you die. You will learn to live with it.

You will learn it is imperative to take care of yourself. Your child deserves a healthy parent, and you deserve to be whole, too.

You will learn that your love for your child knows no bounds. This knowledge will inspire you to do the best you can even when you’re exhausted and afraid. It will carry you through.

You will learn, and your child will teach you if you leave yourself open.

You will learn.

mom and young son on merry go round
Kim and her son Justin.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: February 6, 2016
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