I am 1 in 29.5 raising a child with Autism

Five years have passed since I wrote the post I am 1 in 34 and it’s time for an update. For one thing, the statistics have changed. The CDC has released new data that now estimates 1 in 59 children have Autism. My original post was a response to the release of data that said 1 in 68 children were on the Autism spectrum. At that time, my family was only a few years out from our daughter’s diagnosis and that statistic made me realize how many other parents, grandparents, schools and communities were dealing with this reality. While every family experiences Autism differently, there are some common themes that will be familiar to other members of this expanding club, like:

  • Your child may not speak speak but he or she is the bossiest person you know
  • You are on a first name basis with your local pharmacist
  • You have teared up at small acts of kindness from strangers, like letting you cut in line at the grocery store because at any moment your child’s goodwill might run out
  • You have sent a note to school with your twelve-year old that says, “heads up, she hasn’t pooped today”
  • The music is on in your house ALL the time
  • You are grateful for online subscriptions because your magazines regularly get shredded
  • School vacations don’t mean beaches and skiing, they mean medication adjustments and maybe one more run at potty training
  • You are always paying off some new medical test or procedure that is not yet covered by health insurance
  • Sleeping through the night is something you’ve heard is possible, but haven’t experienced in years
  • You have added locks to every door in your house and maybe even your trash can
  • You know what it means to love someone for who they are, not what they may or may not achieve

My daughter was six when I wrote the last version of this piece, our lives are so different now. As my other two children grow into adolescence and all the insecurity and changes that come with it, I appreciate that my youngest child remains somewhat unchanged.

  • I do not worry that she will break anyone’s heart or have her heart broken
  • I appreciate all her victories no matter how small because I only ever compare her to herself
  • I am grateful that no matter how grumpy my teenage sons may be, they will always smile at their sister

Do I lie in bed at night and worry about our future, her future? Yes, all the time, but I love my daughter for who she is. She bounces, she growls, she giggles. She never sleeps when I want her to. She can turn a shower into an all day activity. She has never had an insecure moment. She has no idea she is beautiful.

Being a special-needs parent shapes almost everything about my life and that is true for every other parent whose child is 1 in 59. No matter how different our kids are, or how different our lives are, there are things we all share: we want our children to be seen and valued for who they are and for what they can do. We want them to have a safe place in the world. We want the world to see them as we do, as one of one, courageous, bright and most of all beloved.