To the parents of a newly-diagnosed child on World Autism Day: One day you will bake a cake
Nothing could have prepared me for that rainy April morning 11 years ago when my daughter Lily was first diagnosed with autism: not the growing prevalence among children, not the autism awareness online, not even relationships with autistic people.
No matter how incredible the education, no matter how positive the exposure – learning your child has autism can take the breath from your lungs. You lose the one thing that every parent desperately wants: certainty.
"Give me something reliably true," is what I said after learning the news. An autism diagnosis drew a red line through my plans and the future I had imagined for us.
But Lily's love changed me, and I watch every year as Lily's light changes the world. I would never go back and rewrite this story. I would choose being mom to my girl.
World Autism Day is Tuesday. The day was crafted in 2018 by the United Nations General Assembly as a day to promote, protect and ensure rights, freedoms and dignity for people with disabilities.
As we approach what some in the community call Autism Acceptance Day, my heart turns to the parents who are new here, who have just learned their child has a lifelong neurological condition, who don't yet know what the range of characteristics may be, and who probably don't yet feel like celebrating.
I want you to know that one day you will throw a party – just as I now do every year on World Autism Day with my autistic daughter. Though it could take time.
Eleven years ago, I thought we were just passing through, until I realized autism wasn't a mountain I could climb and conquer. It was a garden I had to nurture, day in and day out.
I wish I would've opened my heart and my arms a little sooner. Here's what I wish I knew 11 years ago.
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Accept the diagnosis, reject the prognosis
I walked into the stuffy back office at our local clinic in April 2013, a single mom of two with so much unresolved pain, I thought another thing would break me.
We couldn't have been there more than 10 minutes before the doctor glanced at his college intern to say, "You see that? Textbook autism. Look at her. She has no idea we're in the room right now." I'm not sure I was even in the room. I felt myself slowly fade into the background, lost in my thoughts.
My daughter's speech stopped progressing at 2 years old. I suspected something may be up and I was terrified of what that may mean. I was getting ready to graduate college and had all of my plans together on what to pursue after school to be able to provide for my kids. A red line was drawn through those plans, too. I could not pursue the career I'd worked so hard for. Not now that our life would be one therapy appointment after another and around-the-clock care.
I didn't know anything about autism the day Lily was diagnosed. I remember curling up in a ball and crying until I was too exhausted to shed another tear.
If I could go back, I would tell her it's OK to accept the diagnosis, because rejecting it would mean rejecting my daughter, and she would feel it every day of her life.
I would also tell myself to refuse every bit of the prognosis.
Sometimes as parents, we so desperately want to have something to plan for. We'd rather cling tight to a dire outcome than plunge ourselves into the unknown. It oddly feels safer there. But deciding a child's potential before they are ever able to live it out, is felt by them. It goes deep into the soil of their life and affects how they grow.
We have to reject every limitation placed on our child, not just in our mind; it has to penetrate the heart and permeate our core. Rejecting limitations won't bring us any certainty, but it will allow our children to become everything they are meant to be.
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You cannot stop living
Another thing I wish I would've known is that life doesn't stop at a diagnosis.
Just as we reject the projected limitations of our child's autism, we also need to reject the idea that going out into the world will be a disaster.
I've noticed that this is hard for some parents of autistic kids. We resent that we have to live a different life than the other families we see. I did.
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We don't venture out because we don't want the world to look at us and notice our difference. We are envious that we can't just be "normal families." I was that way for years. I told people that I loved my child and that I didn't want the world to be harsh to her.
It was actually that I didn't want the world to be harsh to me. I wasn't protecting her. I was protecting myself.
I realized when she was about 8 years old, that I was the one holding us back.
The world cannot be off limits for your disabled child.
It was the fresh air, the mountains, the trees, the water that brought my daughter to life, and subsequently, our adventures together injected life into me.
I crave adventures with my girl now. This is her world, too. So let people stare. Let them sit in their discomfort. Let them witness the freedom that comes from being loved for who you are.
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One day, you will bake a cake
To the parent of a newly diagnosed child, I hope you know how proud of you I am. You want to learn. You want to grow. You want to have a beautiful life with your child. I know that.
Change is hard, and loss of control is scary. There may even be a burial of dreams, but I promise you, they will be so much wilder one day.
Yes, there will be challenges and tough weeks. In this early stage, find your village. Understand that your child cannot be separated from their autism, so don't attempt to take it upon yourself.
I want you to know that Lily is now 14. She is not broken. She's a teenage girl who loves the Spice Girls, who thinks boys are cute, who laughs at your jokes and whose joy fills a room. She loves baking and aquatic life and though she isn't fully verbal, she absolutely can communicate.
She told me to tell you that "today is a beautiful day."
I know that World Autism Day may not feel like one big party right now. I know the day might not yet feel beautiful. Your life has just changed. You are looking at all the things you had planned and you are learning how to let it all go.
But your day is coming when an overwhelming love will replace the fear you have right now.
Maybe like me, you'll even tell your story.
Maybe like Lily, you'll want to bake a cake.
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