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Nothing could have prepared me for that rainy April morning 11 years ago when my daughter Lily was first diagnosed with autism. From the increasing prevalence among children, to autism awareness online, and even to relationships with autistic people.
No matter how great the education you receive, no matter how positive the content, learning that your child has autism can take the breath out of your lungs. You will lose the one thing all parents desperately desire: certainty.
After learning this news, I said, “Please tell me the truth for sure.” An autism diagnosis put a red line in my plans and the future we had imagined.
But Lily’s love changed me. I watch Lily’s light change the world every year. I’m never going to go back and rewrite this story. I would choose to be her daughter’s mother.
World Autism Day is on Tuesday. This day was established by the United Nations General Assembly in 2018 as a day to promote, protect and ensure the rights, freedoms and dignity of people with disabilities.
As we approach what we call Autism Acceptance Day in our community, my heart goes out to the parents who are here for the first time, who have just learned that their child has a lifelong neurological condition, and the range of the trait. It’s for parents who don’t know what it’s like yet. Some people may not want to celebrate yet.
I want you to know that one day you will have a party like I do now every year on World Autism Day with my autistic daughter. Although it may take some time.
Eleven years ago, I thought autism was just passing me by until I realized it wasn’t a mountain I could climb and conquer. It was a garden that I had to cultivate day in and day out.
I wish I had opened my heart and arms sooner. This is what I wish I had known 11 years ago.
Love on the spectrum:At age 17, she discovered she was autistic. This is a story that is becoming more and more common. Here’s why:
Accept the diagnosis and reject the prognosis
In April 2013, I, a single mother of two, walked into the stuffy office of my local doctor’s office with unresolved pain. I thought that my heart would be broken by something else.
We got there less than 10 minutes ago when the doctor took one look at the college intern and said, “You know what? “See? She’s textbook autistic. Look at her. She doesn’t realize we’re in this room right now.” We’re not even sure if she was in the room. I felt myself slowly fading into the background, lost in thought.
My daughter’s language development stopped at the age of two. She thought something was wrong and was scared of what it could mean. I was getting ready to graduate from college and had all my plans about what I was going to pursue after school so I could provide for my kids. Red lines were drawn on those plans as well. I have not been able to pursue the career I have worked so hard for. Nowadays, we don’t live a life filled with therapy appointments and 24-hour care.
The day Lily was diagnosed, I didn’t know anything about autism. I remember curling up in a ball and crying until she was too exhausted to shed any more tears.
If I could go back, I would tell my daughter that it would be okay to accept her diagnosis. Because rejecting her diagnosis would be rejecting her daughter, and her daughter would feel it every day.
I also tell myself to reject all predictions.
As parents, we sometimes feel the urge to make a plan. We would rather hold on tight to a dire outcome than dive into the unknown. Strangely, I feel safer there. However, children also feel that their potential is determined before they reach their full potential. It penetrates deep into the soil of their lives and affects their growth.
We must reject any limitations placed on our children, not just in our own minds. It has to penetrate the heart and penetrate to our very core. Rejecting restrictions will not bring us any certainty, but it will allow our children to become who they are meant to be.
I can’t stop living
Another thing I wish I knew was that life doesn’t end with a diagnosis.
Just as we reject the expected limitations of a child’s autism, we also need to reject the idea that going out into the outside world will be a challenge.
I’ve found this difficult for some parents of children with autism. We resent having to live a different life than the rest of our family. Hooray.
We don’t go on adventures because we don’t want the world to see us and notice how different we are. I’m jealous of not being able to have a “normal family”. I was like that for years too. I told people that I love my child and don’t want her world to be hard on her.
The truth is, I didn’t want the world to be harsh on me. I wasn’t protecting her. She was protecting herself.
When she was about 8 years old, we realized we were holding us back.
The world is not off limits to children with disabilities.
It was the fresh air, mountains, trees, and water that gave life to my daughter, and then the adventures we went on together gave life to me.
Now I want to go on adventures with my daughter. This is her world too. So let people stare. Sit down with discomfort. Let them witness the freedom that comes from being loved for who they are.
What is autism?Autism advocates say this is how we can responsibly support our communities.
one day you bake a cake
To all the parents of newly diagnosed children, I hope you know how proud I am of you. you want to learn. I want to grow. You want to live a wonderful life with your child. I know that.
Change is hard and losing control is scary. Your dream may even be buried, but it promises to become wilder someday.
Yes, there will be challenges and tough weeks. At this early stage, find your village. Understand that you cannot separate your child from autism and do not try to take it on yourself.
Please know that Lily is currently 14 years old. She’s not broken. She is a teenage girl who loves to spice up her girls, thinks boys are cute, laughs at your jokes and fills the room with that joy. She loves baking and aquatic life, and although she’s not fully verbal, she can communicate well enough.
She asked me to tell her, “Today is a great day.”
Embedded content: https://www.instagram.com/p/C3Qc9bjPNtq/
We know that World Autism Day may not feel like a big party right now. I know the day may not feel great just yet. Your life has just changed. You are looking at everything you had planned and learning how to let it all go.
But the day is coming when your current fear will be replaced by overwhelming love.
Maybe you, like me, can tell your own story.
Maybe, like Lily, you too want to bake a cake.
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