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The Day After Your Child's Autism Diagnosis

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son walking from behind

Your child is on the autism spectrum. No matter how you try to prepare, even if you already “know,” going through the diagnosis of your child is hard. What does this mean for my child? How is this going to affect our family? Can we afford what he’s going to need? How do I help him? Am I strong enough?

Twice, I’ve sat on that couch and heard an autism diagnosis and twice I’ve stood right where you are today… wondering what the future holds for my child. My first son was diagnosed in 2003. I was a young mother, scared, exhausted and totally ignorant to this word I had only heard in movies and books. Through tears, I remember asking if he would ever get married, graduate from high school, live a “normal” life. They promised me nothing, patted my back and handed me a packet of information. My husband was silent except for an “it’ll be OK,” but I didn’t believe him.

The next few days can only be described as mourning. I mourned the baseball games I thought he’d never play, the first dates I thought he’d never go on, even the words “I love you” that I might never hear. I was sad and angry and hurting. Self-pity and depression had become my closest companions, but 3-year-olds have a way of reminding you that you aren’t the star of this show!

Although friends tried to comfort me and family tried to help, that little boy was the only one who was able to teach me how to get up and breath again. He needed me. The pity party was over because every day after that was his life! So we worked and we prayed and we played and we lived.

It wasn’t the life that I had “dreamed” of, but it was something more amazing than any generic cereal commercial I was hoping for. Progress was slow, but we celebrated every single milestone. Words weren’t annoying; they were gold. Little things became big things. He was the teacher; I was just along for the ride.

There were still hard days, lots of hard days, but doesn’t every parent have hard days? There were tears, happy and sad… sometimes his and sometimes mine. I started dreaming new dreams… big dreams, and though they were different, they were in no way less. I no longer longed for “normal.” I wanted extraordinary. That was the life he deserved.

Looking back today, I wonder if I should have reacted differently. I wonder if I was a “bad mom” for being sad, for wishing his life could have been “easy,” for wanting “normalcy.” I’m still not sure. I don’t think there is a right or wrong way to accept and digest a diagnosis for your child. We are all just parents who want the best for our kids and are doing the very best we can to give them the life they deserve.

So, Mom and Dad, if it’s the day after diagnosis or the 901st day, I want you to know you’re doing an awesome job. I know it’s scary and confusing. I know it feels like nobody else can possibly understand how this feels. But I promise you aren’t alone. I also promise one day you are going to look up at that baby and realize you are the lucky one because they just make us better than we are. I truly believe our kids were created for more, something bigger than we can imagine, to influence the world around them to see differently, to love deeper and to push us out of our boring and tidy comfort zones.

And if you are wondering how I handled that second diagnosis… not much better. Hey, I never claimed to have this all figured out. But if it makes you feel any better the first kid just got his driver’s permit, so yeah things just got real. Remember that life I was feeling so sorry about? Well now it flashes before my eyes every time I get in the car with him! And I must say… it’s kind of amazing.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 18, 2016
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