Dreams Don’t Die, They Change

We all remember that day. The visit, the phone call, or the letter. And you hear or read those words: “Your child is on the autism spectrum.”

I know I will never forget.

I can still hear the Dr. saying, “We can go two different routes here. We can give the diagnosis of PDD/NOS or Autism.”

I think he was truly trying to spare us that ominous word. I voted for Autism. I knew enough to know that the diagnosis of autism was our ticket to services.

See, this all happened 20 years ago, before there was easy access to the internet. When ABA was just starting to be mentioned. When services and resources for autism were scarce.

I remember my drive home from Children’s Hospital. I didn’t cry, but my mind was racing.

I had been given suggestions on what to do, where to go, phone calls to make. Jim was in Phoenix for work, so I called him and we chatted across the miles for just a few minutes.

The cliché phrases were shared. We knew this was coming. We will be ok. Alex will be ok. He’s still our sweet, sweet boy.

Then I called my mom and she immediately broke down. For me. For Jim. For Hannah. For Alex. For the unknown. For the hard road she knew we would have to navigate.

Again, the above comments were used to reassure her.

So there we were, we each had master’s in our field, but we were prepared parents without much information to go on. Things were very different in the world of autism then. We weren’t sure which direction to turn. We were feeling loss and uncertainty. But also incredibly relieved to have the diagnosis on paper.

It was a little strange because nothing really changed.

He was already in Early Intervention through our School District for his previously diagnosed communication delay. That big yellow bus had been stopping by our house for a year already. Swallowing up our beautiful blond three year old.

Jim and I took this time to talk and strategize so to speak.

How are you feeling?

What are you thinking?

Are you ok? This is big.

What does this mean?

As many can imagine, these types of revelations are quite surreal when you go through them. When you plan your life out it usually matches closely with that of your friends.

Marriage. Kids. Pre School. Soccer. Scouts. And on and on. That timeline you have in your mind about what your kids will do and when. The interests they will take up, whether it’s sports, theatre, debate, dance, singing, etc.

As Jim and I discussed the fork in the road we had just reached, we realized many things.

Alex was still Alex.

That didn’t change.

Our daughter Hannah was still Hannah.

Our family was still our amazing unit of four.

I do remember Jim and I talking about the changes that were before us. Not a sad discussion, just realizations of a few things. Jim wouldn’t ever be a Little League coach. He would most likely not be taking Alex to Illinois football and basketball games in later years.

Probably no marriage or children.

No driving.

Maybe never live independently.

This was all just fine. Alex would show us the way he would go and we were happy to follow.

That became our journey. We would let Alex lead the way.

We didn’t know what was ahead but we knew it would be beautiful because Alex was the sweetest little boy. Pure and innocent. No malice. In a world of his own that we were hoping and praying he could emerge from.

So we began to change our plans. Our dreams. Our assumptions.

Life was taking a different course than that pre-made plan we had. We didn’t know where it would lead but we were certain it would be ok. More than okay.

It would be amazing, because we were all on the same path. All together on the journey that this thing called autism would take us.

It was then and there that we agreed, dreams don’t die. They just change.

Written by, Amy Schlueter

Amy Schlueter and her husband Jim are parents to Hannah(25) and Alex(24, ASD). She spends her time helping Alex navigate the world of young adults with special needs snd cultivating his unique talent as an artist. She has come to love sharing her story as a mom of an older child in the autism spectrum. She, Jim, and Alex live on West Lake Okoboji in NW Iowa. Please visit www.alextheartist.com to see Alex’s collection of beautiful work.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.