Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Adjusting My Dreams for the Future as an Autism Mom
I pictured the perfect combination of myself and my husband.
Blonde of course. Chubby little cheeks and fingers. Bright blue eyes.
Then I would think about his personality. Feisty and stubborn. Funny of course. All boy.
I pictured a little boy who loved the outdoors. I had visions of riding bikes, catching fish, and jumping in puddles.
I remember telling myself I didn’t care what my little boy does as long as he is happy.
He can become anything he wants. I will support him.
I was going to be the perfect mother, friends. (Don’t we all think that?) I had plans and ideas.
I knew exactly what I was doing. I had read every book and blog. I had this mothering thing down.
But never once during my pregnancy did it ever cross my mind that I would have a child with severe special needs.
I never factored that in. I’m guessing no one does.
You picture and pray for healthy.
The day we brought our son home I knew something was off. He struggled with sleeping, eating and finding contentment.
He wanted to be held constantly yet he was never happy with me holding him.
By 9 months old he was watching cartoons incessantly…and I was scared to death.
Yet, as an infant and toddler he was meeting all of his milestones. Pointing? Check. Waving? Check. Making eye contact? Check.
But still, something wasn’t right.
I felt it in my stomach. At times my worry was more than I could handle as a mother.
My favorite topic of conversation with friends and family was ‘all the reasons why my son was not autistic.’
And, of course, everyone agreed with me.
His dad said he was fine. So did both of our parents.
Even our pediatrician was certain we just had a late bloomer. She assured me that boys developed later. I shouldn’t worry.
I knew though. I felt it. I’ve talked to other parents who have said the exact same thing.
They knew. And no one else believed them. And the weight of that is debilitating.
The day we got his autism diagnosis I felt every emotion you can imagine. Sadness, guilt, fear, relief, desperation. The list goes on.
Suddenly, we were thrust into a new world and my dreams for the future were put to the wayside.
We were part of the autism club.
My whole world became finding the best possible services and help for my son.
I had no idea what our future held. I would Google autism and adulthood and find wonderful stories of genius children.
They called it high-functioning autism….a term that I made sure to say to people. I felt better for some reason.
It’s like I was reassuring myself.
I’d think…this is going to be fine. So what if my boy doesn’t become a doctor or a lawyer. I settled into a normalcy for a few years.
My son was autistic and this was going to be fine. He was high functioning.
As my son aged it became apparent that his autism was severe. And once again I found myself tweaking my hopes and dreams for the future.
Only this time, it seemed more permanent. Even bleaker.
I was no longer planning for college. Instead I was planning a way to pay for my son’s care for the rest of his life.
At age six he was completely nonverbal. He was not potty trained nor did he have a desire to be. He had zero self-care. He still struggled with sleep.
There were moments when he would hit, kick and head butt me. I felt isolated and alone. I felt scared.
And my dreams once again morphed.
I pray that he learns to tie his shoes. I pray that he learns to use the toilet. I pray that he learns to read.
I pray that he makes a friend. I pray that he is happy and that he can tell me so. I pray that he learns to speak.
I pray that I can be the best mother ever to this vulnerable, amazing, innocent little boy.
I pray that I have the courage to always fight for the best care for him.
So, how, as a mother did I make this evolution?
It’s a very interesting question.
It takes time, friend. For me it took 6 long years with many highs and lows. I am human.
Let me be clear I am absolutely in love with my son but I went through the grieving process.
I grieved for the little boy I had dreamed of. I struggled. I cried a lot of tears. I worried about his care after he turned 18.
I worried about him living with me for the rest of his life.
I worried about my worry.
And then I came out the other side.
Throughout my pregnancy my dreams for my son all revolved around happiness.
And - don't worry people - my son is happy.
Every single day is the best day of his life. He is never crabby. He knows no greed. He is loved. He attends an autism kindergarten class. He loves trains and being tickled and swimming.
He spends every waking hour immersed in learning about the railroad. He squeals with delight when I sing to him and make funny sounds.
His life is simple.
And now, when I look into the future I very clearly see our future. Cooper is living with me.
He is happy. He is healthy. He is loved. And I tell myself that is all I can ask for as a mom.
