All I Really Need to Know
“Based on our observation, we believe your son has autism.”
The echo of those words lingered in the otherwise silent room.
My heart was trying to process what that meant for my son at a frenetic pace, my brain however was reconciling it with all the signs.
Yes, this makes sense now!
The numerous daycares he’s been kicked out of. The delayed and severely flawed speech development. The lack of interest in the same activities as his peer group.
Too many to name really, but it all makes sense.
Now I’ll know the right questions to ask and I should get the answers I need, right? If you are or have raised a child on the spectrum I don’t have to tell you the answer to that question.
It’s been said that when people have near death experiences, they report seeing their life flash before their eyes.
I think it’s similar when you get life changing news but it’s not the life you’ve lived it’s the life you now see. And for me that went going to the darkest places in the furthest corners of my mind.
We do that. In the absence of accurate information, we insert our own version of the truth.
I was seeing a life of round the clock care, a son who would never be independent, live on his own, have a career, love, be loved, marry, have a family.
Our minds can be our own worst enemy. I sat there, numb.
Now the educators, speech pathologists and administrators are explaining to us their collective observations that led them to have this conversation with us. I didn’t hear a word.
Hayden was 4 years old and attending an early childhood program at school in preparation for beginning kindergarten.
I knew there were signs, as a parent you know something is…off.
For my money, that parent’s intuition is much more powerful than any tests that can be run. And now I had more information.
Hayden’s mother and I, armed with the information we had from the school took it to his pediatrician for a “formal” diagnosis. Based on the same observations in multiple different environments we got a diagnosis, although it was anything but “formal.”
“Asperger’s”
Good. Thanks.
Now where is all the information you have to give me about what we do next, how we “treat” him, meds, diets, behavioral therapy, let’s go I’m ready to get started!
Wait, that’s it?
I immersed myself in reading everything I could get my hands on, books, websites and anything else related to the topic.
I wanted answers to the questions that every parent of a child with special needs wants- what’s it going to be like, what’s he going to be able to “do” with his life, what’s my life going to look like?
What I found was…well not those answers. I’m certain there are good books out there, many of them.
Unfortunately, they weren’t the ones I found. What I found was a very sterile, very clinical, very scientific look at autism.
I was looking for answers, not explanations or theories.
Looking back it reminds me of one of my favorite books, All I Really Need to Know I Learned in Kindergarten by Robert Fulghum.
All I really took from those books was one sentence.
I wish I could remember which book it was in so I could give credit where it’s due but it was this:
“Once you’ve met one child with autism, you’ve met…one child with autism.”
That one sentence provided me more comfort and relief than anything else I read.
I was reading, comparing Hayden to others experiences and benchmarks and all that serves to do is create more worry, more fear.
Don’t get me wrong, there is some wonderful research, advice, treatments, counseling, etc. out there. But remember this, there is no one right way.
There is not one path forward. There aren’t answers to our questions because all our kiddos are different. Have different needs. Have different motivations.
It’s not about finding the best plan, it’s about finding the best plan for your child.
When I came to that realization, it allowed me to focus on helping my son, rather than trying to “fix” his autism.
For me it was that realization and letting go of what I thought our life would look like.
I had to mourn the loss of that life, the one you dream about when a dad is told he’s going to have a son, especially after two daughters first! I needed to mourn and move on.
I’m a sports nut. I know I will probably never throw a football, play catch or shoot hoops with Hayden.
As a dad, that was a hard pill to swallow.
Hearing my buddies talk about coaching their son’s teams, watching them play, travelling to their games…it was a lot to give up. But that was my expectation about what life would look like, not Hayden’s.
Letting go of that was very freeing.
What I learned is that we don’t know yet what our life together looks like because it changes daily. And as frustrating as that can be, there is a sense of wonder and joy every day in what today will look like.
Today we might learn all about aircraft carriers, tomorrow could be how bridges are built.
I’ve learned I don’t need answers to questions about tomorrow because if I do my best with him today and the folks in his school continue to do the amazing work they do, and his small circle of friends support him and his family loves him fiercely, we give him the best chance for his tomorrows to be as fulfilling as they can be.
And that’s enough for us.
Written by, David Smith
I am the father to 3 kids and step father to 1. My youngest, Hayden is 13 and is ADHD and autistic. He was diagnosed with Asperger’s at age 4.
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