When we finally received the diagnosis of PDD-NOS for our son, we thought “this is it! Let’s get him the help he needs!”
Yeah, that didn’t happen.
What followed was the onslaught of information about what that diagnosis meant, what services may or may not be available, and ultimately what wasn’t relevant to our situation.
What we learned early on is that what worked for other kids on the spectrum, may not work for ours. Yet we kept on searching for more information, more understanding.
You see, just having a diagnosis is just the beginning. It’s easy to get too far ahead in terms of what you’d have to look into, what next steps you have to take – and what steps you don’t need to worry about. The hunt for more information had just begun.
Over the years I’ve talked with many parents who have dove in headfirst into various research studies, and followed the same path as we did – and like us – often with little to nothing to show for it.
When we received that diagnosis, we became mission bound, diving into different methodologies, different diets, different therapies – all trying to discover what in the world would work for our kid. And like most autism parents, we did this with little to no knowledge of where even to begin.
We came to terms with the fact that we were stressing ourselves out with all of this information. Our own mental health, and our relationship, was suffering during this search for what to do. Suffice it to say: this effort can take a toll, and often can add unnecessary stress.
We realized in this process that we had to strip away things that weren’t relevant, and focus on what actually made practical sense in our situation. Self-care started to become a major priority, as this journey is a marathon, not a sprint.
We had to give ourselves, and each other, permission to sit out for a moment.
Being able to communicate with each other that you’ve reached a limit, and need to take a break for a few hours or a day, helped immensily. It was at these moments that we learned to help each other the most. Just remember to speak up when need be.
So what happened with all of the information we found online, or all of the resources friends and family gave us over the years?
We discovered much of it was stating the same thing over and over again, and only served to bring around more questions and adding more stress.
Friends and family mean well, but parenting a special needs kid who is autistic will never truly be understood unless you’re living it under the same roof.
We started to take the information given in stride and with appreciation that our friends and family were trying. Our focus went from information seeking about Autism, to focusing our attention more on our son. Who he is, what he’s interested in, and what he likes – or doesn’t like.
Once we made self-care a priority, things changed for the better. Our focus shifted and we learned more about our son.
What we’ve discovered over the years is how amazing he is, just the way he is.
He’s autistic, yes, but so much more. He is mischeivious, fun, understanding, compassionate, and has his own interests and likes and dislikes.
So the only information overload these days we struggle with at all about our son is what any typical parent of a teenager wonders about….
And that, my friends, is another story for another time.