Actually, I have been his father and dad for over ten years.
But this past week, our family received a diagnosis that our son has autism. So now we are a family with an autistic child who happens to have Down Syndrome. Or we have a child who just happens to have both Down Syndrome and autism.
Or we have a child whose name is Malcolm who chooses not to be defined by terms, so we shouldn’t define him with labels or a diagnosis.
I like that last one the best.
Maybe what we received this past week is a huge clue and more answers than we had in how to best approach helping, nurturing, communicating with, and advocating for Malcolm.
One of the greatest gifts that someone can give to another is an unabashed and honest view of the world that the other did not know through another set of eyes and filters.
If you are around Malcolm, you might immediately sense his acute ability to be in the present time. He is not consumed with what happened in the past or what might happen in the future. He is totally grounded in the now. I envy that. And he is very open with his view of the world and how he sees things.
But there were some behaviors that his mother and I could not really understand under the scope of someone who has Down Syndrome. So we explored. We questioned. We wrestled. We asked for help.
And we found out something.
I would be untruthful if I did not say that I am still a little in surreal shock. But I would also not be truthful if I did not say that there is a lot of relief. DS-ASD is very real. DS-ASD is Down Syndrome – Autism Spectrum Disorder.
I feel like I just got to know my kid a little better, and I think we got another clue in how he views the world and filters what he actualizes.
He’s still Malcolm.
Think of it this way: we just got handed the actual prescription of another lens that he uses to sense his world. A better idea of what might be happening. And a better idea of how we might be able to help him make sure that he is as comfortable in this world as he can be.
It’s like we found the “bright” setting for the headlights while driving and we can see a little more of the road, but more of the surrounding area. The more we see, the more we know is around us.
So what do we do as parents? More of the same in many respects. We love him actively. We remove obstacles when we can and help him overcome his own obstacles. We research and be inquisitive. We explore avenues that may hold keys to helping him.
And we advocate like any parent would for his or her own child.
This kid did not change because of a diagnosis. He still wants to get doughnuts, swim at the Y, go to West Forsyth to see his favorite people, pet his dog, watch his movies, play basketball at weird hours of the day and night, and ask for a hug.
With more aware parents.