'He is just my son'

'He is just my son'
By Susan Senator

Nothing is ever what you think it’s going to be. Even if my firstborn son had not been autistic, motherhood was crazy different from anything I had ever experienced or been prepared for. From the moment that my ‘birth plan’ of soft lights, music and foot massage was scrapped in favour of a strong epidural, life with Nat (photo left) was a wild ride.

When I think about myself in those early days, 21 years ago, I feel maternal and protective. I was so scared, before I even knew about the autism; a gauzy gray fear was wrapped around everything I experienced as a new mom. I think I was sensing autism, almost from the very beginning. I felt it when I looked at Nat, and it
just kind of seemed like he would be content without me, like he didn’t need me. His smile was always inward. And very quickly, as the developmental phases unfolded mostly normally over the months, I learned what it was like to be plagued with self-doubt. I felt something was wrong, but nobody else did. No one believed me.

Nat’s diagnosis marked a huge change in our lives, a huge change in me. It wasn’t just the focus it gave me, of needing to learn and learn fast; it was also the awareness that I had been right. Little scared new mother me, imagine that! It turned out I had a mother’s instinct par excellence!

If I were to give the young me any pearls of wisdom gleaned along the way, I would start with this lesson about intuition. I would say, “Trust your gut; you know your child best.” The sooner I realized that I did know about Nat, the better I felt. The stronger I felt. I think that we need to feel strong as a first step towards dealing with autism. Strength breeds clarity, and from clarity comes vision, perspective.

Getting clear about what is around you marks the early days post-diagnosis, but there will always be the need to focus and understand, even when your child is older. The important thing is to know your kid, and then figure out what’s important—to you and your family.

Early on, I knew that I wanted to be able to take family vacations the way I had with my family growing up. I did not want autism to stop that. And yet, it was so hard taking Nat to new places that I almost did give up the desire. Until one night, just before Thanksgiving, when I grumbled that there were no books that could
help someone like Nat get through the holiday.

“Why don’t you make it yourself?” my husband Ned asked, making it seem simple and obvious. Making me feel like I could do it. And so I did, cutting up family pictures and sticking them together to flimsy pages, telling the story of what Nat’s Thanksgiving would be like, and showing him the familiar faces he would see.

And Nat was delighted with it. This type of “Nat Book” became our first strategy for taking Nat to new events. It was a successful strategy both for Nat and for me, because it strengthened my conviction that I did know what to do.

Over the years Ned and I developed this kind of pattern, where we would talk together (grumble and grouse) about a problem we needed to solve, and together we would come up with some kind of solution. And later on, we would look back on the problem and it would be part of our “couple culture,” a phrase I coined for our history together. There are so many old Nat stories we laugh about now, simply because we survived them. Like the time I caught him carrying poop from one toilet to another, simply because the first toilet was not working. “Ah, good times,” my husband will say sarcastically, and we’ll laugh. Laughing makes the event into something contained, shared and safe. It also makes you feel like you have a good
life, after all. And who is to say you don’t?

I did not learn the most important lesson about being Nat’s mom until he was in his early teens. We were sitting on the living room couch together and he was being horrible. He was loudly and hysterically fake-laughing. He had been doing this for months. We could not ever get him to stop. But in that moment, that late afternoon, I kind of gave up trying. I just started poking him and tickling him, saying, “What’s so funny, you? Huh?”

And suddenly we were laughing together. Real laughter. This struck me to my core. I think that any remaining shreds of old fear fell away then, as I realized the most important thing of all: Nat is just a kid. Not a creature,
not a disorder, not a freak of nature.

He is just my son and that is that. Knowing that, feeling that, is the secret of making peace with autism.

Susan Senator is the author of Making Peace with Autism and The Autism Mom’s Survival Guide. She lives in Boston. Follow her at http://susansenator.com/blog. Here's a moving recent piece about explaining autism to her son. Photo by Jared Leeds.