Reflections from Jim Sturms, parent
It is advice, a regret, and a thankful for what I now have.
Find your Inner Ring
Before Carter was born, we had a great circle of close friends that were the backbone of our social life – parties, weekend trips, recreational sports, dinners, etc.
We saw these people every month or even more frequently. They were our “inner ring” of social support.
Then we started having kids and the circle started to break apart into the “With Kids” and “No Kids” rings. We still saw everyone, but the folks with kids stayed closer to each other because we were all doing “people with babies” things. Our inner ring naturally shifted to the “with kids” subset and grew naturally from the parents we met at preschools and the like. The “no kids” people moved to an outer ring – our lives didn’t connect as often. A natural part of the transition to family life.
As the babies grew into little kids and Carter’s autism emerged, our inner ring started to break apart again. At two or three years old, the other kids didn’t notice or care that Carter was different. At three or four years old, the kids did start to notice and it became an issue that pushed our inner ring away. Some close friends with an incredibly sweet child just couldn’t find a way to play with Carter without it ruining their son’s good time. He asked his parents why Carter was the way he was and upon hearing the answer that “play” was something hard for Carter to figure out he dedicated himself to trying “really hard” to be Carter’s friend – what a sweet kid!
Alas, he was/is a great kid, but a kid nonetheless. It was too much to ask of a kid to accommodate Carter’s behaviors on a frequent basis. The kid part won out and he hasn’t seen Carter in years. Other friends and activities swept away our inner ring of “with kids” leaving us with a very small inner ring: me, Susan and Carter. Even extended family was pushed out of the inner ring due to distance, their own kids, and busy lives that don’t mesh well with Carter’s life. Unlike the “having kids” transition in our lives, there was no natural new source of new people for our inner ring after the “autism diagnosis” transition in our lives – our neighborhood, preschool, and church were not chock-a-block with autistic kids and families to find replacements for our lost inner ring.
A regret: we stayed in our three person inner ring way too long. Years went by with Susan and I taking turns giving each other a break and only getting outside support or social interaction from the now outer rings of people in our lives. Way too infrequent to be sustainable. I look back and describe our family behavior as “holding our breath” waiting for things to get better. Carter’s autism and its impact on our inner ring were not going to just “get better”. We were waiting for something that was not coming. This ended up in a long slow decline in happiness. In our health, in our marriage, in our relationships with our families, and everything else. It was clearly not sustainable.
We turned things around by finding our new inner ring. We had to look somewhere else. We had to find new ways different from our friends and family with typically developing kids. We found the Children’s Hospital support group for parents of kids with high-impact autism and found a group of parents and kids that looked a lot more like our family. Unlike families with typically developing kids, these families shared a common bond with us. Like any other group of people, you don’t hit it off with everyone, but we were now kissing frogs that had some hope of turning into a prince.
Katrina, Jace and Arthur are our princes. We bonded over the common life experiences and found out we had a lot more in common, e.g. the love of a good glass of red wine after a long week of work and home struggles. At long last, we found our inner ring.
My advice: don’t wait, don’t tough it out, and don’t follow the same social life patterns as parents of typically developing kids if that doesn’t work for your family and your kid. Find your inner ring of people and support. You cannot hold your breath forever.
Thank you to everyone who shared advice and their perspective!