A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON ELEVEN: Keeping a family together

OBJECTIVE: Discovering a way to spend time with your partner

Statistics tell a story that the divorce rate in America is high. So what could it be for a family with a child with special needs? Especially a disability that is pervasive, that has constant social and communication implications? I am afraid to think. How tempting it might be to just leave and walk away. It’s been done, many times.

We all could think:
“Hey, this isn’t what I bargained for when we got married.”
“We never have time together.”
“We go to bed at night and worry.”
“We have lost each other.”
“It’s your fault; you have the weird uncle who never talks…”
“I can’t take it anymore.”

We are not saints. We are human. We get angry, sad, frustrated, tense, lonely, scared. We are not the same people we were when we “fell in love” or when we married or partnered. No one is. But especially no one who has a child on the autism spectrum. This disability is surely more than any of us ever bargained for in our fantasies of family life.

Keeping a marriage together with “normal” stress is tough: children in general, money worries, aging parents, extended family problems, exorbitant car repairs and college bills, etc. I would venture that the very same qualities that keep “typical” families together are the ones that keep a family with Aspergers/autism together.

There is no magic, just hard work and commitment. And most of all communication that allows each partner the ability to listen and the opportunity to speak. My spouse is very tolerant. He knows to give me space. He knows we can cry together but usually don’t. Our grieving cycles don’t usually coincide. We have learned and respect the fact that we do not grieve at the same time or in the same way. I cannot expect his sadness to mirror mine at the same time. We are on separate “worry plans.” I tend to worry all the time. He worries when the issue is right up close. It is better this way. When one of us is stronger, the other can pull away for a bit.

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A Confession:

At first, when our son was a pre-schooler and through much of elementary school, I took on the networking, the conferences, and the school meetings. I worked part-time, mostly at night, so I had the availability. When the transition to junior high approached, I realized: “I can’t do this anymore.”

But deep inside what I realized was this: I had shut my husband out. I was the self-made martyr on a mission to learn all I could and shoulder every task associated with my child’s education. Don’t let this happen to you.

Suggestions:

Finally, I have learned that it is too easy to put a marital relationship on the back burner. A child with a special need – or a child in general – can be a good excuse. Nonetheless, that pot simmering away on the back burner might just get depleted and burn right down to the bottom. Before that happens, move the relationship to a front burner. You don’t have to turn the heat on “high.” Simmering on a front burner works too, as long as you keep an eye on that pot.

ASSIGNMENT:

Make a “date” with your partner and limit the time you spend talking about the children to 15-20 minutes at most, right at the beginning. Check your watch and monitor each other the rest of the “date”.