Autism: A Mother Looks at Diagnosis
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Hard WorkIt's shocking how hard it is to keep a child with autism engaged in all the right ways, especially during the crucial early years. Although Dr. Koegel's interventions are engineered to slip into your day-to-day interactions with your child, the truth is that most kids with autism feel a strong pull away from any kind of engagement back into their own private world, and the energy a parent needs to keep pulling back can be overwhelming.
At the very beginning of our journey, Roberta told us time and time again that we had to keep Andrew engaged as much as possible. I remember losing it. Just losing it. I had a fretful newborn who kept me up at night, and after a long day of caring for both small children and driving Andrew from one therapy to another, I was too exhausted to do anything but prop him in front of the TV or let him retreat into his mysterious world of lining things up and laughing to himself.
My husband was writing on a sitcom that had incredibly long hours. By the time he came home at ten or eleven at night, he was totally exhausted, and even on his rare early nights, he was wiped out. We'd both be collapsed on a sofa, barely able to move, and then we'd hear Andrew off by himself, playing his little self-stimulatory games and murmuring senselessly, and I'd be hit by an overwhelming sense of failure. Concern soon turned to anger I kept thinking it was all Rob's fault, that if he would just go play with Andrew, I wouldn't have to feel so guilty about everything. I had spent the day with the kids wasn't it his turn?
And Rob was thinking the same thing, of course that he'd had a long day and didn't have anything left to give, but here he was feeling guilty, and if I would just get up and work with Andrew, then he wouldn't have to feel so bad.
The truth was that we were both tapped out. Neither of us had the energy to engage our son, and we were resenting each other for it.
That was when we realized it was time to start hiring some extra help.
We're lucky. We can afford to spend money out of our own pocket for stuff like that. We hired an undergraduate named Pete Candela who had worked with Andrew already at UCLA to come every day for an hour or so late in the afternoon or early in the evening, just to play with Andrew and keep him engaged. These few hours improved our lives immeasurably in every possible way.
Regional centers will sometimes help pay for this kind of support, I know, and a lot of people can call on relatives to help, either financially or with the actual work. My sister Nell used to come in the evenings just to play with Andrew and give us a break. Her energy was unbelievable at that point, she didn't have children of her own, so she didn't mind wearing herself out with Andrew. She made up great games and kept Andrew happy and engaged every time she came over.
So we discovered there are alternatives to sitting around and glaring at each other.