I have three sons, two of whom are living happily in the New York area with good jobs and significant others. Lately, I've noticed that when I see a message from one of them, my heart leaps like I've sighted a rock star. I get tongue-tied. I want to be interesting to them and fun. But still, I see their eyes wandering around as other really interesting messages erupt like mini fireworks on their screen. I know they love me but I also know that I am now an obligation as well. And that is the goal. Our grown children are supposed to be able to live on their own, after all, without Mom.
Independence looks different in my profoundly autistic son. He lives away from me in a group home with four other men and two staff, 24/7. The independence I look for in Nat is dressing appropriately for the weather and the occasion, keeping himself clean and healthy, and figuring out how to get along with the others in his space. I want but don't expect Nat to offer me any information about how he feels or what is bothering him. His staff and I have to do that for him. For parents like me whose loved ones are profoundly autistic, you never stop looking for that other shoe to drop right on your head.
Recently, I received a call from my adult autistic son's day program in the middle of the day, and as always, my stomach dropped. Even though Nat has been feeling calm and apparently content in all aspects of his life, I have learned that you never know. Even during Nat's best days there are still things that will knock him off his center and upset him, and maybe bring on extreme self-aggression. "Oh, Nat's fine," the administrator told me. "He just seems kind of out of sorts. And he's saying, 'Call Mom.'"
I nearly fainted with relief and joy. For one thing, selfishly, I was so thrilled to be the one he chose to call for a bad day. But the other reason for my excitement was that in asking to call me, Nat had moved to a new level of independence (ironically). He was advocating for himself. He was feeling badly, and he thought of a way to help himself. That is very new for Nat.
Perhaps best of all, I could guess what was bothering him: he was uncertain about our upcoming Passover Seder. We had only decided last minute to do a big extended family virtual Seder, so I had not had many opportunities to describe what it would be like, who would be there, and what we would eat—Nat's Holy Triumvirate of favorite information. I swung into action, feeling like a superhero.
"So Nat," I said, "Are you thinking about the Seder tonight?"
"Yes," he replied quietly.
We talked about it. I told him we would have chicken and potato latkes, sing the Passover songs, and see the family on the computer screen. I would stop after each new bit of information and check in with him. I could feel his voice becoming steadier as his anxiety dissolved.
Independence. Advocacy. Self-Determination. These are the watchwords of the disability community, the underlying goals of the individualized education plan, and the anxious dream of every parent. We have our children, and although we love taking care of them, our aim as parents is to be able to let our children go. We have to step away and feel our hearts break as they grow up. Even though we spent so much of their lives exhausted while we toiled for them, agonized over their health, and gave up on ever being well-rested again, it hurts so much when they really don't depend on us to survive.
What it takes to make that happen is different for everyone. However, the latest autism research emphasizes “independence over perfection” in their profoundly autistic loved ones’ education. Education must, therefore, be “meaningful to the individual,” said autism researcher Peter Gerhardt at a conference I recently attended.
“We’re the biggest block in the lives of people with profound autism because we only use a deficit-based model," Gerhardt said. "‘Oh, he can’t,’ we say, so we don’t teach it, so he doesn’t. It’s a self-fulfilling prophecy.”
Instead of spending days or weeks trying to teach someone to tie their shoes, just get them the slip-ons. The same goes for the arduous and dubiously useful task of asking someone like Nat to count change, or identify coins. Teach him instead how to use a credit card responsibly. In preparing for adulthood in this confusing and complex world, figure out the shortcuts and don’t waste any more time. At any age. The younger, the better. And don’t worry about what’s “normal.” Worry about building independence.
Gerhardt's words came back to me while I thought about Nat calling me for help. I knew that we had done right over the years, emphasizing with those very words what to do. I always kept the message simple: "When you feel sad or scared, you can call Mom. And I will help you."
I felt tethered to a big balloon for the rest of the afternoon. I was back. "Mom" was back!
The virtual Seder was a success. Nat and I both got to see the extended family, his two brothers, Max and Ben. And, of course, I was all aflutter, seeing all three of my rock-star sons.
But being 61, I have to admit that I was also really happy when the whole thing was over, and I could just shut the computer and take a nap on the couch. The stolen nap is the real reward for everyone, especially the most independent of adults.
My Autistic Son Asked to "Call Mom"
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23.04.2024
I have three sons, two of whom are living happily in the New York area with good jobs and significant others. Lately, I've noticed that when I see a message from one of them, my heart leaps like I've sighted a rock star. I get tongue-tied. I want to be interesting to them and fun. But still, I see their eyes wandering around as other really interesting messages erupt like mini fireworks on their screen. I know they love me but I also know that I am now an obligation as well. And that is the goal. Our grown children are supposed to be able to live on their own, after all, without Mom.
Independence looks different in my profoundly autistic son. He lives away from me in a group home with four other men and two staff, 24/7. The independence I look for in Nat is dressing appropriately for the weather and the occasion, keeping himself clean and healthy, and figuring out how to get along with the others in his space. I want but don't expect Nat to offer me any information about how he feels or what is bothering him. His staff and I have to do that for him. For parents like me whose loved ones are profoundly autistic, you never stop looking for that other shoe to drop right on your head.
Recently, I received a call from my adult autistic son's day program in the middle of the day, and as always, my stomach dropped. Even though Nat........
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