As the mother of a disabled child, I was afraid I would end up in the gutter. Literally.
When my special needs son was little, caring for him was difficult, but manageable. Jack couldn’t walk or feed himself. He couldn’t even drink from a cup. His two younger siblings were in need of my attention too, but I could pretty much handle it all without feeling overwhelmed or inept. I was definitely worried about the future, though.
Then one day, I saw a woman rolling around the gutter right outside my apartment building. She didn’t look drunk or broke. But to me, she was the most desperate woman I had ever seen. She was flailing between the parked cars with her fully grown special needs son, who looked close to 200 pounds. It seems he had gone on strike during their walk, and decided to sit. She had been trying to pull him back up, but ended up falling down with him. “Oh my God,” I called out. “Do you need some help?” She tried to smile and assure me that this was not out of the ordinary for her, and she’ll handle it herself, as she always does.
I have other stories about seeing parents in predicaments that scared me. Like the mother in the park who told me her tween son’s condition meant that he routinely tried to climb the bookcases and bolt out the front door into the street. And because his sleep cycle was also affected, he only slept a few hours a day, so she and her husband had to take alternating four-hour shifts to supervise him through the night. Every night. For years. With no end in sight. Her matter-of-fact manner seemed to suggest she had it all under control, but the smell of alcohol on her breath that Saturday morning gave her away.
My son is now 20. Since age 10, he has lived in a wonderful group home a short drive away. I feel like we won the lottery getting him a spot there. He lives with his peers and a round-the-clock team of counselors and therapists who work together to help him with his daily needs. There have been lots of people who judged me for this decision, and also many who respected my choice, but said they just could never live with themselves if they “gave up” their kid.
But the truth is, if you have a child who will never be able to live on their own, your whole parenting game is, in a way, a no-win situation. We raise our kids so that they can be independent. That’s how it’s supposed to work, bottom line. Because one day all parents will be too old and too weak for hands-on parenting, and then eventually, we will all die—hopefully leaving behind grown children who can get along just fine without us.
If you have a child who will never be able to live on their own, your whole parenting game is, in a way, a no-win situation.
A few years back I wrote about my decision to place my son in a home, and many parents emailed me to me say they wished they had that option for their child, and that they were more afraid and desperate than anyone around them could ever understand. So much has to be done to end the stigma of placement for these families, and we also need to create more quality group homes. These aren’t easy tasks, but with autism on the rise, something has to be done. The myth of parents as superheroes is inspiring, but becomes a daunting and seriously dangerous ideal when the physical, emotional and psychological challenges for some parents become too much to bear. If “it takes a village” for the average parent, imagine what it takes for these families.
Sometimes, when dropping my son off at his home after a visit, I think about all the parents out there who aren’t as fortunate as we are. They are trying so hard to keep it together, in large part because society expects them to.
My three kids are getting older now, with one in college, one in high school, and Jack in a place that really suits him. And my husband and I are getting older, too. Soon we’ll come home to an empty nest, knowing without a doubt that this is the way it should be.