Soon my two 20-something sons will be “home for the holidays.” Jack for a few weeks from college and Dan for a few days from a group home. Their worlds have broadened in the last few years and when they arrive they will be living on a familiar cusp.
Is this their home? Or their parents’ home?
It all sounds so “normal.” And it would be if Dan, 23, had not taken a nosedive regression at age three-and-a-half and stopped speaking. Still functionally nonverbal, he suffers from severe autism.
Dan also needs one-on-one supervision during most of his waking hours. For years, I thought that a placement for him in a nice community-based group home couldn’t come fast enough. Yet, I was bereft when Dan finally left. (Left, I might add, with bells on the toes inside his size 11 ½ boots.)
Under all kinds of oaths, I’d swear I love my boys equally. But they are so different and so was my reaction to their leaving.
When Jack went to an out-of-town college in 2008 I cried for a few weeks before and after. And that was it. But when Dan’s group home placement came through a year later, I cried for months. Although I live my own full, busy life, there are still days when I feel deeply saddened by the loss of his presence. This did not happen to my husband –who was and is a terrific and involved father. Maybe maternal instincts are different from paternal ones?
Often, I scold myself for being so silly. I can get to Dan’s house in twenty minutes and visit for as long as I like. He comes home for sleepovers at least once a month. When Dan’s here I thrive on doing all the tasks that had wearied me for years: Talking him through his bath, Talking him through dressing. Cooking a breakfast that he might not eat even though he wanted it. Sometimes, I get the feeling that he prefers to be with his buddies in the place we now call “the frat house.”
There is a shameful lack of good “placements” for young adults with autism and Dan was lucky to get one. I didn’t expect the transition to be without bumps – and, indeed, he did have to live temporarily with three sedentary, older men. But Dan sailed through that far better than I did. With sensory assistance, he can type out his feelings. One day he typed for me, “I live on my own now.”
He now lives in a great place with three fun-loving, age-appropriate guys, an energetic live-in house manager, a terrific staff and plenty of after-work and weekend activities. Still, it was new place with a new cast of characters. Often people with autism find change very hard. But Dan kept sailing.
I considered that the reason I was so unhappy when Dan moved out was simply because he was the last kid to go; his departure made our nest empty. Ultimately, I don’t buy that. As a writer I don’t mind having a big near-empty house – and many rooms of my own.
I believe my reaction had a lot more to do with that old bugaboo–guilt. Parents get angry at children who have autism, even though the kids are not to blame for their behaviors. The guilt is enormous – as is the burden of knowing you have tried so many interventions and not found a cure.
The impact of Dan’s leaving on me was comparable to what I’ve heard about the experience of people with amputated limbs. The arm or leg isn’t there anymore. But it feels like it is. Dan doesn’t live with us. But sometimes I can swear I hear him having a temper tantrum in the next room, even though that is an old behavior he has worked hard to eradicate. So what was that noise that took me out of my home office searching for Dan? Was it one of the many seagulls who inhabit our beach town? Or my imagination?
My reaction is also similar to friends who were caretakers for elderly relatives and after they pass away find free time again. In my case even if I wasn’t taking care of Dan, I was organizing the schedule and activities of his caretakers and therapists, communicating with the school, filling his backpack with spare clothes. All until he was 21.
Then suddenly there weren’t any hands-on activities to do for Dan. But my energy level didn’t diminish at the same rate. The adrenalin had to go somewhere and, in my case, it went to grieving even though even though Dan was more alive than ever; his new life so full of fun.
Call it the Autism Empty Nest. As with most things autism, it’s like the real world — and not like it at all. And one size never fits all. Slowly I am learning how to “mother from afar” – and how to embrace the new people in Dan’s new life. I invite not just Dan but his housemates and staff to our family gatherings. We had his birthday party at his house. I have volunteered to be on a parents’ committee at the agency that runs Dan’s house.
So on December 24, Dan will again be home for the holidays – home perhaps to what he thinks of as his parents’ house — for the second year in a row. I know that when the visit is over, Dan will skip out the front door ready to be driven those 20 minutes away to his own “independent” life.
Slowly, I think I am getting used to this.
Barbara Fischkin is an author, journalist, journalism educator and autism advocate. Her books include a work of narrative nonfiction, “Muddy Cup: A Dominican Family Comes of Age in a New America,” and two novels, “Exclusive” and “Confidential Sources.” She also has contributed to the Huffington Post and an autism blog.