The recent holiday season was a bittersweet one. It will be the last one my son and I spend living together. You see, my son, Kenneth, who is 20, has autism.
I applied for a state Medicaid waiver to obtain residential housing for him years ago. Now the waiver has finally come through. I’ve found a family with three other disabled residents who will take in Kenneth full-time. (Although we’ve hit an unexpected snag in the complicated application process, we’re told the paperwork is expected to be final in four to six weeks.)
My son is my heart and my joy. I’ve watched him grow from a sweet, quiet baby into a special young man with a wonderful sense of humor. My life has revolved around him. Now that the moment is finally upon us, I think I underestimated how hard it is going to be to let him go. But let him go I must. He is ready for it, and so am I.
Most of the time, Kenneth’s temperament is good. But one reason I started this separation process is that, at about age 10, Kenneth began having violent outbursts. I’m told this is not unusual in autistic people, especially boys, at the onset of puberty. Visits to a psychiatrist got him medication that helped calm him down. But it couldn’t completely eradicate his temper. He is six-foot-four and more than 200 pounds, and there have been times I’ve feared for my own safety.
Over the years, we’ve had 911 calls because I couldn’t get him to calm down. Sometimes, he would become violent. The police were usually able to talk Kenneth into a less-agitated state. But we did end up in hospital ERs when he became inconsolable.
Now, at 20, with help from a caregiver, a psychiatrist, and his father, Kenneth’s behaviors have improved. But he is still aggressive toward me at times, especially when he doesn’t get his way. He is rarely this way with anyone but me.
Over the years, finding him some sort of residential care was always on my mind. I have felt guilt about letting him go. Could I trust anyone else to care for him properly? But why not? I know other parents of grown disabled children who have let their children leave home into residential care and it’s worked out fine, even among offspring with behavior problems. And it is what typical young adults his age do when they leave the safety of the nest to go to college. I think there is an unrealistic expectation of parents of the disabled that we will care for them forever.
I am no longer young, at age 61. As I look down the road to retirement, I can’t see Kenneth living with me ad infinitum. I crave solitude and independence. Looking back, I see that as his parent, my social life has suffered. I also need to work unfettered as much as possible in order to guarantee my own future.
I will keep in regular contact with Kenneth (he will live just a few miles away) and I’ll have him for some weekends and holidays, as will his dad. I trust the couple who run the home; they seem genuinely concerned about their residents and come highly recommended. Kenneth seems ready to cut the cord as well. He will be living with his peers. He will go to Six Flags and restaurants and bowling. There are computer games at the home, which Kenneth loves to play. And as much as he can, he will become his own person. He will also continue attending high school until he is age 22.
On Thanksgiving Day, Kenneth and I drove around the neighborhood at a leisurely pace and looked at the Christmas lights. We had short conversations about his school and upcoming Christmas plans. When I asked him about going to his new home, he said, “I’m going to move away. I’m going to have fun.”
I think he was giving me permission to let him go. I looked at his face, and he was smiling I took his hand and kissed it gently. He seemed ready for his next journey, and with a little tender sadness, so am I.
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