Dynamic Mom asked me if I would relate my experience about feelings of isolation. For those of you who don’t know me, I’m the mother of Chuck, a 20 year old who was diagnosed at the age of two with a multitude of disorders and disabilities (behavioral, physical and cognitive) and a grim prognosis for the future, but who turned out to be a normal kid, and even graduated as an honor student.
Chuck is an only child. When he was born, no one we knew had little kids, and we had no one to compare him with. We lived in the middle of nowhere, and had no neighbors within walking distance. I always thought I could do whatever I set my mind to, but within weeks of having Chuck I had the feeling that motherhood was something I wouldn’t be successful at.
Although it took about two years to get any diagnosis on him, I knew something wasn’t right within a few weeks. I really thought the problem was that I was just inept at mothering. It was hard to accept that something as basic as being a mom, which should come naturally to any woman, was the one thing that made me feel like a complete failure. I was thrown out of restaurants, play yards, birthday parties, department stores, and once a library because of Chuck’s behavior. People stared at me everywhere I went as if to say, “Can’t you control him?” I’d look back as to say, “If I could, don’t you think I would?”
I was married to Chuck’s father until Chuck was four, but even during the marriage I felt like we were dysfunctional. We couldn’t do much as a family. One of us would go out (shopping, out with friends, errands) while the other stayed home to watch Chuck. It was just too stressful to take him with us. When our marriage fell apart, I moved back near my family, but I was afraid to take Chuck to anyone’s house. The minute you put him down, he was into everything, and very destructive. He broke everything from knick knacks to refrigerators to VCRs to computer keyboards to windows. (His first complete sentence was “You broke it” at age four.) In public, he’d walk by other kids and smack them with no provocation. I was persona non grata even among my best friends and relatives. The first few years of his school, an aide, assigned only to him, had to be hired for any time he was in class, pre-school or after-care. At home, I had to install combination locks on the top of all the doors leading to outside to keep him from escaping when I fell asleep.
Chuck had a private nanny until he was four, as no day care was able to handle him. I took seven years off work to be with him, from age four to age 11. When he wasn’t in class, he was with me, and I volunteered several times a week at his school. My initial feelings of isolation morphed into what came to be our theme song, You and Me Against the World by Helen Reddy. We had an unusual relationship that wasn’t typical of mother and child. We were more like teammates or contemporaries. He was my constant companion. Even when he seemingly didn’t understand or respond to anything I said, I tried to treat him like an intellectual equal with a stake in his own future. I couldn’t raise him in a conventional way because he didn’t respond to a conventional world. I endured a lot of raised eyebrows for the way I was raising him, but I just developed a thick skin and convinced myself that I was doing the best I could.
It took years of testing, therapy, behavior modification, counseling (for both of us) and yes, medication, to be able to bring him places without disaster. It took years after that for him to assimilate into the outside world. I didn’t just feel alone; I was alone. Alone with Chuck. And to this day, that is one of my favorite places to be.
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