Long before I had ever heard of learning disabilities, attention deficit disorder, language impairments and emotional handicaps, I believed that young children learned what their parents taught them or what their parents modeled for them. By the time my middle son, Jon, was three years old, my confidence in what I was able to teach or model was well on the way to being shattered. His extreme emotional reactions, seemingly endless tantrums and stubborn defiance did not respond to any of the parenting methods my husband and I had learned from our parents. To the casual observer, it was apparent that we were obviously doing everything wrong.
There was no shortage of advice. Our families and friends were more than willing to share their ideas on how we should handle this child. The advice usually centered on how we needed to demand compliance, how he behaved this way only because we allowed him to, and how we were failures as parents. Later, as Jon began nursery school and played with other children, the advice came from the angry parents of children whom Jon had hit, pushed, shoved or bitten. The advice not only criticized us as parents but was also hateful of Jon as well.
I look back and I feel sorry for the first teacher who suggested that Jon be evaluated. Long before she worked up the courage to give us some useful advice, we had endured the advice and criticisms of so many others that we had learned to be instantly defensive. We withdrew from neighborhood play groups, doubted ourselves as parents and even began to blame each other. To my husband, it was obvious that I spoiled this child. To me, it was evident that my husband barely liked this child and that was causing the problems. We were at risk of becoming the dysfunctional family everyone believed we already were.
Beginning a Journey Toward Answers & Support
When Jon was almost four years old, we took him to a psychiatrist. That visit resulted in more useless advice—Jon was oppositional, perhaps he would outgrow it, and we had better learn to live with it.
We continued to try.
When Jon began kindergarten, we predictably endured more of the implications that we were responsible for the way Jon was. Our home life was questioned, our answers doubted, and our child was miserable.
Toward the end of kindergarten during yet another phone call asking what I was going to do about Jon, the teacher suggested we see a therapist. That day I must have been a particularly vulnerable one for me, because I finally admitted that it must be my fault. I called a psychologist that afternoon, and within three days our family had begun what would turn out to be five years of guided trainin
g in behavior modification techniques. We learned that all the typical things we had tried were not bad, just ineffective for this child. We learned to divide the day into a series of strict routines, to structure each segment carefully so that nothing came as a surprise to Jon, and to tackle one behavior at a time. We learned passive restraint techniques, “reward box” incentives, but most importantly, we learned it wasn’t our fault.
Eventually, Jon was evaluated and determined to be severely speech/language impaired, learning disabled, and to have attention deficit disorder. At age eleven he was also identified as emotionally handicapped. Despite the ominous-sounding labels we now had for Jon, I finally felt that I no longer had to defend myself from school staff implications of a dysfunctional home. I became active and visible as a school volunteer to attempt to dispel the lingering notions that I was some type of monstrous mother. I read anything I could get my hands on about Jon’s labels. I found my confidence in myself as a parent again, and I was able to f
orgive all those friends, family members and teachers for not understanding the problem because I had not truly understood either.
When the evaluations were complete and medications were suggested, we dared to believe that perhaps we could “fix” Jon. That hope was short-lived, however, as the first medication caused Jon’s heart to beat erratically. Another accentuated his changeable moods to the point of chaos. A third made him so hyperactive and daring that we feared for his life. And yet another left him so depressed he would spend hours crying. We finally settled on a combination of three different medications that seemed to smooth out the rough edges of his behavior.
Finding More Support & Happiness for Jon
In his elementary years, Jon attended school in a Learning Disabilities Collaborative classroom. Although he remained significantly behind academically, he made steady progress. He enjoyed school and seemed to be happy. He has learned, for the most part, how to bring himself back from the brink of emotional overreaction.
Through the years, we recognized the importance of teaching Jon how to create his own structure. As Jon approached adolescence, his greatest challenges were on the horizon. His social skills are weak, impacted by his language disability, and his first friendships were tentative. As we prepared for the transition to middle school, we were torn between the social advantages of a full inclusion placement and the fear that Jon would again become emotionally overwhelmed by the loss of a strict structure and acts of peers who would not understand the difficulties he faces.
Today, Jon is in his late 30s, diagnosed with 4H Leukodystrophy, also known as POLR3B Leukodystrophy. He has experienced a steady decline of all functions over time. He is functionally blind due to a completely detached retina in his left eye and a repaired detached retina in his right eye. With glasses, he can see a little. Although he was once able to read and spell at a 5th grade level, he struggles to do any of those things now.
He is generally healthy as far as common illnesses are concerned. Jonathan is a large boy and uses a wheelchair and a walker to move around. Neither of his two brothers, Nicholas and Benjamin, is affected with 4H.
Jon has a well-developed sense of humor, with bathroom humor dominating his repertoire. He has always lived with his parents until his recent move to a group home in early 2019. He seems to be adjusting very well. Jon is still verbal and although most of his group-home mates are not, Jon enjoys much attention from the staff. They can get him laughing without much effort and this disposition cheers everyone.
I have learned to accept this is a long-term challenge for me and for Jon. After experiencing so much failure, I marvel at his determination. In so many ways, I’m prouder of what he has accomplished than I ever would have been had he been more “typical.”