One Mother’s Perspective

The Early Questions

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 were 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 neither I nor my husband 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 quite willing to share their ideas on how we should be handling this child. Usually the advice centered on how we needed to demand compliance, on how he behaved this way only because we allowed him to, and on 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, we had learned to be instantly defensive, to not attempt to explain how we had tried, and to regard advice as hate for our child. We withdrew from neighborhood play groups, and while enduring Jon’s behaviors, we doubted ourselves as parents and 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 risking becoming the dysfunctional family everyone seemed to believe we were.

Beginning a Journey Toward Answers & Support

When Jon was almost four years old, we took him to a psychiatrist. Never having learned of other potential categories, we were afraid that Jon was mentally ill. That one-day 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 somehow responsible for the way Jon was. Our home life was questioned, our answers doubted, and our child was miserably unhappy. Toward the end of the kindergarten year, after having yet another of those phone calls asking what I was going to do about Jon and knowing I had nothing left to try, the teacher suggested we see a therapist. That day I must have been a particularly vulnerable one for me, because in spite of the fact that whenever that had been suggested in the past, it followed questions about some hidden evil in our home life, I finally admitted that it must be my fault. I call a psychologist that afternoon, and within three days our family had begun what would turn out to be five years of guided training 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 was he also identified as emotionally handicapped, I guess because by then it was obvious that even though we could learn to manage him, we were not going to “cure” him. 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 forgive all those friends, family members and teachers for not understanding the problem because I, too, had not understood. Once 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 medication accentuated his changeable moods to the point of chaos, another medication made him so hyperactive and daring that we feared for his life, and another left him so depressed, he would spend hours for hours on end 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 what 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 least 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. Jon has two brothers – Nicholas and Benjamin – neither one 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 his laughing without much effort and this disposition cheers everyone.

I have learned to accept that 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”.