Enabling Our Children
by Deborah Thorpe
I hear it everyday. I belong to a parent support group for children with learning disabilities and ADHD, one of the largest Internet listserv groups for parent support for these disabilities. There seems to be a constant, recurring topic among our group: "The teacher says I am enabling him to be the way he is" or "The teacher says if we gave him more discipline he'd be fine." Parents of children with invisible disabilities are constantly being blamed for their child's difficulties. We are easy targets.
What is the problem here? It is devastating for a parent to hear this. We know our child has an invisible disability, we have spent many hours researching the problem and finding doctors to diagnose and explain the problem and then trying to explain it to the school in hopes of receiving accommodations and support. Just when everything seems smooth, a crisis erupts and the parent(s) and child are blamed. I received a note in big red angry letters from my son's teacher one day that read, "If he would only do the work there would be no problem!"
I understood her frustration. I was frustrated and angry too. My son, Nick, had shut down in writing anything. Homework was a nightmare that took forever. His psychologist was able to pinpoint perfectionism as the cause. One of his learning disabilities is dysgraphia, the inability to produce handwriting legibly or in any form. By fifth grade he became aware that he didn't write the way the other kids wrote. For him, handwriting was difficult work, his writing looked babyish, it took him forever, his hand cramped. He knew he didn't measure up.
The psychologist said it was better for his ego to not produce anything than to produce and look foolish or even fail. I understood that it would take a lot of work to remove him from this cycle, that we needed to focus on what he could do and what he did well. The focus on writing should probably be ignored for now. He didn't need to fail in an area of disability in order to get him to "see the light" and produce.
We, his parents understood, but could I get the teacher to understand this? Sadly, it wasn't possible as our relationship didn't have the kind of teamwork needed for us to work together for his success. Earlier in the year she had called me in for what she termed "a woman to woman talk" and accused me of being an enabler and assured me that it was my fault that Nick had problems. She said he needed stricter discipline and he needed me to stay out of everything involving his schooling.
I was simply shocked. All my hard-learned, carefully researched and professionally-based explanations of the things I had learned about my son were perceived as excuses. The facts I tried to teach were viewed as "enabling" and making excuses for my son's deficits when in fact I had attempted to educate someone with very little knowledge of his disabilities so she could be a better teacher for him.
I was so taken by surprise that I cried and cried in front of her. I was humiliated and started questioning every incident that had brought me to this terrible place. For days I went around in a daze, could think of nothing else. Had I really caused my child's problems? Her uneducated and unreasoning comments flooded me with a disabling self-doubt.
It was a relief to talk to my son's psychologist about this. Was I an enabler? "No", she said, certainly not in the negative sense of the word. I knew his strengths and weaknesses and I would step in and defend him when needed, but this was not the same as a negative type of enabling which is associated with alcoholism, drug abuse and over-dependency and prevents a person from overcoming the challenges he faces. A parent can become desperate and afraid when their child isn't succeeding with school but the help I gave my son like letting him dictate to me were not what caused his perfectionism. I knew dictation was a legitimate accommodation for children with dysgraphia, but the school's stance was he should do everything by himself, no matter the struggle, the frustration or the amount of time it took. This is equivalent to a child in a wheelchair participating in a regular PE class. It's unthinkable. If that same child were in an adapted PE class, it would be fair, just as it is fair to allow a child with dysgraphia access to a computer or typewriter or even a scribe who will take notes for him.
A child with invisible disabilities needs a strong advocate who will stand up for him, be assertive and deal with school issues and personnel in ways that allow the child an equal opportunity to become a successful student, a student who learns what his mind is capable of learning rather than being held back by his physical and/or mental differences. Unfortunately, school personnel often think the parent is too involved with the child's needs or has become an enabler. For many school personnel, it is simply easier to blame the parent or the child than to do things differently.
A friend who recently received her Ph.D. studied children with juvenile rheumatoid arthritis and found in her research that children with chronic illnesses NEED an "enabler". This enabler should be someone who will make sure the child gets what he needs, who will protect him when necessary. Without this vital person, the course of his disease is much worse and the quality of his life is poor. It's interesting to see that research is available showing how necessary it is for children with visible disabilities to have someone speak up for them and to enable them to do well, yet school staff continue to label "enablers" for the children with invisible disabilities as the reason for the children's problems.
As a parent of a child with invisible disabilities, I feel that we must become that vital person. However, in today's school culture, because our children have an invisible disability that is tied to production or quality of work or to responsibility instead of gnarled hands and wheelchairs, we parents are made to feel we should not step in and help, that our children must somehow find academic success with no assistance, no advocacy, no voice for their needs. We are seen as overprotective, the opposite of that other nasty parent label that schools frequently use which is "uninvolved". We are made to feel that if we stand up for our child, our actions are the reason he is having problems.
Parents struggle so much to get these children to become independent. Why would we be doing so much work otherwise? It is certainly not fun; I get no joy from it. It is costly providing therapy that the school didn't see as necessary. I certainly get no personal recognition for the incredible extra efforts it takes to help my child find his academic successes and compensatory coping skills. No one pats me on the back and tells me to keep up the good work. All that doesn't matter though, as my happiest day won't be having a dependent grown-up child living with me. I am working myself heart and soul to guarantee my child's ultimate independence and good mental health. I don't believe I'm coddling him by smoothing the rocky path in order to help him and his teachers learn to manage the obstacles. I am making sure the playing field is level so that he'll WANT to play and not give up completely in discouragement.
I see that day coming. For the past two years he has been in a private school that allowed him to completely ignore his writing for the first year and to focus on his strengths. His writing requirements were fulfilled by writing and drawing comic books, something he is good at and enjoys. We spent a year focusing on things he enjoyed and did well. He entered a Lego competition and had his artwork displayed in an art show and at a local coffee shop. He became interested in photography. We also taught him keyboarding, something his previous school should have insisted he learn and use at all times but didn't.
This year he is doing more writing including a science research paper. There is no complaining, no struggling to get him to work. In fact, he passed up an invitation to a friend's house so he could work on the paper which was coming due. Writing will probably never be his favorite thing to do, but it is vast progress beyond his almost-suicidal state when his previous teacher told him he wouldn't graduate from a drug abuse resistance program co-taught by local police because he hadn't filled out his workbook completely. Then she blamed the teaching officer who had no idea my son had a learning disability or was dysgraphic. When informed, as she should have been by the teacher, the officer bent over backwards to be accommodating and let him finish up the workbook over the weekend. He was able to graduate, though by that time, it held no meaning for him.
I understand why teachers want our children to be responsible, productive people, but often their solution is detention or failure. This is an easy, economical, one-size-fits-all solution and unfortunately does not fit all students and is often damaging to students with disabilities. Studies have been done showing that countries like Sweden and Japan that show juvenile offenders care and nurturing have a much lower rate of recidivism than countries who use humiliation and punishment. Schools that show children care and nurturing also produce far less angry students, less dropouts and more successes than schools that dole out punishment or detention. I should know, my son has been in both types and the former is where he's had happiness and success and the latter is where he had nausea and diarrhea everyday before school during his 5th grade year.
Parents must have as much of a voice in their child's schooling as does the school and parents should not have to be afraid of being labeled as the cause of their child's problem. I had thought I was the only one to whom this had happened and I was ashamed and humiliated until I understood that I was right. Now I am angry and upset that it can happen and that it does happen to many other parents nationwide who are working just as hard as I am for our children's independence and academic success.
Enabling, in the positive sense of the word, can be a good thing for our children.