Invisible, Not Imaginary

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Invisible disabilities make up 10% of the disabled population yet since they can't be seen, they are easily dismissed as imaginary.

Invisible disabilities include autoimmune disabilities (lupus, rheumatoid arthritis, crohn's disease), chronic pain disabilities (fibromyalgia, temporomandibular joint (TMJ) disorder), dietary disabilities (celiac disease, diabetes, irritable bowel syndrome), psychiatric disabilities (major depression, bipolar disorder, anxiety disorders) and my favorite, neurological disabilities (multiple sclerosis, ADHD, asperger syndrome).

Invisible disabilities are no less debilitating than spina bifida or blindness, but because we aren't alerted to them by a wheel chair or a guide dog, they are taken less seriously. People are accused of making them up.

I hear it often. In fact, I listened to it for the last seven years. There was an abundance of it in the comments of my Friday Wrap-Up (Angry Version). And I constantly hear it from teachers. I am enabling Cam to be the way he is. If I were disciplining him at home he wouldn't need to be disciplined in school. If he would just work up to his potential, there wouldn't be a problem. If I'd quit catering to him and set my foot down he'd quit manipulating everyone. As a parent of a child with an invisible disability, I am often blamed for Cam's difficulties. I am an easy target.

It's devastating to be "forced" to listen to these comments. I know Cam has an invisible disability - just as clearly as I know that spring follows winter - yet when everything seems to start going better, a crisis erupts and Cam and I are blamed.

I understand the frustration of the school and of some of my readers. I really do. I am frustrated too. Cam has gotten to the point where he has completely shut down in class. Homework is a nightmare. Cam's Aspergers and ADHD make even the most simple organizing overwhelming. I understand this, but I can't seem to get his teachers and other adults to understand this.

I am often overwhelmed. All of my hard-learned, carefully researched and professionally-based explanations of the things I know about Cam are perceived as excuses. When I try to relay to others what I've learned, it's viewed as "enabling."

Am I an enabler? No. I know Cam's strengths and weaknesses and I step in and defend him when needed. I am his advocate. This isn't the same as buying beer for an alcoholic or driving the drug addict to her dealers house. The school's stance has been that he should do everything by himself, no matter the struggle, the frustration or the amount of time it takes. This is no different that requiring a child in a wheelchair to participate in a regular PE class, and I can't imagine a single person thinking that was reasonable.

Cam needs a strong advocate. Someone who will stand up for him, be assertive and deal with school issues and personnel in a way that gives him 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 neurological differences.

Unfortunately, his teachers think I'm too involved. They (and probably a handful of my readers) believe I am an enabler. It is simply easier to blame me, or Cam, than it is for those people to think and do things differently.

I have a responsibility to Cam. Unfortunately, in today's school culture that requires accountability for production and quality of work, I am made to feel I shouldn't step in and help, that Cam must somehow find academic success with no assistance, no advocacy, no voice for his needs. I am seen as overprotective. I am made to feel that if I stand up for Cam, my actions are the reason he is having problems.

I struggle to teach Cam the skills he needs to be independent. Why would I work so hard otherwise? It's not fun. I don't get any joy from it. I don't get any personal recognition for the incredible extra efforts it takes to help Cam find academic success and coping skills. There isn't a paycheck involved, in fact - on average - I spend $160/month on medical co-pays related to Cam's disability. No one pats me on the back and tells me to keep up the good work, least of all Cam. He is convinced I am the most evil parent in the world and frequently talks about how wonderful his life will be when he leaves. It is my responsibility to make sure he can leave.

I work diligently to guarantee Cam's ultimate independence and good mental health. I'm not coddling him by smoothing the rocky path while we try to find ways 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 understand why teachers want Cam to be responsible and productive. I do too! But often their solution is detention or failure. This is the easiest, most economical, one-size-fits-all solution that really doesn't fit all students and is often damaging to students with disabilities.

Studies show that countries like Sweden and Japan who 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.

It requires a different way of thinking, and change is hard - if not impossible - in the public school system.

I really should have as much of a voice in Cam's schooling as the school does, and I shouldn't have to be afraid of being labeled the cause of Cam's disability. I didn't parent him into Aspergers and ADHD and I won't be able to parent him out of them either, but given the right tools, I can help teach him the coping mechanisms he needs to be successful.

He may have an invisible disability, but it isn't an imaginary disability.

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