The Hidden Disability: The Story of One Child’s Struggle at School – Chapter 1
This is an article I’ve wanted to write for awhile. But like anything in life that means a lot to me, it was going to require time and focus. And I didn’t want to half-ass it either. Nor do I think I can remotely sum it up in one post.
In a world that goes a hundred miles an hour, something like this, which touches on so many levels: emotional, physical, spiritual, mental, needs it’s own space-time continuum to be done right. At least if I want it to truly benefit someone else.
Just maybe out there somewhere, like me, someone is seeking answers.
It’s a story that is complex and also not complete. And here as I write, I find it is hard to begin. After all, it’s nothing insignificant. It’s only my son’s (and consequently his family’s) struggle to overcome “disabilities” that are not so common, and not so easily discovered.
It’s the constant struggle for your child at school without any obvious reason as to why, because he’s so incredibly bright. It’s a story that boils down to the meaning of little known words like dysgraphia and vision therapy.
It’s battling the judgments of those who just feel he’s not really trying, when as a parent you know he really is trying and for some reason it’s harder for him than other kids. Your heart knows this truth, even when your logic cannot put together yet just why it’s true. It’s the episodes of daydreaming, which we find later is caused by the brain using so much energy to try to process language that it literally “blue screens” and switches off to something more artistic.
It’s knowing your son has been made fun of by teachers and students alike. That there are teachers in this world who believe embarrassing a 1st grader through fear is a good way to modify their behavior towards a more desired result. It’s knowing that the same teacher, could have played a different role and could have helped you discover an actual medical health issue sooner.
It’s your heart breaking when your gifted 6 year old with the high IQ comes home and tells you he’s too dumb for school, please don’t make him go back. Or statements like, “You know Mommy, it’s weird. I was the only one who made 100 on the test at school today. But that can’t be right, because I’m not the smart kid in the class. Maybe they just didn’t feel well.”
It’s dealing with the aftermath when your “uncooperative” child stops dead in his tracks during a test and refuses to go any further and answer the questions, because they “don’t make sense.” “But Mommy. Birds do not not actually sit on branches. They stand on their feet and use their feet to grip the branch. If they were to sit, they’d fall off the branch, so none of the answers can be right! If I picked a wrong answer, it’d be lying!”
It’s telling your son, “I’m sorry you were confused by that honey, but you have to understand that the people who made the test were just trying to come up with a good test question that was interesting. Most people don’t think about whether birds sit or stand because they aren’t looking at bird feet. They didn’t expect you’d notice that, they just needed to write a test question. And your teacher wasn’t trying to make you lie, she just needed to give you a test. It’s part of her job, you know? It helps her see how well you are doing. Do you think you can guess what they really needed you to do?”
It’s knowing that an entire day of emotional trauma and crying along with teacher frustration could have been avoided and the situation solved… just exactly that quickly… if anyone would have stopped for just a moment to understand.
It’s knowing that telling kids that they are smart does not help them, and actually causes them stress. That acknowledging their hard work is better for them so you don’t give them the emotional stress of trying to live up to a nebulous ideal they don’t even have the emotional maturity to process. Smart is relative. I know geniuses who never amounted to anything. It’s real effort and accomplishments that count and that should be encouraged.
It’s knowing you have to find answers to symptoms that others cannot see. It’s trusting your instincts as a parent and struggling with doubt everyday as you try to find balance and not be “one of those parents.”
And then it’s finally discovering at the age of 10 that your son has managed to hide a vision deficiency that is partially almost like being blind in one eye. And yet not that simple, and not that obvious nor that accurate in description. That it involves 6 different medical diagnoses that have apparently been present for years, but that his high IQ has helped him come up with ways to cope with and essentially do average work like everyone around him, almost.
It’s having a child that to the average eye appears a bright normal and helpful kid who breaks down and cries when school work overwhelms him. Yet when it comes to why he would struggle, it seems illogical and out of place to most.
It’s the full impact of learning your child is not technically blind, nor will treating him like he’s blind help him, even as people come out of the woodwork and suggest getting him into braille programs and such. But that even so, legally he will never pass the test to be able to drive and will be dependent on others for the rest of his life if you cannot help him fix this.
It’s discovering that there is treatment for his condition. That he’s not too old yet. That he has a chance at discovering that education, and even something like catching a ball, doesn’t have to be so hard.
It’s the hope you find when years of questions are answered and missing pieces fall into place.
It’s the realization that you didn’t know your son was afraid to play ball at school because he usually got hit in the head. And realizing he didn’t know any better to tell you or anyone else that he was experiencing this. He just thought he wasn’t good enough for sports either.
It’s realizing that he has managed to unknowingly hide this condition for years because he compensates with logic, hearing and memorization. That this helps explain why his visual short-term memory suffers, why he relies on logic so much, why he manages to make adequate grades yet getting him to take notes is like pulling teeth, why he needs to discuss things orally before he knows how to write anything and when teachers refuse or neglect to give him explanations and logic, he cannot figure out what to do. That he uses his hearing to put his thoughts in order and word maps do not work for him.
It’s your heart breaking in frustration for you and your son, still looking for answers others think just don’t exist.
Who will stand up for your child if you don’t? They rely on us to be not only life guides, but champions for them. And yet, there must always be a balance in that.
It’s knowing that in spite of whatever the sources of the issues, that you also have to empower your child not to rely on you to fix everything for them. That sometimes they must rise and fall on their own. It’s having to sort through what is a real problem and what is just being a kid.
It’s facing the reality that in spite of our advancements and the way we tend to treat a variety of disabilities, the other side of the support coin is letting go and letting them swim on their own. That without doing so, they’ll never gain strength and independence of the human spirit that they need to be successful in life. That though accommodation is necessary to a degree, so is finding their ways and solutions to make it in the world. That no one is better suited than they to discover new ground and find new ways to overcome these almost invisible obstacles and make headway into the world of learning and development like we’ve not understood before.
It’s a good story. One that has not only helped my son become stronger, but me as well.
It’s the challenges that I would never have chosen to face on my own by my own choosing in life, that’s for sure. But challenges I had to undertake none the less.
Kids have a way of forcing parents to face a variety of people, situations and inner fears that we would never freely choose to face. Perhaps in part because we couldn’t see to otherwise.
Though I wish that things weren’t so hard for for my son, like most mothers would, I also recognize that these hurdles have helped shape him and will continue to help shape him into the man he will be. That life is about the overcoming. And in spite of frustrations, his (and our) battle won’t be for naught. That he will have skills others do not, because he has faced what others cannot. At least that is the vision I hold for him.
For now, this seems a jumbled pile of emotional and logical parts. But somewhere in here is a golden thread that connects it all together and hints at a path. And somehow, pouring all this from my heart and soul will help me establish a path to write what I need to next.
You can find chapter 2 here…..