Living with dyspraxia: Kindergarten was incredibly hard
Kindergarten was incredibly hard. Not for me, mind you, but for Jack.
It was hard to watch Jack, our eldest son, struggle so painfully through every single day of what should have been mostly enjoyable school time.
I find myself thinking back to preschool where Jack had some struggles, but never had enough trouble that it raised any flags. On those days he struggled or acted out, my wife and I thought he was just tired, his teachers thought it was just mixed interactions with the other children.
My wife, Libby, and I never considered that there could be something wrong; that we were leaving our son to feel alone or different than his classmates. We felt he was — and still is — incredibly smart. We have encouraged him to chase topics that interest him. It’s possible he knows more about Egypt than some archaeologists working in the field. He has a focus that cannot be broken once he locks onto something.
He has a huge, and I mean huge, vocabulary. He is one of the sweetest children, rivaling his brother, even, who can charm almost anyone. His smile lights up our world. Why would, how could, this smart, sweet child have any problems at all? We were to find kindergarten and its full assault of cognitive, physical and social pressures would prove us sadly, laughably wrong.
Our school, like many other schools, I suspect, uses a color-based system to reward and track students’ behavior. For simplicity, let’s think of it as below par (bad), par (an average day, neither good nor bad) and above par (high fives and ice cream).
During the kindergarten year, Jack had two days above par. He had maybe 10-15 days at par. By the power of deduction, you can come to the conclusion that he had a whole lot of bad days.
It wasn’t that he had trouble with children or even the teacher; he had trouble focusing. He had trouble sitting still. He could not write his name, it was physically hard for him to do.
Over and over, we continued to find he was frustrated or failing at something, and he knew it. We wanted to help him, but really had no idea what to do.
We asked the school, but at that time they seemed to be monitoring the situation to see how far he regressed. We would later find out that his depth of knowledge put him ahead of the curve for topics, but far behind in skills. By the end of the year he would cry before school everyday because he was so unhappy… as a reminder, this is kindergarten we’re talking about here.
Watching your child fail horribly at something is a miserable experience for everyone involved. Libby, my beloved and incredibly determined wife, decided that if the school wouldn’t tell her what was wrong, she would figure it out for herself.
Figuring out the problem on our own
She looked at many of the common diagnosis for kids, only to find a few elements across many different disorders. Nothing really painted a partial, let alone complete, picture of our child.
Somewhere late in the school year, she found her Eureka! moment. She discovered Dyspraxia and Sensory Processing Disorder.
Lights came on, angels sang, cats and dogs began to live in harmony… we had found something that painted the most complete picture of what Jack experienced in his every waking day, and what we experienced with him in our lives.
Dyspraxia is a condition where the neurons do not form perfectly during brain development. Sometimes this can be between the left and right lobes of the brain, sometimes in localized sections, sometimes it can be the complete wiring of the brain.
For example, if you or I think about performing a task, our brains may process the task in a linear A-B-C path.
Jack does not. His brain may process the same task in an A-B-C or A-C-B or B-A-C or C-A-B and so on.
For us, even mixing the letters wouldn’t matter, because our brains would assume that is normal and always process the task in that manner. The trick that makes it a more difficult for him is the pattern may never be the same twice, or it could be the same nine times out of ten. It’s not something he’s not cognitively aware of; he just knows some days are more frustrating than others. Kind of like an Internet or satellite connection on a sunny day versus a stormy day.
Sensory Processing Disorder is a bit easier to explain. If you and I have interstate highways for nervous systems, Jack has dirt roads. His sensory signals, some of which are speeding and some of which are taking a leisurely Sunday drive, are all trying to get to his brain at the same time without the benefit of traffic lights or multi-lane highways with clearly-marked exits. It is up to Jack to figure it all out, which we do naturally without much effort — but he has to put a lot of extra effort into it.
All the other pieces started to fall into place
Once Libby and I identified what we thought Jack might have, we began to confirm it with experts in neurology and occupational therapy. Armed with our diagnosis and newfound knowledge, we could begin to have conversations with his teacher and the staff at his elementary regarding adaptation and enablement.
It was almost too late, but we were able to close kindergarten on a minor high point. The school agreed to a customized Individualized Education Plan (IEP), ready for him when he returned for first grade.
This single, fairly thick, document allowed us to get simple aids into his classroom to help him focus and learn. He has a wiggle cushion, more or less a flat yoga ball, to sit on and wiggle to his body’s content. He has structured time with occupational therapists to help him understand his body and how to compensate.
Armed with an IEP, first grade was a completely different experience for everyone, most importantly Jack.
Jack improved by an astronomical scale. He made up much of the reading and mathematical ground he had lost during that frustrating kindergarten year. He is still behind, but the mountain becomes more of a hill every day. Remember that reward system? Jack brought home more even par days than I could count. He had at least a dozen “so far above par he left the chart” days. Jack had maybe five bad days. Three of those he shared with his entire class. I’m guessing our fantastic first grade teacher needed an extra hug on those days.
Jack is going to continue to have struggles, he always will. Let’s face it — we all do. My challenge as a parent is to show him that these things that slow him down or make life difficult, can be overcome. The work may not be easy, but it is always worth it.
A brighter future enabled by technology
We’re now looking forward. Collaboratively, my wife and I have been exposing Jack to tablets, and of course he loves our phones. The school started teaching all of the students very early how to operate computers. I am thinking more and more about dusting off some ancient computer equipment that “may” live in my basement for him to experiment on and break.
From my point of view, I want to see what technologies enable him the best and what gaps in ability or experience may appear.
One of our principal concerns is his handwriting. Like myself, writing legibly may always be a struggle for him. He has improved by leaps and bounds, but in coming years, the schools will stop teaching how to perform tasks like writing and math, and start using them to teach.
In the past, this could have put Jack behind again, but I interpret a bright future enabled by technology. As soon as it is possible, I want to get a tablet in Jack’s classroom, if not a pile of them. He can type and speak clearly, and has mastered several video games, more or less. He has all of the skills and abilities to operate any device we connect.
Sprint recently released the Neurodiversity ID Pack to help customers with Autistic, Dyspraxic and Dyslexic neurology organize their lives and overcome their challenges. I’m very proud of the work we did as a team to create this pack. I’ve engaged several of the applications already to help Jack develop visual and motor planning skills, skills he can use to ride a bike or throw a ball, and I plan on using more of the applications as he needs or wants them.