JJ is about to get his third AFO within the next year. His right side has improved a lot since his non-diagnosis of cerebral palsy. He’s still left side dominant but he includes his right hand more often than not now. I can’t go as far as to say he’s ambidextrous despite the fact he writes with both hands from time to time, because everything significant that he does is led with the left hand. He’s learned to jump, I think last year (at 4 y.o) and he can now wear sandals without his brace, which was a huge relief. Personally, I hate not being able to wear sandals or flip flops anymore so I’ve put it into my head that he’d never know life unless he can wear sandals. He continues to throw tantrums over things I don’t understand; it’s like he does something thinking he’ll get in trouble for it but when he doesn’t get in trouble because it wasn’t actually punishable, he gets upset.
He started Kindergarten this year. We had our worries, like every parent whose child starts kindergarten. There’s so much you realize you don’t know about your kid when this day approaches and you really start questioning your parenting abilities.
- Is he really potty trained?
- Does he know how to listen to people that aren’t yelling at him?
- Does he even know how to play with other kids?
- Does he know how to sit down without a tablet or T.V in front of him?
- Does he know how to talk?
You’re likely to know these answers, we did, but you question them anyway. You worry that your kid will be confused, throw his teacher the attitude he gives you, or somehow forget how to aim for the toilet. We also had a few extra concerns like his impulsive behavior, his brace, and his need for systematic routine but for the most part, we pretty much knew what to expect.
What we didn’t consider was his non-disability. I’ve been unsure what to call this, how to describe his situation, and how to bring awareness to the right people in his life. It’s not very complicated yet somehow it is. He has, but doesn’t have, cerebral palsy. He has, but doesn’t have, a disability. He has, but doesn’t have, special needs. It’s like he got so close to my stroke that he was almost, but not quite, directly affected by it. There’s residual effects of an event that he didn’t even have. There’s no solid evidence that he survived a stroke in utero or a pediatric stroke, but there’s no evidence that he didn’t have one either. His scans are relatively clean except for the PVL (<— I just found this site. I don’t know how old it is but I’ve never seen it, I don’t think, and it has information I was never told nor learned from other sites. Now I’m kind of confused about it). But, they did the scans too long after any such event would have happened; it’s impossible to tell if one did occur.
We do everything we can to make sure JJ feels “normal” which isn’t difficult for a few reasons. Number one reason: you don’t treat someone who isn’t disabled as if they are disabled. Secondly, I also wear a brace so it’s easier for him to not recognize this as uncommon leg and footwear. Lastly, assistive devices don’t mean you’re disabled and they certainly don’t make you disabled. We told Skas to be thoughtful of his brother’s affected side when playing with him but we don’t teach him to treat him special. If JJ loses to him in any way, we tell JJ to try harder, we don’t blame his leg, his balance, or the extra tone throughout his right side.
I guess we all simply adjusted in a welcoming manner. Because of this, it can sometimes be a bit of a surprise when some brings up his “disability.” The most recent inquiry was by the school the day we enrolled him. The principal remembered him from last year when Skas was late one day and Kasper explained it was because JJ was having difficulty with something related to his brace. I didn’t know how to answer the What exactly is his condition question.
What is his condition?
I have no idea! I tried explaining PVL first but her expression told me to stop. I then told her it’s like a combo of CP, ADHD, and autism. Her expression went blank on a level near complete conscious desertion. So I said: he’s impulsive, easily distracted, temperamental and has right sided weakness. It was too many negatives according to her facial response. I blurted (in my, “oh God here’s the anxiety proving I just f*cked up,” voice), “He wears a brace, is left handed and gets cranky easily. Other than that he’s a super smart kid.” And he is remarkably smart. For instance, he’s been teaching himself how to read since last year and he’s really good at it. His school’s play a huge role in that, of course, but it’s the way he picks up on it and how he distributes that information to expand his knowledge. I can’t explain it any other way than that. This does make it more frustrating, however, when his homework is to trace letters and he tries coloring in the letter lines instead of tracing them. Like; you understand so much, kid, why are you being so thick skulled on this?
At the end of the first week, it was suggested we consider getting him excused from gym and other physical activities due to his “physical hindrances.” Whoa, whoa-ho-ho……
Apparently, if your kid has “trouble keeping up with other kids” and your kid also wears a leg brace, that means you shouldn’t let him participate in P.E, with other kids, being physically active, and not looking at his affected leg as a disadvantage. They want us to put our child on the sidelines, separate from his class, as an outsider. They say it’s best for him because he falls a lot and he’s not as quick because of it. I’m sorry but unless he’s getting more than bruises on his legs, he will not be sitting out on anything because of his leg or brace. I refuse, I refuse, to sideline my kid because he’s not “quick enough” or “falls a lot.” And why are they confused about the purpose of his brace? They talk like the brace itself is the problem. They don’t understand that it helps him keep up as much as he can, even if it’s not parallel to the rest of his class.
There has to be a word besides disability to describe what this is. He is not disabled, he can participate. Only through participation will he, and his classmates, learn just how non-different he is. I feel like making him sit out P.E would be equal to going to his class and telling his peers to treat my son like he’s “special” and on a different playground from them when he’s not. He can climb a jungle gym, climb the stairs to a slide, and run and jump. Maybe he won’t be successful at jump rope, but if he’s warming a bench while other kids are learning, and falling, and getting back up to try again, he will learn everything I don’t want him to learn and nothing he should.
I realize his P.E class isn’t therapy but learning limitations is a part of life even without disability. If he does learn he is too limited to do something with the other kids, then he needs to come to terms with that instead of hiding from it behind a doctors note. He needs to learn to do what he can, learning to be as physical as possible regardless of limitations and his gym teacher needs to accommodate that rather than the limitation itself.
If JJ was truly being hurt by working to participate with his class in gym or at recess then yes, I would absolutely get him excused from them. I feel, however, that looking at his brace after a couple falls and saying “you should excuse him from participating” is more damaging than failing to overcome a limitation. What does this teach a child? I am not known to be a fighter, I’ve quit and avoided many challenges throughout my life and that’s not brought me much positive results. I have to teach my kids to do better than that; that success isn’t dependent on whether you win, but how hard you fought for the prize. The acceptance of failure is the path to success; telling my kid to avoid challenges that will likely bring awareness to his physical restrictions is like tattooing a huge “Don’t even bother trying” motto to the inside of his skull so he never forgets not to try.
I’d rather encourage my kid to run as if he’s not the only kid in class wearing a brace than pointing out to everyone it’s presence by using it as an excuse for him to sit out P.E. I just don’t understand why a school would suggest I allow them to treat him as if he’s disabled when he’s not. Maybe he does have a disability, but he’s not disabled; and I wish his school, and others, could learn this.
The important thing now is to ensure my child is not being treated differently
I have to be the voice he needs to provide him with the ability to remain strong throughout these challenges which apparently include teachers trying to avoid facing his disability by discouraging interaction with it.