I Am a Special Needs Parent

I am not a special needs parent. That sounds ridiculous. Who says that? Who would ever want to be that? Doesn’t everyone’s child have their own special needs anyway? I mean mostly they are the same, but they’re all different too. And tons of kids have worse problems than mine! I just want my child to be a normal kid, to do what the other kids are doing, and we certainly don’t need any labels. “Special Needs.” Heh. Absurd.

On the other hand, it is getting harder and harder to ensure that my child is treated no differently than any other child. Every camp, every play date, every birthday party, I need to pull aside whomever is in charge and let them know what to do in the case of a seizure. And most of the time there won’t be one! Most of the time things are normal, so I can pretend that things are normal, and it’s really no different than a parent pulling aside another parents and saying “Jeffy is allergic to olives.” Is Jeffy a special needs kid because he is allergic to olives? No! He is a just a kid who can’t eat olives, just like mine is a kid who just has seizures sometimes.

Of course it was very hard to convince myself yesterday that I was not a special needs parent. Aside from the constant, never-ending stress, the sleepless nights, the pall of worry hanging over me, and the constant sense that something terrible has either just happened, or is just about to, yes aside from all of that, yesterday we had to get ready for kindergarten. Other parents didn’t have to have special meetings with doctors and teachers and school nurses. My child has special needs, and so we must take special care.

We told the neurologist that we wanted him to play on the playground. His sister wasn’t allowed to in kindergarten, and she still resents it. He is not his sister. He needs to play, physically, with the other kids. The neurologist agreed, and wrote a plan that said he could play on the playground if he wore his helmet. That’s cool; he loves his bike helmet and often wears it to the store just for fun. This would be okay. He would be mostly normal. Maybe none of the other kids would notice. Maybe some of them love their helmets too. And we had the neurologist on our side. We did not have the nurse on our side.

I have never felt any sort of sympathy for the anti-vaxxers until yesterday. Sitting there being told that my decisions about my child’s health were not going to be followed was the most maddening and infuriating thing that I have maybe ever experienced. I walked out of the meeting on the verge of tears. Every sentence from the school was a “what if” of obnoxious proportions. “What if he breaks a bone?” “What if he falls?” “What if, what if, what if?” And I could say nothing without seeming like I did not care about my child’s well-being, but what I wanted to say was that I am only willing to trade so much freedom for security. I will put the helmet on him. I understand that there are risks. But he needs to be free to grow up and play and live. We do not need to eliminate all danger, we just need to be aware of it and manage it. And even though the anti-vaccination people seem to be operating because of fear (like the school), and basing their decisions on faulty data and made-up lies, I still suddenly understood what it was like to be told that I didn’t know what was best for my child. And maybe I don’t. Maybe I am so desperate for him to be normal, that I am taking unnecessary risks with his health. Maybe the school is right. But I still want to punch the school in its schooly face.

As it turns out, I am a special needs parent. I can pretend that I’m not all I want. And I can be a special needs parents while still acknowledging that other parents’ kids have it worse off. It isn’t a contest. Yeah, he seems normal most of the time. When people ask us how he’s doing, we always smile sadly and say “He’s fine until he’s not.” And because of that “not” we have to pull him out of school for extra appointments and blood tests. We need to leave emergency rescue medication at school with the nurse. We need to inform everyone that interacts with him about his condition and how to deal with seizures. We need to send his helmet to school with him everyday. We can’t let him out of our sight for more than a few seconds. It sucks. It almost sucks as much to say it as it does to live it. He has special needs. I am a special needs parent. And he had a great first day at kindergarten. No problems. If only that gave me any hope for tomorrow.

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Posted in Bad Parenting, Doctors, Edward, Epilepsy, Health, Kindergarten, Parenting, School, seizures, Vaccinations.

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