What Is 'Special Needs,' Anyway?
So I’m sitting in my bed feeling fairly crabby, and really not interested in writing – although I had every intention of doing so. I am reading people’s work, I am considering watching some back episodes on my iPad. Then my son starts hacking. If you know me, then you know my son sleeps with me. If you don’t know me, now you know my son sleeps with me, he’s 7. I once wondered in a post; when it would stop. Trust me, that was tongue-in-cheek. This is why it won’t stop.
I hesitate to call my son special needs, because what does that mean really? I don’t think it’s fair to all of the other kids out there who are truly handicapped, are autistic, have issues that are crippling and unexplainable. Yet my son has special needs.
Tonight he slept peacefully beside me as I surfed on my iPad -– all was quiet. We have been on the tail-end of a severe environmental allergy induced cold, that turned into asthma, fairly quickly. This time of year –- that is par-for-the-course. Tonight, all of the sudden, his peaceful sleep and my crabbiness, were interrupted by a fit of nasty hacking. Hacking that I knew if I didn’t get under control would turn into puking – like it did two nights ago. I begin by rubbing his back, I don’t want to shock him into waking up. Sometimes just getting him to shift positions is all it takes.
Not tonight. He continues with the coughing every minute or so, and I wait and watch. Is it slowing down? No, it’s not. If I don’t do something he’s gonna puke and we’re going to have another late night of bed-sheet changes and showers. So I rub his back a little more intensely and whisper to him, “Baby, baby, can I get you some of that purple medicine? Sweetie, can you hear me? Can I give you some purple medicine?” He barely opens his eyes and whispers, “Yeah.” This is a serious change from last year, last year it was always a battle. Once the cognitive abilities grow, things change –- he gets it now. He knows this medicine will make him feel better, will let him sleep.
I go to the kitchen and get the medicine and a glass of water. I come back and think he’s still asleep, but I know it doesn’t matter, he must take the medicine.
So I whisper “Baby, here’s your medicine. Come on baby, sit up so you can take your medicine.” He rolls over and sits up, and he says to me, “Mom, did you know in Temple of the Sun, Professor Calculus says he never wants to be in any type of Hollywood production such as this again?” He’s laughing. (This is from the Tin Tin series.) I agree that it is silly. I say “Take the medicine, boo.” He takes it, no problem. I hand him the water and he makes me hold it; so of course I spill some. “Mom, look, you spilled. You are always confounding things.” My boo. I love him, and I love his big words. He’s still coughing, so I grab the inhaler that lives next to the bed, and he does his two rounds. He smiles really big at me, I kiss him, and he rolls over and falls right back to sleep.
Sometimes I think about the challenges he faces. He has sensory processing disorder; so he’s loud, he’s in your face, he’s extremely uncomfortable around noise, lots of people, rooms that are too dark, rooms that are too bright , he can only wear soft clothes with no tags and he still won’t eat anything creamy. He has a tick disorder that so far is considered a-typical, because although it is like Tourette’s, it is not Tourette’s. It gets worse when he watches TV, it get’s worse when he’s nervous or excited. He has 13 food allergies, 10 of which are anaphylactic (meaning he can die).
He is allergic to every environmental thing you can test for. Everything –- even our Lilac trees, the cause of this week’s episode. He has allergy induced asthma. He is allergic to the cold (cold urticaria) and he is allergic to heat (cholinergic urticaria). He has controlled eczema, but that means it rears its ugly head when there is the least bit of irritation.
But, but ... he is perfectly normal.
When I think of what I would expect from a kid like this, I think of a kid like Millhouse from The Simpsons. Simpering, sniffling, sickly, scared of everything.
Have you met my son?
There is not a more adventurous, humorous, nerve-wracking boy on the planet. His vocabulary is spectacular, every adult he ever meets remembers him FOREVER. I can’t tell you how many people say hello to him in the grocery store, people I have no recollection of meeting before, but he also remembers EVERYTHING. They call it an eidetic memory, it’s connected to events and sensory experiences. Every person who works at every bank, grocery store, pharmacy, doctor’s office, wants to talk to Isaiah. They want to know what he’s up to, and man his stories always exceed expectations. All you have to do is go to my YouTube to see for yourself. There is a very small sampling of his antics, only because I am too lazy and tired to upload more. But there is SO MUCH MORE.
This is why I blog. I blog because I don’t know what special needs is. I know what special needs my son has. I know that his life is more fragile than the average child. I know that my fear does not help him. I know that creating drama around his issues does not help him. I also know that as a homeschooling mom of a child with the personality of 10 stand-up comics I need an outlet. As a one-time photographer, novel writer – but not finisher, I needed to create; but I also needed to share.
I need to share with moms starting down any of the paths I am on with Isaiah, that everything is OK, don’t panic, don’t create drama, this is not about you. I want to tell people you can be strong, and life can still be fun and as the mom or dad of a kid with any one of these issues; you still deserve your own life. And so I blog.