So I was emailing GC yesterday and during our conversation I realized that I've left you all hanging as far as Smacky's issues are concerned. I didn't mean to do that intentionally; S being away has left me a bit frazzled and unable to really reflect much on things. Being busy will do that to a girl... I was simply too tired to explain much of what's been swirling inside my head. So now that he's back and all the men of the house are sleeping and I'm too wiped out to craft, I figured I'd sit in bed with my laptop and spill the beans.
Smacky has (or, at least myself, his psychologist, and pedi strongly
suspect that he has)
Sensory Processing Disorder. It's a neurological condition in which his senses don't work in a regular manner - for instance, one day he'll eat a piece of chicken and it will taste a certain way and the next day it will taste completely different. One day he'll enjoy the radio and the next day he won't be able to stand the noise, even if the volume is the same. One day he'll be okay being bumped by other kids and the next it will hurt like hell. Because his senses find input so (sometimes intensely) unpredictable, he works hard at controlling whatever he can to make his life as predictable as possible. This means avoiding transitions, other children, loud situations. Smacky falls on the hypersensitive part of this spectrum, meaning that most often, everything feels like too much for him though does have his days where he craves sensory input and will crash and hit and yell just to feel. A lot of that part is normal preschooler stuff, but because he has so many sensitivities which are affecting the quality of his life, there is a need for special help. Of greater concern is that Smacky seems to be regressing in some areas; for example, his gross motor skills seem to be weakening instead of progressing - this is because one of his areas of perception - that which addresses how he interprets his body's relation to the ground and other objects- is off-kilter. He is back to crawling down stairs, even in public. This causes problems at school, as does his pushing other children and refusal to sit near them during storytime (he complains they are too loud or "too much"). He has been flapping his hands when excited and currently is 100% toe-walking. He can't balance on one foot. He has big problems dressing himself. His legs are weak - they often feel like big noodles. Because taste is such an issue for him, his daily diet has narrowed down to waffles, peanut butter, pudding and chicken nuggets and pistachios. He'll drink nothing but milk, water, and orange juice. And yes - please - I've read and researched and tried, tried, tried everything you can think of to get him to taste and try more but to no avail. The cold weather is here and it's a trying time...layers, sweaters - anything clothing with weight or potential itch is a no-no - and tags? Hah - they've been taboo since last year. It rained the other day and he sobbed before school just because he knew he'd have to traverse the drops - thank God for his cool fleece-lined raincoat - there are some days when a raindrop will make him scream. I dread the snow...his fear of the fluff, which reared its ugly head last year, has turned out to have much stronger roots than his emotional state. For him, snowflakes can sting to the point of agony. When in the car, his sense of balance is so off he'll ask me to "go slowly."
Often, he falls for apparently no reason. And I cannot get this child into a pool to save my life - forget learning to swim (at least for now).
At the playground, his then-15 month old brothers upstaged him on the jungle gym, happily climbing where he is terrified to go. When they enthusiastically - giggling - pushed him aside to go down the "big kid" slide - a slide he couldn't imagine trying, he became very emotional - it was really hard on him. One day at school, my heart sank as I watched the other kids fly down a small flight of steps to the play equipment. Smacky was last, following them, hobbling down each step, holding on the rail for dear life.
Smacky's been lapsing into ritualistic behavior in order to feel in control. The hand-flapping and toe walking and overall regression are red flags for autism. Because he's so strong socially, we're currently thinking this isn't the case. But because his prematurity puts him at high risk, I'm taking no chances. We have evaluations coming up with the school system in two weeks...my intent is to push, push, push to get him into the integrated special ed preschool, which he'd attend 4 days a week. There they'd provide occupational therapy and PT (if needed) for his gross and fine motor skills. I also am waiting PATIENTLY for a packet from a special developmental pediatrician team in Boston - once completed and sent back I will then get an appointment. This team is supposedly top-notch in looking at children in a whole sense and integrating teams of specialists to make sure they get what they need and that coexisting therapies don't negate or cause harm in another area. In the meantime, Smacky's psychologist Dodder Cowan has been an amazing support in making sure we're doing what we can until all this other stuff goes through. I myself have been trying to work in a sensory diet for him - it's been very challenging and that's not only because I'm short on time, but more because he is so resistant to trying new things.
Honestly, there are days when you'd look at Smacky and think he's perfectly fine. He's definitely a bright, curious child who, when in his element, is sweet and fun and charming. Really - if you knew him, you'd love him. He's a mush when it comes to me and has no issues forming bonds or attachments with other children but I do notice that he does prefer adults and older kids. He's made big headway with his brothers and now and then I catch him kissing them and telling him he loves them. One can even make a good argument for more "let's see how it goes," with him, but from where I sit, because I see everything, that's just not possible anymore. My mommy alarm is ringing loud and clear (as is Dodder Cowan's) and I don't want to wait too long and risk bigger problems. I also can't bear the thought of watching him regress even further, or watching him cry again because he's too dizzy to climb, or watching him hobble and be left behind anymore. Life is hard enough when you're "normal," nevermind spending every day feeling afraid to taste your food or worry that things are going to be "too much." And so I've put my blinders on and am moving forward, day by day, to get this kid what he needs to thrive. Because that's what we do.
So that's where we are with that. And whatever it is, it is. We just need to get to the bottom of what's going on and help him learn to navigate through the muck...make him stronger, help him learn to help himself. SPD doesn't go away, but the earlier the help comes, the more of a difference can be made in retraining the brain to react more positively to varying sensory input. My kid is already quirky because of this...and really, seriously, that's okay. My goal for him is to be happy either with or despite the quirks - to wake up excited about his day, confident in his abilities and feeling safe in his world. He'll probably never climb a mountain, but that doesn't mean he can't move them. First things first though...and the help can't come soon enough.
