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08 April 2016

Who is Asher, and what else is being done for him?

Apparently Asher's quest for a service dog has raised some concern for some people that we aren't trying to "correct" Asher's condition, or that he is not receiving therapy.  I want to address those concerns, because those are valid questions.
I (Kimberly) first noticed that Asher was wired differently when he was 2, but was told repeatedly by friends, family, and medical personnel to “wait and see, it might be a phase” and “boys will be boys.”  In seeking answers on my own, I discovered SPD, and I was pretty sure that Asher fit right into that paradigm. So while Asher’s only had an official diagnosis for about 5 months, I’ve been reading research on SPD for years.  I’m still a newbie by many standards, but one thing every shred of evidence I’ve found points to is that SPD is not something one ever outgrows, and there is no way to correct or cure it.  Asher will be wired “differently” for the rest of his life.  With the right tools, however, he can learn to mitigate its effects and learn to function and even thrive.
A service dog is just one of the tools we’re seeking for Asher’s toolbox.  Just one piece of a much larger puzzle.
Asher attends one-on-one therapy every other week at Play Well Pediatric Therapy.  A few of the therapies used are a modified astronaut protocol, balance training, oral therapy, Integrated Learning Systems (iLs), bilateral coordination, and much more.  As the opportunity arises, his therapist has also offered him places in group dance and movement therapy classes and social therapy with another child.  We are blessed with good insurance through my husband’s job which helps defray this expense. 
At home, we do what’s known as a sensory diet.  I try to keep some variety so Asher doesn’t get burnt out on the same thing, but I don’t always succeed at that.  Asher has a weighted lap pad handcrafted by his loving aunt to help him sit still during school.  He has a weighted blanket that he sleeps under at night (plus several other blankets beloved for texture or sentimental reasons, no matter how hot it is in the house).  There are stretchy lycra sheets on the way to us in the mail right now.  He has a “sensory bin” in his room filled with pompoms scented with lavender and cedarwood oil, through which he can dig for dinosaurs and tiny Thomas trains by touch (sometimes I make him guess what toy he’s found with his eyes closed).  We spray his favorite stuffed animals with lavender and cedarwood, and massage him with lavender and cedarwood lotion.  We integrate heavy work into his household chores (the kid loves unloading the dryer and pushing the laundry basket across the house to the foot of the stairs).  We use the Wilbarger brushing protocol and joint compressions (he calls them “bumps”).  He drinks his applesauce through a straw at lunch.  He takes bubble baths on bad days.  Sometimes, though, I just have to pin him to the ground and pray over him to keep him from hurting himself or his baby sisters.
In public places, Asher often wears a harness.  We started with one of those cute monkey ones; it was actually his own idea.  He’s outgrown that and has a custom made one now, that tethers to a belt I wear so as to have my hands free for the girls or the shopping.  We’ve had to attach a small toy to it to keep his hands busy, or he touches everything in sight (or steals twisty ties from the produce section to play with).  Sometimes he gets over or under stimulated and bolts; sometimes he just doesn’t pay attention and wanders in the wrong direction.  This is the main reason we need a service dog for him. 
HIPAA?  What’s that?  There are no secrets anymore, there is no privacy.  When you have to chase your child into the kitchen at a restaurant, when your 5 year old is hopping like a frog toward the pastor *during* the sermon, when your 5 year old is on a leash but your toddler doesn’t even need you to hold her hand, when you have to beg strangers for help to get the resources your child needs...well, explanations are in order.

But you know...that’s just a part of who Asher is.  He’s also gifted--he tested at a 9 year old level in math, although I only teach him at a 6-7 year old level to avoid burnout or missing a foundational concept (we homeschool, by the way, largely because his disabilities and gifts would make it difficult for him to learn in a classroom with 20 some other kids).  He loves to make up songs about everything. He’s obsessed with LEGOs (and he’s quite the special Master Builder), Thomas the Tank Engine, and Lightning McQueen.  He loves superheroes, and loves the concept of Doctor Who but gets nightmares when we let him watch it.  He dotes on his baby sisters and sometimes risks injuring them by smothering them with too much affection.  He’s had a best friend since he was 9 months old and that friend was less than 24 hours old.  He carries as many of his favorite stuffed animals as many places as we let him (we try to keep it reasonable, like only one at church and none to soccer practice).  He loves Bible stories and Jesus, but hates sitting through church.  He plays with baby dolls and his biggest ambition is to be a daddy someday.  He hates princesses, but tolerates watching them for his sisters’ sake.  He can handle My Little Pony, and suggested being Spike for Halloween this year because he knew being ponies would make us girls happy.  He likes to sword fight and wrestle.  He always chooses light up sneakers when it is time to buy shoes. He hasn’t outgrown snuggles and kisses yet.  That’s my boy.  That’s the Asher that a lot of people don’t get to see because he’s still learning to navigate a society that wasn’t designed for people who are “different” like him.

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