Tuesday, July 4, 2017

Being Comfortable with the Uncomfortable

Bookmark and Share
Eleven.  The number of times Noah exhibited his sensory processing disorder vomiting reflex during three ASO seating appointments.  We sprint to catch it with our hands now to try to minimize the damage to Noah's clothing and wheelchair upholstery and harness straps.  In fact, we've grown so comfortable with having pools of vomit in both hands we don't much give it a second thought anymore.  We just do it. 

When Noah was little his sensory processing disorder presented itself in a much different way than it does today.   I couldn't soothe him, I couldn't console him.  He would scream and cry every waking moment of every day until his first birthday.  Imagine a child that did nothing but cry and scream for an entire year.  I'd bounce with him on exercise balls endlessly trying to ease his mood, I couldn't put him in a car seat and take him even so much around the block without screaming and him getting sick.  If the car stopped he simply screamed louder.  I rocked him, swaddled him, tried white noise.  Nothing I did worked.  I'd take him to the grocery store or Target and for whatever reason being in the check out lane would cause him to impatiently cry and scream making quite the scene.  I used to internally shrivel up like a shrinking violet.  At that age, Noah looked very typical.  You couldn't really detect that he was a child with special needs when he was in an average baby stroller.  He simply looked like a child acting out - with perhaps lack of parenting discipline or without any behavioral consequences even in early toddler years, of two and three.  I'd get stares, I'd get off the cuff remarks, I'd get emotionally hurt and wounded.  I lacked quick whit responses and I had no time to cultivate thick skin.   I was every bit uncomfortable with what was completely beyond my control.   I thought twice about places I'd take Noah, sometimes not just because it was hard physically, but because I expected it to be hard emotionally.
Noah's severe SPD transformed around the age of three into a severe gag and vomiting reflex.  He does it if he thinks someone is going to touch him, he does it when he gets overly excited, he does it when around other small children, he does it on airplanes,  he does it just to do it and sometimes I just don't know why.  While I can predict what will invoke it eighty percent of the time, that twenty percent is still a wild card for me.  And when your child vomits watch out world they back away from you and stare like you're taking a super sickly child out in public.  People stare and make remarks like "he should see a doctor."  I've grown so exhausted from trying to explain it and defend him and me from what people don't understand that I don't even respond back half the time.  I almost pretend as if I didn't hear the statement. 

And now that Noah is older I have a whole other set of really uncomfortable things - like changing your child in public without a proper changing table.  Often in plain view or sometimes hiding behind a giant garden plant while one parent holds him and the other tries to diaper change.  Sometimes I get lucky and will find a first aid station but it's never private and Noah's genitals are usually in plain view as we hustle through the process.  Even changing him on the floors people will stop and stare and gawk.  We're now in some way a disabled spectator sport. 

But over the years I've had to become comfortable with the uncomfortable.  I've had to make all these really unnatural things feel natural.  This is the only way to eliminate the feelings that society tells you that you should be embarrassed of these situations.  There is so much pressure put on parents - even typical parents to parent in perfect ways.  If a child acts out in a store immediately the pointer finger is raised.  We're told that all of our children's actions and behaviors are a direct reflection of our parenting.  But that's simply not the case.  Now I could preach this until the cows come home and I'm never going to be able to change the population as a whole and get people to refrain from passing judgment, staring, being inconsiderate or unkind with their comments about what they are witnessing.  But I can encourage you to react differently to it all.  Learn to become comfortable with the uncomfortable and trust me you'll feel so much better. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.