Monday, November 18, 2013
A Glimpse Into His World
Written by Genevieve Elias
Originally Posted on Coloring Outside the Lines
This week has seen a flurry in the Autism community in response to a piece written by Suzanne Wright on Monday November 11, 2013 - the eve before an Autism Summit in Washington D.C. It got me thinking about the past seven years as I have experienced parenting a child on the spectrum. After a week of introspection this is what I have come up with:
My son is a study in contradictions.
He loves to snuggle, give people (even random strangers) hugs, and is constantly touching anyone within his sphere. However, you need permission to be in his bubble, he has to be in a mood for us to give him hugs, he hates having his head touched, and don't even try giving him a massage - they hurt. BUT, he sleeps under a ton of blankets, loves to be squished between bean bags, and swing or rock.
He struggles with receptive and expressive language, yet his facial expressions speak a thousand words. Although he is fully verbal and for the most part can tell us what he wants there are times when he talk in circles and his conversations don't make sense. Other times he busts out with a song like "Onomatopoeia" out of the blue and will then sit for what feels like an eternity as I show him videos with examples of figurative speech. (He must be learning about Onomatopoeia at school today, it was a phrase that came up quite often before he headed for bed.).
He loves to watch "My Little Pony", "Sophia the First" "Thomas the Train" and "Chitty Chitty Bang Bang" but not if they are too scary. then again, it doesn't bother him to pretend to play zombies, or shooting games no matter how many times they have been banned at our house.
He will spend hours playing with his trains, building tunnels, drawing pictures of amusement parks, trains, planes and automobiles. However getting him to sit for fifteen minutes and do a math page is like pulling teeth - unless you use manipulatives, then maybe you can get him to sit for twenty minutes (more like stand, or swivel on a wheelie chair).
His normal talking voice is what everyone else uses as an outside voice, yet his sisters sweet little voice often sends him into tears of frustration as he screams "You're hurting my ears."
He is afraid of jungle gyms with bridges, but adores fast roller coasters and monkey bars.
The first way you do something with him is usually how he wants to do it for the next million years, and if you change things you have to let him know ahead of time and predict with him about what things will look like. On the other hand he loves to be in complete control of his environment and even though he knows the routine at school he will negotiate every last task. His teachers are learning that not negotiating with him is an exercise in futility.
My son faces an obstacle course each day. Each day the path changes. Some days are easier than others. I know that what my son struggles with is no where near the struggles of other children facing the challenges of more severe autism, but in our family's situation I have to disagree with Suzanne Wright.
My family lives! We live moment to moment sometimes - and other times our lives are very scripted and routine-istic. I don't live in despair, but I do have some fears for the future (I don't think I would be a mother if I didn't). As a mother I do have my good days, and bad days. I also have them as a wife, a friend, a sister, a daughter. Some days I am emotionally, physically and mentally depleted - but so is every other human being on the planet. We all have bad days, and to be honest I think we have more good days then bad.
Yes, I still have to buy pull-ups - and he still has to have an extra pair of clothes at school - but you know what that is okay, and each time he has an accident we quietly move on and we don't make a big deal. HE MAKES a big deal when he realizes that he had a dry night. We let him lead, we will follow.
No, we can't afford those costly trips to the doctor that specializes in autism, and we worry about how we can afford the occupational therapy that he needs for sensory regulation, thank goodness he gets speech therapy at school and that there are programs out there like Touchpoint Autism Services that provide ABA therapy for my kiddo (and give me some great strategies). Yes, we have been on waiting lists for things - but it teaches us patience. I wish our insurance paid for everything - but they don't pay for everything that I need for my own physical ailments. This week I will be attending another IEP meeting to fight tooth and nail for my son to get the services that he needs. If he doesn't get what I feel he needs, than I will continue to advocate for change and supplement what he isn't getting at school at home. (One of the blessing my kiddo has from having a reading teacher as a mommy.
The other day my husband and I had a heart to heart talk. He said "Let's face it, we need help." We need emotional support. We need to be in a better financial place (but that is driven just as much by the economy as it is driven by the cost of supporting our son), and I would love for my son to have better access to therapy.
Most importantly my son is not lost. He may sometimes appear to be lost in his own little world at times, but he is slowly letting us in, and catching glimpses of his world is miraculous. I'd like to live in his world more often, to be perfectly honest. I have Specific Learning Disorder. It took me a long time to learn how to read, and I needed someone to show me unique ways of processing information. I'm grateful for learning how to overcome my struggles. When I look at my son I wish that he didn't have moments that completely debilitate him emotionally, I wish I could make things easier for him - but then I am reminded that through our struggles and weaknesses we become stronger. That is even more so in regards to my son. For every debilitating factor he struggles with there is so much more weighing on the positive side.