I breathed a sigh of relief as the minutes ticked down on the month of November. December 1 st was a Friday so we always celebrate TGIF with a family movie night or a hockey game. November was dark, cold, tiring and trying for our family. My youngest son with autism and other co-morbidities has been struggling in his classroom. Not only there but at home too attempting to get him out of bed, fed, dressed and out the door before the bell rings has become a long drawn out process.
We live where the time zone doesn’t change and it looks like midnight at 7 am when my alarm’s going off. I don’t want to get out of bed either as it’s cold, dark, and I know what I’m going to be dealing with in the next few minutes of alertness. I have enlisted the help of my sons Special Education resource teacher, his Educational Aide and his classroom teacher to work with us on this current obstacle. Last month I saw him fighting, kicking, and pushing open the door while I’m attempting to leave after I drop him off. I’ve had to tear myself away from his grasp as I stand there and attempt to regulate him. He’s in full sensory overload and he hasn’t even got his coat off yet!
A tentative plan was put in place by his OT to have him continue with classroom routine and then have a body break. I had been told it was important to give him this structure. I actually laughed albeit bitterly, as I explained his whole life is structured or there’s utter chaos in his world. Last week I had sat down with my son and told him on weekends we don’t have to talk about school unless her wanted too. Then on Sunday we would go through his school agenda and get his backpack ready to go and read a social story to prepare him. He then told he “I hate school!”
I have to admit it shocked me as this isn’t a word I allow to be used in the home. But when he’s on the playground he’s exposed to a lot more then I know. I then tentatively asked me why he was so upset and the conversation is as follows.
Me-“Why don’t you want to go to school?”
Son- “I hate it there!”
Me- “Why don’t you like it?”
Son- “Because school is hard and it makes my brain hurt.”
Me-…. “I’m so sorry son, I’ll get you all the help you need.”
As I’ve been watching him fall apart the feelings of Mom guilt wash over me like toxic sludge. I throw myself into project after project hoping I can distract myself from this feeling of incompleteness and hopelessness. Will my son always struggle with the basic tasks of getting up and dressing himself. Will he always need more time, visuals, and reminders and extra minutes in his day to process all the information? The answer is yes he has autism and a rare genetic chromosomal disorder as well as other co-morbidities that he’s diagnosed with or may be in the future.
I don’t even know how to describe how relieved I am when I’m alone. When I can sit and not think or feel my anxiety monsters crawling inside my brain telling me I’m not good enough and to try harder at life. I spend everyday thinking, planning, organizing and doing my best to stay 10 steps ahead of a sensory meltdown. Which is worse than a typical temper tantrum trust me on that! Nothing in my life is typical my headspace, my thoughts, even what I have to do on a daily basis to get my kids out the door for school! No matter how many therapists I see for myself or my kids you can’t stick a square peg into a round hole.
Every day it’s the struggle when my alarm goes off and the beeping drives me out of bed stumbling and cursing as I find my way to the bathroom. Then I wake up my kids with repeated requests to get out of bed and start the day. The deep pressure massage and heavy work that I need to do with my youngest son to even get him to move is methodical and precise. When we do finally get out the door and I drop one son off at his school and take a deep breath to drop off the other. I listen to endless whining and crying not to drop my sweet boy off at school.
This takes its toll on me watching him crumble to the floor and beg me not to leave when I drop him off for the day. The behavioural issues that result from his central nervous system being overloaded from a loud and busy classroom are the hardest to deal with. Now that he’s become aware of his differences compared to his peers. The separation anxiety he lives with daily as he clings to my leg reminds me of my own past experience with my Mom. How my son cries at night begging me not to send him to school. And the promises I make him to protect him and keep him safe even from his worry monster as I hug him so close to my heart.
The therapists that expect my son to follow the rules and routines of the classroom don’t know how difficult it is for him. Expecting his atypical brain to comprehend and follow along in a neurotypical environment is like teaching him another language. The use of the visuals, fidgets, headphones, chewlery for his anxiety and even wearing his glasses will send him into a combative mode. Why you may ask, because then everyone can see he’s different abled then them.
He misses his life from before his friends, teachers, and experiences. I don’t blame him I miss those things to yet we need to persevere because him and I are in this together. Autism can be lonely and special needs parenting is definitely the hardest and yet rewarding thing I’ve ever done. The celebrations for milestones reached are joyous and the jealousy for others who don’t get it or don’t deal with this daily is detrimental to my self worth. My son is struggling and my heart’s breaking and I’ll do everything I can to see him smile and like school again. I won’t give up but I will give in to my tears when I can no longer keep them in or hide behind my “I’m fine smile.”Then I pick myself up, put on my teflon armour and face another day. My son is the square peg who I congratulate and celebrate how beautiful and complex his way of thinking is. He encourages me to keep on advocating for his special needs as I’m teaching him the world needs to be more inclusive for him and others like him.
Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here