My Precious Son on the Spectrum
Today was an emotional day. As a mother, with multiple children, having a child with profound Autism (for lack of a better understanding) surpasses your expectant level of stretch. See, we anticipate there will be challenges raising children. We suspect there will be hurdles we have to overcome, that jointly we can communicate how we will navigate the distance, velocity, trajectory to progress. When you have a child with profound autism, in most cases, we are advocating, nurturing, navigating, a territory foreign to our own experiences . We are blindfolded and handcuffed, but marching on. We are battling unchartered realms unprepared, but entrusting in our inner compass and love to protect us and be our armour.
Each year that passes by, I notice the gap increase. I notice at school I am less privy to what my little man needs in order to thrive and I am no longer informed of his day to day adventures and education. Outings are becoming more challenging as spectators aren’t as understanding or patient as we initially perceived or anticipated. I feel the chain tighten as I am no longer simply advocating for him, but I am defending him, translating for him, and communicating on his behalf. I notice I am becoming more anxious about having him out in public, it is effecting me more personally how others view or embrace him. I am more sensitive to others due to my son’s challenges. But why? With all the education, knowledge, acceptance campaigns, social media videos/posts/reels, why are we still so uneducated and lacking in understanding and empathy? Would I be the same if I didn’t have a son of my own with profound autism?
I digress, so let me return to today and why this post was constructed in the first place. Today, at school pickup, I noticed my son’s class, and possibly another class, playing in the quadrant near the carpark. The teachers fully engaged with those students able to follow directions and instructions. The colourful parachute spread vast as they all whisked it up into the air collectively. Their arms stretched forth, the laughter could be heard a field away, and everyone seemed illuminated with happiness. Every child seemed to follow the requirements of the game, even if they didn’t, a slight bit of reassurance and encouragement had them teaming in and enjoying the group activities.
I smiled as an onlooker. I admired the interaction shared. Yet, there was a saddened mirror reflection projected at me. My child wasn’t present. My child couldn’t participate like the rest of the kids. My child would be “too hard” a burden, a hindrance to them and their fun adventure/experience. I gathered maybe he was being changed/cleaned up at the time I pulled up to collect him, as I watched his teacher run off to check in on him or retrieve him. Yet, I wasn’t comforted by the alternative thought. I felt alone. I felt isolated. I felt defeated. I felt this was the commencement of a new set of emotions I would have to navigate with my son who is currently non speaking. I fought back the tears.
The beautiful teacher’s aide who I am utterly grateful for, arrived with my son, yet I felt short, without meaning to convey this behaviour. I knew it had nothing to do with her, if anything, she quite possibly was the one tending to him prior to the handover, but this didn’t provide me comfort at the time. The latest exchanges hadn’t reassured me, with the stubbed toe gushing with blood, the change of clothes that left him shivering in the cold, and now at collection, the onesie with the zipper that would no longer zip. I was disheartened and in the dark. The atmosphere grew grey and clouded and I was alone listening to my own inhale and exhale, my own heartbeat pumping hard, my thoughts so loud I felt I was shushing them out loud.
Hypersensitivity….was I experiencing this? Or was I simply tapping into my child’s needs as a non speaker? Was I experiencing guilt for not home schooling my child like many others with non speaking kids? What a ridiculous thought when I feel I am unequipped due to the needs of the other kids. Is this another case where I see the good in others to the detriment of my own or my kid’s own care? I’m circling back at the fact that I am presently, still alone with my own thoughts, questioning my movements and ability. Am I sinking? Am I swimming? Am I……enough for my precious son on the spectrum?
