There are times when I feel like I’m holding it together then there is other times I’m faking it till I make it. I live a lot of time in a facade of acting like everything’s fine I could’ve won an academy award by now! And the Oscar goes to Jeanine for her role in Burnt out Mom riding the crazy train. I recently shared that my son was diagnosed with autism on World Autism Awareness day.
First I had to process this news with my family then cry for finally having someone validate what I knew all along. I wasn’t surprised with my son’s autism diagnosis, but I was with the severity according to the definition in the DSM-5 (The Diagnostic Statistical Manual of Mental Health 5 th edition) It’s a very personal part of my family life so I needed to share with my extended family/siblings. The news led to some shock, disbelief, and finally acceptance. I debated whether to write about it but this is what it feels like to be brave in print.
We started out on this journey two years ago when I was aware of my son’s developmental challenges. He took his first steps early at ten months when we had just moved into a hotel. My husband had just got a job transfer to a new town while we were attempting to sell our house in the previous one. By the time our youngest son was twelve months he was running and had a small list of foods he would eat.
He also wouldn’t sleep for long periods of the night even after cutting out his first nap of the day. I was living on caffeine and Carnation instant breakfast shakes. He was on the move constantly and I would take him to his brother’s school to attend a play group, and there I noticed he wasn’t behaving typically like other children in his age group. I watched as he grabbed toys and played beside me while I participated in craft time and play dough making. He wouldn’t touch any of it nor interact with other children.
He would also have a difficult time with crowds if the classroom was too busy. I chalked it up to tiredness and I’d take him back to our room for nap time.
The vacuum would scare him and he didn’t like surprises or things he couldn’t predict. I had always referred to him as my sensitive boy when he was born as he was quiet but could get his feathers ruffled quickly. It got to be exhausting keeping him calm, well fed, and happy as he was easily sensory overloaded. He was tactile hypersensitive and never liked to touch his finger food, play dough or the rice table at play group. I had at this time become good friends with the facilitator of the playgroup and I asked for her guidance. My son had turned two by this time and had finally started sleeping through the night as we had moved into a rental house when he was eighteen months old.
It was an adjustment for our family but one I welcomed after living in a hotel for seven long months! The staff was incredible to us and thought of us like family. They made the long days of dark clouds that matched my mood and rain bearable. I felt brave for having gone through that experience and yet I had this feeling that my son needed more interventions. With the help of my friend the children’s facilitator, she referred me to a child development agency. Then came the next few months of evaluations and questionnaires regarding my son’s development. He was approaching the age of three and still was behind in his gross, fine motor skills, as well as speech delayed. Those assessments led us to a developmental Pediatrician that diagnosed my son with Sensory Processing Disorder in particular, Sensory Modulation Disorder.
This is when the central nervous system is seeking out sensory input to deliver that message to the brain and the rest of the body. The sensory message isn’t relayed to the brain quickly enough. Think of it like like a car stuck in a traffic jam. My son had no fear, he’d climb a six-foot bookshelf and jump onto the couch below! He’d also empty every book out of that shelf and dump out toy boxes. I would be in tears trying to put my house back together daily. In that time, I did a lot of reading staying up late burning the midnight oil with learning everything I could about SPD (Sensory Processing Disorder).
My husband had gotten another job transfer out of the province and I was doing my best being a solo parent. The nights were long as my son had begun snoring which isn’t your normal behaviour of a toddler. We saw an ENT that diagnosed him with a sleep disorder but said he was unable to do anything about it. It was a struggle for the next three months but I persevered found us a house, got us packed up and moved into another hotel while waiting to take possession of our new home. I hardly slept and was struggling with depression brought on by chronic sleep deprivation. Luckily my son was still napping so I caught on my rest with him.
My oldest son was also suffering with anxiety and I had to keep reassuring him constantly that he would make friends and enjoy his new school. I got him involved in a summer camp and started moving and unpacking all our belongings. The next few months I spent my every waking minute making our house a home. The school year started and with that brought some more anxiety in the form of my oldest son getting bullied. I had to deal with this issue for the next three months. The office administration got to know me well as I was always requesting a meeting.
Finally, that worked out as I got some school counselling and his teacher to help out. Meanwhile, I was attempting to socialize my youngest son as his vocabulary was finally starting to increase. We met a sweet friend and we attended a play group. It was very busy, loud, and crowded and my son didn’t do well at all. Nap time was a Godsend as the environment left me feeling sensory overwhelmed as well. After that, we attended play dates with our new friend and her family. It was special to have picnics at the park and birthday party fun. When my son turned four we started to think about preschool as he was almost fully potty trained. It had taken awhile but we worked all summer towards his accomplishment.
We did all the assessments with a speech, physical, and occupational therapist who found out he was Globally Developmentally Delayed. Meaning he had a severe delay in one or more of his developmental skills. We worked hard to obtain funding and now he attends a wonderful preschool and has funding for a therapy team. He just turned five and will be transitioning to Kindergraten in the fall. With knowing he has autism there’s been a push in the right direction to get him the funding and behavioural aid support he needs. My son has a lot of challenges in life but ones he’s always faced head on with his tenacity and strength. I see a future full of success, determination, and substantial support. He’s our family’s blessing and the sky’s limitless for him and what he will achieve.Join the Lose the Cape Facebook community!
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