My oldest son, Gavin, was diagnosed with autism in 2010 at the age of 5 and accepted into the Sussex Consortium for their year-round Autism program. It was a hard diagnosis for us to face even though my husband is a Special Education teacher and works with autistic children on a regular basis.
Gavin was born a twin with his sister, Rylie, at 29 weeks gestation. I remember the first time I was allowed to hold him he cuddled up under my neck. My first thought was “Oh, wow! I’ve got a little cuddle bug!” I called him my Bugaboo. He met all of his milestones albeit a bit delayed due to his early birth.
There was still something “off” though. He seemed to have been born with OCD. His pediatrician and I would discuss his “quirkiness” when he was very little but as time went on, we both knew we needed to get him evaluated for ASD. He would fixate on broken or uneven floor tiles and physically fight me if I tried to move him.
Instead of clothes, his dresser drawers were full of rocks, sticks, pieces of electronics he took apart, old erasers, and pieces of folded papers that he would stare at. He never once played with toys. He was combative, aggressive, and controlling with others, especially with Rylie.
He could not handle changes and had to have strict routine. He was developing certain behaviors such as smelling and tasting nonfood items, for instance ants, plants, feet if he could get to them under a table, soap, etc. The communication coming out was perseveration and how he was receiving communication was extremely pragmatic.
Communication, mutism, and lack of being able to console or touch him was our biggest concern. He was disappearing into a different world each day. We saw him mirror others around him so we decided to integrate him into regular classrooms with a therapist by his side and private therapy during the summers.
He was ahead for his age on an intellectual scale but emotionally, socially, and behaviorally things were difficult for him. We saw slivers of empathy come through and this made us hopeful. The hardest for us was the social impact we saw playing out for him. We could see that he was figuring out that his brain worked differently than his peers.
He wanted to be accepted by his peers but was not. Sports did not work out in his favor with his IBS, awkward gait, and severe social anxiety. We began making plans to remodel our downstairs into a suite for him as he got older, thinking long-term.
He also wanted and needed his own space to retreat and calm down. His social anxiety, even with family, was apparent. What would his future look like? Were we doing the right things? Diets, medicines, therapy…I know every parent question themselves if they have done enough. It’s a hard thing to wonder. You literally tear yourself up over this…
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