For those 18+ months of seemingly never-ending medical issues, we saw very little progress (or one step forward, three steps back) in therapies, as Harrison’s body was working so hard just to find equilibrium. When so much is spiraling all at once, it’s hard to know what is causing what. We saw some red flags in behavior during those months, but with so much going on in his little body, nothing else was on our radar.
Once his seizures had been controlled and his health had been steady for a while, we continued to see the behaviors that we once brushed off due to health concerns. Development still wasn’t happening in some key areas. Harrison was not aware of or interacting with his environment appropriately. He was not making eye contact, was not communicating verbally or signing, and still did not respond to his name at 2.5 years old. We would find him rocking back and forth excessively while twirling one simple rattle toy, or simply staring at his hand or a light up toy, for 30-45 minutes at a time. He was struggling with eating certain textures and even stopped drinking fluids. He would often bang his head repeatedly against the back of his high chair, and he became very sensitive to loud noises that would instantly make him cry.
Luckily, our new pediatrician was well-versed in working with medically complicated situations, had experience working with hundreds of children with Down syndrome, and had her own first-hand experience as a parent of a child with Down syndrome to guide her. She had brought up looking into further testing for ASD in the summer of 2019, and again that fall when we were still concerned with the same red flags.
Happy Autism Acceptance Month, friends! Here’s to much grace for navigating a new plot-twist along the journey, and gratitude for the knowledge that comes with another missing piece to the puzzle!