Lilly was always a complicated child. Born with multiple medical issues, she didn’t meet most of her milestones in her first year. She didn’t speak because of scarring on her vocal chords, and she didn’t eat; she was primarily tube fed for the first 7-8 years of her life. Even now she can only tolerate liquid in a sippy cup; she is unable to chew solid food well enough to break it down to swallow.
We thought nothing of her delays; they were expected, given all her medical issues. We weren’t one of those families with isolated autism, where the child is healthy by all accounts and then one day they’re not. Unhealthy was our norm.
When she was around two years old, I mentioned to her early intervention specialists that she had been licking pieces of a wooden puzzle that she loved to play with. Since she was usually averse to putting anything near her mouth, I thought it was odd, but Autism never crossed my mind. It also didn’t cross my mind when I would see her rocking in place. She would rock slightly back and forth when she was sitting and standing. She also bounced- a lot. We had a baby seat that Lilly would sit in whenever she got the chance and just bounce gently for hours, despite the fact that she had long outgrown it.
It wasn’t until the specialists started pointing out her lack of eye contact and tendency to isolate that I began to see it. She had always preferred to be alone. She wasn’t grouchy or irritable; she just fancied the solitude of her room, playing with her toys.
I also began to notice the lining up, the hoarding, and the other OCD behaviors that I had apparently been blind to before. Piles of stuff began to grow in her room, arranged so carefully that she became unglued if anyone touched them or accidentally moved anything. She always needed to have a pile of books near her. She wouldn’t even read them most of the time- she just wanted them nearby, like a security blanket.
It was around this time that it was recommended that she be evaluated for autism. After a round of evaluations, examinations, and observations, she was diagnosed with autism spectrum disorder. She was also diagnosed with an intellectual disability- a double whammy.
I remember thinking back then (naively) that it was just one more diagnosis to tack on the ones she already had. She was still little and her meltdowns were easily disguised as normal toddler tantrums. It didn’t seem like such a huge deal. I didn’t know that much about autism, aside from seeing “Rain Man” multiple times. We didn’t know anyone that had this diagnosis. Back then, it was peripheral to us.
Over the next few years, we would be dealt a very big slap of reality as she grew older, bigger, and stronger. The meltdowns became more intense, the OCD behaviors intensified, and the things that didn’t seem like a huge deal when she was nearly three were now a very big issue.
She reminded me of that nursery rhyme “There Was A Little Girl” by Henry Wadsworth Longfellow. “When she was good, she was very, very good, and when she was bad she was horrid.” Only it wasn’t she that was bad, it was the autism.
There seemed to be no middle ground. She would either be calm, mild, and playing happily in her own world, or she would be in a rage; there was no in-between.
After the official diagnosis, the more intense services began. More speech therapy, more occupational therapy, and behavior therapy as well. We wouldn’t receive ABA for several years, but we had a behavior therapist come and work with us and teach us techniques to use with her.
We also changed her diet, which was relatively easy since she was 100% tube fed at the time. I had heard from many people and read countless articles about how eliminating wheat and casein from the diets of children with autism had had positive effects. We found a formula that fit these parameters and within six months there was a marked difference. A fog seemed to lift; she was more aware, made better eye contact, and interacted with her surroundings more. It wasn’t a cure, but it helped a great deal.
That was the beginning of our journey into the world of autism. It’s been almost eight years, and it has been a roller coaster of epic proportions, but I would not change it- not one bit.