“D” day otherwise known as diagnosis day is different for all of us. But one thing resonates between us…. The death of a dream…. The realization that your child will struggle and that the battles have just begun. The road ahead is tough and no one wants their children to struggle or “lose out.” No one wants their child “to be different.” No one wants to see their child scrutinized, judged and tested to death.
Some parents already know that diagnosis is coming and to others it is a complete shock. Some parents don’t even want the screening or the diagnosis because of fear or denial.
For me, I knew. For me, I had searched and begged for help. For me, I was asking for answers. I believed that somehow, once i had the official word, that we could move forward with a plan. Action. Motivation. Tools. We needed to get everything and everyone in line to make my child grow to the best he could. To give him the love, support, knowledge, etc. it takes to make it when i am no longer here.
Maybe that seems too far away to anticipate, but i am not leaving anything to chance and the last thing i want is to leave behind a part of me that cannot survive on his own…
Like many, I knew zane was special. I saw signs.
He was so alert as a baby… taking everything in. He wouldn’t leave my side, and he was the best pocket baby. He would twist his hands and feet in excitement. He didn’t feel pain or discomfort or hunger or thirst. He had issues with textures and had trouble eating solid foods when the time came to introduce them. He stood at 7 months and never crawled but went right to walking by 9 months. He was an angel and explored everything like a scientist. I never had to baby proof the house because he was too careful. And interested in the mechanics of how anything moved or functioned. He enjoyed trains and lining up “like” items. He recited books and tv shows. He didn’t play with toys in the manner they were built for. He never cried really. He was too busy figuring everything out.
Then one day, very suddenly, he changed. His frustrations and lack of verbal ability lead to extreme tantrums. His obsessions of spinning toys and anything flashing or moving became stimming. He never slept and became agitated at the idea of bedtime. His anxieties and stimming ruled the house and our lifestyle. This made leaving the house for anything like grocery shopping or meeting for playdates, or daycare, or eating out next to impossible.
I was pregnant with my second child when zane kicked my in the face and broke my nose. I began to be unable to handle the tantrums as i came closer to my due date.
I found some assistance through out county program for speech therapy for his echolalia and occupational therapy for his sensory processing disorder that he was diagnosed with and small motor functions…
I was reassured that he was not autistic and he would out grow most of the signs I was noticing.
At the age of 3, Zane had his first Grand mal seizure. He came to me on the couch and gently touched my shoulder as he fell into my lap with eyes rolled back and body shaking rigidly. I immediately rolled him on his side and tried to comfort him as I carried him directly to the car and rushed to the er. He would soon after be diagnosed with epilepsy, and that medical journey that many of us must endure continues to be our darkest hours.
It wasn’t until I found a development pediatrician thanks to the advice of a dear childhood friend, that I started to get my answers…. I made the appointment really to discuss the damage and challenges seizures causes. However, once there with the doctor, she challenged me on the fact that I needed a diagnosis for zane. The she believed he was autistic or at the least aspergers. I sat there in shock…. Because if you knew how many specialists, teachers, care givers, therapists, doctors… how many times I asked, no begged, for help and answers…. I was not expecting someone to finally tell me why I had been told no so many times. So I cried. And cried. And was so angry. I felt betrayed like so many had let Zane down. Like we wasted precious time when all along could have been making a difference in his life. The developmental pediatrician asked, “didn’t you have an ADOS (Autism Diagnostic Observation Schedule) test?” And I said “I have no idea. They (meaning the county, meaning the therapists, the doctors) have given Zane so many tests, they must have tested for autism?!?”
She answered…. “no” “it has to be a neuro psychologist” and I am thinking “why has no one said anything? And how is a parent supposed to know this?!?”
So…. Within a week, I had my ADOS in my hand.
Zane had autism.