“My daughter has Autism.”
This was the first thought of my mornings and the last of my nights. Unlike so many other events in this sequence, I can’t tell you when exactly it started or ended, because the phrase became part of my morning routine. I’d stand in the shower and just stare, until the loss of hot water woke me from my trance. Until that fateful trip to the hospital, this seemed like a winnable battle. Now, hope was harder to find.
I can’t tell you how long we just felt sorry for ourselves, but neither Amber nor I really pressed the issue for the next couple weeks. That was, until Cailyn began doing startling things. It started with alphabet refrigerator magnets. I remember being so upset that she wouldn’t play with them correctly. Instead, she wanted to carry them around and would build a small stockpile in her room or at the couch. One day, as I went to pick up the line of magnets she left on the floor, I noticed the letters were all in alphabetical order!
Okay, so my daughter is twenty months old and we’ve just discovered that she knows the entire alphabet. Maybe we just needed to encourage her in areas of her interest. Sure enough, as we began working with her, she began to SAY the alphabet. This interest spread to colors and numbers. We got to the place where she could recognize, organize, and say them.
We bought other alphabet toys, floor mats, books, and worked with her constantly in these areas. To top it off, we discovered that she loved iPads. She was interacting with it and playing educational games. Even though these activities were on her terms, we felt like we were beginning to gain control again. We were much more confident heading into our appointment with a child psychologist, who we expected to give us the news that Cailyn was highly intelligent, but would need some social therapy to begin functioning at a high level.
Little did I know that day would be the new worst day of my life.
We, again, watched as Cailyn failed test after test because they couldn’t get her to respond or pay attention when they said her name. In our post-assessment meeting, the psychologist watched as she arranged HIS alphabet magnets and recited them. He said her name, twice. She didn’t even flinch.
We were advised that letters, numbers, and colors should be withheld from her, because they were obsessions and distracted her from reality. Instead of just building her intellect, we needed to encourage her social responses. The psychologist gave us a mountain of materials and plenty of advice on how to proceed.
We had four months between our two major evaluation appointments, and they seemed completely wasted. Now, we were dangerously close to the birth of our son, with very little one-on-one time left to correct behaviors.
Amber drove, and I began reading the paperwork in the car. I flipped to case studies of other Autistic children, where I read about a boy who was finally able to live a relatively normal life after years of Applied Behavior Analysis (ABA) therapy by a team of professionals. This was all meant to be encouraging, but it knocked the wind out of me. You see, I naively assumed that Autism could be caught at a young age and “cured” while the child was developing. It never crossed my mind that she would live with this.
When we got home, Amber had to leave for another appointment and I was left home with Cailyn. I decided to try to work with her on activities they tried at the psychologist’s. I couldn’t even get her to respond to her name, because she wouldn’t look away from the fridge with the alphabet magnets.
Months of emotions had snowballed to this point of crisis and I’ve had nightmares about the sequence that followed.
Cailyn watched, as I proceeded to take every letter on the fridge out of her reach. I had never seen her so confused and hurt. Still, I was resolute. We went to the basement, where she had an alphabet play mat that she would run around and recite her letters. She LOVED that mat. I began tearing it apart and putting it away. Tears welled up in my eyes as Cailyn held onto what pieces were left and wept.
“Daddy. Q, R, S, T” she repeated at least a dozen times. She didn’t understand that something which made me so proud just hours earlier, was now the source of such agonizing pain. I tore the last remaining letters from her hands, put them in storage, and we just held each other until she fell asleep.
I still remember phoning my dad. I couldn’t get the sentence out before blubbering like a baby. “I think I lost a piece of my soul, tonight.” I said, between gasps for air.
There were giants in the land.