I look at the evaluator. I see her, look at her eyes. I look back at the paper she handed me. I look a little harder and see Declan’s name. Right below his name, his date of birth.
I read below the words Autism Spectrum Disorder and see Mixed receptive expressive language disorder, Developmental delays, Sleep disturbance, unspecified…
Yes, those sound like him. But AUTISM?
My eyes well up, they get big – like if I could just make my eyes open wider the tears would find a new place to go to blend into the rest of my eye. Deep breathing ensues. Mentally I reel my emotional fishing line in.
I found that word to be a very powerful word. I saw this word coming in, landing on my son, on my family. I saw this word taking away the future I had planned for him of college, employment, marriage, kids. I gave the word “Autism” a lot of power. And that word took me down. I had a hard time coping with that one word.
I had a mental image of what Autism looked like. I saw Autism characterized by an individual unable to make eye contact with me. Not because eye contact was hard, but because the individual just didn’t see me. The person with Autism could not distinguish the difference between me and an arcade machine. Which thing was alive, with emotions? To me a person with Autism could not tell the difference. This is not what I saw in Declan.
Declan was having a hard time. We were having a hard time with Declan. But he could look at me. He could tell when I was happy or sad. He couldn’t communicate with me at the time, but I knew he was trying to. We both felt that frustration. Declan was constantly on the move. He had no safety awareness and could not be left alone for a moment. If left alone, not only was there a great chance I would come back to find him on top the refrigerator, but also to find shampoo bottles squeezed out all over the bathroom, curtains rods ripped out of the walls, poop smeared in the carpet. Declan never played with toys. Common household objects were his toys – take the door stoppers out, take the handles off all the drawers – that’s how Declan played. Declan never slept, and since he couldn’t be left alone, I never slept. There was a large time the family was just trying to survive.
In the community things were worse. People, sights, sounds, smells all sent Declan into a raging meltdown. For a long time we did not know what was happening. We did not know the sound was too loud. The person was too close. The sun was too bright. The music was too loud. We always took 2 cars ANYWHERE we went. Things always ended horribly. The only thing I could guarantee about any outing was that I would be carrying a screaming, punching child out through a crowd of staring people. Things were hard.
So, a Developmental Pediatrician diagnosed Declan with Autism Spectrum Disorder. A School Psychologist sat me down to tell me the evaluation results. For a long time, I would’ve said she sat me down to tell me, “the bad news.” I fell apart that day, and for about 3 months after I would say I was clinically depressed. As hard as life was with Declan, nothing compared to the pain I felt after receiving that diagnosis. I gave so much power to a stupid word. Declan had a very typical development until he was 18 months. By the time he was two, things were tough. He had stopped speaking, his behavior was erratic and unsafe. Was he going to keep on mentally disappearing? Was he not going to be able to tell who I was anymore? Was I going to be the equivalent of an arcade machine to him? I was scared. I was sad.
Nobody knew the pain our family was experiencing on a day-to-day basis. We were under such stress. We were not sleeping. We couldn’t go out. We couldn’t leave Declan alone. My husband saw my stress, sadness and hopelessness and reached out to a friend for help. One of the first things she told me “Once you can read the words “Special Olympics” without crying, you need to get to the point of acceptance, to embrace the diagnosis and commit to supporting him however you can.”
Declan was still Declan. Declan still needed me. I took Declan’s hand, and tried to see the world through his eyes. I saw Autism standing with us. Of course I loved Declan for all he was. The word Autism couldn’t take away all the awesome of Declan. I took my family’s hands and showed them what Declan showed me. Once we were able to see why Declan was acting or reacting to situations the way he was, once we could see the Autism, things started to make more sense. Our family could make our worlds more cohesive. Declan’s world is an awesome world. It can be confusing and scary but also filled with great joy. We found a way to make him feel safe, feel happy, get his needs met and to have successful outings in the community. We found a way for all of us to work together and reach family harmony
Each day with Declan is a better day. He is not mentally disappearing at all. He is mentally reappearing. He has a lot of supports put in place. Many therapists and teachers to help him, to help our family help him. I put my time and energy into research. I scanned the internet for information, different therapies. I found others, like me, trying to make sense of a world that we originally knew little about. He has had supportive services in place since he was 2. Early detection, early intervention has had such a tremendous positive effect on Declan, and on our Autism family. We work together to teach Declan, in a way that Declan can learn. Declan is speaking again! We can communicate with speech! I am so hopeful for Declan, for each new coming day and for his future. I don’t know what the future holds for anyone in our Autism family, but I feel that each one of my kids has the potential to reach their goals and dreams.
Even with Autism. A very powerful word.