Every twenty minutes another family gets an autism diagnosis.
After that, absolutely everything changes, for everyone.
I was six years old when my younger brother was diagnosed and I remember a sudden flurry of activity. My parents were always reading, talking urgently on the phone, and eventually we had a team of people in our home to practice ABA therapy. That team would often eat dinner with us, let me braid their hair or do their make-up, and in many ways infiltrated our family. They were too important to us not to be loved. I was a junior bridesmaid in one of their weddings, even. We’re still in contact with a few of them, several years and states later. Sometimes, though, after a year or even more they’d get a different job, life would lead them in a different direction and we wouldn’t see them anymore. We also moved throughout our childhood, and Noah and I have talked at length about how hard the revolving door of home therapists could be on us sometimes. When you’re a kid it’s hard to grasp that while they are in our home with us all the time, this is still their job, and they will leave. Also, just because they do leave, it does not mean they did not care. That’s big stuff for kids in elementary and middle school. That’s big stuff for anyone.
Like many children, with or without autism, Noah had some behaviors as a young child. He would bite, scratch, “act out”. I remember being taught extinction, told that I absolutely could not respond to it because it helped him most for me to ignore it and walk away. Talk about lessons in patience and training to perfect the silent treatment! Although at four years his senior my older sibling instincts did kick in early, and I taught Noah how to walk. To this day I like to occasionally remind him that without me he’d still be army-crawling through life. After he could walk I considered him a much better playmate and took great pride in teaching him anything I could. It naturally transferred that I would thus be interested in following the guidelines of his therapy as they related to me. I played a game with Noah based on his flash cards to teach emotions where I would say, “Look at me! How am I feeling?!” and make a grossly exaggerated expression.
Despite our immediate and thorough intervention, there were unavoidable and far-reaching fringe effects on our family. No more fireworks on the 4th of July… or anything that could set off a sensory overload. Endless IEP meetings, training sessions, conferences, doctors appointments. We were very fortunate my mother did not have to work full time, and could be Noah’s advocate twenty-four hours a day, seven days a week. Not that that was an easy situation on anyone, but you make choices and you choose your priorities. The business she had started herself is long-gone. My father, thus, has had quite a deal of pressure on him for a very long time. His work responsibilities are stressful, and try as we might, his home responsibilities are stressful as well. Three out of five families with a special needs child find themselves divorcing. My parents just celebrated their 25th anniversary. Being their daughter has taught me so many things, namely when you love someone or something you do everything you can. You make sacrifices. You work hard. You never walk away.
As hard as it may have been on all of us, more than I would try to communicate in a singular blog post, it has been the hardest on Noah. Instead of going to camp, climbing trees, and making friends Noah’s childhood was about doctors appointments. Then, more doctors appointments. ABA therapy, speech therapy, occupational therapy, and physical therapy. His appointments with the allergist always won the most of my empathy. The kid would get numerous shots and have to wait an hour to see which ones swelled to what size. Such a blast! Instead of organized sports we did the Special Olympics. I’ve seen him bullied, I’ve seen him feel down and out, and I’ve seen him try his best anyway. Noah never gives up. He whines regularly but he doesn’t quit. Noah has always been successful.
This June Noah will be graduating from high school, and is already taking a class with the community college. He is, hands down, the wittiest, funniest person I know–and I keep eccentric company. He has persevered through more obstacles than anyone else I know. When my mother and I went to preview his senior portraits we both openly cried. It was fairly embarrassing, since the photographer clearly felt a little awkward with us blubbering away on her nice sofa. You just don’t understand what this feeling is until you’ve been through it though.
Noah made it. He attended regular classes with accommodations and pull-out classes as needed, and he will be graduating in June. As an adult my mother shared with me that in the beginning she had been told Noah would never speak, that she was advised to use sign language. That was supposed to be her best bet to communicate with her autistic son who had CP to boot. Her response was, “My son will talk to me and he will tell me what he thinks, how he feels, and what he needs.” Ever since my family has worked tirelessly to ensure Noah can do so much more than his predicted potential. In turn, Noah has worked twice as hard as that. He’s crashed through to the other side of anyone’s expectations. He is my hero.
When I told him this, thinking it would be a meaningful moment, Noah simply responded, “You’re not the first person to tell me that. I’m a pretty awesome guy.”
Coincidentally, the weekend of Noah’s graduation is also the Walk Now for Autism Speaks event downtown. We participated last year, and hope to make this year our best yet. Because every child deserves a childhood filled with fireworks, tire swings, playground romances, and best friends. They deserve to fully experience their worlds and to chase their dreams.
Join us in making that happen! Until all the pieces fit…