Eighteen years of Autism. Eighteen Years of this journey. When I was asked to write this article my first thought was how can I possibly fit our remarkable eighteen year journey thus far into concise paragraphs that will fill one page. (In fact I am in the process of writing a book about our story.) Every day of our ongoing journey is eventful, every year filled with learning, loving and sometimes white-knuckling through each minute. But we’re stronger than ever so here goes…..
Anthony was a handful from the start! Literally a “handful” ! Born at just 2 lbs, 11 oz, Anthony came into the world on February 9,1995 at just 28 weeks. I had spent approx. seven weeks on hospitalized bed rest in the high risk unit at the Westchester Medical Center, having had contractions and complications that began at 20 weeks. I went home without Anthony on Valentine’s Day – he spent six weeks in the special care nursery where he needed to gain his weight and learn how to suck so he could eat without the tube. I sat by his side from morning till night helping the nurses with everything I could to take part in his care. He came home on March 20th the first day of Spring at a little under 5 lbs. Anthony was so tiny Dad could hold him in the palm of his hand. Together Dad and I muddled through and Anthony began to thrive. Anthony hit all of his milestones on target! A happy bouncing beautiful little guy, we thought the uncertain times were behind us.
I returned to work as a music teacher in the Harrison Central Schools that September of 1995.
We had decided that Dad would stay at home while I went to work in the day then after school Dad could work part-time at his painting business.We just couldn’t bear to have Anthony in day care after such a rocky start. The future looked bright- what could possibly change this happy path we were on. Somewhere around the age of 2, we began to be concerned that Anthony, although happy and connected, with lots of vocal gibberish, wasn’t speaking with words. I began to research. I stumbled upon the word Autism. There were some surprising similarities between descriptions and Anthony yet he didn’t fit some of the profile. Little by little his behaviors were changing. He seemed less connected, unaware-we thought he was deaf at one point because he ceased to turn when we called his name. I remember going to a playground with him around 2 1/2 years old and he didn’t know how to use his shovel – he just wanted to wave it – meanwhile the little tots at the playground were running around speaking in sentences! I remember thinking how strange those children looked! Imagine! As Anthony regressed more and more in his development I researched more and more. I was convinced he had some form of Autism. The doctors were not so quick to diagnose. Remember this was now around 1997-98 when Autism was on the cusp of being in the mainstream. Eventually around 3 years of age Anthony was first diagnosed with PDD. We did everything at the starting gate – doctors, therapists, nutritionists, special educators. But as Anthony regressed – I researched – Dad collapsed – my marriage crumbled. And in 1999 I found myself a single mother raising an autistic child. A new normal. Life is a series of unexpected twists and turns – I’ve always felt better buckling my seat belt and taking the ride!
I dove into the Autism world and recovering Anthony became my number one mission. People would remark that you could not recover a child from Autism but I never understood what the goal was then. I always had the “shoot for the moon even if you miss you’ll land among the stars” attitude. I took 2 years off from work and stayed home to supervise Anthony’s ABA program. He worked 40 hours a week at that table. Not to mention the extra work I put in with him. He truly did not understand the world in which he lived. We did everything together. Our lives were 24/7 learning experiences. Anthony developed an obsession for horses and then carousel horses and carousels. We worked with it. He taught himself computer skills. Eventually he was able to research carousels and his interests on his own. I decorated for every holiday till our home looked like a Hallmark store. We did crafts, read books, immersed ourselves in life. I started a program in my home after watching a Barney show and realizing that the kids in the show were 10 years old, not toddlers – big kids acting like little kids! I had about ten 5th graders come to my home in pairs every day and play with Anthony. I structured the games – the snack time – the playground visits – his 6th birthday party could have been it’s own Barney episode! We went to Stew Leonard’s every other day to label all the fruits, veggies, saw the animals. We took advantage of every opportunity – outdoor concerts – movies – plays. We spent summers in my hometown and I corralled 3 neighborhood kids and my two nieces to be a part of my ongoing “Barney Show” teaching through fun activities. We had Luau parties, craft activities, pool fun, sprinkler fun, face painting, scooter and bike riding – one neighborhood Mom said I was better than the local camp! HA! I made sure Anthony had friends and that his life was full. (Years later I would develop a program in our elementary school based on this home program. It subsequently garnered me the Valiant Educator Award from Manhattanville College in 2011 for innovative educational programming)
I went back to work when Anthony was in first grade. It was incredibly challenging to balance my full time teaching job and my parish music director job and Anthony’s full time needs but we were a team and we made it work. We made so many friends along the way and people are good. Everyone helped. Former students became baby sitters. My community and my church were on board. Our friends became like family! Anthony’s life was enriched and he thrived. His language got stronger, his awareness took off! He took a special class of Taekwondo and we met many new friends. He spent many happy days in the programs of Northeast Special Recreation. He played basketball, swam and even played on the curling team! He learned to play the clarinet and although he went to special programs out of the district, he participated in our band programs all the way through 10th grade. He was in our award winning high school marching band, performed at all the football games, parades and competitions with Mom at his side marching along! I always say we had a good run. A wonderful life together, albeit quirky,nontraditional and unexpected, special diet, many ups and downs, medical challenges, developing tics that began as a tic-crisis, medication trials, but looking back at those first 15 years we held each other’s hands, a bond like no other, and it was truly wonderful.
And then the crisis hit! At age 15 Anthony began experiencing meltdowns. Meltdowns that became increasingly more violent as the years went on. I guess I started seeing the signs a few years prior but it was nothing I couldn’t handle and quite frankly I thought his obstinate behavior was “typical” for a teen and I was happy he had that awareness level. But at 15 it spiraled out of control. My happy amiable boy was no longer there. Most of the time he was anxiety ridden, stopped playing music, stopped all activity except ruminating by the computer, repeating obsessive questions, anything could trigger an episode. He ended up being hospitalized for 2 weeks at the Westchester County Medical Center Behavior Unit. I didn’t think I was going to survive that. As you know, there isn’t a place for our kids when they go into crisis and they have to be placed in hospitals that are not appropriate. But the worst thing had an incredible silver lining – I met my aide Steve. He was Anthony’s one-on-one in the hospital and came home with us and never left. Steve worked with us for three years (and remains a member of my family to this day) And those three years were the hardest part of the journey. Even though we were able to develop some strategies, Anthony continued to have meltdown episodes. He began binge eating – we could not keep food in the house. All non-perishables were kept in the car. I went out to the car every morning to get my cereal! We had a routine and I would go shopping every day for what we needed. We hid food in empty egg cartons and sleeves for jello pudding. In places all over the house – closets, purses. I cannot believe we ever lived that way. He gained so much weight. Everything was designed so there would be no meltdown. Especially for when I was alone. Anthony ruled the house. He couldn’t go to stores because the lines upset him, he couldn’t eat in restaurants anymore – life was halted. We spent our weekends driving around and around and eating McDonald’s the only thing he would eat on the weekends for lunch. So many sleepless nights and working full time in the days. What we Moms won’t do for our kids! Talk about unconditional love! Thank God for Steve, with us day in and day out! I don’t know how we did it, but we did!
And during this time I discovered The Center for Discovery. And me who never thought Anthony and I would live apart, began to consider this. Once I saw it and knew what they would offer Anthony, I knew beyond the shadow of a doubt that this would be the place that would give me back my son. He has been at The Center since we he was 18 – he just turned 20 and our lives are better than ever. Anthony has flourished in the time he has been there. His eating is under control, his behaviors are under control, he’s playing music again, he loves his work on the farm, loves the animals, has true friends, his language and awareness are growing, he’s sketch designing his beloved carousels, and our relationship is better than ever. I see him all the time. And so does his Dad. I am very involved at The Center as well. Sullivan County has now become a new home of sorts for me too. And I am able to follow my path as well, recently beginning a new career venture – my own radio show, The Cris Spinner Show, which airs every Tuesday at 8 pm on WVOX 1460 or WVOX.com – Great conversation, Inspiration and Ordinary Enlightenment!
When I was in my 20’s I thought I would teach school, get married, have children , get the home with the white picket fence and live happily ever after. It didn’t work out that way…well, one thing did…I AM living happily ever after. And that is unequivocally because of one person – my Anthony. He came along and changed everything…for the better…the way it is supposed to be! I couldn’t dream of a better richer experience in this world…and the best is yet to come….for both of us! There is always light at the end of the tunnel. Straight ahead….
Anthony rarely uses the pronoun “I ” and so I always say “Anthony and Me” whether or not it’s gramatically correct! 🙂