An Impossible Choice Opens a World of Possibilities.
June 19, 2019
As parents, we are faced with micro-level decisions throughout each day. Then, there are the macro-decisions – those choices that feel like they could be game-changers. From which nursery school will best prepare a little one for kindergarten to what driving school is most appropriate for a teen, we all want the absolute best for our kids, and will research every option before we take the next step.
For parents like myself and my husband Kevin, there was no amount of research that could give us total peace in the toughest choice we ever had to make: placing our child with Autism into a full-time residential setting.
Owen was 13. As if puberty isn’t hard enough on an adolescent and his family, Owen’s ability to comprehend what was happening was seriously impeded by the neurological, sensory processing, and communication challenges that present in the 1 in 59 people who are diagnosed with Autism Spectrum Disorder. Those not directly touched by these challenges may reflect on what they’ve seen in the movies or on television when they think about autism – but our reality was far more intense.
At 13, Owen’s receptive language (meaning what he understands), was the age equivalent of 2 years and 5 months. His expressive language (meaning what he could tell us), was the equivalent of 2 years and 10 months. Most of Owen’s conversations with us centered around food. “I want bagel,” or “I want pizza.” If he wanted to go in the car somewhere, he said “socks.” He could get his point across but if that trip in the car didn’t bring him to the destination he had in mind, he’d express his frustration by hitting himself or one of us. And, if he flopped to the floor in a bookstore because he was angry that we hadn’t ended up at Target, I was physically unable to pick him up as I was able to do when he was a young boy. He had grown bigger and stronger than me.
As a knitter and yarn shop owner, I’d been visiting the Hudson Valley for many years for the annual Sheep and Wool Festival in Rhinebeck, New York. Each year I drove up Route 9 for the event, I’d be intrigued by a school I’d pass along the way. I had read about this place when Owen was first diagnosed with autism: Anderson Center for Autism. It was always in the back of my head; I wondered what opportunities resided behind the gates and what made a family decide to pursue a residential program.
As Owen grew bigger, so too did the challenges of supporting his needs, and the sense inside me that we might need a larger circle of support grew as well. I began to realize that we’d be doing Owen a disservice by NOT considering a full-time setting. So, when it came time to explore the options, I knew we needed to see Anderson.
And while I had the feeling they could give him what he most needed before I even stepped foot on the campus, stepping into an emotional space where we were comfortable making that possibility a reality was the most difficult walk of my life. It was terribly confusing – and everyone had their own take on it, which further complicated the endless layers of emotion I was processing. A number of acquaintances tried to make it easier by saying, “think of it as boarding school.” One of the psychologists who worked directly in our home with Owen and I was strongly opposed to it. My husband was uncertain. There didn’t seem to be any variable that could give me total clarity.
But – although deeply painful to admit – my maternal instinct told me that we were no longer giving Owen everything he needed to live his best possible life. He didn’t really have friends. He spent the day at school and then came home for two hours of ABA (Applied Behavior Analysis). With the support of his therapists, we attempted to spend more time in the community and less time sitting knee-to-knee running trials, collecting data on color ID, or identifying coins and emotions as we worked to generalize concepts learned in school to home. And our two other children, a son, 15, and a daughter 18, were gracious and loving through and through – but we knew we were missing opportunities to attend to their needs. Kevin commuted to the city and would get home just before 7 o’clock if we were lucky, at which point I was completely depleted and would go to bed. As I fell asleep, I’d anticipate the pattern of challenges would repeat the moment dawn broke, as they always did. The days kind of melted into one another. I worked part-time in a yarn shop until my friend and I purchased our own shop, which got me out – but I lived in a state of total emotional and physical exhaustion.
We were certainly surviving – but no one was thriving. I asked my husband to set up an appointment with a therapist so we could talk about making the decision to place Owen in a residential setting, and talk through how we’d live with the decision afterward. Once we acknowledged and accepted the fact that Owen would benefit from an intensive setting specifically designed to maximize his potential, we began to come to terms with this decision. It wasn’t about our needs to have him home. It was about his needs to access the kind of services and education that could open doors for him. Our school district sent out packets to 6 different schools; only two would consider Owen. One of them was Anderson.
So we toured the campus, and reality began to set in. It was beautiful. It looked like a little village with street signs and paths between the houses. As I imagined, it overlooked the Hudson River. There were playgrounds. And the school and program itself were incredible; there was a whole wing devoted to vocational training, helping the students learn daily living skills that I always thought might be impossible – from making a bed to doing laundry. And it went beyond that – to vocational training rooms that could prepare the students for meaningful work in the community. Oh, and they had a pool! One of the other things we noticed were the number of drains and rocks around the campus. Owen loves to throw rocks down drains, in puddles, ponds, oceans. It could actually be a dangerous behavior at home if he saw a particularly amazing rock in a parking lot and bolted for it, totally unaware of cars passing, no matter how many times we tried to teach him to look both ways. On a campus created for people with Autism, though, he’d be able to safely throw his rocks down the drains. He’d have a chance to really thrive. And we’d have much-needed peace of mind about every aspect of his life.
So the next step in the process (aside from paperwork) was for Owen to tour the campus. This certainly came with trepidation. We woke up very early that morning to beat traffic and get to Anderson on time. Owen brought a pillow and blanket in the car for the 2.5 hour drive up. When we got to Anderson, Owen took his pillow with him. We believe Owen thought he was at a hotel! As suspected, he saw the drains and was very distracted by throwing the rocks. I observed this and thought again about what HE most needed; I was beginning to get the clarity for which I had long been yearning.
Thankfully, Owen seemed to be a good fit for the program, except for his very selective eating habits. Owen liked bagels, pizza, chicken nuggets, reduced-fat Wheat Thins, Skittles, and just a few other foods (common for children on the spectrum). There were no fruit or vegetables in his diet, save one or two brands of fruit juice and the tomato sauce on pizza. The dietitians asked us to keep a log of his diet and encouraged us to get him to try new things, like grilled cheese. We had moderate success, so we weren’t sure whether he’d be extended an offer of admission to the program. One day, however, we received confirmation that Owen had been accepted as a full-time residential student at Anderson. Cue the tears. It was real. It was heartbreaking. And yet, the moment was certainly accompanied by a feeling of gratitude.
Ironically, Owen’s admission date fell right in the middle of an anniversary trip planned to Hawaii. My amazing mother-in-law was coming to watch our other two kids as we celebrated our 20th wedding anniversary. We canceled our hotel reservations and were able to turn our plane fare credits into airline gift certificates which we ended up donating to Anderson for their annual Gala, which felt rather symbolic of this new decade in our married life as parents more tied to the success of our son’s school than to the idea of a vacation.
I will never forget the day we dropped Owen off at school. The entire family drove to Anderson. We walked Owen into the school building and a classmate escorted him to his classroom. We then walked down to Owen’s house and put his clothes in his drawers, made his bed, and hung posters on the wall. Words are inadequate to describe how that all felt. We brought some of his favorite stuffed animals and books on the shelves – we did all we could to make the space feel like home. And yet, we knew it wasn’t our home – and we’d be going back to a house that no longer had Owen’s presence on a daily basis. And then it was time to leave.
I can’t explain the feeling that comes with leaving our most vulnerable child 2.5 hours away, with people I barely knew. Because of his communication challenges, we couldn’t even explain to him that he’d be living there – that the bus wouldn’t be dropping him off at home after school. I wouldn’t be toasting his bagel in the morning or kissing him goodnight. While we didn’t call him for the first few days to give him an opportunity to adjust, the residence manager kept in close contact and sent pictures of Owen, as did his teacher. Surprisingly, Owen quickly seemed right at home there. It was as if he knew that it was where he belonged.
Of course, none of that could take away the melancholy I was experiencing. We had made a photo book of our family and the staff told us Owen was frequently flipping through his book, saying “mommy” or “daddy.” My heart broke as I pictured those moments in his new home. And being in our home without Owen around every day left a pretty big gap in my world and in my heart. Before Anderson, my day began by closely following Owen’s mood each morning, which would then set the stage for everything else. Would he get on the bus without difficulty? Would there be a phone call from the school? What would the communication notebook say about his day? What did the ABC data say (Antecedent/Behavior/Consequence)? Had Owen bit someone at school today? Had he hit his head against the wall? Did he eat his lunch? A constant state of worry, a constant sense of purpose.
As the days went on, and over the years since, the worry has been replaced by joy, and the sense of purpose comes from knowing that we’re doing our part to ensure that our children have the highest quality of life possible. From the moment his residence manager called to tell me Owen ate a Jamaican beef patty at dinner, I began to feel nourished by all kinds of “good news” tidbits and milestones that followed. He has participated in the Special Olympics. He has been to the prom. He has had opportunities to integrate into the community….to learn, to laugh, and to feel connected as part of a community of people whose mission every day is to optimize the quality of life for people with autism.
Looking back, the decision was clear: we needed to add people to our family unit to enhance Owen’s life, even though it meant so much sacrifice. From the beginning, as parents, Kevin and I had an unspoken mission of optimizing the quality of life for our kids. That personal parenting mission aligned perfectly with that of Anderson, which is to optimize the quality of life for people with autism.
What if, as parents, we ALL consider what our personal parenting mission looks like? And what if we simply pledge to make both macro- and micro-level decisions in context of that personal mission?
Maybe that would make every choice as clear as this one is today. And maybe, just maybe, if we remember that we can all do more for our kids if we entrust others to help, our kids (and all of us), can truly thrive.