This week I have been thinking about hindsight when it comes to raising our son with Autism Spectrum Disorder. As many of you who follow this website already know, our son Jacob is twenty-two years old and has the disorder formerly known as Asperger’s.
One of the questions I hear most often is, “how did you do it?” I know what people are talking about when they ask this; they are asking, how did you get from there to here? There is a little boy who at four years old was rocking, spinning, hand-flapping, toe-walking, and, although he could speak quite well, didn’t engage in meaningful communication. He also had severe arthritis, and flare-ups rendered him immobile and nonverbal. Here is where he is today; a Spruce Creek High graduate with a dual diploma, IB and regular; an honors level senior at a wonderful liberal arts college where he’s held a job for the past three years; staying with his girlfriend’s family in Maine for the summer, working as a painter; a published writer and sought-after speaker and professional development trainer.
The only way for me to see how we got here is through hindsight. It truly is 20/20 compared to what we knew back then. Which was nothing. So, when people ask that question, what they are really asking is, “Will my child get there? To independence? To a fulfilling job? To a healthy relationship? To being okay when I am not there?” These, of course, are questions I cannot answer. I wish I could; you wish you could. What I can share is the things we did which led to these things for our son.
One of the best things we did for Jacob was have other children. Having brothers forced him to share–parental attention, space, toys, the best spot in the car. There was often no choice. Sometimes he just had to wait. I am not saying this was easy. The meltdowns were spectacular and sometimes triggered arthritis flare-ups, a terrible catch-22 for our small son. There were times when I truly feared one of his brothers would punch him in the nose (particularly as teens when he needed dark and quiet to sleep and they needed the opposite) or the other way ’round. But, they all survived. And Jacob developed tolerance. Because he had to. For nonpreferred trips: to the beach, to California, to Hawaii, to North Carolina, to the grocery store, to the Beacon Restaurant for Sunday lunch, to large and small gatherings. To surf contests. And slowly, over the years, he developed the social skills necessary to regulate himself in public. He even learned to surf (out of boredom, I think!).
Don’t get me wrong, we didn’t always force Jacob out of the house. When we could plan for it, we had someone at home with Jacob if he really needed to stay in. But, sometimes his little brother needed a light on to sleep. Sometimes we couldn’t afford his favorite foods for dinner. And sometimes he had to eat whether he wanted to or not–particularly if his medical condition required it. So, there were things we had to make him do. We did work hard to start small and specific; to build up to the big things step by step. We didn’t know, then, that these were the right things to do. We did know that, “fair is where you ride the merry go round” (Vince Baumstark) , and we firmly believed that for our family we needed to stick to, “from each according to his abilities, to each according to his needs” (Louis Blanc). These beliefs were sometimes disputed by our sons, but we weren’t there to be their buddies. We were there to be their parents.
As Jacob grew older his needs became more obvious, more acute, and his ability to self-advocate (and to argue!) became stronger. He was able to make a reasonable argument for his high school of choice, and we were willing to go the extra distance to make that possible for him: he got on a bus three miles from home at 5:20 am, and arrived back at 5:00 in the evening. For four years.
The starkest, most obvious need was for friends. While as a small child his brothers, and their friends who crowded our home, were enough; a new school in another town meant a different group of people–a group whose individuals might reside anywhere from Oak Hill to Ormond-by-the-Sea. And, whatever it took, Jacob wanted friends. We helped facilitate his idea of creating the Spruce Creek High School Autism Awareness Club with this goal in mind. And, he made friends. One of the finest moments I remember from his school days is the day Jacob finished high school. I picked him up, graduation was that upcoming Sunday afternoon. Jacob said to me, “Mom, I have four graduation parties I need to go to. One tonight, two on Saturday, and one after graduation Sunday.”
“Jacob!”, I replied, “four parties! That’s a lot of driving! Do you have to go to all of them?”
“Well,” he said, looking a little confused, ” I think so. They’re all for me.”
I cannot (and I’m a fairly good writer) articulate the feeling which surged through me. I will tell you I’ll never forget that moment. And I will tell you I sent up a silent prayer of thanks; I certainly couldn’t speak. You can bet he went to every party.
There were times when Jacob, and when I and my husband, wanted to pull him from school. The social aspects along with the rigors of academics were often overwhelming. I remember well going to my boss at VCS, Dr. Bill Fink, and making a very practical fiscal argument for the school system paying for a teacher for Jacob at home. It would be cheaper. It would be better. For Jacob. For VCS. I will never forget what he said to me, “Kate, you’re right. Employing an individual teacher for Jacob and the few we have now with Asperger’s would be cheaper. It would be easier. But you owe it to Jacob to keep him in school, and to educate his teachers for the next seven years. Every year. You owe it to the ones who will follow him. Believe me, they are coming.”
Dr. Fink was right. I owed it to Jacob.