Me and Ben at the Sensory Garden which I designed for children with autism.
In order to sound grammatically correct, I guess I should have entitled this post, “Ben and I”, but doesn’t that sound just a little stuffy? Sort of like, “Please join Ben and I for tea and crumpets.” (Imagine that said with a posh British accent.) Not that there is anything wrong with the Brits. In fact, my little Ben happens to be half British himself, and has been to the mother country several times, which is quite a feat for an 8 year old who has autism. An old friend of mine who has never met Ben, recently asked me to explain how Ben’s autism affects our lives. So here goes…..
Ben was born a perfectly normal, and healthy boy on May 11, 2005. As a baby, he reached all of his developmental milestones at the right time, such as smiling, rolling over and walking. By the time he was two, I noticed that he was not talking, and I recognized that as a red flag for learning disabilities, but I never imagined he could have autism! When his father, a Paediatrician, hinted at this diagnosis, I freaked. “How dare you suggest that Ben has autism? You call yourself a doctor?” But as time went on, I could no longer ignore the signs: his fascination with the weather channel, his obsession with letters, his lack of interest in being around other people, and of course his poor communication skills and lack of eye contact. By age three, Ben still had not spoken a word and was not responding to his name. It was at this age that he was officially diagnosed and it was like a death to me. I grieved for several months, shedding many tears behind closed doors as I tried to come to grips with a more realistic view of how Ben’s future might look. While I had hoped that this little boy might grow up to be a doctor like his Daddy, now I had more pressing concerns. Will he ever talk? Will he ever have a friend? Will he need me to care for him for the rest of his life? (This was one of the questions that haunted me most when I was diagnosed with cancer.)
It has been five years since Ben’s diagnosis, and that time has been filled with many challenges, as well as many joys. Perhaps the most challenging aspect of Ben’s behavior is his need for structure and routine. When something changes in his schedule, or the internet is not working, watch out! Ben will scream loud enough that I sometimes think there is blood trickling out of my ears. But luckily, his melt downs do not last long and it is generally easy to distract him to something else. Another challenge for me is his great Houdini skills. Even though my house is locked up like Fort Knox, he continues to figure out how to escape the bolts and chains and has run away several times. Since he has very little awareness of danger, he could easily be hit by a car, or wander off into the woods. This is a constant torment for me. (I asked God to give him 100 guardian angels to watch over him, and I believe he must have at least that many, since he has been kept out of harms way so many times!)
Another ongoing challenge is learning problems. When Ben first started school, I insisted that he do the same program as the other children. I figured that if the teachers kept their expectations high enough, Ben would eventually rise up to meet them. I was wrong. One of the main characteristics of autism is that it is a communication disorder. While Ben is very bright in many ways (for example, he could read before he could talk, and he is a whiz on the computer!), his communication skills are weak and he sometimes seems lost in a classroom that uses language as the main tool of teaching. I had to eventually allow his program to be modified so that he is now learning at his own level.
The other main area affected by autism, in addition to communication, is social skills. You may have heard the expression that people with autism “live in a world of their own”, and Ben does appear to be that way sometimes. Most times, he would prefer to hang out by himself, rather than be with his family or other kids. But sometimes he surprises me. When I was diagnosed with cancer in 2011, my first concern as a mother was for my children, but mostly I worried about how my two older children would take the news. I was not so much concerned about Ben. At six, his language skills were severely limited, and I did not think he would even understand how sick I was. Even if he did, I reasoned that being “in a world of his own,” he would not really be concerned with my plight. But again, I was wrong. Even though he could speak very little, Ben had learned to use the computer to type up and print off messages. While I was going through treatments, I would find his type written notes around the house with messages like, “Mom is hurt” or “Mom is sick.” This told me that he really did understand what was happening to me! Other times he would bring me notes, with messages like, “Dear Mom, you are nice,” or “Dear Mom, I love you.” This told me that not only did he know that I was sick, but he also cared enough to try to cheer me up in his own little way. That is one of the many joys of being Ben’s mom.
Me and Ben when I was going through chemo.
Last week, I met a woman at a Christmas party and we were talking about our children. When I told her about Ben, she said, “Oh my, and you can’t even put them away in homes anymore.” I was so shocked by her statement that I could not respond. If I had my time back, I would have said something like this: Ben has a home, and he shares it with me, his brother and his sister, all of whom adore him. (Actually, he has two very loving homes since he spends a lot of time with his Daddy and Lily.) He is smart, loveable, compliant, and very gentle. He has never shown aggression towards other people or any living thing, for that matter. Our home would not be a home without Ben in it.
Before getting cancer, I was obsessed with fixing Ben’s autism. I figured that with enough therapy and prayers, he would someday be “normal.” After facing my own mortality, I realized that my purpose in life is not to “fix” Ben, since he was never broken. He is perfect just the way he is. It is my job as his mother, to help him reach his greatest potential, whatever that may be. Isn’t that the job of all parents?