The life of a Mom of a teenager with autism is many things. At times is can be challenging. Other times it can be frustrating. Sometimes it can be both at the same time. But one adjective I would never use is boring. This is never a word I would use the describe the life in our home.
13 years have passed since the day that I heard the words "Your son has autism", and that day now seems like a distant memory. I've gained much wisdom through the years, and whenever possible, I try to help other families as best I can. I'm President of the Autism Society of Los Angeles. I’m starting a support group in my community for parents of children with autism. In a very real way, Jacob's diagnosis has given a purpose to my life that wouldn’t have happened had he not had a disability.
As a young child, Jacob’s behavior was very challenging, and sometimes, I didn't know how I would manage to get to the end of the day. But now, I'm going to write something the me of 13 years ago would have never thought was possible: I miss the challenging days when Jacob was young. It's true. I miss my gorgeous blonde-haired, blue-eyed little boy and the times we shared. I miss the afternoons when we made pillow forts on the sofa. I miss the days when we took trips to the Allied Model Train store. I miss the mornings when I watched him play at the park. It was a time for planning birthday parties, for accompanying Jacob on fieldtrips, and for volunteering in his classroom. And it's not just the fun stuff that I miss, but the tough responsibilities as well. I miss having to complete the daily assignments from his occupational and speech therapists. I miss the hours I spent assisting Jacob complete his classroom assignments. I miss the daily consultation with his behavioral aide to see how Jacob manged each day at school. At the time, I know the responsibilities were I exhausting and many times overwhelming. I guess what I really miss are the days when Jacob needed me so much.
If the me of 13 years ago could read my words today, she would have thought I was crazy. How could I miss the hours and hours I spent helping Jacob complete his daily sensory exercises? How could I possibly miss the exhausting time it took to help him finish his second grade book report on Abraham Lincoln? And how in the world could I miss the times we rushed through the Natural History Museum because of Jacob's inability to focus on the exhibits? Not that there wasn’t difficult stuff during this time as well. I experienced a failed marriage and the collaspe of my business. I was a single-mom supporting a child with a disability with no financial or emotional assistance from my family. I know there were rough times, but today I don't focus on those struggles. What I remember most is my beautiful son and the important role I played in his life.
Of course, I still play an important role in Jacob's life, but that role is very much different. Jacob prefers to be alone, though it's my job to see that he doesn't hole himself in his room with his television and his video games. He completes his homework on his own and manages his assignments independently, though I still keep in touch with his teachers to be sure all is well at school. Now, I wonder about his future after high school and hope he'll be able to move from home one day so he can live a life independent from me. When he was young, I used to worry how he would manage at school each day. Now I wonder if as an adult, Jacob will hold job, have close friends and meaningful relationships, and be able to support himself in his own apartment. Though I know the me of 13 years ago struggled to make sure Jacob’s needs were met, the concerns of the early days of his diagnosis don’t seem so challenging today.
Hindsight is everything and remembering the good parts of the past while forgetting the difficulties is a quality that makes us uniquely human. If I could, would I relive my life with Jacob as a youngster? No, once was enough. But am I happy that my memories of the time growing up with Jacob bring me joy. Absolutely!
Susan is the author of the blog, Taking the Awe out of Autism, www.aweoutofautism.blogspot.com.