My Son Has Autism, Raising Him Was an Every Day Battle and I Miss It
Raising Billy, my son who has autism, was like going through a war, every day a battle. And now he is 27 and he is gone. Not completely gone — he lives in a group home 10 miles away, and it only takes me 22 minutes to get there. But I no longer have to worry about getting him on the bus every morning, or making sure someone is home when he gets back in the afternoon, or what to do with him those many minutes when he is home and without the ability to find something to do with himself other than walk in a circle in our living room.
Although I have never been in combat, I have some understanding about how it could prevent a person from being satisfied with normal life. While I was in my little war, life had meaning. I was struggling to keep Billy safe and fed, his teeth brushed, and clean — clean was tough, since he was unable to eat anything, including cereal, without making a mess. Often just when the bus arrived he would do something that required a new shirt; the bus had to wait.
No war is fun, and mine was no exception. I would go through every day on edge, waiting for a call from the school about something he had done, something that set him off, someone he had hit. Dreading the little notebook his school sent home each afternoon with updates on his lack of progress, his aversive behaviors. I suffer symptoms of my own personal PTSD still today, when he is anxious and amped up. One never knows when he will explode.
He tortured us, but we tortured him too. Billy’s intellectual disabilities make it difficult for him to learn. Too many hours were spent trying to get him to do things he could never do — we didn’t know that his capabilities were so limited. He will never read, never understand an abstract concept, never even have a real conversation. How frustrating all that “education” must have been for him. By middle school, I was done. I begged his teachers to stop trying to make him do academics. What he needs is to learn how to regulate his sensory inputs so that he can be in the world! Teach him that! (They listened and agreed. They were not the enemy. I am very grateful to all the heroic teachers in Billy’s life.)
Of course it is ridiculous to compare my experience to actual combat, but there were days that I wished that I could do a stint in the Army instead, and then be released back to civilian life. I would have loved a furlough between deployments, but what I really wanted was to serve my commitment and then be done. Released. War over. Life back then was just too hard.
What is it about these special people that have such a grip on us? Billy put me through so much, and I received no obvious reward for my efforts, no ticker-tape parades. As a young adult, he can’t share amusing anecdotes or show me funny videos or discuss the latest sports news or, most days, make me proud.
A few reasons come to mind. First, all children bring moments of joy, and Billy is no exception. There really is nothing like his smile. It brightens everyone who sees it, because it is so pure, innocent, and real. Billy does not smile as a social cue; his smile is because he hears his Uncle Mark on the phone, or is going for ice cream with Aunt Martha, or is swinging in Aunt Laura’s tree swing, put up every year, just for him. Because he is right where he wants to be, with the people he wants to be with. The love he has is so deep it drowns me.
Second, he has made me a better person. I am fairly sure that I would have been more callous and arrogant if I only had typical children. I am not particularly patient and I don’t believe I am naturally suited to being a mother of a special needs child. I certainly didn’t volunteer for this. I had led a fairly charmed life, truly believing I was in complete control of my destiny (ha!), and I couldn’t imagine that I could have a child who was anything but perfect. Seriously. As he was slowly getting diagnosed, I remember how horrified I was about the idea that my child might have to attend some mild special education classes. Serves me right.
But I think what he really gave me was a reason to live. A purpose. I was Billy’s eyes and ears and voice. I had to be completely engaged when taking care of him, and there was no room for error. I couldn’t sleep in, drink too much, or even stay in bed when sick. He needed me for everything. Now I get up in the morning to a quiet, dark house (I am an empty nester, all three kids are gone), and wonder why I bother. I have talked to plenty of mothers whose kids have launched to know that this feeling usually passes. For me it has been three years and it is not passing.
A newspaper reported that a soldier was asked if he missed anything at all about the brutal war he had served in. He replied, “Ma’am, I miss almost all of it.”
Shocking, but I get it. I finally have the peace I yearned for, and a full life to boot. I have a husband who makes me laugh, a solid law practice, an active social life, and time to work out. I am happy. It is only in those quiet times, when no one is around, that I struggle. It is odd to feel this grief and loss, when life is actually going well. Believe me, I don’t want to go back to those days when we were in crisis and were barely keeping it together. But I sorely miss that intensity of dedication. I miss almost all of it.
Back in the beginning, there seemed no end
There’s a reason for the saying, “Don’t kill the messenger.” We never forget the time when we first hear the news of a tragedy, or in my and many of my clients’ case, of a terrible, heartbreaking diagnosis for our children.
