My war is mostly over, and I miss it terribly.
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.
Life with an autistic son was an every day battle.
Although I have never been in combat, I have some understanding of 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.
Wars are not 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.
Billy’s behaviors were unpredictable, and often seemed to come out of nowhere. I would think everything was fine, and let down my guard, and wham! He would he hit someone. Not hard and not a lot, thankfully — it could have been worse. But I lived my life on high alert, walking through a minefield. The constant vigilance was exhausting.
Billy was not alone in behaving this way. Autistic people with high needs can lash out, and sometimes hurt themselves, presumably because they can’t express themselves and have little ability to regulate what is going on inside. They don’t know what else to do. A father whose older son has autism told me that he finds it helpful to never worry about “things.” Windows broken, bathrooms flooded, precious objects shattered, who cares?
But accepting that is easier said than done. I talked to another father who almost died of an easily-curable infection. He said he thinks his immune system was severely compromised by the stress caused by parenting his teen-age son, who had broken 16 windows in their home in a single year.
These wars do have casualties.
Thankfully Billy’s eruptions were never that frequent. For me the true hardship was the seemingly endless, year-after-year, minute-after-minute relentlessness of it all. From morning to night, trying to contain a child who was unable to sit still. All children are a little like that, but Bill took it to extremes.
It took us years to get him to the point where he would sit in a chair while he ate. Pouring water and watching it flow was his cocaine; he loved to play with water so much that we spent our lives trying to avoid indoor floods. He had to be watched at all times, and at all times he was trying to get away. It was a battle of wills every single day, a battle he didn’t even know he was in. He just wanted to do what he wanted to do.
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, in fact quite the opposite.)
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.
At least we were fortunate in that we were never prisoners in our own home, as sometimes happens in these situations. We could take Billy anywhere, although it was often “not without incident,” as we would tell each other ruefully. Billy’s biggest strength is that he is very compliant; he wants to please and do what is asked of him. He can make it through airport security — he puts his arms up and comes to a dead stop when going through the scanners that you are supposed to walk right through, and I can’t help but laugh. He tries so heartbreakingly hard.
Now that the battling over, I miss it.
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. For one thing, 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 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.
And there is no doubt that he has made me a better, more generous and patient, less judgmental person.
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. He needed me for everything. Now I get up in the morning to a quiet, dark house, and wonder why I bother.
People say, “But you have a career! A wonderful, loving husband! And your [adult] kids still need you!” All true. My husband asks, “Aren’t I enough?” Knife in the heart, because the answer is no. And, my kids don’t need me, not the way I am used to being needed. After so many years of intense parenting, the caregiving synapses in my brain are set in stone, begging to fire.
The New York Times recently reported that when 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 am happy. It is only in those quiet times, when no one is around, that I struggle. 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.
The other day I was sitting in court with a mother whose autistic daughter had pulled out chunks of her hair, ripped her face, bruised her arms. My client was fighting with everything she had to be awarded sole guardianship over this daughter, and her ex-husband was doing the same. They were fighting for the right to continue to worry and fret about this extremely difficult child for the rest of their lives.
One might think they are insane, but in fact they are fighting for what matters most. I am still doing that too, but I miss the front lines. I miss almost all of it.
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Karen Mariscal, Esq. is a special needs estate planner and guardianship attorney in Wellesley, Massachusetts, and the parent of Billy, a 27-year-old non-verbal man with autism. Her website is www.kmariscallaw.com.