Sometimes compassion isn't as straightforward as it would seem. To describe this phenomenon Trungpa Rinpoche coined the term "idiot compassion." Idiot compassion refers to times when we fool ourselves into thinking that we are acting compassionately, when in fact we are simply giving in or giving up. Obvious and simple to understand examples of this idea are the friend who gives more and more money to the heroin addict, the spouse who can't bear to leave an abusive partner or the parent who enables their child. However, it often takes a great deal of wisdom to decipher the difference between true compassion and idiot compassion.
In raising a child with autism perhaps the difference between true compassion and idiot compassion is even tougher to determine. On what seems to be a daily basis you are forced to face one nagging question: Is it best to make the situation easier for them given their disability, or should I push and challenge them?
No doubt every parent faces this question from time to time but with autism it is closer to minute to minute given all the fearful situations presented to a child as a result of communication difficulties, a general inability to understand social situations and fears created by truly disrupted sensory integration systems.
In short, my boys can be like ticking time bombs. After seven years I've gotten a pretty good sense of what is going to set them off. Furthermore, I can even avoid the landmines in a relatively subconscious and natural way. Without feeling like I'm walking on egg-shells or enabling, I can set the day up in a certain way, demand certain things but not others and phrase things in a way that will avoid any potential meltdowns. Sure, sometimes a meltdown will strike out of nowhere and other times I'll find myself bracing for an explosion that never comes. But, as a general rule, I can walk the line if I choose.
This of course means that when explosions and meltdowns do happen, at least when they happen under my watch, I feel that I bear some responsibility for them. There is always something I could have done differently. Often these actions could have been easily justified. I could have removed one brother from another and engaged him thus preventing the fight that anyone could see coming, despite the verbal warning I issued. I could have brought his clothes downstairs rather than making him go upstairs to get dressed. I could have served something for dinner I knew they would like. I could not care if they use a fork. I could look the other way. I could download the app. I could have not said the phrase "but you did lose." I could have called the library to make sure it was open before arriving and finding it closed. I could have bribed him with a snack to leave the bookstore without a book.
These are examples that probably every parent faces. When I was growing up, the popular phrase describing a parent doing the right thing for their child even though it may have seemed difficult was “tough love.” And it is easy to give the advice that you can never give in and should practice tough love. But in the case of children with autism, the meltdowns are so catastrophic as to be downright dangerous. Some enabling is required to safely leave the house. And sometimes you just desperately need for something positive to happen in their lives, and yours. Bombarded by sensory insults that they cannot always comprehend, life is very difficult for them. They are simply physically and emotionally unable to meet some expected behaviors on a regular basis. If you don’t acknowledge that to some degree you’ll never leave the house. Life will be misery and you will get nowhere.
So, the question becomes when and where to draw the line. At what point are you preventing your child from any enjoyment in life and simply beating their spirit into the dirt over things outside of their physical and mental control versus the point in which you are failing to teach them the skills they need to function in the real world? It is a difficult question.
Some decisions are fairly easy. Travel with an extra pairs of sunglasses to deal with severe light-sensitivity- yes. Let them walk barefoot outside in the winter because they don't like the feel of socks- no.
Others aren't so easy. Like, in our case, the Muppet Show and the National Anthem.
It all started innocently enough. When Danny was around two years old we took him to a little bluegrass music festival near our house. It was free, it was a nice day and it seemed like a good idea. Danny wasn't having it. He covered his ears and howled. This was surprising because he seemed to generally love all kinds of music. Music was one of the few things that could calm him. It seemed like maybe he was disoriented by the fact that the music wasn't coming from a predictable location. To remedy this I pushed his stroller to the front of the sparsely attended event so he could see the performers. This made the problem worse and the performers, amateurs, seemed rather scared by the effect their performance was having. Even far away he would not remove his hands from his ears. Even bribing him with his favorite snack failed to work. Watching him try and get to his goldfish with his elbows while keeping his hands clasped over his ears, we knew it was time to depart.
We made light of it at the time. We made jokes about Danny hating bluegrass. It didn't seem like a big deal. It certainly didn't seem like something that would be dictating our life five years later. Even now stating the problem out loud it doesn't sound like a big deal. Danny is afraid of live music. There I said it. Doesn't sound like much, right? But it turns out live music is everywhere if you are really afraid of it. And if what you are really afraid of is clapping, then you’ve got a bigger problem.
As time progressed the problem we assumed he’d eventually outgrow without intervention only grew larger. Danny loved music but soon we were unable to listen to certain CDs. Lacking the communication abilities to tell us why, for a long time we struggled to figure out this bizarre behavior. We'd put in certain CDs and Danny would cover his ears for as long as the CD played becoming more and more agitated. Eventually we discovered that it was all CDs that contained a live song. Even a live version of a song on CD was intolerable to him and not only that but it made the whole CD, even the regular songs, intolerable to him. So, in what seemed like compassionate behavior we avoided them. The child had enough difficulties without us playing music that upset him.
Likewise, events that might contain clapping were beginning to prove just as dramatic. Sporting events became out of the question, at least after the first score. School assemblies--don't even think about it. Gradually, when you would think it would get better, it slowly got worse. Movies were soon out, despite his love of them.
But, to be honest, we had bigger problems. It didn't seem like a battle worth fighting. Thinking myself compassionate, I’d take Danny to a park while my wife took Kenny to a movie.
As Danny turned seven, a couple events highlighted how crippling this problem had become. One afternoon I took Danny ice-skating. He loved it. He was picking it up pretty well and having a blast. And towards the end a live song played over the loud-speaker. He covered his ears and he asked to leave. But, it turned out that the session was almost over anyway. It seemed like a minor event and he talked about nothing but how much fun he had. A few weeks later I tried to take him again (while his brother was at a movie) to capitalize on this newfound activity but he wasn’t having it. He wouldn’t go. He’d take any punishment to avoid going. Why? Because of the live music. Now here was a pretty clear example of the phobia really interfering with his enjoyment of life (and mine). But it was just one example and there had been many before it.
Shortly after this, his fear required that he actually miss an entire day of school as his class took a fieldtrip to a nearby playhouse to see a performance. The school recognized that his fear of assemblies was so over the top and dramatic (up to and including running away) that they felt they could not risk taking him on a field trip. Now the phobia was interfering with his schooling.
Finally, I got a report from school that was the final straw. The music teacher had attempted to put on a video in school. It was a video Danny objected to for reasons perhaps no one will ever discover. And so he physically tried to stop her. And now not only was the phobia keeping Danny from fun and interfering with his schooling, it was getting him into big trouble.
It was finally clear to me (as it had been to his mom for a long time probably) that true compassion was not muting the national anthem or avoiding the movie theater. True compassion would be forcing him face his fears and his dislikes and conquer them. So, this past weekend we embarked on a mission to teach him that clapping on TV or the radio would not hurt him and he could learn to be in the same room with something on TV he doesn’t like and he would survive without screaming, running or covering his ears.
The method of choice was the Muppet Show. Danny had always had a profound obsession/fear of the Muppet Show. Of late it was leaning strongly towards the obsession side to the point where he could tell you what guest star had appeared in every episode based on his readings of the Muppet wiki website. But yet he would not watch the Muppet Show. He would not even enter a room in which the Muppet Show was playing. Eventually, we got him to watch some of the Muppet movies, which he loved, but the "live" audience of the Muppet Show was a deal breaker.
On Saturday, we made Danny sit through a full episode without covering his eyes or ears. He fought like hell for all twenty-six minutes. He screamed and cried and kicked and squirmed and I had to hold his hands down the whole time. It felt like the least compassionate thing I’ve ever done. And so we did again on Sunday. And this time he fought less and had to be held less and for moments he was able to watch, but he still cried and screamed throughout most of it. Then an hour later I discovered him watching the same episode on his own albeit with his hands over his ears. And then two hours later I discovered him watching without his ears covered.
It seemed like the operation was a bit of success. Then the Super Bowl arrived with that frequent reminder that when it comes to kids with autism, success doesn’t come all at once in leaps and bounds, but rather in very short and specific increments. Despite, his recent fascination with football and ESPN’s SportsCenter, Danny suddenly announced Sunday afternoon that he wasn’t watching the Super Bowl and requested that I tell him all about it when it was over. His announcement was so defiant in tone, especially in light of the morning “lesson” that we have to learn how to watch stuff we don’t like, we were left with no choice but to make him.
Eventually it came out that the reason for his announcement was that he didn’t want to watch the national anthem (live singing and clapping). He began crying and covering his ears a full hour before the game was set to start, even while in an adjacent room eating dinner. Eventually a compromise was negotiated. If he would sit and not run out of the room or cover his eyes, he could watch the national anthem with his headphones on. It may not seem like much, but his acceptance of this was actually a big deal and real progress. The headphones don’t block out all noise and he hasn’t agreed to this before. And he did it. And we all survived and he proceeded to enjoy the rest of the game until his bedtime (mercifully before the halftime show).
These glimmers of progress were apparently so stressful to him that his Monday journal entry at school consisted of one sentence, “It was the worst weekend ever!” Based on that entry I doubt the teacher suspected that we acted skillfully and compassionately over the weekend, but I hope and believe that we did. On Monday, thanks to YouTube, Danny and I again watched Kelly Clarkson’s rendition of the national anthem. And this time, for the first time ever, he sat still and watched without headphones and without covering his ears. And so, while I doubt we could go to an assembly or a hockey game tomorrow, I think we are one step closer to enjoying more of life.
At a minimum I’ve learned that compassion isn’t always what it seems and that sometimes to be truly compassionate takes both wisdom and surprisingly a hefty dose of courage.
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