The Bare Necessities

Today I had what I commonly refer to as the autism parent unrelated emotional meltdown. These occur every so often and have nothing to do with what's currently going on (though there is always a trigger). They're usually no more than a complete breakdown and sadness spiral, and almost always occur in total privacy (for me that means in the car ride to or from work). Simply put, it is a culmination of a few months worth of stress and aggravation and diminished expecatations that produce an extremely visceral reaction to song lyrics or a passing scene on the road.

A few months ago it was "Don't Look Back in Anger" by Oasis. More specifically, me imagining Mowgli's sister performing on a popular singing contest TV show while Mowgli harmonized or played tambornine. I cried hysterically in the middle of traffic. It had nothing to do with the song, because I haven't been able to replicate it since then. It had to do with the cumulative stress of Mowgli's autism. Note: please feel free to judge the weirdness of this, god knows I would.

Today it was "Say Something", the song by A Great Big World. Particulary the chorus:

Say something I'm giving up on you

I'm sorry that I couldn't get to you

Anywhere I would have followed you

Say something, I'm giving up on you

I suppose I don't need to explain why this set me off, but I do feel that I need to clarify. Obviously I would never give up on Mowgli. It simply isn't an option. Yet I've written in this blog before about expectations, and I think that even with minimized hopes it is hard sometimes not to feel so utterly powerless that, expectations or not, you've failed as a parent by just about every standard.

For many years now a few of Mowgli's issues have not progressed at all. Speech, OT and PT therapists all concluded at his most recent IEP meeting that reducing his therapies one day a week wouldn't matter, because his progress is so slow as to not be effected by the change. They care about him, and I can tell that it bothered them to report that news, and although Amy and I took the whole thing in stride, it will never be easy to hear that your child isn't responding to the most intensive therapy and that he may just be stuck where he is forever.

That kind of information is only bolstered by the fact that the issues Mowgli has at home have changed very little as well. The extreme tantrums (though reduced in quantity are equal in intensity) the interrupted sleep pattern and of course the big one - potty training (which has been at an absolute stand still for the last three years).

Those things build up. They weigh on you as a parent, whether it truly is your fault or not. Autism will do that. It's an extra fine sandpaper, slowly and gently grinding away your patience and confidence. Little by little you become complacent with the fact that there may not be a solution. You come to terms with the idea that your child might be stuck at 5 years old, in certain aspects at least, for the rest of his life. You start thinking in terms of forever. "He'll be in diapers forever." "He'll NEVER speak beyond a three year old level." Never. Forever. Permanent.

And then, one Friday afternoon, your son walks into the bathroom, sits down, uses the toilet and demands privacy while doing it. Then he stops peeing in his diaper at night. Then five days go by and he uses the bathroom every day, unprompted. And then, with any luck, it continues. And then your son is potty trained. If nothing else, you know that you won't be changing some dude's diaper in 10 years. And life seems as though it is moving on whether you want it to or not. It is beyond your control.

That's what set me off today. That's why I sobbed uncontrollably. In a way, my tacit acceptance of the possiblity that Mowgli would never progress was me giving up on him. I had begged and begged for him to say something, anything, and for years I heard nothing in response. And then, just when I was emotionally walking away from potty training - he decided that it was time and that he would move forward - in a way, with or without me. And that hurt. It saddened me, because I felt that I should have hung in there forever. I should have never given up on him.

I'd like to think that I won't ever give up again, but I can't promise anything. If nothing else, it is an effective defense mechanism, and sometimes the preservation of your sanity by thinking realistically trumps blind commitment.

In the end, and ironically in honor of the title of this blog, what I really need to keep in mind is the importance of the bare necessities, and to not worry so much about the relative forever-ness of things, because:

Don't spend your time lookin' around

For something you want that can't be found

When you find out you can live without it

And go along not thinkin' about it

I'll tell you something true

The bare necessities of life will come to you.

http://youtu.be/9ogQ0uge06o