The Challenge of Parenting a Child wtih Autism

I've been doing this parenting-a-child-with-autism thing for 20 years, 10 months, and 3 days.  Not that I'm counting.  Some days I do it pretty damn well.  Some days I really stink at it.  Many days it's a combination of both, but on my best days it's really neither.  The best days are those days where we just move through without too much of a thought as to how autism will play in our plans.  The challenge of parenting a child with autism is finding a way to have those best days.

Today it was the best of times, it was the worst of times.  Today was one of those days where I did some things pretty well, and other things - not as well as I wished.  RJC had spent her second weekend away and except for the first night where she didn't fall asleep until 2:30 AM (and apparently self-talked her way through the night) I understand it went well.  We went to pick her up.  So far so good.  Then she got in the car and started to play on her iPad - Angry Birds.  Well, let the screaming begin.  No matter what I said she could not gain a modicum of self control.  I am sure that being tired and anxious from the weekend did not help her escalated reaction.  To be clear, I am talking about the kind of screaming that people hear through closed windows.  It was that loud.  I tried to talk her through it.  Nope.  The plan was to go grocery shopping and then for pizza and she was excited about it.  It was on the calendar, and thus, it was to be.  I explained that we couldn't do these things if she was screaming.  Nothing I said was getting through and I finally drove home instead of to the grocery store.  It was the right thing to do, though this decision escalated her behavior into pinching and self-hitting her face over and over.  It was the right thing to do because it is important to never reinforce poor behavior.  It was not the right thing to do in terms of showing understanding of her autism.  I always have a difficult time with this balance.  From my behavioral point of view, I did the correct thing.  From my "mommy" point of view it was a pretty lousy choice to make.  I do not believe this was a conscious choice of behavior.  It wasn't like she was being a brat.  This was her autism taking over.  As a professional once told me, "She just doesn't have an 'off' button."  So what I did pretty damn well today was to make a choice to attempt to make a connection between her behavior and what she gets to do so that once she makes this connection she can learn to control her reactions.  What I did that was not so great was to resent the situation.  I was annoyed that this was our moment to reconnect and it was a disaster.  On the outside I was patient and understanding, speaking in a quiet tone.  Gave her meds to get her through, washed her face with a cold washcloth and snuggled on the couch.  On the inside I was angry that this was the first thing that happened as a reunited family.  I wanted hugs and excitement and I got yelling, pinching and self-injurious behavior.  I suppose to put a final good spin it, I can say that all calmed down as the meds kicked in and we were able to reinforce the good behavior with grocery shopping and pizza. It's been a quiet evening since.

The next five days will not be the kind of days I pray for - where autism does not play into our plans.  It's school vacation.  Can't even begin to put autism on the shelf.  It's five days of juggling work and child care.  It's five days of RJC asking me what her schedule will be when I really don't know.  It's five days of trying to think of things that will keep her amused and busy, that won't cost a zillion dollars, that she enjoys.  It's five days of never, ever forgetting that autism is in our lives. Five days that, experience tells me, will feel like five weeks months years. 

After that, though, I will look for those days where we just move through without too much of a thought as to how autism will play in our plans.  I will look forward to the lack of anxiety, the sheer joy of being with my girl.  And I will work to find a way to have more of those days.  Not because I deserve them - but because she does.