Relaxing at a Party; the Big Mistake

My husband and I are part of a large network of friends who often have parties. These parties are wonderful for us as they assume the inclusion of our children.  These parties start in the afternoon with children running about, having a good time while the adults catch up and enjoy one another's company.  I have often seen people at these events taking a little siesta under a newspaper in a corner.  No one minds, we almost all have kids and we all know just how tiring life can be.

Two years ago, one of our friends had a housewarming party and Mark and I decided to risk it and bring both children even though we did not have the support of one of Gene's therapy team.  Our older son really wanted to see all his friends.  My husband and I had not seen too many of our friends for far too long and we had missed them.  We did agree beforehand that we were going to take turns watching Gene in 30 minute shifts.

The shifts worked well for the first two hours.  Then, at a shift change, some of our friends started talking about their latest Disney trip and my husband and I made the mistake of sitting down for "just a minute" to listen.  I could see Gene on the outdoor trampoline and he was having fun and he was safe.  So I talked for a "few more minutes," so happy to chat like a normal couple with our friends about normal things.

And then my older son was at my side with three of his friends.  They wanted to get on the trampoline, but there were only four allowed on it at one time and Gene was refusing to get off.

I looked at the time and realized that the crucial ten minutes had passed and that I was in trouble.  Every autistic child has a certain amount of crucial time that they can spend on one activity, then they must change focus or their minds can get completely locked into that activity,  Once that lock occurs, removing the autistic child becomes, well, I guess I'll use the word challenging.

Now the funny thing about this locked state of mind is that the autistic child, or adult, will live completely in the joy of that particular present.  It is a glorious place to be, completely in the Now, and people who meditate seriously deliberately search for this state of mind.  Autistic adults deliberately avoid it.  I remember listening to Temple Grandin explain in an interview that there were certain screen savers that she could not put on her computer because she could lose hours dreamily watching them.

So there is Gene, completely lost in the joy of bouncing on the trampoline on a glorious spring morning with the sun dappling down through the trees.  And here are four other boys who have been patiently, politely waiting for 20 minutes for their turn on the trampoline.

I go to Gene and start trying my new skills, recently learned from Gene's new therapy team, to try to foreshadow Gene leaving this joyous trampoline world and letting some other children have it.  Gene ignores me. Not on purpose, he is simply too lost in his world to really register the words that he is hearing from me.  I finally physically take hold of him to bring him back into our world, breaking the spell.

Gene hits me.  Instant time out.  I grab him close to me, off the trampoline and turn into an empty corner of the yard.  I am informing him that hitting is not acceptable and that he is in time out as I set him on the ground.  The wailing begins.  My husband and I recognize this kind of fit, it is one of the long ones and there is no shortening it, not for love or money.

We alternate saying good-bye to our friends and packing up our poor older son who is now regretting ever wanting to get on that trampoline with his friends.  I am kicking myself for having gotten distracted from Gene.  Since his time out is over, I go to him to take him to the car.  Gene is not cooperating.  He wants back on the trampoline.  I have to pick him up and carry him, screaming and struggling, to the car.  I have to hold him down and fight to get the seat belt around him.  My husband has to threaten dire consequences if Gene keeps trying to take the seat belt off.

Then the reality of suddenly grabbing 50 lbs of struggling child, then hoisting it to the car sets in.  My back has gone out, badly.  Very badly.

By the time we have arrived home, 40 minutes later, Gene is still screaming about wanting to get back on the trampoline and my back has hit a 6 on the pain scale.  I dive for the serious pain killers.  Jacob, who has been covering his ears from having had to listen to his brother scream next to him for the entire ride home, finally gets to escape and buries himself in a computer game.  I abandon my poor husband to deal with the screaming Gene.

This story spins itself out over the next three weeks.  As my violin and viola students are just about to play their youth orchestra auditions followed by the Studio Recital, I re-discover one of the great disadvantages of being self-employed; there is no one to take over for me.  I spend the next three weeks teaching through an injured back.  I run out of prescription pain killer in the first week.  We have no health insurance, so I cannot see a doctor (who would just tell me to rest while prescribing more prescription pain killer) so I do the best I can with Ibuprofen.  I then learned an important life lesson; you can get headaches from taking Ibuprofen for too long.

But the truly important lesson that I learned was that unless I brought support people with me, I could not take my attention away from Gene.  Not even for a few minutes, not even once.