Letting Go and Holding Back.

When you are a parent of autism, your children are young much longer than their peers.  You lose that connection of "Johnny's mom let's him do it!"  They are not able to ride their bike out of sight, walk to the convenience store for soda, walk down to fish in the creek with their peers.  They don't go on sleepovers, because they aren't ready.  And, frankly, nobody ever asks.  And by the time they might be ready to do that, their peers have moved on.  They are now going on group dates, and riding their motor bikes and ATVs.  They're going to concerts of groups neither you nor your child have ever heard of.  They have learned to drive and some of them even have their own cars. 

And your kid still can't ride a bike.

And so you limit them for far longer than other kids.  Often far longer than they need.

At 12, for Nathan, it is still not a question.  He has no concept of safety.  He has to be locked in the house for safety.  There are locks on the windows.  The doors in the car still have their child safety locks on.  The idea that someday he might drive or ride his own bicycle seems ludicrous at this point.

But for Sam.  He has been to sleep over camp.  After several years of his dad going every night to sleep there with him, he slept there alone last year.  He still had TSS support for his classes during the day.  He pretty much skipped the evening activities, as he has every year, because he needs the time to decompress and be alone.  He take no electronics, because he's terrified to leave them unplugged for more than a couple of minutes.  Even his iPad which will hold a 9 hour charge.  No books, no games, no cards.  Just hours of stimming to decompress every evening. 

So it's only been one year.  And he leaves Sunday for his second time on his own. 


Today I went to pick him up at the local college where he attends a day camp with his little brother.  He takes art classes, architecture, math, computer.  This is a good place.  And the people who teach there - professors, grad students - are pretty good.  Nice.  Accommodating.  Educated. 

I was still 50 yards from the open door when I heard him melting down.  To keep him from running out of the room, they had told him he couldn't leave until his mom got there to sign him out.  So as soon as he saw me put my signature on, and before I could grab his little brother and the lunch bag, he bolted out the door and up the stairs and out of sight.  I caught up to him outside where he was haranguing another staff member for the cause of his anxiety.

They had taken the folder of art papers upstairs with the painted flower pots which were now filled with dirt.  And the folders might blow away.

Never mind that the air was barely moving.  Never mind that a staff member was standing right there.  All that mattered was that Sam was worried and upset. 

And out of control.  Enough so that Isaac was in tears and needed my comforting nearly as much as Sam.

It took a good hour to get him calmed down.

I am still fretting about camp that starts in two days.  What if this happens at camp?  His fellow troop are good kids, and fortunately know him well.  They cut him a lot of slack.  But it won't just be his troop.  And sometimes his reaction just seems too unpredictable.  I can see later why he melted down, but it's not always.  Many times it seems like an accumulation.  And, unless you start intervention as soon as it starts, it escalates into what seems like extreme rudeness, crying, screaming and distress. 

All he has is 5 hours per day of TSS.  That won't begin to cover all of the instruction time.  And all of the unstructured time.  He didn't have TSS last year either during unstructured time.  I'm very grateful he isn't a wanderer like Nathan.  And that he doesn't just start striking out when he is upset.

But I'm still worried.  I'm worried he'll be upset far too long.  That he'll make himself even more 'other' than others already see him.  That he'll run too far next time.  He's not a runner.  But I'm a worrier.  And my mom taught me to worry big or go home.

This letting go shit really should come with medications.


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