Monday, August 13, 2012

Maybe Someday


Sometimes things happen that really shine a spotlight on the difference between my boys and their peers.  Yesterday was one of those times. 

My older son, TJ, got invited to a beach party with some of his friends that he graduated elementary school with.  We all went hoping for the best.  What I got was a big dose of reality.

Let me preface this by saying that I don’t keep my boys in a bubble.  We do, however, monitor situations and decide what is appropriate.  I thought yesterday would be great for both boys.  And, as far as they are concerned, it was.  For me, on the other hand, it was an eye opener.

TJ was so happy to see some of his old friends and settled in to help one of them build a sandcastle.  Except for the reminders I had to give him to pull up his shorts and keep his bottom covered, things were good.  Then, more friends showed up.

Some of them were boogie boarding.  We have never had TJ boogie board, just because he really still doesn’t know how to swim well unsupervised.  It’s a coordination issue, but that is another blog.  Other kids were striking up conversations with each other.  Uh-oh.  I know this is hard thing for TJ, but I figured he would be more comfortable since he went to school with these kids for so many years. 

I saw him standing around by the sand castles and looking so confused.  I could practically see the thought bubbles above his head:  “Where is everybody at...Oh, they are talking over there…I wonder if someone will come and build something with me…Man, it is hot…”

He walked over to me and told me that he was bored.  I pointed out that his friends were all over there.  He should go hang out with them.  I mean, that is the whole reason why I lugged my pregnant self across all this sand, right?  Of course he was still left not knowing what to do.  He finally went wading in the water, only for his friends to decide it was a great time to play volleyball.

TL was having a better good afternoon.  He dug in the sand, made his father make countless trips down to the surf to fill buckets of water, knocked over the sand castles the bigger kids made, and threw sand at people.  While some of these behaviors were annoying, no one said a peep and probably wrote it off as typical bratty kid stuff. 

Things took a turn when he decided to go and grab a 3-foot shovel from some kids down the beach.  They were total strangers and he just grabbed the shovel and said it was his.  He swung it around wildly and told them they were not nice.  The kids (and their parents) looked at TL like he was Chucky, while I tried to count to 5 and tell him to put the shovel down (and just where was I going to give him a time out on the beach?).  That seemed to work, but it was obviously time to go.

Now, it is not like I didn’t know that my boys have problems in social situations.  I use all the right phrases (social awkwardness, lack of social cues, socially challenged), but sometimes you just see it, right there, and it makes my heart sink into my stomach. 

I like what John Schneider from the old show Dukes of Hazzard once said, “But some things that most children just kind of learn by osmosis need to be taught to a child with Asperger's”—or autism.  I realized yesterday, just how much more I still need to teach my boys.  Maybe someday, a trip to the beach with friends will actually be relaxing.  Maybe someday…

Tuesday, August 7, 2012

Hating the Burden (Substitute Your PC Word Here)


I laid down on my bed tonight and cried after my youngest son went to bed.  Not just a little cry, but a full-on sobbing fit.  It was one of those days today.  One of those non-stop autism days. 

TL spent the day being stuck on certain things (perseveration), being defiant, needing sensory input, and just being plain ol’ difficult.

This all culminated with a battle over the clipping of his toenails.  TL has always fought us on clipping his toenails.  We have tried every bit of advice we could get our hands on with little or no success.  Clipping them while he was sleeping didn’t work.  Using the nail scissors didn’t work.  Using a soft nail file/buffer didn’t work.  The problem is that he doesn’t want his toes touched—at all.  They are very sensitive from all the toe walking he does and the skin on his toes often gets dry and irritated.

But, we finally have had some success with a reward/motivator/distraction technique; we let him play with some magnetic toys that had belonged to his brother.  He is only allowed to play with them during nail time, so they keep him busy while I do the clipping…that is, until tonight.

Tonight, TL was just not having it.  He fought and kicked and screamed and cried and scratched and swung around the whole time. He finally wore himself out enough that the toys looked good again and he gave up. He didn’t fight me again until I rubbed some lotion on his dry toes. He went to bed exhausted and I collapsed out of exhaustion in my bed.

I cried uncontrollably and lie there hating autism, hating the simple chores that turn into wars, hating the behaviors that are not easy to explain or deal with, hating…the burden.

I know that "burden" is a word that will set off a few people, but sometimes that is the best word to describe it.  There are others:  challenging, relentless, daunting, overwhelming, frightening, all-consuming...

I also know God is there to help me. But when I am restraining a very strong preschooler from kicking my pregnant belly, I don’t always feel Him.  Instead, I feel the weight of this burden of autism.  Having two sons has widened my view of autism, but it has also widened my load. 

I still praise God for the blessings that have come with autism and my two beautiful boys, but I also get exhausted…exhausted from carrying such a heavy burden. I just have to learn to put the burden down more often and rest in Him.  Only He can restore my soul and get me recharged for the next day–the next battle.

So, tonight I cried and I cried and then, I got ready for tomorrow.