Our journey in the Autism Spectrum

[Ed. NoteThis is my first writing since May.  I know.  It's been too long.  I know.  I've written something now.  So, that is that.  If you feel you can get over it, please read on. ~Thank you for your understanding.  It is much appreciated!!!  ;-) ]

We’ve been on this autism journey for close to 4 years now.  (Even longer if you count the time before the diagnosis.)  You’d think, at least I think, that we would be better prepared for…you know, anything.  In our case, occasionally sometimes  often, there is not near enough of the preparation.  And it kicks me in the gut every time.

Lucy had a friend, Zach*, over and the kids were playing so well that he stayed for dinner.  On a whim…I know.  See?  There was my first mistake.  Anyway, moving along… On a whim, I thought it would be a nice treat to stop at a near-by sno-cone shack on our way back to Zach’s house.  It’s rare that we do these kinds of things and I really didn’t think about this as being anything other than a typical, fun summer experience.  (Mistake #2 for those who like to keep track.) In the car we told the kids where we were stopping and the news was, of course, well received.  We got our sno-cones with no fuss.  Even their choice of flavors were quickly decided upon.

Because my husband has issues with kids eating shaved ice, covered in sticky syrup, packed high above the rim of a styrofoam cup (or anything else remotely messy) in our van, we would eat outside.  The breeze was lovely enough that it was pleasant outside…if you were sitting still in some shade, eating a deliciously cold treat.  Which was my plan. (Mistake #3, thinking I actually had “a plan”.)

Due to Henry’s recent paralyzing fear of bugs (which seems to be getting progressively worse and which we’ve been battling all summer)  I did a quick scan of the surroundings to scout our options while we waited for our order.  There were only two other patrons sitting on their car on the opposite side of the lot.  I chose well, or so I thought, by picking an umbrella-covered table away from the others that wasn’t at all sticky.  No trash cans or potted, flowering plants were anywhere near-by.  It was actually located on the paved lot right next door to the sno-cone shack.  This meant we had to cross a very short, grassy incline.  Icy treats in hand, we headed that way.  Henry hit the brakes as soon as we got to the grass and refused to go further.  My heart began to sink.  I immediately got a bad feeling about where this was headed.

Grass equates to clover which means bees and other bugs.  I got Lucy and Zach settled at the table while BDC dealt with Henry.  After quite a bit of encouragement he made it to the table.  But he refused to sit.  Henry was in all-out panic-mode, searching the area for flying and crawling bugs.   He was continuously jumping and darting away from “bugs”.    No amount of reasoning or encouragement would stop his outbursts and crying about these perceived bugs.

Now, as someone who also hates bugs, especially when I’m eating, I can tell you that there really were no bugs!  There were none on the table or the on the ground around the table.  Only an occasional fly or dragon-fly-type bug would buzz past well away from us.  Even if you were paying attention, which I most certainly was, there would have seemed to have been no bugs at all.

As a full meltdown ensued, BDC offered to sit in the van with him but he would have to leave his sno-cone at the table.  Whether or not we made the right decision on that, I don’t know. (Probable mistake #4)  But, in this situation we stuck to our guns about not eating these drippy, messy things in the van.   Off they went, with Henry not only upset about the bugs but also having to leave his sno-cone behind.  Yet, he did.

I sat with Lucy and Zach as they enjoyed their sno-cones.  With a lump in my throat I watched Henry’s begin to melt.    I was struggling not to let tears well up in my eyes.  Even going for a summer treat just couldn’t be simple.  And most certainly it was not fun for the little dude.  When I couldn’t take it anymore I sent a text to Grant.

“Is he calm at all?  What do you want to do about his sno-cone?”

At this point, please know that my concern about the sno-cone was nothing to do about it going in the trash.  It was about my boy  missing out on something he loved and had earned.  That is what was breaking my heart.

After a minute or so, I saw the van doors open and I could hear Grant talking to Henry.  He was going to try again.  I know Henry wanted to enjoy his sno-cone,  just like any kid would.  But for him, right now, outside is just so very difficult.  Henry was relatively quiet (I use the word “quiet” loosely here) as he walked back to us but he was nowhere near calm.  At this point he was truly terrified of a bug getting on him or even near him.  I got him to sit next to me and he asked me to hug him and hold him tight.  I promised him I would not let any bug get on him and I would keep them all away.  He got through about 1/2 his dessert but just barely.  It was too much.  He was done and begged to go back to the car.  Grant went with him.  I sat for a few more minutes with Zach and Lucy while they finished up and we soon headed back to the car as well.

Henry was already so much more relaxed back in the van.  But that didn’t make me feel much better.  I question just about every decision we make when it comes to our kids, especially of course, when things don’t go well.   We try, very carefully, to calculate the situations or experiences  where we might want to “expand our Kansas”.   With Henry, we need to push (gently, carefully) to try more things, DO more, experience MORE.  Was it wrong to want to be able to sit outside with our sno-cones?  Should we have let Henry sit inside while the rest of us sat outside?  Should we even have attempted this at all just “on a whim”?   What was I thinking?!?  How could I not have seen the potential disaster in this?  On the other hand… it was just going for a damn sno-cone!

Clearly, this experience was DIFFICULT for Henry.  Painful, even.   Which, of course,  makes it painful for Grant and me.   We want to help him.  It frustrates us when we can’t and it’s maddening that the things we need to help him with seem so small, so simple at times.  And sometimes that can be difficult for me to accept.

*NOTE:  Zach’s family has become good friends of ours over the last year.  Zach has a twin brother with autism.  Through this whole ordeal, Zach went on as if nothing out of the ordinary was happening and continued to behave wonderfully!  We are grateful to have friends like Zach and his whole family!

Comments on: "Even Simple Can Be Difficult" (5)

  1. I totally get it…any time there is a last-minute anything…ugh…store trip, picking berries, even visiting grandparents…I actually agreed out loud when I read, “Even going for a summer treat just couldn’t be simple.”

    I feel your pain…at least I know I can blame today’s meltdowns on the full moon, lol ;)

  2. Lisa Moore said:

    Karen…I can only feel your pain and frustration with this, as we too struggle with the smallest outings to only have to make decisions thatbreak our hearts…… we love you and your an awesome Mom!!!!

  3. Donna Miglino said:

    I understand the no messy food in the van rule, but if your child has such a debilitating aversion to being outside with bugs, have you ever considered keeping a plastic tray in the van? Like the ones in a cafeteria? And a supply of baby wipes. I know we all spend lots of money on our cars, but they are still just things. If eating in the car is the only way your child can enjoy something you say he earned, it might not be terrible to find an acceptable alternative. Just a thought:) I surely feel for your heartbreak, and understand your sticking to the rules. I am sometimes too soft:(

  4. Sometimes plans work, sometimes they don’t. AS IS LIFE.

    No one failed here, at all. Move on and look forward to the next time.

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