Our journey in the Autism Spectrum

Posts tagged ‘fun’

Even Simple Can Be Difficult

[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!

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You WILL Have FUN

I was holding my breath all the way to the school this morning. At least I don’t recall actually breathing. We pulled into the familiar parking lot. The anxious moments for Henry began almost immediately. The lot was littered with cicadas, living and dead. Others buzzed around us. He did not want to get out of the van. With some encouragement from big sister, Molly, he got out and was walking quickly with her. I had Lucy in tow. Once inside I could see Henry relax. That is, until we reached the summer camp classroom. He was well aware that this was not his regular classroom and he stopped short just outside the window looking into the classroom. He tensed up again and didn’t want to go in.

It was here at this point I remember taking a deep breath, saying, “It’s okay, Hen. You can just look in the window while I walk Lucy inside.” As I looked up I saw Miss K, Henry’s language therapist during the regular school year. “Look, Hen, it’s Miss K. See? She’s here in the building just like during school.”

Miss K came over to say hi and offered some words of encouragement to Henry. I don’t know if he even looked at her or heard her words but as Lucy went through the door of the classroom, Henry followed. He made a straight path to the backdoor that opens up to the playground. Lucy found her cubby right away and put her things in and made herself at home. Henry on the other hand was as stiff as a board, not looking at anyone, not talking, not moving. I recognized this typical posturing instantly. Fear. Anxiety. Oh, no, little dude. Please. It’ll be okay. I was able to get him to walk back to me to find his cubby and put his backpack inside. After giving him some time to look around the room and meet his summer camp teachers I told him that I needed to go to get Molly to her camp.

“Henry, I’m going to take Molly to her camp now and she is going to be right in that big building next door. And Lucy is staying here with you and our friend will be here soon too! Did you hear what your teacher said? You guys are going to make paint today!”

I could see right away, the fear and anxiety from the moment we were outside the classroom door. He stands so quiet and still, not moving, not looking at anyone. When I told him I had to leave his eyes got wet with tears and he just kept standing there with barely a perceptible shake of his head, “no”.

“Hey, dude it’s gonna be okay. You’re going to have fun here.” I tried to sound convincing. I smiled at him and hoped he wouldn’t notice the tears I was trying to hold back in my own eyes. I can see and feel the pain of his anxiety!  I offered to walk around the room with him. He walked over to a table that was ready for making paint.

“How do you make that, Mom?”

“I don’t know. You’ll have to listen to your teachers today. They’ll show you. Why don’t you go over to the carpet and they’ll tell you what all you’re going to do today. It will be fun!”

Molly said softly to him, “Yeah, Hen. You’re gonna have lots of fun at your school today. And I really need Mom to take me to camp now so I can have my turn.” (She is attending band camp at the high school that is right next door).

Lucy was checking out the books and things they had on the carpet area with a couple of other kids that were already there. She was being a bit shy and quiet but she was already making her way. When our friend arrived Lucy jumped up to greet her and I could see Henry relax again but only barely. He slowly moved to stand even closer to me…okay, now what? Switch up tactics a bit. A small, desperate fib…

“Hey, Hen, ya know what? Miss B is right down the hall today too! So ya see, Miss K is here and Miss B, just like always. They’re here and Molly will be right next door. Lucy and Ellie are going to be in this room here with you and you guys are going to have fun!” (At this point I guess I am figuring that the more I tell him how much damn fun he is going to have the more he will actually have~yeah, because we all know how well that works!)

He just continued to stand so still, just barely shaking his head but I saw his shoulders loosen and drop when I told him Miss B, one of his pre-school teachers, would be in the building. I just hoped I hadn’t made a mistake in telling him that for fear that he would want to see her. I had no idea if she would be there today or not as summer school doesn’t start until next week. It’s not something I do with him. Lie like that. I felt even worse than I already did as the words tumbled out…in my own anxiety I panicked.

This camp HAS to work. This day camp is set up for mainstream kids. Henry goes to this school but he has been in a special education classroom. We thought it would be good for him to experience a more mainstream situation before he heads to kindergarten in the fall. Mainstream kindergarten in which he doesn’t qualify for a lot of support…this camp is only two half-days a week. Baby steps but steps nonetheless. Please work! Please have fun! Please like this day camp.  Show me that you can learn to adapt and cope and be near regular kids!

“Okay, guys, I’m going now.” Lucy came over to join us in good-byes. I kept my eyes on Henry wondering how this was going to go.

He looked up at me. “Five?” he said quietly. We gave each other a high-five.

“Knucks?” he said. We did our exploding knucks.

“Down?” I leaned down. “Is it Tuesday?”

“Yep, Hen, it’s Tuesday.”

I got my raspberry. Our good-bye ritual wasn’t being done with his usual enthusiasm. It was quiet and subdued but he was going through with it which told me that he was okay with staying or at least he was resigned to it. He did the ritual with Molly.  Lucy has adopted her own version of this ritual so I had to go through that with her as well.

Finally, Molly and I were out the door. We chatted with our friend on the way out of the building as we swatted and danced around the cicadas that were flying around the parking lot. I drove to the back of the campus where I dropped the oldest off for her camp. In the quiet van, alone, I cried as I drove home. Just please have FUN, dammit!

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