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Thursday, August 30, 2012

The Happy Ball (Despite the perky title, this one's not for the faint of heart!)

 Korban is pinching himself to pieces.  Literally!  It started a few weeks ago, and he pinches his face, neck, arms, and legs.  Basically any exposed area he can get to.


This is what his legs look like. 

That's his face and neck...

And here's one of his arms.  His arms are actually looking a lot better.

 I don't really know why he's doing it, except that it seems sort of anxiety driven, and could be a stim (repetitive behavior--he has lots of them and he likes to change them up to keep us on our toes I think.)  He's had several worrisome habits, and as soon as he got over one he replaced it with something equally bad or worse.  A couple months ago he twirled his hair so much he started getting a bald spot on the top of his head.  We made a trip to the barber shop and he got his first haircut with clippers, and it was the shortest haircut he's ever had.  Incidentally, it was also the only haircut he's ever had that he didn't scream the whole way through.  Anyway, his hair was too short to twirl, so that pretty much took care of that habit.  Which moved us on to the next item:  throwing up.  Seriously. And I'm sorry to all the people I just grossed out.  Vomit is pretty much my kryptonite--I can't even stand to see people get sick on tv, when I know it's fake.  So when I say that I cleaned up so much puke recently that I'm so desensitized to it I could probably eat a sandwich with one hand and clean up sick with the other, I hope you understand just how much throw up I am talking about here.  (By the way, I haven't tested the whole desensitization theory with children who don't belong to me, so don't ask for my services on that matter just yet. ;)  Anytime Korban got excited or upset--which is pretty frequently--he threw up.  I think he could do it on command.  Which totally befuddles me because I dislike the whole process so very much.  He's always had a sensitive gag reflex and is extremely sensitive to different food textures so gagging/choking/throwing up while eating has always been a common thing for him but this took it to a whole new level.  When we went on vacation, he got sick every time we went somewhere because he was excited.  We have an "emergency kit" for our van that includes a bucket, garbage bags, antibacterial wipes, Lysol, extra clothes for all of us, etc.  Enough about that and sorry for the gross-outs.  A few weeks ago, Korban's doctor switched him to a different medication.  We couldn't see any negative side effects from it, and right away he seemed calmer and a little less aggressive.  Also, he stopped throwing up every day, which was awesome.  But then the pinching started...  So some of the family thinks the pinching is a side effect of the new med, but I really don't.  I have a call in to his dr, just to be sure, but I really think it's just a part of his autism and we are going to have to find some way to deal with it.  It's bad though, and it's very noticeable.  He has bruises and broken skin from all the repeated pinches.  And I can't just make him stop.  We have to physically hold his hands and restrain him from it and that just makes him more frustrated.  We tell him to stop, but he just does it all the more.  He does it everywhere--at home, at school, at church.  Brad went and got him from Sunday School a few weeks ago because he was pinching himself so bad and they couldn't make him stop.  I've started dressing him in long sleeves because his arms were looking so bad.  I hate to do that, since we live in MS and it's hot, but I don't know what else to do.  Besides that, the long-sleeved shirts seem to be a comfort to him.  When I put a t-shirt on him now, he immediately wants to take it off and asks me for a "big shirt."  He even wants to sleep in long-sleeves.  But I haven't been making him wear long pants, and his legs are looking rough.  He's pinching them more since he doesn't have access to his arms anymore.  He also is pinching his neck more, and I know that would get worse if I made him wear pants.  What am I going to do, dress him in a turtleneck and jeans and give him a heat stroke? Ugh...no easy answers.  So I messaged my new friend Kerry Magro, who you can check out here www.autismafter16.com, or  www.autismspeaks.org (look for Kerry's Korner), or here www.myautismmyvoice.com.  I was very grateful to him for taking time out of his busy schedule to help this worried mama! His suggestions were to figure out if it was truly a stim or if Korban liked the pinching sensation.  If it was a stim, then try to find a replacement such as letting him squeeze a stress ball.  If it's the sensation he's after, then try social stories to teach him about how it's not a good idea to pinch yourself.  I got right on this, and started trying to find something for Korban to pinch.  We tried a couple of small squishy toys such as a stuffed football he has, but he wasn't really into it.  I texted Brad, who works for the department of mental health, and asked him to bring a stress ball home from work--I didn't explain, I guess he thought I was having a bad day.  Ha!  But then I spotted a small hackeysack type ball just lying in the floor.  It was bright yellow with a smiley face on it, and Korban loves smiley faces so I thought it just might work.  I gave it to him and explained that he could pinch the ball if he needed to pinch something, or he could squeeze it when he gets nervous.  He took the ball and asked me if he would hurt it if he pinched it.  Sweet boy!  (But not worried about his own skin in the least!) I explained to him that he wouldn't hurt the ball at all and showed him how it had a smiley face on it so we know it's happy.  We started calling it Happy Ball, and it worked splendidly.  So well, in fact, that it started to lose the little pellets inside it within less than an hour of Korban's squeezes and pinches.  I think my little man has some stress.  We got ready to go to church, and I made sure to take "Happy Ball" with us.  We never let Korban take toys in church or school, but I was more than ready to make an exception for this one.  He actually wanted to leave it in the van, because he knows that we don't normally take things in, but I talked him into taking it.  We dropped Selah off at the nursery, and then I went upstairs to take Korban to his classroom.  We had just crossed the walkway over the church foyer when I looked back and noticed that he wasn't carrying Happy Ball anymore.  "Korban, where's your ball?" I asked, feeling a little panicky.  He didn't say anything.  I had a flash of inspiration and went and leaned over the railing to look down.  Sure enough, Happy Ball was flat on the foyer, a floor beneath us.  He was still smiling though.  I left Happy Ball where he was and took Korban on to his class and then I caught the elevator back down to the foyer and stuck Happy Ball in my purse.


This is Happy Ball after his second story dive into the foyer.  If you look closely, you can see some of his guts are hanging out the back.

The top part is the railing Happy Ball dove over.  Long way down!

I plan on sending it to school tomorrow if Korban will take it and the school doesn't mind.  I don't think they will.  The bigger problem will most likely be Korban tossing it overboard whenever the impulse strikes him.  But it works so well when he uses it!  He hardly tried to pinch himself at all when he had that in his hand.  I was so pleased.  I know we are going to need a back-up soon because this poor ball isn't going to be able to withstand such harsh treatment for very long.  I experimented after Korban went to sleep tonight and filled a latex balloon with rice and tied it closed.  It's just a small little blue pouch but it feels nice to squeeze and that might work well with his sensory issues.  We will see...  He's also having a lot of issues with separation anxiety.  He was sick last week and I had to pick him up from school early on Tuesday.  He missed Wednesday and Thursday, and Friday was our day to go to Birmingham for his IviG infusion.  So he was hardly in school at all last week, and that got him off his routine, and well as the round of antibiotics he had to take. Those always make him a little wonky. This week has been really tough at school, with him having meltdowns and crying when they can't tell what he's upset about. It's so sad.  Plus he asks for me all day long, full of anxiety.  "Mommy coming?  When Mommy coming?  Mommy come at 3:00?" His teacher said that he probably said it 500 times yesterday, and I totally believe she isn't exaggerating.  He's obsessive like that, bless his heart.  And once he gets locked into something it's almost impossible to budge him out of it.  He cried when I took him to speech therapy yesterday, and I had to go back with him and his therapist and stay in the room with him during his session.  He's been getting therapy at this rehab center since right after he turned three and I've NEVER had to go back with him like that.  He cried when I dropped him off at his class at church tonight, which he pretty much never does.  I hate seeing him like this.  I feel like people think he doesn't trust me to come back, but I've never left him before.  I tell him that we always come back to get him and try to reassure him, but he's so clingy to me. Even when we are home, he has to be where he can see me at all times and he cries for Brad if he is late getting home from work at all.  I don't understand it, but I'll take it over him ignoring me any day.  I just wish there was some way to ease his anxiety.  I'm looking at doing a picture schedule for school, to help him with transitions and so he will know what's coming next.  (That's very important!)  I also thought maybe I could put a picture of me at the very end, so he will know what activities he has to do before Mommy comes to get him.  We've had a lot of changes--a move over the summer and now a new school.  He's done amazingly well, but I feel like it's sort of catching up with all of us and it just breaks my heart to see him cry and hurt himself.  So please say a prayer for us!  I don't want to leave this on a sad note, so on a lighter note...here's some fun pics.  Some of these go with my post from earlier in the week--Tigger has quite a following so I wanted to include some shots of him.  ;)

This is Korban with Tigger on Panama City Beach during our vacation.  We all had a good time.

This is after we got home from vacation and Tigger apparently bragged to Baby Pooh about his adventures on the beach.  Baby Pooh went for a swim in the toilet, which then earned him a spin in the washing machine.  Korban loved watching him go around and around.  So much so that he started dunking all his animals in the toilet just to see me wash them.  The rule now is that if one of his toys gets dirty, I wait until he goes to bed to wash it.  Of course, he's not allowed to play with it while it's dirty!  But our washer has a clear lid and he just loves thing that spin.  Oh, and please note Tigger's stylin' sock-hat.  :)


This is when Tigger "bounced" up in the chandelier.  And in this picture, he's sporting one of his toboggans. 

This is Tigger "pooping in the woods," according to Korban and Selah.  (Dear Tigger, I apologize for posting this on the net.  Total invasion of privacy!)

And this is one of my new favorite pics of my kids.  My world!  :)

2 comments:

  1. Great post. My son sometimes pinches himself, but mostly bites his arms. We haven't figured out how to stop it, and can't find a replacement. It's hard, and never fun to watch your kids hurt themselves.

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  2. Thank you Leslie! Korban bites himself too, although I forgot to mention that in my post. He went through a phase where he had bites marks on his arms almost all the time. He mostly bit himself when he was angry over not getting his way, or over being placed in time out, so it wasn't really a stim. Thankfully, he's not doing that as much now, although he may start back up since I said he wasn't doing it anymore! ;) You are right, it is very hard to watch your child hurt themselves! Best wishes to you and your family.

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