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Sunday, August 4, 2013

Whatever Gets You Through The Day

A couple of weeks ago, we had a follow-up appointment with LeBonheur Neurology.  This was our first follow-up appointment since Korban was in the hospital, and it was with one of their doctors who travels to Tupelo to the clinic there.  This made it easier on us, and I certainly appreciated that. 

I went by myself, and took both kids, which was an adventure, but overall it went really well.  We liked this doctor.  I was sort of nervous about meeting her—remember the doctors in Memphis were nice but gave us some pretty dire “what if” scenarios.  This lady was nice and we didn’t have any really hard conversations, so that was a good thing. 

I mentioned before that Korban has been seeing a play therapist this summer—she had talked to me about the possibility of him having Tourette’s and I wanted to bring that up to the neurologist.  I asked her about it, and she agreed that he has enough tics to probably qualify for a Tourette’s diagnosis IF he did not have autism.  Confused?  I was too.  The autism umbrella covers so many different symptoms, but they are not expressed in the exact same way in people with autism.  After talking with me for a while, she said that Korban showed MANY features of OCD (Obsessive Compulsive Disorder) and some features of Tourette’s; however, she did not officially add these diagnoses.  She said that some doctors tend to be “lumpers” rather than to list everything out, and she falls into that category.  She felt that his autism diagnosis expressed all his symptoms better than adding additional diagnoses. 

I was okay with this, because it wouldn’t change anything however she listed it.  It wouldn’t open new doors to us, as far as new therapies or medication.  If it did, I would be all for it, but for now just the knowledge is enough for me. 

She talked to me a lot about the OCD symptoms, as she feels that this may be the root of his aggression.  No one had ever put it like that to me before, and I was intrigued.  She had reviewed his file before seeing us, and brought up his aggression.  I told her that we had always been told that his aggression stemmed from his inability to communicate; however, the aggression has not decreased even as his ability to communicate has increased.  She explained that children with OCD feel a deep desire to control everything around them because there are so anxious.  Even grown people aren’t able to control everything around them, much less a little kid, so this leads to tons of frustration for them, which can lead to them lashing out.  She told me that she has quite a few patients with just OCD, no autism or any other complicating factors, and that they are “hell to raise.”  (Her words, not mine.)

She reiterated his need for intensive behavioral therapy and told me that we were already probably getting more than most people she sees.  Although I have to say, it’s clearly not enough!  But the rest of the appointment went smoothly and she plans to see us back in six months.

After our appointment, we went to Ballard Park (or as the kids call it, “the duck park”) and played for a while.  It was nice.  We hadn’t been there for a while, and I actually remembered to take bread to feed the kids’ beloved ducks with us this time.  They were happy.  So were the kids.  ;)
Here's an action shot of Korban feeding the ducks.
We found some ducklings.
And while we were admiring the ducklings, these big boys approached Korban for a hand-out!  He wound up just dumping all the food he had on the ground in front of them.  I don't blame him though--they were pretty persistent.  Look at Korban's face!
Selah got close enough to pet one!
He was singing "Jake and the Neverland Pirates and meeeeeeee!"
Sliding together

But back to the OCD business, as Korban gets more verbal I am more aware of just how much he worries and obsesses over things, and yet I know there’s so much more going on in his head that he’s not verbalizing.  He asks over and over if our house is going to fall down, despite our reassurances that it’s not.  He still has a great deal of separation anxiety and worries that me and Brad are going to die.  He loves holidays, which is much more positive than the other things I just mentioned, but he obsesses over them.  Halloween is his current obsession, and I bet he asked me over a hundred times the other day if it was Halloween yet.  He knows when Halloween is (October 31st, he told me that about a hundred times too) and he knows that it isn’t quite time yet, but he just can’t get it out of his mind.  And he always needs to know what’s going to happen next.

I had been talking to his ABA lady about this, and she’s been working on a picture schedule for us.  I used to think that PECs symbols and such were mainly for kids that were non-verbal, but that is NOT true!  Even though Korban is highly verbal, he’s also highly visual.  I can tell him a million times that we have to eat lunch and fill the car up with gas before we go to the park, but it doesn’t matter.  A picture really is worth a thousand words in this case. 

I had also talked to some other autism parents who were having great success with the picture schedule, so I was encouraged by them.  I went around and made pictures of a lot of the places that we frequent.  I kind of felt like a stalker doing this, but it was interesting.  Selah asked me why I was making so many pictures, and I tried to explain the whole concept of a picture schedule to the kids.  When I finished Selah said “Oh Mommy, are you doing this because you keep forgetting what we are supposed to be doing?”  At that point I realized that pictures schedules aren’t just for people with autism.  ;)

Brad also helped make pictures and I have to say he’s better at it than I am.  When we did Korban ‘s infusion last month, we took pictures of places in Birmingham that we go to.  I was supposed to be snapping a picture of the McWane Science Center as Brad drove past it, but when the time came I was busy looking at something on my phone and missed the opportunity.  Brad laughed and me and said “You’d be a terrible gang member.  They’d want you to do a drive-by and they’d pull up to the place and you’d be like ‘Look!  Squirrel!”  Which totally cracked me up.  He’s right, but I’m pretty sure that’s not the ONLY reason I’d be a terrible gang member.

At any rate, we got all of our “drive-bys” finished and our ABA lady also took pictures, and pulled some icons off the internet for us, printed out the pics and laminated them for durability.  Because let’s face it, those pictures may go through a lot at my house.  I met her and got the box of pictures from her one day a couple of weeks ago.  One autism mommy that I talked to uses a five gallon paint stick for her son’s schedule, and she graciously brought me some to use for ours.  Our ABA lady provided us with some Velcro and also some clothespins so that we could choose how to attach the pictures to our stick.  Incidentally, Brad refers to our schedule as the “stick system” but I told him I thought saying “picture schedule” sounded nice than telling people we were “on the stick system.”  Heh.

The day I got the pictures from the ABA lady, I met Brad over at his parent’s house so that Selah could go to VBS with her Mammaw.  I planned to take Korban on to the house and Brad was going to stick around and bring Selah home with him.  I excitedly showed him the box of pictures and we started going through them together.  He was worried when he saw the picture I made of his parent’s house, because I made it facing the front of their house, when we usually enter through the back.  He didn’t think Korban would recognize the house that way.  I held up the picture and asked Korban what it was.  He glanced at it and immediately said “Mammaw and Grandpa’s house.”  I looked at Brad triumphantly, and he proceeded to go through all the pictures with Korban.  He knew!  We were thrilled. 

As we were going through the pictures with him, Korban latched onto the picture of his ABA guy as soon as he saw it.  He insisted on carrying it around with him (even though we had no plans of seeing him) and was still clutching it when I loaded him up and we headed home. 
Here's a picture of him making silly faces at the picture.
 He was so quiet on the way home I thought he had fallen asleep.  I turned to look at him, and he and the ABA guy were both staring at me.  I almost ran off the road.  Even when we got home, he refused to turn loose of that picture, although he did try to put it down the air vent at one point.  I frantically yelled “No Korban!  Don’t put Mr. (insert name of ABA guy here) down the air vent!”  And that’s one of those sentences I never imagined myself saying until I had children…

We are still getting accustomed to the picture scheduled.  As I’ve mentioned about a thousand times before, Brad and I aren’t exactly the most organized people in the world.  *Ahem*  But we are learning, and I think this schedule thing is going to be good for our whole family.  Selah loves it too!

Last Sunday we got the pictures out and started clipping them to the stick and explaining to the kids what was going to happen that day.  You know Korban has been really struggling with sitting through a church service.  We showed him the picture card for our church and told him it was “church day” as he calls it.  We asked him if he wanted to go out and eat afterwards, and he said that he did.  We let him pick where he wanted to go, and he picked the picture for New China Buffet.  We told him that if he was good in church, we would go eat afterwards and we also picked out the cards for everywhere else we needed to go and showed him those as we clipped them on. 

When we got to the church, he wanted to hold the New China Buffet card, so we let him carry it.  He held it through the whole service and every time he started to talk or get wild, Brad would tap on the card and remind him and he would settle right now.  Amazing.  He lasted through the whole service for the first time in I don’t even remember when.  Such a blessing!  I told Brad that our boy may be the only kid in the whole world who held a picture of Chinese restaurant in order to successfully sit through a worship service, but WHATEVER WORKS!  Seriously, I firmly believe that if it isn’t harmful and it HELPS, do whatever you can to get through the day. 

There was one thing about the picture schedule that I did not foresee…the kids got together without me the other day and planned what they thought the day should look like.  Let’s just say it involved a lot of bouncy houses.  It was hilarious, but seriously, how clever are they?  I told our ABA lady about it and we laughed but she did say they could certainly help pick out the schedule, I just had to make sure to give them doable options. 

Pray for us as we continue to work with the schedule and pray that we all learn how to ease Korban’s anxiety and manage his obsessions.  Coping skills are very important!  I really feel like these pictures are a big step in the right direction, and we sure appreciate our ABA lady getting it all together for us. 
Here's Korban after a successful Sunday at church.  Brad was still sitting there reading the church bulletin when I got Korban out of his car seat, so he climbed in the front to keep Daddy company.  :)

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