A Little Desensitization Goes a Very Long Way
Tired But Okay

Medical Procedures & Sensory Sensitivity Training

Pedal powering it

After the Big Day of the Blood Draw, Wednesday was a back to normal day: Bus, school, bike, food, iPad, bed.

You'll notice I only typed 'bike' once, in contrast to last week's bike/bike/bike/run and triathlon days. All of this was done during days of record-high heat.

I've been thinking that rabid exercise and activity and minimal sleep (those 5am wake-ups) are Charlie's response to a heat wave. Most people are inclined to do the opposite, to reduce physical activity and take it easy. Charlie clearly was doing anything but that -- he responds to the weather the way the weather is -- and this week, with some cooler ('high 80s/low 90s = cool after last week), he's slowed down, finally weary.

Charlie seems to be internalizing the need to wake up for his 7.35/7.45 am bus (it seems to come at precisely at either time), so he woke up on his own on Wednesday and got dressed in his swimsuit to swim at the school pool. He ran onto the bus but yesterday, like Monday, he was not his usual self at all. In the pool, he was vexed and then smiling; he plodded through his academic programs, didn't want his morning snack and got very upset after lunch.

My first thought on reading his teacher's note was that Charlie was still, again, recovering from last week and, more immediately, from the Big Blood Draw Day. He also must know that he's down to the last two weeks of summer school and, therefore, his last weeks with the teacher he's had since he started at the Big Autism Center in November of 2009.

She's wonderful. I'm so going to miss reading her notes. It's time for Charlie to move onto another classroom.

And generally before any big change (my parents visiting, me going to Greece), Charlie starts getting upset two weeks in advance. So he's right on time.

Once off the bus on Wednesday, Charlie took his time snacking and then, of course, it was bike ride time. He didn't ask for a second one and, after dinner, was highly content just being at home listening to his iPad. Noticeably, he didn't play the Byrds -- who'd been on pretty much every single moment for at least the past two or three weeks -- at all. (Though I can still hear the bit about 'bootheels wandering' in my head.)

I'm feeling that we've gotten past a sort of milestone or obstacle or whatever after the blood draw. It's been on my mind to do it for the past several months. Charlie takes Abilify for anxiety and some bipolar symptoms and the neurologist has said it's necessary to check how Charlie's liver is functioning. So it behooved us to figure out how to get Charlie to have his blood drawn without seven clueless (there, I said it!) people holding him down.

At the Ride For Autism in June, I found myself standing at the starting point of the race and talking to the director of AutismNJ. I don't know how I mentioned about Charlie needing a blood draw, but it came up. She insisted that, with the right technician and practice, Charlie could do it fine (she's seen Charlie at a previous school). She also told me she had a presentation about teaching autistic children to undergo medical procedures and sent it to us the next week.

The main parts of the teaching procedure were (1) a desensitization program and (2) a hat.

I'll start with (2) which we ended up not using with Charlie. The presentation had a photo of a child with a baseball cap placed on his head at just the right angle so he couldn't see what was going on while his blood was drawn. We practiced the hat a bit but Charlie didn't need it (and he's not a hat guy).

Two weeks ago, I shared the presentation with Charlie's teacher and she and the aides set up a little desensitization program. They tied a rubber tourniquet (from the school nurse) on his arm, dabbed him with alcohol, gently pricked him with a paper clip. It was a very minimal program but it clearly did the trick, based on Charlie sitting and having five vials collected.

The desensitization program (1) was successful for Charlie because it really helped him know beforehoand what he would feel during the blood draw: All those different textures (rubber, cool/wet alcohol, prick from a safety pin-as-needle). Charlie -- hate to say this -- does seem to have either a high tolerance for pain (years of SIBs...), or a very delayed reaction to it. The needle prick was not really the worst of it for him, but all those other weird parts of the procedure. Practicing got him used to the tourniquet etc.. The last step was that he had to hold out his arm straight and still; he flinched and retracted it twice on Tuesday but put it back after Jim and I coaxed him very minimally and Jim gently kept Charlie's arm still.

After the lab tech pulled out the needle I felt like cueing the violins. We must have tried at least a half-dozen times to go to LabCorp with Charlie, always with bad results (and no blood drawn) and last year's experience getting his blood drawn at a local hospital was just ugly. A major accomplishment of the summer has been completed.

No wonder our household is worn out.

 

Comments

emma

Will Charlie have to have the liver function checks done frequently? This is what we do for Dimitri (and also as it turns out the seizure meds may be affecting growth hormones..).

Dimitri knows the procedure well and got very familiar with a local microbiologist, (goes in to say hello, sits in the "chair" and asks for the tourniquet to be put on). But she works alone, now I'm thinking maybe lying down would be better as Dimitri flinches a little when the needle is inserted but the biggest problem is he doesn't wait for enough blood to be drawn. We have also done this at a hospital a couple of times, there are staff there prepared to hold him still (so as not to damage a vein), but if they are relaxed so is he and he was okay with this too. There was no 7 staff or security guards!!

Anyway, I'm waffling, but I too think with practice Charlie will get used to it, Dimitri seems to quite like the procedure/routine of it, just a bit of patience lacking for the blood to be drawn (and a problem with latex gloves:))

Mamacate

Way to go Charlie and family! We resorted to PRN meds, and once he had done it successfully, our H was okay (he needed them weekly for a while because of his meds). No meds requiring that lately, thank goodness, but if we wind up in that position again, I think we will try this strategy. Makes perfect sense (and it's the same here--the stick isn't the problem, it's the whole experience).

Sarah

I'm glad the sensory approach worked so well. Hats off!

Was this done alone or combined with a social story? Could such a sensory approach be used in other situations? Perhaps getting someone used to the things and sensations he is planning to encounter before or instead of supplying a social context which could be tough to attend to while learning how to handle the things fully taxes the mind.

I am going to try this with the next new thing. Thank you for this helpful post.

Barbara

Excellent! Happy for all 3 of you.

Louise

That desensitization system worked very well - congratulations to EVERYone.

Kristina, I came across this on the web and immediately though of you and Charlie. It's a video of tests of the damage caused to iPads by dropping, with and without the Smartcase.

http://www.youtube.com/watch?feature=player_embedded&v=_vrJ83dEec4

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