Wednesday, February 9, 2011

Keeping Connected=Overcoming Distress?

Sometimes it's the little things.  I was talking with a friend the other night and she said her daughter, who has babysat for us, mentioned how easy Daniel is compared to some other kids.  I take that as a compliment for sure!  What people do not realize, and never will, is the effort that goes into that.  What they also don't realize is all of the planning and work and encouragement it takes for a seemingly "normal" day to look normal.  What it takes for it to be a day without Daniel biting his hand so hard he leaves bite marks that stay for a day, or that he doesn't pound his head with his own fist.  How much we have to set up a situation for him to be successful.  The down side is that then they think I over worry.  I know I don't.  Only Todd and I truly know how much it takes to get Daniel prepared for something.  We are able to leave him with other care givers because we know he is comfortable in that routine.  Preparation can be as simple as a quick social story, or as complex as years of working him into a situation.  My Aspie from Maine blogger talks about it beautifully in her most recent post.

Many of you know about Daniel's fear of the "evil Belle Tire mascot".  It has paralyzed him from going to restaurants or being anywhere that has TVs playing.  He lives in constant fear that this mascot will appear on the TV and send him into a panic.  We still don't know the back story of that fear, we just know it exists and it plays a huge part in where we can go as a family.  I have written about it a lot in my blog over the past few years. In fact one of my followers is from Belle Tire.  They have even written me apologizing for the fear it causes Daniel.  I appreciate the sentiment, I just wish it helped Daniel in some way. 

Last week I made a trip to the Detroit area (home of Belle Tire!)  to celebrate my cousins 40th birthday.  While I was gone Todd took the boys out to dinner.  Somehow he got Daniel to go to a new place.  According to Todd he didn't really DO anything, he just gave him a choice and Daniel chose it.  This is why you never give up trying to make changes, because just when you think you know the answer.  They surprise you!

Just to see if it was a fluke, we went there, all four of us, last night.  After Daniel's Tuesday swimming we usually all meet up at a local cony island "Sparty's".  Daniel loves Sparty's and I do too. But I'm a little burned out on it to be honest.  I love how they treat Daniel there.  The cook sees us walk in and immediately puts Daniel's burger on the grill.  He knows what Daniel will order and he starts it immediately.  They also still allow him to order with the waitress, even though they know what he'll say.  It's good practice for him, and they seem to love his routine and good nature he brings in every week.  But Sparty's may be missing us.  Last night we went to another local restaurant.  It's called Crunchy's.  It's a tiny little "dive" (which I say as a compliment and with love).  Todd and I spent MANY hours in this place before kids.  It is also a bar, but has a pretty good menu and some of the best burgers in town. 

Why have we not been there before?  Because there are TVs everywhere!  And I mean everywhere.  For such a tiny place there is nowhere in the entire place that you can't view a television.  This is because it is a college establishment and they want the crowds who go to watch college sports.  Todd and I have known each of the owners of this place.  Why the change?  Why did Daniel decide it's OK?  Well, I think because Todd told him 'it's safe' and he trusts him.  Over the years he is more calmly learning to accept when we tell him something is safe. We stay connected to him and give him encouragement to help overcome his fear.  Tied into overcoming a fear is of course a reward.  The reward here is that Crunchy's has a PINBALL MACHINE.  Daniel loves pinball.  So the fact that after his order is placed he can play pinball is a big deal.  Zachary is thrilled with Crunchy's, he loves the burgers (he has good taste) and Todd and I are happy to be back at a place that we have always loved. 

So last night after we told our waiter what we wanted for dinner, I pulled two dollar bills out of my purse, one for each boy.  They slid out of the graffiti covered booth that the local college students have "decorated", each with a dollar in hand, in search of the change machine.  Todd and I sat back as the quarters dropped into the pinball machine and he looked at me and said "this almost feels like a normal dinner out".  We were both relaxed and so were the boys.  I could tell Daniel had no anxiety despite feeling under the weather.  To those around us, they would probably not think twice about it.  They might think it's easy for us to go out for a burger and fries.  They would of course be wrong.  It has taken years and years for that to happen.  He was 3 the first time he freaked out and refused to go to a restaurant because of TVs.  He is 14. So when people think Daniel is easy to be around, I am flattered.  Because no matter what it looks like, if we weren't constantly working with him, he'd never go somewhere like this.  Our  progress may be slow, but it is progress none the less.  We are giving him the tools to manage in the world and the best part is he's taking them, when he is able to. 

Aspie from Maine compares her story of riding a bus to a quote about floor time "If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” ..... “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.” (Melissa Fay Greene, New York Times, 17 October 2008).  I love that.  It amazes me that I came onto my blog today to write about going to this restaurant and Daniel keeping engaged and calm only to read this post.  They are really both about the same thing.  And I get it.  I know how hard it was for Aspie to do what she did.  I've observed it with Daniel for 11 years.  Hurray for staying connected! 


Kate said...

I love the way you integrated my blog post into yours - thanks for doing so! :) I think you're right in many ways. A large part of my planning for the bus, though, involved visualizing what I would do if the fragrances were too much for me, and having an escape plan if they were (although not a very good one cus getting off of the bus in the middle of nowhere = not a good idea).

Having that guy there to distract me definitely lessened the fear and the reactions though. Maybe by the same token your son finally believing your husband when he said it was safe lessened his fear. The question in my mind, though, is what would have happened if the worst had happened? If he saw the Belle Tire commercial? Would the connection with his family have been enough to override the negative reaction to it? That's something I would be curious to know, both for him and for myself.

Thought provoking. :)

Kate said...

Hi, I see what you mean. I suppose the only way to replace it would be if you knew what the trigger was.. but that seems elusive. Hmmm. I would suggest daily visualization exercises but I doubt he would consent to visualizing it daily, lol. I wouldn't anyway. PS I went on this bus again today,. That guy was not there but it was ok not great but ok. bus only 12 min late instead of 20. weather was ok waiting. i listened to my music and ate crackers. only 4 ppl on it instead of like 30 like last time. I greeted the driver warmly and tried to chat with him a little so I would stay connected to people instead of my thoughts. It worked but it was like borderline. I dunno I might take a break next week. But I guess I should be glad I was able to do it.

So windy and cold when I got into town; I didnt walk around like I did last time. Did however meet 2 friends at whole foods and then go grocery shopping and get lots of good things. except the dang crackers but that's another story. and i had a very thought provoking conversation with one of them at the very end which probably makes it all worth it. I spent way too much at the candy store thinking it'd be fun to buy nostalgic candy for a get together tomorrow but oh well lol.

I got to pick out all my bananas though....I get like 30 a week and I pick out each one individually, lol. Something my shopper doesn't do quite as well. I doubt she stands there surveying each banana for size, ripeness and color before individually counting up to 27 or so. I like to be unique. lol For some reason the cashier didnt make the usual "Wow, you have a lot of bananas" comment. I almost feel cheated. Maybe it was because I pre-empted him by making a sculpture out of bananas on the conveyor belt while waiting in line and commented on it to him. His response "Well, I guess we better take those in two bunches" lol. I gotta stick to coming later, I get the better cashiers that way, that have more of a sense of humor (usually).

Usually I don't have enough time to build sculptures out of bananas because thats the first time I've had to wait in line there in a very long time. Shopping at 8 or 9pm so beats 5pm on a Friday...rush hour for shopping.

Whole Foods is a visual feast that I always enjoy. So as I sit here rambling about things that come to mind, I am also trying to justify to myself going at all, ie bus and such. But I think I might have answered my own question. Even if the only thing I do all week to get out of the house is go shop at whole foods, it's probably better for my mental health than doing nothing (i do take walks and stuff).

Hmmm I just had an idea. What things does Daniel like the most.. any kind of food, video games, action figures or so on? I wonder if there is some way to .... I dont know make belle tire shaped cookies or ...somehow otherwise pair the two stimuli....but that could backfire... if it was me it could very well make me start hating both bad idea.

Subliminal tapes? Haha that was mostly kidding.

Hypnotherapy? Hmm I dont know much about that but I've heard some people say it can work with traumas and such so maybe with phobias too. EMDR?
Anything that could lessen the emotional intensity he feels about that symbol would be good.
I think if I could lessen my emotional intensity, I would still react to chemicals and fragrances but it would be manageable.
Unfortunately finding a therapist to work with me has not been possible. Mostly cus I cant go in the building. Ha. That and they never call me back.

Oh well Ive rambled on for long enough. hope you don't mind. I wasn't going to but my censor to to speak is off because of how tired I am,,,needed something to do before I went to bed though.

By the way, did you know the character limit on comments was 4,096 characters? I didn't, until now, lol.