Utter Autism

August 29, 2010

Back to Disney

Even as we continue to struggle with Adrian’s difficult behavior, we’re preparing for another trip to Disney World.  Adrian loves going to Disney.  This will be his 1oth trip in as many years. 

We’re banking on all that experience, both his and ours, to make this trip possible despite his outbursts.  Adrian knows the drill.  He knows where the airplane goes.  He knows the parks inside and out.  He even knows most of the roads in the Disney complex and where they all go.  All this familiarity helps keep his behavior mostly calm and predictable.  Or at least it has in the past.

We know from years past that overstimulation, heat and hunger are the biggest threats to his self control.  We usually handle heat and hunger by leaving the parks around 11 am.   We pick up takeout and take it back to the air conditioned cabin to eat.  Then relax there for a few hours to avoid the worst heat of the day.  A snack before we head out for the night helps make sure he’s good to go.

Overstimulation is a bit trickier to navigate but over the years we’ve developed several strategies that work for us.   The first is the wheelchair.  The whole reason we own a wheelchair for Adrian is because our first trip to Disney we stumbled across the fact that the strollers there helped him with dealing with the environmental stimulus.  Just having his own space to retreat to helped him deal with everything going on around him.  He eventually outgrew the strollers but we found the wheelchair functioned the same.  The added bonus was a buckle on the wheelchair kept him from running and helped him wait more patiently when we had to wait.  Wouldn’t we all rather sit than stand?

Next we found that noise deadening headphones provided relief and increased his enjoyment.  Even the rides he loves are so much more enjoyable when he’s not assaulted by too much sound.  Adrian’s gotten to the point where he knows when there’s too much noise for him and he’ll ask for headphones.  We’re happy to oblige.

The other major component to a successful trip is a means to communicate.  Our first couple of years we made an effort to teach and use sign language to give him a means to communicate.  It helped some but sign has never been his strongest means of communicating.   The past couple of years we’ve had the Dynavox but bringing that to the parks was too difficult.  So instead I printed up cards with screen shots of the Dynavox pages and laminated them.  Adrian was able to simply point to the pictures of the buttons for what he wanted.  Last year we skipped the ‘buttons’ and simply printed up a card with pictures of everything. 

This year Adrian is reading and writing so the picture card has been replaced by a list of written words attached to a small white board where he can write out his requests.  He already knows how to spell most of the rides, foods and activities he enjoys so the list is more as backup if he needs a bit of help.   He can also point to items on the list for a short cut but I’ll likely make him write things out since that’s an activity he finds calming and it takes up time where he might otherwise be getting fidgety.

As our whole family looks forward to our vacation, I’ve got my fingers crossed that this is going to be a great trip for us all.

August 25, 2010

Emerging from the Pit of Despair

Anyone who regularly reads the blog of a parent of a child with a disability will sooner or later come across a post of despair.  Sure, you’ll sometimes see them from parents of typical kids too.  Goodness knows this parent job isn’t easy in what ever form it comes.  But parenting a kid with a disability just throws that extra twist of challenge in and I’ve met very few parents who meet it without periods of utter frustration and despair.

The past 8 months have been extraordinary for us, for me.  The bone infection, the hospital stays, the long term IV and antibiotics, the cast, the support boot, the visits with doctors and nurses, ….   Coupled with and followed by an especially trying period with Adrian’s behavior. 

We have holes in the walls all over the house.  He’s hurt his siblings, his grandmother and me numerous times.  Fits of rage with no apparent cause have left us feeling frustrated, helpless and even a little scared.  At 5’9″ and 200 lbs. it’s no joke when he comes at you full force.  I’ve been at home alone with the kids a few times and thought to myself that he could easily knock me out…. and then what?!

I know he doesn’t mean to cause harm or trouble.  I think he’s just as frustrated with what his hormones and OCD are doing to him as we are.  So many times in the past few months I’ve found myself in that place of despair.  I want help for him and for us.  I want things to be safe and less crazy for his siblings.  I want to ease his suffering and make things better.  But there are no easy answers.

We’ve increased the meds and made some changes in how we handle his behavior.  It’s making a difference, things are better.  But his OCD behaviors are still off the charts and we’re still dealing with periods of aggression and new holes in the walls. 

I wouldn’t classify it as despair any longer.  We can live with this if we have to.  It’s eased enough I can put aside my fear that putting him in some type of institution might be the only way to keep everyone safe… for now.

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