Utter Autism

July 31, 2007

Disney Pages

Even when a trip isn’t on the immediate horizon, we talk about Disney World a lot around here.  With a trip to look forward to, it’s mentioned constantly.  Adrian’s never been able to participate in these discussions… until now.

In preparation for our trip I’ve programmed the Disney World pages.  There’s a separate page for each of the parks, the airplane and the cabins where we stay.  The airplane page has buttons to say “take off”, “land”, “airplane”, “Disney World”, “music player”, “bathroom” and “when”.   Combining the buttons lets him talk about the airplane taking off, landing and going to Disney.  Or he can ask when the plane will take off or land.  He’ll have his device on the plane and be able to ask to use the bathroom or his music player.  I also included a button with a picture of a bored child which speaks random phrases like “Are we there yet?” and “This trip is long.”  Adrian will probably get a kick out of driving Dad nuts with this button!

The park pages have the names and pictures of all the rides.  On the side bar are phrases like “I like”, “I hate”, “is fun”, “is scary”, “let’s go”, “next”, “again” and “I don’t want”.   I was aiming for this page to be functional year round.  By putting the rides together with these phrases, Adrian can say more than just what he’d like to do.  Given how much we talk about Disney around here, it’s sure to get a lot of use.

Adrian’s already in love with his new pages.  He’s used them to ask when the plane will take off, say he wants to see the Little Mermaid show, go on the safari and Peter Pan rides and see the fireworks.  Usually he insists his device be on the homepage when he’s not using it, for now he’s switched to the Disney pages.  I’m so glad he can share this excitement with us.

July 27, 2007


Filed under: Autism, Family Life With Autism, Parenting Autistic Children — Carol @ 4:52 pm

Last night was the overnight at camp.  They pick one night each summer and the kids spend the night camping out in tents. Last year was Adrian’s first year.  He refused to even step foot into the tent (a boy after my own heart) and ended up sitting with the teacher, Mark, by the fire till about 4 am before he finally passed out.  He was up at 7 the next morning, went strong the whole day and didn’t hit the sack till 10 pm that night.  Amazing.

This year, the staff of his classroom didn’t seem as easy going as Mark.  He just seemed ok with the fact that challenges happen with these kids.  No matter what, he was always good humored about everything.  We soooo appreciate that. 

But this year’s team just didn’t seem to have that.  They were concerned that if Adrian stayed up, he could be loud and possibly wake the other students, setting off a chain reaction throughout the camp.  It’s not that it isn’t a valid concern…. it’s possible if not probable.  But like Mark said, “If it’s not Adrian, it will be someone else… it’s gonna happen no matter what.” 

We have a real appreciation for the folks who work with these kids.  We know first hand what a difficult task is set before them on a regular basis, let alone spending 30 hours straight with them.  Most of the time you get great teachers. Sometimes you get lucky and you get an extraordinary teacher like Mark. 

We don’t like to push folks past their comfort zone where Adrian’s concerned so we opted not to let him spend the night.  Instead Adrian stayed for all the festivities – the swimming, the pizza, the dance, the campfire complete with smores – then we picked him up at bedtime and he slept the night in his own bed.  Then we brought him back this morning to eat breakfast and spend the rest of the day with his classmates.

It seems he really enjoyed it 🙂

July 22, 2007

Using a Wheelchair

Filed under: Autism, Family Life With Autism, Parenting Autistic Children — Carol @ 9:58 pm

Planning this next trip to Disney reminded me that we stumbled across the benefits of a wheelchair because of our experiences our first trip to Disney.

Adrian was about 5 then.  We got to Orlando in the afternoon and couldn’t resist taking the kids into the park right away.  But with only a few hours till closing, we decided it wasn’t worth the money to rent a stroller.  We did a few rides and Adrian seemed to be having a pretty good time.  But then it happened.  He was overwhelmed with all the stimulation.  It was like a storm coming, you could see it happening but I was helpless to stop it.  I tried to sit down with him, get him calm…. but it was hopeless.  He ended up in a full blown tantrum in the middle of the park.

At that point we weren’t sure if this whole Disney trip was going to work out.  How could we control all the stimulation?

The next day we rented the stoller.  They have the kind that has a shade over the top providing a cocoon type feel.  It did the trick.  Anytime we noticed Adrian getting overwhelmed we’d encourage him to get in.  He even got in himself when it was loud or crowded.  That stroller provided a place for him to calm himself down, get away from all the stimulation.  We’d stumbled on to something big.

At home we had difficulty bringing Adrian to certain stores.  The lights, sounds and spaces were just too much for him to handle.  Remembering our success with the stroller we looked for a similar solution.  Specialty strollers that would hold a child his size were large and we thought they looked odd.  A wheelchair was just the ticket!

The armrests helped close him in and helped prevent him from becoming overwhelmed the environment, just like the stroller at Disney had done. 

The wheelchair had other benefits as well.  A belt helped us keep him from running away from us – a major safety issue.   It also gave him a lap to hold a CD or DVD player, allowing him to block out even more of his environment when he needed to.

I still remember walking into a certain store that had sent Adrian into fits multiple times before and watching in amazement as he sat in his wheelchair, happy as could be.

We’ve owned a reasonably priced wheelchair now for about 4 years now and I wouldn’t be without it.  As far as I’m concerned it’s a crucial peice of equipment that allows Adrian to enjoy our family outings.

July 19, 2007

How We Do Disney

Filed under: Autism, Family Life With Autism, Parenting Autistic Children — Carol @ 5:45 pm

Lots of parents with autistic children already know what a great place Disney World is for vacationing.  I know many autistic kids, like my son, spend huge amounts of time watching Disney movies, reading Disney books, listening to Disney music.  They just love the Disney characters.

Besides the appeal of the theme, Disney World has several systems in place which make it easier for people with disabilities to enjoy the fun.  A special pass aquired at Guest Services allows us to use the disabled entrances of the rides.  This cuts the wait times down to managable periods.  We use a wheel chair for Adrian and at Disney everything is handicap accessible, including the transportation  systems.  With the focus on family fun and staff who see all types of disabilites daily, Disney World is one of the few places we go where I feel comfortable.  Maybe it’s all in my head, but I feel like Adrian’s unconventional behavior is more accepted there than at my local grocery store, for example.

 Accomodations can be tough.  Adrian may be non-verbal but he can be quite loud at times.  We’ve stayed in regular hotels on occasion and it’s almost always a problem for our neighbors.  At Disney we’ve solved this problem by staying in the cabins at Disney’s Fort Wilderness.  The cabins are about the size of a trailer home and come complete with a full kitchen, living area and separate bedroom.  They’re separated from one another by trees, providing just the kind of ‘sound barrier’ we need to keep our neighbors from giving us dirty looks. 

Food is another issue.  I won’t say we’ve totally licked this problem.  Like most things, it’s not ideal, but when you’ve got a special needs child, you’ve got to be flexible.  Adrian knows the location of every McDonald’s in every park.  While we’re in Disney, he eats it a lot.  I don’t think it’s so bad when you consider that we don’t eat McDonald’s at all here at home. 

Of course we still seek to feed him other things every chance we get.  The full kitchen in the cabins make this much easier to do.  We grocery shop as soon as we arrive in Orlando, stocking the kitchen with foods Adrian will eat like bagels, cereals, bananas, hot dogs, chicken nuggets, cheese, eggs and bread.  A full tummy is key to a happy Adrian so we also stock up on snacks to tote with us like granola and cereal bars, raisins, gold fish and teddy grams.

Sit down restaurants are another thing.  This past trip we had some trouble eating in restaurants with Adrian.  I’m convinced this is due to the fact that since we started homeschooling the girls, we’ve stopped taking Adrian to restaurants here at home.  It’s just easier to take everyone during the day while Adrian is at school.  But now he’s not getting the practice he needs to maintain his ‘restaurant skills’. There’s trouble when he’s thrown back into one on vacation.  To make the best of it, we check all the menus online, try to eat at off times and carefully choose the  the restaurant based on it’s atmosphere.  We’re most sucessful when we bring the McD’s and the music player with us.

Even with difficulties here and there, we all have a great time at Disney.  I’m looking forward to this next trip.

July 18, 2007

Back to Disney World!

Hubby bought the tickets today…. we’re going back to Disney World!

Adrian is 10 and he’s already been 7 times before.  We usually take one, if not two, trips each year.  Adrian loves going and for the most part we’d worked out all the kinks. Or so I thought …till our last trip.

We went to Disney about a year ago and it was by far one of the most difficult trips.  I was caught off guard by Adrian’s behavior.  Each day around midday, he’d melt down.  By the end of the week we got into the habit of returning to the cabin and hanging out till evening when we were able to go out without much trouble.  Being unable to tell us specifically what the problem was, all we could do was make guesses about why he was melting down.  Was it the heat, the food (or lack of acceptable fare), was it simply that he wanted to go somewhere specific and couldn’t tell us? 

I guess we’ll never know.  But I am revisiting those theories as we plan for this trip. 

July 8, 2007

Movie Madness

Yesterday Adrian, Gee and Bee were all playing on their computers.  So Zee was free to choose which movies he wanted to watch on the TV.  After Zee watched a couple of his picks, Adrian used his device to tell us….

“Turn the TV off. I want to watch a movie. Little Mermaid.”

July 2, 2007

To Camp and Back Again…. and To Camp and Back Again

Filed under: Forgot to pick a category — Carol @ 9:13 pm

Adrian was very happy to go to camp this morning.  He fussed a bit when I brought the backpack out, but when I mentioned camp he laughed.  He got in the car, smiling from ear to ear.

My mind wandered a bit as we drove and I missed the turn.  Adrian quickly let me know with a vocalization and we made a u-turn.  I thought about how pleasant the drive was.  We take the back roads there, winding through trees, beautiful views of the mountains, through a quaint little town and then up, up, up the mountain. 

We arrived just in time. The morning had gone so well.

So I thought.  I turned around to talk to Adrian and realized in his excitement he’d forgotten to put shoes on.  I checked to make sure we didn’t have a spare pair of flip-flops or something but no luck.

We had to drive all the way back home to get the shoes.  Sure, it’s a plesant drive.  But I’d rather not do it twice in an hour!

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