Utter Autism

March 10, 2015

Doing Disney Differently: The Disability Access Service Card

When I heard that Disney was changing their policy for those with disabilities a while back I was very concerned.  Like so many others, we went to Disney World year after year because the policy made vacationing with our autistic son possible.

Before this trip, I did extensive reading online about how this new policy worked and about the experiences of those who had already used it.  The reviews were mixed.  There are many different types of disabilities and challenges so I suppose that should be expected.  It worked for some and didn’t work for others.

In general, it did work for us.

When you go to the customer service desk at any one of the parks, they issue you a Disability Access Service card.  This DAS card is good for the length of your stay. The valid dates, number in your party as well as the name and a photo of the person with the disability is digitally printed on the front of the card.

You can’t use the card to board a ride unless the person on the card is with you. This is a change from the old system and I can see why some might be upset about the change.  This trip we were only traveling with Adrian so it didn’t affect us.  However, in years past we did use the disability card to allow the other kids to ride rides that Adrian didn’t want to go on.  Perhaps some would call that ‘cheating’ the system but you have to remember that Adrian’s disability meant that we could only stay in the parks for a short time before he needed a break.  It was beat the clock each and every time we entered a park.  If the other kids had any hope at all of riding on things without Adrian, we had to use the pass to get them in and out quickly.  Adrian could not wait.  Leaving only one parent with him, wandering in circles for as long as the standby line took would have ended in disaster.

The thing you have to remember about the new DAS card is that it’s designed to be used in conjunction with the FassPass+ system.  If you are not using the FP+ system then it’s likely you will find the DAS card policy severely limiting.  If we were to travel with the whole family today we’d have to rely on the FP+ system to get them in and out of rides Adrian doesn’t like.  It would require a bit more planning and be a little less convenient… but I don’t see it as a complete deal breaker and I won’t say that it’s not ‘fair’.

Another big change in the policy is that the DAS card does not provide immediate access.  Under the old disability policy you simply showed the card at the ride and were directed to the ‘disability entrance’.   In some cases this was a separate, wheel-chair friendly entrance but for some rides it was the FassPass line.  It was this part of the old policy that lead to abuse by unscrupulous people and the need to switch to the DAS card system.

Again, I understand how some people are upset by the new system.  It is less convenient.  With the DAS card you have to take it to the ride entrance to get it stamped and they write a return time on the card. In other words, you wait as long as the folks on the stand-by line… you just wait some where else.  Actually, that’s not true.  You sometimes wait longer because when you do return you still have to wait on the FP+ line.

This trip, Adrian was able to handle going up to a ride and then coming back later.  When he was younger, he couldn’t have handled it.  One of us would have had to go get the stamp while the other took Adrian in a different direction.  You can only have one active stamp at a time so I understand why some people may be particularly upset about this part of the policy.  While it would be extra work, I still don’t think that even back in the day it would have made it impossible for us to visit.  And I wouldn’t say it’s not ‘fair’.

The last major change with this policy is that when you return at the time written on your card, in almost every case, you will enter the FP+ line.  Disney has done a great job making most of the queues accessible.  There are very few rides left that require a separate wheelchair entrance.  The down side here is that the FP+ line is a line.  With everyone using the FP+ system now, it’s not a ‘walk on’ line any more.  Though minimal, there is some waiting.  It’s probably this part, more than any other, that I think would have tripped us up back in the day.

Of course, we didn’t have iPods, iPads or phones all connected to the internet back then either.  We didn’t find the waiting that hard this time because we had the wheelchair and we did use an iPod to keep him entertained while we waited.  With this policy, I will never take Adrian without using a wheelchair.  Even today he could not handle waiting like that without the wheelchair and something to entertain him.

All things considered, I think the new policy is well thought out and should work to accommodate most people. One of the things I love about Disney is that, almost without exception, the employees are very accommodating.  It happened more than once that they bent the rules a bit.  Some wrote down a slightly reduced wait time on our card.  Others let us enter the FP+ line a few minutes ahead of the scheduled time.

I’m aware of additional accommodations some people have received as well.  A woman who had an autistic child went out of her way to tell me that I should go to customer service and demand generic, paper fastpasses.  We didn’t find this necessary this trip.  But I can see that as something some folks may need.  I’ve also read online that if your child has a compulsive need to ride a ride multiple times in a row, that they will often allow that.

I still think Disney World is a great place to go if you have a family member with autism but there is some preparation and work involved to make things go smoothly.  My advice is to go at the least busy time of year,  use the FP+ system in conjunction with the DAS card, bring enough help and electronic entertainment, consider using a wheelchair and if you have a specific need, it never hurts to ask a cast member or two for help.

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February 26, 2015

Doing Disney Differently: Using a Wheelchair

From that very first trip to Disney World with Adrian, we learned a very important lesson that not only changed our vacation strategy but also our life at home.  Adrian could quickly become overstimulated (and then aggressive) in certain environments, especially Disney. But when he was seated and buckled into the stroller it worked like magic to help him be calmer and enjoy it all without being overwhelmed.  When he outgrew the stroller we switched to the wheelchair and found it had the same positive effect.

Ever since, we’ve owned a wheelchair for Adrian and we always use it traveling with him. Besides helping keep Adrian calm and patient, it makes it easy for others to recognize he has a disability.  Autism is invisible except for the behaviors.  Adrian looks just like any other 18 year old young man.  The wheelchair immediately let’s others know he has a disability which makes them more likely to give us a break.  No one is surprised when they see him act in strange ways.  People around us are more accommodating, understanding and patient.

Now I know some would say that he should walk if he can walk.  But if the point of the vacation is for us all to relax and enjoy it, then it makes sense to do what we know works.   The couple of times we did let Adrian walk around this time just confirmed for me that it is the right choice for us.

Adrian has no sense of personal space and when he’s walking around he often plows through groups of people, bumping them as he goes.  At nearly 6 feet tall and a hefty build, I’ve seen him nearly knock people down just passing them.  His size makes it very hard for me to guide and steer him.  I’m only just over 5 feet tall and no match for his momentum.  In stimulating environments Adrian has a hard time hearing and following verbal directions.  So you’ve basically got an out of control tank in a very crowded place.

Besides the benefit to parental stress levels and everyone around us, Adrian just seems happier using the chair as well.  You can see his body relax and his energy become calmer as soon as he clips that buckle in his chair.  He takes it all in and enjoys the ride.  He’s not overcome by a need to constantly stim like when he walks.

Fortunately Disney World is very easy to navigate with a wheelchair.  Most of the queues are wheelchair accessible and cast members are very helpful.  Using the wheelchair for Adrian is one way we do Disney a little differently.

February 25, 2015

Back from Disney!

We’re back from our trip and I am happy to report that it all went really, really well.

A local snowstorm caused a bit of stress getting out of NY.  We had to sit on the plane for nearly an hour while they sprayed the plane with deice gel twice and blew hot air at the ice in the engines.  It was the only time the entire trip that we had to turn to the emergency meds.  And I admit, I probably did so a little preemptively knowing there was another 30-45 minutes of sitting there on the plane going no where.  No regrets.  He waited it out patiently and we were soon underway.

The rest of the trip was splendid.  Adrian was calm and happy throughout.  My husband and I were a bit surprised by how relaxing and enjoyable it was.  In many ways it was much less stressful than traveling with 3 typical kids with all their typical sibling fights, typical complaints and typically different ideas about what we should do next.

No.  This trip was just for Adrian.  So we went from park to park, ride to ride – only ever going on the things Adrian liked best.  We used maps and apps to allow him choices about where he wanted to go and what he wanted to do or eat.  But even when we were doing the planning, he went along happily and patiently.

There was not one aggressive behavior incident.  No pinching.  No fits in the car.  No fits in the restaurants.  Just happy and calm.  It was amazing!

That’s not to say that he wasn’t Adrian.  He did get silly once or twice.  He took a whole box of Cheerios and ran the the bedroom and closed the door, laughing hysterically.  But then without the stress of having to deal with other kids too, it really wasn’t a big deal.  If he wanted to eat Cheerios in bed, why not let him?  We opened the door and left him right there in bed watching tv with his snack.  I think even he was shocked that we were so chill about it.

Now that we’re back and I know how well these trips can go, I’m definitely looking forward to taking him again in the future.  I’d love to make it annual but considering how much it costs… well it might be every other year instead.

Still.  So happy to have returned to say it was a super successful trip and we can’t wait to do it again!

September 17, 2014

Return to Disney World?

So I’ve been toying with the idea of taking Adrian back to Disney World for a couple of months now.  It’s been 5 years since we took him last.   That last was the trip where Adrian reached out and pinched a stranger because he was unhappy waiting for a meal.  I came back from that trip black and blue, beaten down, sad with the realization that we might not be able to bring him back.  His behavior was so out of control he was a danger to himself and everyone around him.

Of course the same was true at home at that time too.  But taking the whole nightmare on the road (or plane) just wasn’t a good plan.

Recently I’ve traveled with Adrian to his favorite malls, gone with him to restaurants and had peaceful home visits. It’s convinced me that it might be feasible to take Adrian back to his favorite vacation destination.  But I’m not taking any chances.  If we go, I want it to be a success we can build on for years to come.

So my planning starts with a novel idea.  We’re only going to take Adrian, not the rest of the family.  A good portion of why our visits have been so good is that, for the short time I’m with Adrian, I can focus completely on him.  The worst experiences we’ve had at Disney World with Adrian have all been linked, in one way or another, to our efforts to accommodate others.  We had 3 other kids who wanted to go on rides and do things Adrian didn’t want to do.  We tried to make everyone happy.  Sometimes Adrian did ok with that.  Sometimes it ended horribly for everyone.

At this point our other kids have had their chance to go to Disney World without Adrian.  It’s his turn to get the trip he wants and needs.  So this trip we will only ride the rides Adrian wants to go on.  We will take breaks when Adrian needs them.  We will eat when and where it works best for Adrian.  It’s all going to be for him.

I still hope that someday family vacations to Disney with Adrian will be possible… but we have to survive this one first!

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.

September 12, 2007

Disney in Review – What Worked

Without a doubt, I’d say Adrian enjoyed this vacation more than past trips…. and that’s saying a lot considering how much he loved the other trips. 

Why was this trip so great?  Well, like everything, he can’t tell us directly so all we can do is theorize.  Here are my guesses:

  • The noise deadening headphones were like MAGIC.  There are a lot of rides Adrian loves but for some reason they always crank up the volume.  He enjoyed the rides before despite the noise level.  This time, with his headphones, he enjoyed the rides even more than before.  He was calmer and made fewer vocalizations to try to drown out the noise.  He was able to go on rides multiple times and go on rides in a row without becoming over stimulated. The headphones also great for blocking out your little brother when he gets pesky. 😉
  • The laminated communication card provided him with an easy way to make his desires known.  I’m still kicking myself for not having done this one on previous trips.  Adrian regularly went into the bag to retrieve his card to tell us what he wanted to do next.  He told us what rides he wanted to go on and even told us he wanted to go back to the cabin for a break.  Even if we couldn’t immediately grant his request, just knowing we understood significatly reduced his frustration level.
  • We took it easy on the restaurants. Adrian isn’t a big fan of restaurants.  His picky eating makes it nearly impossible to find him something to eat.  The wrong brand of hotdog, the wrong color cheese or even the wrong fryer oil and he won’t touch his usual favorites.  Problem is, the food (or lack of preparing it myself) is one of the things I look forward to most on vacation.  The cabin has a full kitchen but that doesn’t mean I want to use it!  So before we left I researched take-out restaurants in the area.  We picked up menus and ordered in.  It was great.  We were able to fix Adrian his meals and enjoy our food in the comfort of our cabin.  The couple of restaurants we did go to, Adrian used his headphones and was pretty calm. It was a good compromise.
  • We took breaks.  With the heat, Adrian needed regular breaks to chill out in the cabin.  In the past I think we pushed our limits in our attempt to please the other kids.  This time, rather than go at it straight for a few days and then take a day off we went to the parks everyday but always took atleast a few hours break in the middle of the day.  We got to all the rides and I think it was less stressful on everyone.

I’m definetly adding these things to my ‘must do’ list for our next Disney trip.

September 10, 2007

We’re back!

We’re back from Disney World and I have to say it was the best vacation EVER!

Adrian had a great time.  His favorite ride was Soarin’, a ride that makes you feel as though you’re on a glider as fly through California.  A close second would be Mickey’s Philhamagic, a 3D movie that has all Adrian’s favorite music numbers from the movies. We also spent time all all his other favorites : Pooh, Peter Pan, the TTA and Small World.

Near the end of our trip Adrian bought a set of figurines of Mickey and friends dressed as pirates.  He carried it with him everywhere we let him. 🙂

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