Thursday, October 24, 2013

On Using the Disablility Service Access Pass at the Disneyland Resort


So we went to the Disneyland Resort again this past Sunday.  We had the Park Hopper pass, which enabled us to go back and forth between Disneyland and California Adventure.   It was a moderately busy day.   Disneyland has made this time of year all about Halloween, converting the Haunted Mansion to a Nightmare Before Christmas spectacular, which is really awesome, and Space Mountain to a Ghost Gallery or something like that, which is also very cool.  So, it can get crowded this time of year.   

First off I have to say that on our last visit in June, we used to Guest Assistance Card for the first time and had our most successful trip to date.  We had a truly magical Disney day, and because of that card, we were able to eat more meals and snacks and had more time to spend purchasing merchandise.   We spent a lot of money that day.  More than we had ever spent before.  I even blogged about it. Read that post here!

I had been following the controversial switch to the Disability Access Service card.  I mean, who in the autism community hasn’t at least seen a headline about it?   I knew that we were hoping to go soon after the switch over.  I also knew that we were going to have to deal with the change just as we got used to the way it was with the Guest Assistance Card– which really worked for us.  

I’ll be honest, when I read about the proposed changes and the way it worked I thought it was a myopic solution to a much larger problem.  I even wrote that on my Facebook version of this blog spot.  I just didn’t see how it would work for families like mine – with a neurological disability and not a physical disability.  After Sunday, I am still not convinced it is the best solution for families like ours, but it wasn’t a terrible experience.  It wasn’t a horrific experience.  It wasn’t even an unpleasant experience.  For us, it was just different experience from what it was before.

I am not an apologist for the Walt Disney Company.  I have nothing to gain or lose from anything I write about Disneyland.  I do have to say, though, as I understand it, that Disney is a private business, which means, ultimately, they are not beholden to any state or federal guidelines when it comes to disability access for neurological/developmental disorders.   Any services they provide for families like ours is a “courtesy” on their part as there is no law stating they are required to do so.  So, it is what it is.

With that said, the old Guest Assistance Program was apparently subject to much fraudulent activity.  From the little inside information I know, and it's very little, the abuse that was not coming from families like ours, but from physically disabled neurotypical adult individuals looking to make money by abusing the system set up for their ease and maximum enjoyment.  Much of the fraud was being perpetrated at Orlando’s Walt Disney World, which has a very different crowd culture than Anaheim’s Disneyland Resort.  They felt that something needed to be done across the board to address this issue.  That’s why the change.  I guess this new system acts as a deterrent.  I'm not quite sure how, though.

The line for City Hall
After parking, after waiting for the tram, after waiting in line to purchase tickets, after waiting in line to get in, you have to get in line to get the pass. At Disneyland the passes are issued at City Hall.  Depending on the crowd of people trying to get that same pass, you may wait longer than you hoped.  On our day the line was quick enough.   We had to have the kids wait with us, which was tough since they never had to do it before.  They maintained themselves for the five minutes it took to get to the door while my wife and I conferred about what we needed to say our concerns were.  Once we got to the door and showed them our old Guest Assistance Cards and told them we had two autistic children, they put us straight to a Cast Member who was there to specifically address families like ours.  
She was an amazingly kind and courteous young woman, who was eager and happy to help us.  In fact, she was great.  Her name was Amanda.  She didn’t even bat an eye when we mentioned we had two and proceeded go about giving us our passes.   She even took two pictures of Elena who was not posing for the tablet camera at all.  We are not ones to give anybody a difficult time when it doesn’t make the situation better but we have learned to stand up for ourselves and our kids and to respectfully assert our rights and positions when necessary.   No such assertion was necessary.  

Disney Cast Members working in Guest Relations are usually twenty-something college students or recent grads who are working for a living just like most of us.  They just happen to be working for Disneyland.  And if you are working at Disneyland it’s because it makes you happy to be there.  They are not there to be rude and nasty to people.  One doesn’t apply for a job at Disneyland for chances to be mean to people.  She was absolutely wonderful to us.  And we told her.   Pay it forward, you know?

Essentially, the new system works like a FastPass, if you know what a FastPass is, you will be very familiar with the new system.  Unlike a FastPass, it is based on current wait time, and is available for all the attractions.   And unlike FastPass, there is no time “window” so you won’t miss going on the ride if something comes up and delays you.  Also, with some FastPass lines you come back several hours later, sometimes four or five or even six hours later.  With this system, it’s based on the current wait time.  So if the general wait time is one hour, you will get a time based on that one hour wait, minus around ten minutes. 

There are four kiosks set up in each “land” or “section” of the park, both in Disneyland and California Adventure.  They are not hard to find.  You just go up and ask for the next attraction you’d like to use it on.  They look up the time, tell you, and if you want to do it, they write it on the pass and you are on your way.  Once there, they look at the pass, cross it out and you can go right on.  

The kiosks lines are very short and we didn’t encounter any problems or delays.  In fact, once again we were treated very nicely.  I even was sincerely asked how the system was working for us.  The Cast Members working the kiosks and the lines were all exceptionally kind and courteous to us, all day, in every line, at every kiosk and attraction.
 
You leave City Hall with a ride ready to go.  Our two love Star Tours so we asked to go there first.  She wrote it down inside one of the passes, with the time we were able to go on.  Since we still hadn’t gotten a locker, and mom and dad hadn’t really eaten and really wanted a coffee, and they now had a Starbucks between City Hall and Star Tours, the timing was perfect.  


After Star Tours we found the kiosk and got a time for Space Mountain.  It was about a forty-five minute wait, so that meant time for a bathroom trip, a few games of old school Pac-Man, and some serious shopping in the Star Wars store just outside of Star Tours.  After Space Mountain we went to the kiosk and inquired about either Small World or Dumbo.  The Cast Member saw that I had two passes, one for each kid, and she signed one for Dumbo and the other for Small World.  It was then that we realized with the two we can essentially use both passes, back to back, for different attractions.  It helped our cause.  I realize not every family has two on the spectrum like us, so that option isn’t going to be available for everyone. It did help to make our day a smoother, easier experience.  Score one for the family with two special needs kids.

The most convenient aspect is that you can get a time for any ride at either park, which means if you are in Disneyland and you are planning on going to California Adventure to go on Racers, you can get a time before you head on over.  In our case, we were able to get a time for Racers and Soarin’ Over California, which enabled us to go from one directly to the other, just about the time it took to walk over there.   When we came back to Disneyland, we literally walked right into the door of the Haunted Mansion, after having had dinner at Flo’s and going on another short line attraction in Cars Land.  And that was the case for most of the rides we accessed with the pass, virtually no waiting at all.   

That brings up the most inconvenient aspect of the new system, the need to wait in other lines that you have not accessed via the pass.  On our last visit, it was so very convenient to walk off one attraction, walk to the exit of the attraction next to it, and be on in a matter of minutes.   There was always some amount of waiting, and on the more popular attractions the wait was around twenty minutes.  Depending on the line, that can be an okay twenty minutes or a very difficult twenty minutes.  On less popular rides the wait was shorter. 

We have worked very hard to enable our kids to be in the world with some degree of success.  It's work to maintain a sense of "normalcy" for any length of time that they have to wait.  We worked to keep them from melting down.  We're good at it, for the most part.  It's what we do.  Even at Disneyland.

So, yes, with the new system if you are not signed up for a ride, and you want to go on it, you have to get in line.  For us, that meant we waited in line to get on Casey, Jr, Winnie the Pooh, the Canoes, and that Guido and Luigi ride in Cars Land, all of which were no more than twenty minutes, often less.  We can, generally, handle that amount of time.  We have done the park enough that the kids know the payoff is worth the wait.  Families new to autism and first time families, especially, may have a much harder time with that aspect of the change.  

Is the new system better than the old system?    No.  It’s not.  Not for families living with a neurological/developmental disability. 

Does it work for families like ours?   For the most part it made the day easier for us, though not as convenient or as easy than the old system.  However; it is far better than navigating the park with no service system at all, which we had done a few times as well.

It’s smart business sense to provide allowances for families with disabilities, so they offer them as incentive to come.  How and what they provide is determined by company policy and, ultimately, the marketplace.  If less families with a neurological disability come to the park because of the new policy, then the new policy will definitely be rethought because the bottom line is about money, and how much of it can be made at any given time.  No protests or petitions will change it.  Not going to the park will.  And that’s just reality.   

I don’t know what they could do differently for families like ours and not get into legal trouble, as there is no state or federal mandates specifically stating that neurological disabilities can legally be treated as separate from non-neurological physical disabilities, allowing for exemptions for families like ours.  Since we can’t even show them any official paperwork because the law states they’re not allowed to ask, it’s kind of a perpetuating circle of bureaucratic stupidity.  Bringing back the GAC for families with autism spectrum disorders would do the trick but I don't know if they can offer a tiered assistance program.  Again, human greed and arrogance ruined the old system for all disabled people and their families.  

This change isn’t terrible.  It’s not the end of the world for people and families with disabilities who love what the Disney experience brings to our kids.  My kids were able to go on fourteen attractions.  They had a great kid day at the park.   We will go again, of course, because we can.

Did we still have to deal with autism?  Yes, every moment, and some moments were harder than others.  To me, the current system, although not as convenient as the previous system, is still a good system and better than no system at all.  It helped us to deal with the autism.  The GAC system helped better, but this system did help.

I think it's silly to feel that Disney is out to ruin the lives of autistic people and their families.  They're a business.  That’s the last thing they want.  Money is money, and ours is as good as theirs, and we are eager to spend it when we discover something, anything that brings joy and happiness to our kids. They know that.  They want our business.  We'll see what the future brings.

Just like every autistic person is different, every experience is different.  This was ours.  Yours will be yours. 
A Happy Boy


Friday, October 18, 2013

Our Fifth Haircut at "Nuevo Look Salon"


Aricelli and Nicholas
Being able to get a simple haircut is often a monumental milestone for many autistic children and their families.  Today marked our fifth consecutive successful haircut in a row.  We've been getting haircuts around every two months since the beginning of the year.  It's almost normal.

Prior to getting his first actual haircut at Nuevo Look Salon, we had four visits to sit and watch dad get his haircut, and to meet the hair stylist, Aricelli, or Chelli, as she prefers, and to get desensitized and accustomed to the environment.  That took about a year of consistent effort, from talking about doing it, planning to do it, to actually doing it.  Luckily it is next to a doughnut shop, so there was always the motivating force of a delicious doughnut afterward. 

Aricelli has been cutting my hair for about three years now.  Her salon is a ten minute walk from our place.  Her prices are very affordable.  It made so much sense to try to establish a haircut routine there. 

We always take the iPad for distraction, though he relies on it less and less.  Donella, his behavior therapist, had come a few times to sit with him during the desensitization process, and she came the very first time he sat in the chair.  Prior to that, mom had cut his hair for about three years at home.  She did a great job, even buying a pair of professional scissors and a cape.  She watched a few "how to" YouTube videos and just went to it.  However, as great as she was, it was never an easy task for her, or him.
enjoying his motivator

Like every other parent of an autistic kid, we tried taking him to the standard franchise hair places when he was younger, and he had notoriously famous meltdowns - the stuff of legends.  And that was before we had a diagnosis, so we didn't know what we were dealing with exactly, but we were starting to suspect.  The electric razors would make him lose it.  And we would ask them not to use them, but they would never listen.  He couldn't sit in the chair with the razor going, so he'd get up and run away.  They'd follow, cornering him while he melted down, the hair falling between his shirt which made his experience all the more horrible.  They were usually middle-aged Latinas, mothers themselves, maybe even grandmothers, who thought they just knew better, and who, afterwards, would give us these really terrible side glances like we were bad parents.  And we paid them for that!

Haricuts with mom weren't as painful, but they were always a struggle.  It was getting to be too much for both of them.  As he matured, and with many hours of intensive therapy behind him, he began to consider getting his haircut with dad.  And with Aricelli, I had found about the best person on the planet to be able to handle it.

She is very calm, and playful, and has a nice, pleasant, and flirtatious energy.  He responds well to that.  She has the same kind of presence that some of his older female cousins and first and second cousins have.  She is a fantastic stylist of course, and her shop is a small family business, and as my father owned a small business, I always try to patronize one when I can.

She was perfect from the get go, always ready and willing to try and make it work.  She listened.  She understood.  She charmed him, and he charmed her back.  She got it.  And most importantly, she got him.  A lot of the success goes to her.  She has a good heart.  And she's smart.  She can even use the razor on him, that's how awesome she is.

He really enjoys going to her.  She is a rock star in our eyes.  I remember as I watched him sit in the chair for her the first time, and she worked her magic and cut his hair, I started to get tears in my eyes.  I remember thinking, "I got lucky."  Yes, it took much planning and consistent effort on my part, about a year's worth of it, but I was lucky to find someone like her to open my mind up to the notion of attempting to even try it.  That's luck.

In all fairness to the previous haircutters, they had no idea what they were dealing with.  As autism parents, we know we really can't spring our kids on people, especially unsuspecting working professionals, and expect them to get it, to understand, and have the patience and awareness to work with them.  We hope that they can.  We pray that they can.  And sometimes we get lucky but usually we don't.  We do if they're angels, but they're usually just people.  We have to work with people.  We have to cultivate professional relationships and be respectful.  We can't force their world to change at will.  That's not realistic.  We can bring about a change, though, with work and patience and perspective.  Of course, we didn't know at the time that we were dealing with autism the first three years of his life.  However, we did know, deep down, we were dealing with something unusual. 

Speaking for myself, I have found that as long as I am open and honest, and ready to work with someone, and polite and courteous, for the most part, the good comes out of people, and they are willing to use their innate kindness to help in ways that they know they can.  Autism parenting isn't just about working with our kids.  It's about working with everyone.  We change.  They change.  And so changes the world.

Living with autism is the ultimate transformative experience.

Here are some pictures from our fourth successful haircut.

If you're in the area, look them up!  Nuevo Look Salon





Sunday, October 13, 2013

Saturday, October 12, 2013

Payoff vs Paycheck

I haven't been very inspired or moved to post a blog lately.  I've posted little status updates on the Facebook version of this blog - Autism: Rethinking Family "light" as I like to call it in my head.  But nothing too brag about.  I guess I've been in a rut.  

You see, I have been struggling, lately, with my lack of gainful employment.  You know, work.  Work for money, anyway. It’s what men do, so I’ve read, worry about money. Trying to get back into anything, even the lowest entry-level part-time position, has not gone well. With my "educational level" I am overqualified, of course, but nowadays who isn’t?  And, really, so what?  I want to work.  I don't mind stocking shelves or emptying boxes.  Compared to my regular every day existence, that's nothing.  It's work, honest work.  And I would love to be doing it.

It would be fantastic to work a job that pays something worth the time it will take me away from my family to be there – even if “the worth” is that I feel good about what I’m doing for less pay than one should be getting.  Heck, that was what part-time teaching was at the college I was at – only being paid for the hours of actual class time and nothing for the hours prepping the classes or correcting the exams and projects I had to give and the after hours assistance I gave to my students. I did it because it was a value exchange I could live with.  Still, right now, any job, really, would be a good thing.  Part-time would be perfect. 

The irony of the whole situation?  I have never worked harder than I have the last seven and a half years being the primary caregiver to our two autism spectrum children. You can’t measure it in hours or days or weeks in terms of “time” put in. There is no monetary compensation. There’s just…I don’t know…there’s just life, and working to make it better, for a payoff, and not a paycheck. 

Last night Elena was very insistent on following me around our place, getting in my way, literally, as I was starting to brood again. I finally had to give in and acknowledge that she wanted my attention. When I did, she took me into her room, climbed on the top bunk, and proceeded to sing to me an entire songbook of children’s songs, including Head, Shoulders, Knees and Toes, Incy Wincy Spider and Skp to my Loo, in her very dramatic style, and very sweet voice. And as I watched her, from a foot away, looking into her eyes as she performed for me, I thought about all those long days with no speech, no talking, no beautiful sounds and songs coming from her beautiful little face, just a vague indifference to the world, and how much I have put into helping her move forward and progress, and I realized that I was getting “paid” right then and there, and it was only for me to see and love and cherish. You can’t take it to the bank, but it was certainly a moment in my life I will gladly withdraw from whenever I need to remind myself it’s not about a paycheck, it’s about the payoff. And that was, maybe, the best payoff for hard work I have ever had in my life.

Her timing was impeccable.



I'm still stressed out about money, but I know the work I've been doing the last seven and a half years has been far more valuable than all the paychecks I should have been getting working a "typical" job all that time.  As our dear friend Lynne wrote to me, "Don't forget at the end of their lives people regret not having spent more time with their family, working too much, never seeing their kids...the most important people."  

She is very right.  They are the most important people.  I will never regret this time of my life, ever.