Wednesday, May 15, 2013

Traveling with the Tiny Titan. Heading to Disneyland

Yesterdays headlines from the New York Post on Manhattan Moms paying to cut lines at Disney World  and a followup on the Huffington post this morning had me thinking. They are scamming the system everyone wrote. They are. But the other thought was that someone with a disability actually had a job which is so often very hard to find in the disability world.

What are the statistics?  In 2011, the employment rate for individuals with disabilities was 32.6 percent. Enough said. Actually that was far better than I see from my walk in the special needs world.  

But moving on. We are headed for Disneyland next week. I am now going to be heading to the theme park not only with seasoned park veteran Becca, but the first time taking McKellan to the noisy, crowded, overstimulating Disneyland.  Why would I do it?  Because it is the thing to do for Miss Becca and a chance for Little Guy to see "his" Jake, Mickey and Car-Car.  When we told Mackie we were going to Disney he ran around the house squealing "Jake", "Car-Car", "Ouse" for ten minutes solid before he fell down from moving so fast running in circles. It's normalcy, it is a chance to go to the places of Magic from the characters that have comforted her and him through their tough day to day existences.

We are also headed for the theme parks in Florida when we head out to attend the Noonan Syndrome and Brave Kids Conference on July 31 to August 4. The article got me thinking ahead on planning ahead and also the "perks" or not so perks of doing Disney, Universal, Sea World with my kids.

I had procrastinated on this one, but life day to day is so full of Doctors appointments, therapies and cares and feeding regimes that I must give myself some slack. Or just maybe, I didn't want to think about what it was going to take until I had to.

First planning ahead is paramount. I need to make a list.

I called Doctor Sheirlie's office to get letters of disabilities for both Becca and McKellan to take to get the Prized "Disability Fast Pass".  No I don't need to go rent a wheelchair for Miss Becca to cheat the system.  Becca has hers. McKellan still is in his stroller, but he fatigues and with his sensory overload with the shade down, hopefully will give him a reprieve from too much. I better not forget his blanket and have him wear his Benik brace for sensory input along with his sunglasses and hat to protect his damaged optic nerves. I won't even go for the challenge to keep them on a tiny 3 year old little one with Fetal Alcohol Syndrome, Autism, and a genetic syndrome.

For our sanity and theirs, we need to cut lines or more appropriately ACCOMMODATION. The disability passes are there for a reason and they are not easy to get. It requires a doctors letter. Despite popular opinion we will still be standing in many lines as they have gotten rid of the line jumping in many places. Which for Becca and my kids can be twice as challenging than for others.   My kids both do not do well waiting. But others will say no kid does.  But my kids have challenges. They both have hypotonia. Standing in one place causes Becca's legs and feet to swell from lymphedema which is incredibly painful. Her lungs only function at 48% of normal due to her Noonan syndrome and muscles with low tone. Her strength is that  of a tiny child. Her heart impaired. Too much anything triggers the always present headaches into full fledged Migraines that will put her into the emergency room.  Mr. McKellan with his autism will flap and squawk when overstimmed and tired. I will be not enjoying myself trying to make sure the needs of my children are met and managed to not spoil our trip to the Magic Parks.

We have flown with both before, and Becca's chair. It may have a small perk.  The article talked about  "A trend, also seen at airports where “travelers request the use of complimentary wheelchairs... as a technique of getting pushed to the front of security lines, only to leap up and sprint to their gates once they have clearance.” 

But has anyone tried to go through the TSA with an young autistic person with a tiny service dog and they targeted and pulled her aside even with all the prompting about her disability?  They wouldn't let me be with her, hold her hand and took her tiny dog away, even though they had been handed the letter from the Doctor, had all the dogs travel papers in advance?  She was standing their shaking and I was almost sure that "This Mom's" scene would have possibly been labeled as not quite socially acceptable as I had to lightly raise my voice. "My daughter has Noonan Syndrome, she is autistic and she is scared". Can't I stand NEAR her to help her through your processes.  She can't get off her braces by herself, you are asking her to do things she can't by herself, her hands do not work, she has Post Traumatic Stress Disorder and Austism and does not like to be touched. Do not put your hands by the insides of her legs you are triggering her abuse history".

Fortunately a Woman Supervisor overheard the stupidity the two TSA workers and took over the situation.
I was handed Becca's dog and I stood next to her while she used the wand to scan Becca. No need to take off her braces.  With an apology that she was randomly pulled aside by being lucky enough to just be the next one pulled we were off to the gate. 

We may have gotten to security ahead of the line, but I am sure by the time we went through 30 minutes of Miss Becca being targeted for being a threat to National Security, we were actually behind them reaching the gate and I got to pick up the pieces of a Traumatized, Scared, Anxious and still tearing up Becca.

Arriving at the gate, they had heard about the fiasco of the girl in the little pink wheelchair and her teeny tiiny service dog and the airline had upgraded her seat to First Class and Morgan had her own first class seat of her own.  The tears turned into smiles. There are still good people in the world who get it.

But speaking of getting on the plane ahead of everyone, but getting off is another story. Ask anyone in a wheelchair. For Becca she has her own chair, she can transfer on herself. But we wait until everyone to get off and then wait for her chair to come up from under the plane. If we don't fly with her chair, we have to wait for the airport transfer crew to get her chair to the gate. Half the time, it is not there when we unboard. Several times, despite having it ordered, it does not arrive until we have to call for it. With the tight times of transfers, we have even had to carry Becca through the airport or miss our connecting flight. Which we have done because of no chair met us.

Special needs kids and special diets, I need to bring our own. We need to bring noise blocking headphones and as always they will tell Becca to take them off while the plane takes off and lands.  She is now trained to "SHOW" them the fact it is not plugged in while I explain that she has "autism and hyperacusis" she hears everything really loud.  She can't talk to anyone when she is anxious due to her expressive language disorder.

Traveling with my kids, no such thing as Medical Confidentiality that the regular world enjoys. I have to just keep thinking that I am raising awareness, educating and advocating for those with special needs.

Are you thinking that my kids are lucky yet?

If with all they deal with, they deserve to have something positive.  A good parking place, a cut in line, or being first for once and being "Special".

To Be Continued
PART II  Traveling with the Tiny Titan

I will continue to blog this week about traveling with the Tiny Titan and her little brother and our adventures of being "lucky" to have a wheelchair or disabled guest pass.

  From a quote from the article, *This might lead to growing acceptance of people with disabilities, because, kids, look how lucky people in wheelchairs are!

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