Tuesday, July 22, 2014

In case you wonder...it is still a pretty happy place!

The morning had begun with breakfast at Cinderella's castle and could not have been more perfect for my trio celebrating their fourth birthdays. Unfortunately, the day had not begun so well for the princess as we were told she had ripped her dress and would be unable to take photos with us in the castle.  The staff were dear however, and had a plan. They gave us a time to return to the castle later in the day for a photo opportunity. When we returned, the line was out the door. Many other families had been at breakfast along with us and had returned for the now-mended Cinderella to sign their autograph books and have her photo taken with their children. The Fairy-Godmother saw my cute little boys standing with their eager-to-see-her-hero sister, one in a walker, one with crutches. She waved us forward but Dad and I shook our heads no. We didn't mind waiting in line. And then, the most amazing thing happened. These families turned and saw us. They smiled and parted like the Red Sea, motioning us forward.

And my mommy-heart wept with tears of pure gratitude at the goodness of people. Oh, people can be so very good.

The year after the torn-dress incident...still delighted to see Cindi!

Three years later, we were visiting Disneyland. The boys had graduated to wheelchairs by this point and we knew finding a spot for non-standing viewing of the fireworks would be a challenge. So THREE hours before the show, Wade and I camped out with our adorable 7-year-olds to get a spot where they could view the show unobstructed. Wade took turns with the children, taking them for snacks and just to tootle around the park. But I and at least one child, sat for three hours securing that spot. At an hour out, Wade quit leaving. Things were getting crowded and it was going to take all hands on deck to ensure that no one stood in front of our children blocking their line of sight. Five minutes before the show started a group of adults squeezed in in front of us. FIVE MINUTES before show time. I leaned over Benjamin's little chair and tapped the man. "Excuse me sir. You are blocking my son's view."  He shrugged that he did not care. He shrugged.

And my mommy-heart wept with tears of despair at the selfishness of people. Oh, people can be wholly and completely self-absorbed.

Dancing in the parade in 2002!

Sadly, we were not surprised by the man's behavior. We had seen people behaving badly all day. Teenagers taking turns in Disneyland rental wheelchairs so that they could get to the front of the lines. Groups of 15 or more able-bodied adults pushing their sleeping grandmother in a wheelchair so they could use the accessible entrance. We knew the limit per wheelchair was six -- that includes the w/c bound guest -- per attraction. We knew that these people breaking the rules repeatedly would eventually affect us. We knew.

And our hearts hurt then. And when people we knew would tell us how they waited for their relative who sometimes used a w/c to take them to Disneyland so they didn't have to wait in line, our hearts hurt. My Mommy mouth wanted to shout "WAIT IN LINE ALREADY! Do you know how desperately I wish we could STAND in a line?? Do you know how badly I wish we could climb the STAIRS that prevent us from getting in regular line at Splash Mountain and other rides?"

I really really wanted to scream often...and at many. But what really bothered me was that I knew the day would come would Disney would have to say, "Enough." Enough abuse of a system (I anticipated the changes in access. Feel free to click and read.) that was meant to protect those who need it. Enough. Now, we will have to put measures in place to ensure no special treatment because frankly, we aren't allowed to question the validity of your need for a w/c. So we will have to punish everyone -- you, you, and all the people who really and truly depend on wheelchairs. Really.

That day has come and as we ventured to our favorite place on this side of the country last week we knew we would encounter changes. We were aware. We were ready.

Our first day was in California Adventure. Nothing different there. We got our usual Fast Passes for Radiator Springs and then proceeded straight to Toy Story Mania as soon as the park opened. We waited in the normal queue for Toy Story and when we reached the loading zone, we simply left one line to go past the normal loading zone to the special zone. We didn't save a step, dear ones. I promise. We even walked further than able-bodied guests, if you want to know the truth.

But I love this ride, because they let Benjamin drive right on and strap him down. The rest of our crew gets to ride the vehicle behind Benjamin's and once we are all in place they move the track to allow us to join the fun. It is amazing! We do not mind waiting in line. We don't mind one little bit. We LOVE that loading Benjamin does not slow any one else down or hinder their enjoyment to the ride.

We did the same with Radiator Springs. When it was time for our Fast Pass, we went and got in the normal Fast Pass line. Oh, we bypassed the big huge line. But that wasn't for special treatment, that was because we got up and got to the park early enough to secure six fast passes for our family. We waited in the normal queue until they diverted us past the regular loading area -- again, much like Toy Story -- and let us take our time loading our family in the race car. (They didn't even let us win the race! ;) )

My hands are at 10 and 2, Mom. 10 and 2.

While waiting for our Fast Pass time, we had been able to ride Screamin' Over California,  meet Donald, and even take a whirl on Mickey's Fun Wheel! California Adventure is easily accessible and our day was a delight!

Mickey's Fun Wheel is a....scream!!

Monday evening we had dinner in Disneyland and thought we would ride some rides. We stopped at Indiana Jones and encountered our first change in the system. A cast member took all six of our tickets, scanned them and gave us a hand-written "fast pass" to return in an hour. We proceeded to Splash Mountain to check the wait. The line was not horrible so we went to the accessible entrance. There we were told that since we were "in the system" for Indiana Jones we could not get in line for Splash. She could not give us a "Fast Pass." We understood that. After all, guests are allowed one regular fast pass at a time. But this was a ride where the regular line is not possible for us because of stairs. If a non-disabled guest had a Fast Pass for Indiana Jones, they could choose to wait in line for Splash. That was not an option for us. So because we could not get in the regular queue -- stairs -- we could not ride this ride during our "waiting time" for the special "fast pass" even though no wheelchairs were waiting to ride, no one was in the line at all.

We fumbled around for a few minutes not knowing what to do next. The park is laid out in such a way that for us to ride a non-fast-pass-required ride we would have had to fight our way across the park through the crowds. That is do-able and we certainly are pros at navigating two wheelchairs through the crowds but we had to be at Indiana Jones within the designated time frame or we would not be allowed entrance. We were stuck.

When we noticed that Haunted Mansion had NO wait, we decided to give it a try. We were allowed access and very much enjoyed our Doom-Buggy ride -- thankful the entire time that we had not been stopped at the queue and told we could not ride. (I feel I should clarify that IF there had in fact been a big line, we would not have been allowed to enter this ride either, without a special "fast pass".)

Snakes? Why did it have to be snakes??

Just when we felt we had it figured out and could navigate the new regulations, the cast members at Star Tours almost sent me over the edge. Fast Passes in hand, I approached the cast member in charge of the line to ask if we should use the main entrance or go through the exit (as per usual, but history has told us that this changes from day to day on this ride.). She said, "Oh no, your family can go through the main queue now." I nodded in gratitude. "Fantastic. So we line up in the Fast Pass line." Oh, she looked annoyed with my questions, "Yes. The normal line." But I knew she wasn't listening to my concerns: "Just to clarify, my son in his power wheelchair can go through the regular line?"  Clearly annoyed now and refusing to even make eye-contact, "YES." Me (also annoyed at the lack of eye-contact): "I only ask because we do this every single time and then you tell us that his chair weighs too much for the ramp in the queue."  Cast member: "The. Regular. Line."

Ok then.

Guess what? When we got back to her, she looked at Benjamin in his power wheelchair and told me he would have to transfer to another wheelchair because....wait for it....his chair was too heavy for the ramp in the queue. (You had to have seen that coming, right?)

Deep breath. Deep swallow. Deeper breath. "Yes, that is what I was trying to ask you about earlier. He has Cerebral Palsy and can not support himself in a generic wheelchair. He can not transfer. We lift him onto the ride from his power chair. Hence all my questions a few minutes ago."

Another cast member approaches, "What seems to be the problem?" I explain. With perhaps a touch of emotion as I was teetering on the edge of screaming "WHY DOES THIS HAVE TO BE SO HARD????"

As the cast member listened, she asked if we would like to see her boss, the lead. My dear hubby, seeing the tears welling in my eyes and knowing I was less-than-stable to handle much more replied that "Yes, we would very much like to see your boss."

Amazing thing. Boss enters the picture, takes one look at Benjamin and says, "Of course, you should just come to the exit to enter this ride. We know he can't use the regular queue."

AAAAAARRRGGGHHH. But again, I took a deep breath and proceeded to discuss exactly how this should be handled in the future (apparently we are to ask for the Lead -- aka the boss -- every time we approach the ride because the basic cast member can not make exceptions like we require.) And I refrained from screaming about the level of difficulty....about the mind-reading required....about the pain of trying to ride one of my family's favorite attractions because really, I know why it is so hard. I know exactly why it is so hard. It is hard because selfish, self-centered, please-me-right-now people took advantage of a system that worked for my family and as a result Disney had to lay down some hard rules. Some stringent rules. And though there are cast members that can think through the logistics and make the access truly accessible...they are all on the A-team and apparently Star Tours had their b-team working that night!

Are you sensing the "I want to drive" theme?

Thankfully for us, Disneyland had their A-team scheduled on Tuesday and Wednesday! These cast members were on the ball, doling out the required Fast Passes for rides where a FP is not required for the general pubic with an apology and a smile. With the exception of a little stumble: the cast member at Jungle Cruise was telling us we could not get a Fast Pass for his ride because we were in the system for another ride. But when he looked behind him to see what we already knew -- NO ONE was in the queue -- he let us on.

Big Thunder Mountain with some of our favorite people!

Cause Cotton Candy makes even the best days even better!!

Love the Jungle Cruise boat that allows Benjamin to drive right on!

I need to be clear. Very very clear. We never once went to Disney -- Walt Disney World or Disneyland -- expecting special treatment. We didn't go anticipating getting to "skirt" the lines or have people make a big deal out of our presence. We went to have family time in a place where Benjamin and Mason could participate with us rather than sit on the sidelines like they have to do so so so often. I want you to understand that even if the line thing were not an issue, our choice to spend time at Disney is still a lot of work. Most rides require Benjamin to be transferred. That means Wade and I (usually Wade) have to lift our amazing young man out of his chair and into the ride. And usually this has to happen quickly so not to disrupt the flow of the ride. Threeish minutes later we have to lift him off again and back into his chair. All the while assisting Mason in navigating any steps in and out of and ensuring Claire and Cate are safe as well. The line part should be easy. It should be straightforward.

I will not lie and tell you that special things have not happened for my little family in our Disney travels. They have. You might remember my sweet Aladdin story from the year the triplets turned 4. Or perhaps I have told you about the next year when Aladdin recognized the trio and asked them to ride on his brand new ride with HIM!

But for the most part, we love Disney because we make memories together there. We spend time together with no demands on any one's time except those that Fast Pass require! We spend time smiling and laughing and being a family. I do not need Disney to let us in line first. I don't. But the plea of my heart is that they really think through their accessibility issues to ensure they are not making access harder for a population that already has life hard enough.

 All in all, our joy remained intact in our favorite backyard park last week. We made memories as a family; we spent time with loved ones; we reunited with friends from days gone by; and we took a deep breath and adjusted our expectations. Yes, we will have to walk further; plan more; and allow for enjoying the down time on our trips to Disney. We will have to prioritize rides so that we wait for the must-rides and forego the wish-we-could-haves. We will bite our tongue when the b-team is working and hopefully by helping us and seeing the joy their job brings they will find the hidden A-team member within!

Want to meet us at the castle?

Carol - The Blessings Counter

Tuesday, July 1, 2014

Nemo, labels and puppy dog shoes.

One of my favorite movies was on TV last weekend. The scene grabbed my attention just as Nemo convinced Marlin that he was in fact old enough for school. I froze in what I was doing, so gripped by what was about to happen in Pixar's Finding Nemo:

Marlin and Nemo swim to school. Marlin introduces Nemo to the teacher and explains that one of his fins is smaller than the other: "We call it his special fin," Marlin explains.

And bam, tears are coursing down my cheeks and I am transported back to a dozen firsts -- first day of preschool, kindergarten and every grade where we moved schools (2nd, 3rd, 4th....), first day of theater, first day at a new church, first day....

Pretty much everywhere anyone was meeting us for the first time:

"This is Benjamin and Mason. Their legs don't work as well as your's (speaking to classmates) so they use special things to help them get around. Mason uses crutches, but we don't call them that. We call them Power Sticks! And Benjamin uses this super cool power wheelchair! He can go so fast he can keep up with you when you run on the playground!"

Mommy teaching Benjamin, Mason and Claire's kindergarten class about Cerebral Palsy.

Oh, Pixar nailed it when they wrote the character of Marlin. Absolutely nailed it. I wrote the director and told him so 11 years ago. I was so grateful that this cute, funny, witty animated cartoon made me feel less alone and made me laugh at the same time!

As part of the "lesson" we let the kids try Benjamin's wheels -- this is Claire giving the chair a spin!

Another little friend taking her turn -- they were amazed at how hard it was to drive because Benjamin made it look easy!

They also tried Mason's POWER STICKS!

Benjamin was glad to be back in his "legs"!

But this weekend as I pondered the beauty of this little movie, I was struck by the weight of labels. Marlin was adamant that he turned the damaged fin into a positive -- Nemo's "special fin". When Mason was given the first pair of cuff crutches to try, I had only been walking the special needs mommy-road for three years. I had no idea what I was doing. I had triplets and that meant no time to delve into any psycho-help books that might have taught me how best to navigate the world of special needs and all the equipment it brought. I had only my instincts. And the day he was handed those crutches, my instinct said "Yuck. Crutch is a negative term -- or at least it has negative connotations. I won't use that!" The first thing out of my mouth was Power Stick...these little sticks would, after all, give Mason the power to ambulate, the power to move around his own space.

Now before you -- or I -- think too much of my emboldening terminology -- I should confess that I also came up with a term for their little bitty orthotics that they began wearing at 1. This time, two years before my brilliant Power Stick revelation -- I would simply call them "puppy dog shoes" because the Velcro had little puppy dogs on it. Lame, right? But somehow, putting on their red (for Mason) and blue (for Benjamin) puppy dog shoes every morning was more fun than putting on "braces" or "orthotics."

Long gloves, microphones, magnifying glasses -- some things never change! (But can you see the little blue "puppy dog shoe" poking out from Benjamin's jeans?)

Clearly, though, labels mean something to me. They speak volumes about our attitude toward the object, device, shoe. And sometimes, labels speak volumes about the person.

About the time that my boys were starting school, I realized that I didn't particularly care for any of the labels the world would use to describe them: handicapped, disabled, special. Yuck yuck yuck. I even read that handicap came from the word "cap in hand" as in begging for money. I was outraged and refused to use that word. But it is awkward to say special needs all the time...and I didn't love that. I also detest the word "disabled" (as if a word could be more negative).

But when I think about it -- really ponder what upsets me about these words -- I know the problem lies with me disliking talking about what my boys CAN'T do as much as it involves the labels. I prefer discussing their wit, their charm, their minds...so I find any term that labels them as less-than-absolutely-amazing deplorable. There.

I have a tendency to down play it as much as possible. When I call to make restaurant reservations the kids laugh and laugh at me because I say: "By the way, I have a little guy in a wheelchair..."  Little. Guy. Little guy is 17...and not so little. But honest to goodness, I struggle with how to let them know without drawing attention to Benjamin's disability. Blech.

So while traveling with hubby two weeks ago, I started to read Dr. Freeman Miller's book, Cerebral Palsy: A Complete Guide for Caregiving. In it, he breaks down the use of the terms handicap and impaired. Reading that chapter was eye-opening for me. Apparently because Mason (at 17) is able to function independently with the use of aides, like his power sticks, he is impaired by his Cerebral Palsy. Benjamin on the other hand, because he requires a power wheelchair and assistance with daily living skills, is considered handicapped by his Cerebral Palsy.

Hmm. Understanding the logic behind the use of the words helped me for some reason.

And yet, I must confess that I was still bothered by the handicapped term. So I decided to look deeper into the etymology of the word. Turns out that its roots aren't from begging after all -- rather the term originated as "hand in cap" as referred to a lottery game as early as 1653. It was not even used to describe a child with physical impairments until 1915.

Claire helping the boys do therapy!

Doing physical therapy at 3...

Knowing all of that probably would not have changed my attitude when the boys were little. I stand behind their need for positive terms to describe the aids that allow them to be independent and reach their goals. And I know that then, just like today, I prefer labels that describe them far more adeptly:


Putting on their puppy dog shoes may have helped my heart way more than it helped their's...and refusing to call them "handicapped" even though my reasons were erroneous, was still my right, and helped my hurting heart.

We are at a different age today. It is their job to determine the labels, the words, the verbiage they use to describe themselves and their Cerebral Palsy. My prayer is that they will move forward in life KNOWING how amazing they are in all that they CAN do first and foremost before they even allow themselves to consider how to explain the things their CP does not allow them to do.

Ticklish is another label they wear!!

Carol - The Blessings Counter

Monday, June 23, 2014

A little respite.

Some days I can not put pen to paper -- or fingers to keys as the case may be. The past few weeks have been reflective for me. I traveled to Delaware with my husband last week. He was speaking and I tagged along for a change of scenery.

The winding roads and rolling hills were like a balm after a busy busy semester for my little family. I took deep breaths and tried to drink it all in.

A tour of the Winterthur grounds made me hungry to see this beautiful estate in every season!

And just to fully immerse me in a few of my favorite things -- the Winterthur estate (estate of Henry Francis DuPont) is currently hosting an exhibit of the costumes from Downton Abbey.  The historians did a beautiful job exploring life at Winterthur -- an American estate home -- during the same time period. It was fascinating history -- and my kids are desperately jealous! :)

I toured another mansion while in the area as well -- the grounds of Alfred DuPont's Nemours Mansion were completely different from the ones his cousin owned at Winterthur but breathtaking nonetheless!

And after that bit of respite, I am ready to charge full ahead with summer, with making memories with my crew and the big decisions the older three need to make in this their final summer before high school graduation. I might need a few more deep breaths.

Do you have a busy summer ahead? What are you looking forward to most? I pray it is full of joy!

Carol - The Blessings Counter