California Girl Takes Utah Girl to Disneyland

I’m a California Girl and California Girls don’t go to Disneyland on weekends or holidays. We go to Disneyland on overcast, slight chance of rain days, in the middle of the week.

My family moved from Southern California when I was 11 years old. I am not sure that I ever really became a Utah Girl, but that’s not really the point. Once in Utah, I was struck by my peers’ conversations about Disneyland. “How many times have you been?” They were one-upping each other on the bus. “Four times” or “five times” produced dropped jaws. I kept quiet. I shook my head. Oh, those poor theme-parkless kids. They’d never believe me, even if I could add up all of those trips and produce a number for them.

Now, I have Utah Girls of my own. And I get it. Disneyland is no longer a mid-week, skip school, stay for fireworks and drive home exhausted kind of thing. It is an event. It is a… dare I say it? A long weekend kind of event, now that we live in Utah. My cute girls have no idea of the personal rules I break for them. Taking on Disneyland on a weekend? Sheesh!

Nevertheless, we do these things as parents… we do them for our children.

But… I still have an unfair advantage over the rest of you who are investing hundreds of dollars on a weekend, where your kids had better have fun, they’d better like it, and they’d better behave because it costs a small fortune just to walk through the metal detectors and finally cross the threshold to the Happiest Place on Earth.

Happiest Expensive Place on Earth

Happiest Expensive Place on Earth

Yes, it’s true. I have an unfair Disneyland advantage… I have a child in a wheelchair.

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Now, if you can’t hack this conversation, click away. I’m just telling it like it is. 😉

It used to be that a wheelchair, in Disneyland, was akin to a free ticket. Not “free” free, but pretty close to it. This fancy wheelchair used to allow us to walk right up the exits of rides, wait a car or two and then ride away in complete bliss. Especially blissful when you realize how many other folks were left juggling tired children, backpacks, strollers, and $6 sodas for hours on end, often for one short spin on Dumbo.

Well, things have changed a bit at Disneyland. Each time they update a ride, they also manage to bring it up to code. California Adventure, for example is so stinking accessible, we get to wait in their wheelchair-width mazes just like everyone else. Don’t waste your time trying to get an accessibility pass in California Adventure, go to Disneyland for it.

When Lucy and I went to Disneyland, we went with our friends Emily and Millie. You might recognize Millie as the little cherub on the cover of Baby Signing Time.

I was already in California. Emily, Millie and Lucy flew in together and met me there. Lucy and Millie held hands throughout the entire flight!

Holding Hands on The Plane

Holding Hands on The Plane

They arrived and we immediately went to the poolside restaurant.

California Girls

California Girls

Lucy ordered jumbo shrimp cocktail, her favorite.

Who You Calling Shrimp?

Who You Calling Shrimp?

I was performing the following day, so they came along to watch.

Orange shoes? Check! Colored Fingers? Check!

Orange shoes? Check! Colored Fingers? Check!

Emily spotted Scott Baio, she said that she had always wished he could baby sit her… (“Charles in Charge” reference folks) Lucy, in the background, was unimpressed.

Emily and Scott

Emily and Scott

The booth located right behind our Signing Time spot was a company called Cade Christian. Here’s the funny thing. Each year that I have presented at the Baby Celebration Los Angeles, I have drawn a good sized crowd of Signing Time Families. This crowd (Yeah, you guys) stays after and creates a substantial line for over an hour, waiting to take a photo, get an autograph and buy products. And each year some of the neighboring vendors have complained about the big, long line of parents and children standing beside their booths. (I’m not kidding.)

So, this year. I gave the Cade Christian folks a heads-up of what was to come and they said, “Oh we heard about that, so we requested to be right near your booth. They thanked me for bringing so many families to the event. And then they hooked the little girlies up with hats and sent one for Leah as well. Then Em and I bought some for ourselves.

Hat to Hat

Hat to Hat

Next stop, In-N-Out, on our way to Anaheim.

Yummy!

Yummy!

We arrived at Disneyland and checked in at City Hall to get our “perma-handi-fastpass” <---- not what it's really called, just what it does. Now, if you have just a regular kid in a wheelchair, maybe a broken bone or something, you don’t get much priority. If you have a child in a wheelchair who might have a difficult time waiting in long lines you get a little upgrade. They gave us the Super-Duper-Upgrade <---- not what it's called, just what it does- when they realized that Emily and I not only had Lucy and her wheels, but that little Millie is deaf.And we were off! We let Lucy lead the way. It was one of the few times I felt uninvested. If she wanted to ride "Dumbo" 35 times in the next 48 hours, so be it. This was about her. And by the way I stopped counting after we rode "Dumbo" 8 times. [caption id="attachment_1872" align="alignnone" width="640" caption="Dumbo at Night"]Dumbo at Night[/caption]

So Much Fun She Can't Even Open Her Eyes

So Much Fun She Can't Even Open Her Eyes

Can We Ride This One Again?

Can We Ride This One Again?


So, here are some things I didn’t know before this Disney trip.

“It’s A Small World” has been updated, and I don’t just mean the inside. The boats are all new and they have a special, wheelchair ready boat! Lucy was the queen of the world. I also stopped counting once we had ridden “Small World” 8 times.

A Small Accessible World

A Small Accessible World

After All!

After All!

If you have a child with special needs and you need a place to handle toileting, go to the First Aid Station (behind the hand-dipped corndog cart and past the Carnation Baby Care Center) They have cots, where you can lie your child down to change them in a private room with a sink and a toilet. They also have cold drinking water for free. They are cold water pushers. You almost can’t escape without cold water coming with you. This was Mecca! You have no idea how much time I spend scouting inconspicuous locations to do a quick-change for my 9 year old.

In the very accessible California Adventure, the newest ride “Toy Story Midway Mania” has wide lanes, so we got to wait with everyone else, BUT they have one car that will accommodate a wheelchair. We didn’t use it the first time, because they asked if we could transfer. I said, “Yes,” because we can transfer, but seriously that was the worst experience ever! The cars make hard lefts and hard rights with no warning. You are supposed to be shooting, but it doesn’t go so well when you are hanging on to your child who cannot sit independently. It was physically exhausting and our score was terrible! 😉 When we unloaded I let the guys running the thing know that “Can you transfer?” was not an adequate pre-requisite. I suggested they ask, “Can your child sit unassisted?” I am sure they were enthralled to hear my quick explanation of trunk control and head control and how Lucy may have just sustained whiplash and how I may have thrown out my back trying to keep her from getting her bell rung on the side of the car.

But… then they offered their fancy-schmancy-wheelchair ready car and that was a blast! Lucy sat in her wheelchair in the car and they strapped her wheels down. To make up for the first ride, they let us go two more times without waiting. But I think that was because it was easier to just let us keep riding than to maneuver that fancy-schmancy thing on and off the track. Lucy could shoot her own gun by bopping a button on top or yanking on a cord. I totally crushed her score though.

In Her Very Own Wheelchair

In Her Very Own Wheelchair


The parades were great. Lucy is not of fan of anything in costume, especially bigger than life costumes. She even hates Hopkins at our Signing Time shows… Hopkins!
Talking Cars are Non-threatening

Talking Cars are Non-threatening


Don't Stand, Don't Stand So

Don't Stand, Don't Stand So

Sully is Just Too Big

Sully is Just Too Big

And of course we got to relive memories of the infamous submarine experience in Mexico, but this time with the promise of Nemo below. And this time I wasn’t worried.

Don't worry. I've got this!

Don't worry. I've got this!

There Are Clown Fish in The Water

There Are Clown Fish in The Water

For those who cannot maneuver through the tight spiral staircase, there is another option. There’s a room that shows a movie of what you see under water. We tried both and we all agreed that being in the sub was much more fun.

Lucy really wanted to see Ariel, so we stopped by the restaurant Ariel’s Grotto on the first day. We asked about reservations for dinner the following day and were told by the hostess that reservations were not necessary. But, when we arrived for dinner the following day, all of the seatings were filled! Lucy was bummed. I explained what we were told the day before and today’s hostess said, “Reservations are not necessary, but they are recommended.” If your kiddo is an Ariel fan, don’t make this same mistake. Make a reservation.

The moral of the story is 1 in 1000 kids are born with spina bifida- if you are lucky enough to get one, then you are also lucky enough to park in the front row at Costco, even during the holidays. You also get to ride Dumbo and Small World countless times without waiting!

If ever you get stuck going to Disneyland on a busy holiday weekend, Lucy and I are available for rent.

Strong Enough To Be Your Mom – Part 2

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility 😉 there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”
On the Boat Cancun '08

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years. 🙂

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

Welcome To DisneylandEverybody say "Dumbo!"

“Mom, can I hike through Goblin Valley?”
“Yep.”
Goblin Valley, Utah

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”
Delicate Arch - Moab Utah

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.
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Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

Lucy Coleman