You must be this tall… and able to stand… and not have arthrogryposis to ride this ride.

Back when my dad and I were first working out  their visit, I had  planned on not having any appointments for the three short days they would be here. So when CCS and Laelia’s chiropractor had to happen Friday, the day they arrived, we just shrugged and they got dragged along. We make it up to Lali by going to the zoo the next day.

There was an elephant playing with a log that just fascinated Laelia. But when he dropped the log, Laelia’s eyes got big and she squeaked, “Mama his trunk fell off a little bit!” :)   During my explanation of the elephant trunk/log we got a call from  our awesome  case manager (from our insurance!)  who saw the pictures of Laelia’s foot on  this blog and said, “You need to get her to a doctor! Don’t wait until tomorrow!”   We had been very careful with her ulser  sore doing wet/dry treatments, but we weren’t going to take chances. We made our way back home to grab showers and then headed over to Rapid Care. Sure enough Laelia’s foot was actually  infected!  And a rash was climbing over her skin. She needed immediate antibiotics.  I was  surprised because she never complained!  

Waiting for the Rapid Care doctor.

Signs of infection.

The Rapid Care doctor told us to see our regular doctor within two days. She wasn’t available, but another pediatrician in the same office was.  So we got an appointment the very next day during their Sunday  emergency hours. During that appointment (our forth medical appointment in the three short days  the grandparents were in town!)  it was confirmed to be a skin  infection, but  not a bad one! She wasn’t sick, had no fever, and  it wasn’t in her bloodstream or something dangerous so we just had to keep giving her antibiotics and it would clear up!  He bandaged it and gave us instructions for care and  even miraculously gave us the  green light for our trip to Disneyland the next day! (Laelia was talking nonstop about Disneyland so he made her day! She even invited him to come too!)

For the last ten days we have asked  Laelia every night, “Where are we going in ten days?” Or “Where are we going in nine days?” Or whatever day it was. And every time she yelled, “Disneyland!” So after our appointment  we asked her, “Where are we going tomorrow?!” And she replied, “The doctor?”   Ha! Poor thing.

Oh and at the mention of the “D” word,  my Disneyland-loving (crazy fanatical fan) husband mentioned that  Lali wanted to do more rides but we didn’t know how tall she was. So the doctor had the nurse come in and they  measured her lying on the table. From  flat foot  to the top of her head she measured 36 1/2 inches exactly without having to stretch out her contractures. Well that was perfect for the one coaster she wanted to ride. Charley then asked if  the doctor would  write an official note just in case anyone gave us trouble about it. The doctor did it with a smile and Laelia got excited about riding her very  first little coaster!

But not as excited as her daddy. :)

Doctor’s note officially stating she is 36 1/2 inches in length!

Laelia loves Disneyland. To put it mildly. She knows all the words to It’s A Small World and the Enchanted  Tiki Room. She watches videos about Disneyland when we’re not there. Since we live very close to Disneyland and since she was a free ticket until she turned three, we’ve spoiled her rotten with visits there. She even went to Disneyland in casts, weeks after surgery. Sometimes the promise of Disneyland is the only thing that keeps her going after a hard doctor’s visit or post surgery.

Dumbo Flyers

Grandpa and Grandma caved and bought her a bubble gun. :)

So the coaster she wanted to ride  was  the Gadget Go Coaster. You have to be 35 inches to do this. No problem. She’s  tall enough–or more correctly long enough–to ride. We got to the back entrance for wheelchairs (Grandma and  Lali were sharing one),  and when we got to the front of the line we said, slightly apologetically, “She doesn’t stand but she’s 36 1/2 inches.”

Cast Member Cindy: “She’ll need to stand under the line.”

Me: “She doesn’t stand or straighten her legs all the way due to a condition called arthrogryposis. But she’s 36 1/2 inches long. They measured her yesterday.” I said super nicely, feeling sorry for the cast member’s confusion.

Another AMC mom (Cheryl)  told me this great piece of  wisdom once that helps me in these situations. She said  that some people just don’t have a file in their brain-folder for AMC. It doesn’t compute. In their minds  based on their lifelong experience, all children stand and all children stretch out, so  finding out there’s one who is different just plain rocks their world. It’s definitely a  truism. We all have something that at one point we discover we don’t have  a “file” for in our “folder.” The first time I met a Deaf person (Sue K.)  she didn’t hear the door slam shut. That didn’t compute with me. I had never met a Deaf person, and even though logically I knew she was Deaf, I didn’t get that she couldn’t hear!  Everyone hears doors slamming, right?! :)  I feel dumb now, but I understand when people give me *that* look when first meeting my daughter.

Cast Member Cindy: “No, she’ll have to be held up to the line then. That’s the rule.  She needs to be this tall to ride, and she needs to be under the sign.” She gestured to that “You Must Be This Tall” sign.

(The only problem with not having a folder for something in your brain is that it’s sometimes  really hard to incert the file in other people’s  folders.)

Me: “No, she doesn’t need to stand to ride.” I’m still smiling. “She has a  disability. But I  assure you she’s 36 1/2 inches.”

Cindy: “You’ll have to hold her up to it then.”

Eventually we realize we were getting no where and Charley was forced to hold her up to the darn measurement. She curls up while hanging there so Charley starts to explain, “See how her legs don’t straighten out? That’s because of the arthrogryposis or joint contractures  in her knees and hips. You have to measure her lying down.” Even being held up to the sign,  she is obviously to me tall enough if she could straighten her legs.

Cindy: “She doesn’t come up to the sign. She’s too short. There’s nothing I can do.” Cindy tries to walk away.

Me: “She doesn’t stand and she doesn’t straighten out! I have a doctor’s note, see!” I try to hand her my doctor’s note.

Cindy: “I can’t take that! I’m not a doctor!” She actually pushes the paper away. (Oh and only doctors can read doctor’s notes?)

Me: “Okay but look it states 36 1/2 inches long by proper measurement and it’s signed by her doctor and dated yesterday.”

Cindy: “Her safety is at stake here. I’m going to have to call my lead because my job is on the line.” She mutters more things about her job and how it’s in some sort of jeopardy because of my daughter.

Me: “Well here’s something I made and it’s not medical, it’s just a little card that tells you who she is and what she has.” (I’m still being very nice and understanding at this point.)

Cindy: “I can’t take that! You can’t give me things!” She pushes the card away with open hands and looks horrified.

Me: “Fine then get your lead, but you realize this is illegal to keep us from a ride just because  she’s disabled.”

Cindy: “It’s fine.” She walks off.

Me (yelling at her back as she flees): “IT’S NOT FINE! IT’S ILLEGAL!”

Charley: “Okay calm down.”

Me: *huff puff grinding teeth* I go into advocate battle mode. Something I did not expect at Disneyland.

Ten minutes and several nasty looks from fellow park patrons later, THREE leads  (managers) show up and surround us. We’re introduced to two of them, one hangs back blocking our exit.

Lead: “What’s the problem here?”

I explain that my daughter is definitely NOT the problem–the problem is lack of education of the staff. The lead goes through a spiel on  how important safety is, once again making me some sort of bad mother doing something unsafe with my child. I correct her in full educate-the-people mode. I made her explain their policy for children who can’t stand. Apparently their policy is to ASK THE PARENTS!  Something the staff must not understand. She then  asks if  I STILL want to ride the ride. I never did want to ride the darn kid’s ride so I turn and ask Laelia, who  is fully capable of answering for herself, and  Lali begs to ride. The lead seems charmed by Laelia’s enthusiasm and finally lets us on the ride. She also  mentions that  the only other ride in the park that requires this height requirement is the Matterhorn and  asks me if  we would  like  them to call ahead to make sure this doesn’t happen again? I said no thanks since I planned on now avoiding the Matterhorn like the plague. I just couldn’t  fight another battle again today.   We finally got on the Gadget Coaster  ride.  Laelia loved it and begged to ride again. I was so  near tears that I just couldn’t go back in line and deal with all those people again. So we fled. We then, after a short trip to It’s A Small World, went to Guest Services and I explain what happened. While I explained I also broke down into  tears which I hate! Then I asked if there’s some sign/card/placard they could give us so this doesn’t happen again. (Even something hand written.)

Cast Member Colby: “We don’t really have anything like that. If your child can’t stand it’s our policy to ask the parent for the child’s height and we take their word for it.”

Me (crying my eyes out): “But that doesn’t work out in real life! I’m still seen as a bad guy. So can I have some sort of card with her  height on it? Or a pass for  certain rides so we can get on  without harassment?”

Colby: “We don’t have anything like that. I can offer you some free ice cream… if you want.”

Me: “Can I make a suggestion that you have some sort of official card with, say, Micky’s picture on it, and all it has to say is, ‘Can Ride  All Attractions for 35 inches and smaller.’  Or something like that?”

Colby: “We don’t have anything like that.”

Me: “No, I mean that’s my suggestion. Like for a suggestion box. You should have something like that. Can you pass that along?”

Colby: “We don’t really take suggestions.”

Colby was actually really nice (and  we did get five ice cream sandwiches out of him), but I wish he would have at least lied and  said he would  pass along my suggestion. Well maybe he thought better of it later and did pass it along. It’s a good idea! Some children who can’t stand yet  are small enough  for parents to bring strollers instead of wheelchairs to the park, and those children will run into this very problem! We can’t be the only family!

So we headed over  to California Adventure. Laelia fell asleep so we left her in a corner of  the park with Grandma while we rode the Screamin’. When we got back, Laelia had been awake for the last twenty minutes and  begging Grandma  to ride the bumper cars. That was the ride we parked her in front of for her nap.  So we got in line. Turns out this ride has a height requirement:  35 inches. You’ve got to be kidding me. We approach the entrance by the “You Must Be This Tall” stick with dread. I hold my breath. Charley chivalrously says he’ll handle this. He calms me down and says that now we have all the tools and rules we need to get by without a fight.

Cast Member Nathan: “I’ll have to  check her height.”

Charley who is holding her: “She’s 36 1/2 inches and doesn’t stand or straighten out all the way. She won’t be held under the sign. But I can tell you she’s exactly 36 1/2 inches.”

Nathan: “Then I’m afraid I can’t let you on.”

What?!

Me: “If a child can’t stand isn’t it your policy to ask the parents and take their word for it? We were just told this by three leads!”

Nathan: “Um, if she can’t stand under the sign then she can’t ride.”

Me,  lowering my voice  dangerously: “She’s disabled. (Wow, she’s had to hear that a lot today.) She’s 36 1/2 inches long. You’re not allow to ask for this, but I’m VOLUNTEERING   her doctor’s note with this information written on it.” I hold it up in front of him.

Nathan looks around furtively, “Okay go in.” He’s speaking  quietly like he’s letting us get away with something.

Me: “She meets all of your requirements for safety!” That’s my way of saying, “We’re not getting away with something and you’re not doing us a favor here! She rightfully gets a spot on this ride with every peer who is able-bodied.”

Okay this ruined my day. We joked about marching back to Guest Services and getting more ice cream. If we stayed much longer we’d walk  out of there with a year’s supply! Ugh but even chuckling felt hollow. My daughter seemed to be having a great time, but it’s not like this was all lost on her. She saw me cry. She heard over and over again that she couldn’t stand, couldn’t straighten out. What does that do to a child’s thinking about herself? Plus I was full on depressed. She would beam up at me and I would force a smile back down at her through the agony.

I mean in one day I’d been told that I’m a bad parent by putting my child in danger, or I’m a bad person by trying to do something sneaky.  I risked the employment of the cast members by not leaving, and made everyone uncomfortable because they had to deal with my sweet daughter wanting to ride a darn ride.  In conclusion I must be a bad person. That’s what I read in the eyes of other guests in the park who walked around us  to get on the  coaster or just  stared with this look that read: You, Mother of Different Child, are bad. I was completely vilified.

I hate when people are unhappy with me. I hate being *that* mom. I hate when I’m not following the rules. If it had been just me there I would have walked away rather than welcome a conflict. But it was my daughter. I’d do anything for my daughter, and I won’t let people trample her rights as a 36 and a half inch tall young lady. But I don’t know how to shield her from this. Or from the other guests at the park who look at her as the poor little girl with the bad mother.

It was right before we left the park, right as I was just feeling my worst, that  Laelia coughed. And it wasn’t one of her cute little coughs either. Oh no, it was a Nasty McAwful cough. One of those coughs smokers have. Sure enough she was getting sick. Of course. At Disneyland. We went home.

That night she coughed more and more as the hours went by. By the next morning she sounded hoarse, couldn’t stop coughing and had a runny nose. She also felt warm to the touch. I jumped online and discovered that these antibiotics we just started taking  the night before can actually  make colds worse or make you more susceptible to colds because they indiscriminately kill the beneficial bacteria in your body. And apparently they work fast. Goodie.

So I’ve had to cancel her PT, her chiropractor, her play date, the rest of her week at school, etc.  And I also had to take another leave-without-pay day off work.  

Not only that but we also went to our orthotics appointment finally only to discover that Laelia’s AFOs weren’t working for her at all. We actually can’t wear either one anymore because there are now holes in both of her feet! (And she is required to wear shoes to go to school!) Is this really happening?!!!  The AFOs have no padding and the heals of her feet were left to scrap the back of the shoe. It’s not just an issue of needing more padding, it’s a fundamental issue. So now we’re trying to get someone to make us new ones. Doctor van Bosse has been wonderful about emailing and trying to coordinate with the orthotics guys in Philly, but we may have to get something going down here as well. It’s a mess. The doctor we need to see locally isn’t available to get us in for an appointment for one thing. So Charley emailed Dr. vB our orthopedic’s phone number and hopefully they will coordinate between themselves. In the mean time it’s been suggested by more than one doctor that we get Laelia in plaster casts (!!!) until they can work out new AFOs for us that could take six weeks to figure out! Back in casts!!! No!!!!!!!!!!

Did I mention we did Turtle Talk with Crush and my daughter didn’t get called on because she couldn’t raise her hand? Did I mention our CCS appointment that we finally got worked out didn’t give us an OT eval?  Not only that but the  paperwork said  that “the mother requested PT only!” Which is just wrong! So now we’re back to fighting with CCS who hasn’t returned my phone call after a week of waiting. Yeah. So it’s been less of an Enchanted Tiki Room  week and more of a Mr. Toad’s Wild Ride lately. We keep waiting for Laelia to get better and not be in pain before taking our overnight break that we got for Christmas, but I’m starting to think that is not going to happen. I just hope this can all get worked out quickly and she can be a sickness-free, medicine-free and  pain-free little girl again.

7 Responses to “You must be this tall… and able to stand… and not have arthrogryposis to ride this ride.”

  1. Kristin says:

    I just wanted to point out this bit that you wrote…”I hate when people are unhappy with me. I hate being *that* mom. I hate when I’m not following the rules.” I just wanted to point out that YOU were following the rules. You had Laelia measured to provide a height. You went to rides that she would qualify for.. It’s not your fault that these people are woefully ignorant of their own policies. Just remember that. Do not put the blame on yourself for their stupidity. Sometimes we mom’s need to be reminded of that. :)

  2. Stacey says:

    I have heard more horror stories about Disney than I care to remember…You’d think they would be the best when it comes to ADA…but they really aren’t. I have one friend who is blind. He is an adult, and his vision loss is 100%…he can’t even see light or dark (which only happens in 5% of legal blindness cases). Anyway, he was staying in one of the Disney resorts…by himself (well, with his guide dog) for a conference. He called the front desk to see if he had any messages waiting and she said to check the blinking light on his phone. He explained that he is blind, and is there anyway he can just call a number to see if there is a message waiting. “No sir, you just need to look at the light.” “Yes, but I can’t see it. I am blind.” “I’m sorry sir, that is how you check for messages.”

    unbelievable

  3. Missy Rose says:

    Oh Alexis. I read this post and cried. It’s so hard. It’s so incredibly hard, having your child not fit into someone’s file of what children are suppose to be like, constantly feeling like you’re asking for too much, asking for more than you thought you would have to as a parent.
    It’s not an easy road to walk. But you do it well. You do it with thought and heart and with all your strength. Don’t get discouraged. You did the right thing for your little girl. If she heard anything, what she heard is that sometimes you have to fight hard because it’s important. You fight hard for the people you love.

  4. Suzanna Bell says:

    I cried for you too. You are so strong. I truly believe that these sweet handi-capable children’s parents were carefully selected to protect, comfort, work for, and advocate on their behalf. I know I’m up for it! I wish we were closer to you guys. I would LOVE to go to Disneyland WITH you. We could stroll both our beautifully different children up and fight these battles together. At least then you would have back-up. I hate for anyone to feel so “alone against the world” on minority issues.

  5. Tam says:

    alexis you are my hero! we have not had very many encounters as we dont go too many places but I hope that I can be as strong and persistant as you were without bursting into tears(but I usually figure if the tears work …..) I feel very proud of myself for cancelling the chair order we made because I dont feel we were given any choices and I dont believe it IS the right choice. we mamas have to stick together. boost each other up when we need it. and YOU mama are doing one heck of a job standing up for your beautiful little girl. she will be stronger because of it. now if only people could just look at a person who is different and say ahh ok, differences are what make things interesting!

  6. Laura says:

    Don’t worry about Lali hearing you say a bazillion times “She can’t stand” etc. I heard my mom say it alot to narrow-minded people too. Sure it may make her question things sometimes, but it’s how she will learn where she stands about her disability. Hearing my mom say that didn’t really bother me. Just like the people who commented above me say, Lali is seeing you fight for something important. In time, she will learn to fight too. I think of myself as a shy person, normally, but if I feel that something is not happening the way it should be, I get on my soapbox and start yelling if I have to. And I get it from all the times I saw my mom fight for me. So go on throwing punches where they are needed, because eventually Laelia will start throwing some of her own. :)

  7. Cristina says:

    Oh my goodness, this post was so incredibly moving. I’m a recent OT graduate studying for my licensing exam and found this blog while googling various splints and just HAD to post and let you know how moved I am by your sweet little girl and your heartfelt posts. I was screaming inside at those incompetent Disneyland employees while reading, UGH! You sound like an absolutely fabulous advocate on behalf of your child!

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