Well, as you might have figured out by now, we spent our very first family vacation at Disneyland. We were able to take this trip thanks to our awesometastic cousins, one set who gifted us with park hoppers, and the other who arranged hotel reservations for us. We are so grateful that we got to take some time to step away and just be a little family on a little vacation. I love that in LA you don’t have to stray far from home to have a great weekend getaway.
And we did! We had a blast. On Friday morning we had breakfast with my grandparents, who live closer to Disneyland than to our home. I am so psyched that we got to see them – they had not been able to visit with Leah since she was discharged from the hospital and have been aching to see her. They were delighted to get some quality time with the little Bug. My grandma didn’t want to give her back when lunch was over!
On Friday night, we headed to the park to meet cousins for dinner, but first we stopped at City Hall to deal with some administrivia involving disability accommodations for Leah and for myself. Rant at the end of this post – feel free to skim or skip.
Anyway. Thankfully the issue was resolved. In general, we found that the cast members were really hit and miss about being sensitive to disability issues. We got trapped in the line at the train station because the wheelchair entrance wasn’t clearly marked and there was an access door at the entrance to the platform – but by the time we realized there was a separate entrance for the accessible car, we were trapped in line by 100 other people and there was no way to get out of the line without mowing them down with Leah’s stroller. The cast members were not apologetic at all and said, “Next time, use the wheelchair entrance.” Hello – we tried! On the other hand, I was impressed at Minnie’s house; I asked Minnie to not *touch* the baby during our family picture because of her special needs and immune issues. Before taking pictures, the photographer double-checked to make sure that using the flash was okay. Most people wouldn’t think to ask about that. It was fine to use the flash, but I’m glad she was conscientious enough to ask.
Here are a few of my favorite moments of the trip:
1) Leah’s face during her first time on “Small World.” She spent half the time looking around at all the bright colors, and the other half staring up at Mandy in adoration: “DOLLIES AND BRIGHT LIGHTS! YOU ARE THE BEST MOMMY EVER!” She was so sad when it was over.
2) Leah’s second time on Small World: She fell asleep in my arms during the wait, slept soundly through the ride, and then cracked open her eyes with a bleary greeting to the world just as we were pulling back into the daylight.
3) Flying baby! Leah LOVES to be held up in the air like a little flying baby! She grins like a little goofball. She flew all over Disneyland!
4) Leah got charmed by a magic wand. She started crying in one of the stores and suddenly a cast member appeared out of nowhere with a magical light-up wand, which silenced her instantly. Our first question: “Where can we get one of those?” Ha. I wonder if that cast member’s job is to make sure there are no screaming babies in the stores. Mission accomplished!
We also took Leah on the Haunted Mansion, the Mark Twain riverboat, Peter Pan, Snow White and Alice in Wonderland (plus the train, as I mentioned). Leah’s favorite part of the dark rides? The magical glowy polka dots that appeared on her mommies’ shirts when the black lights came on (we were wearing red shirts with white spots). Ooooooh!
For us, it was interesting to experience Disneyland not only as mommies, but as mommies of a child with special needs. I think there develops some sort of new radar – like “gaydar” but for special kids – and somehow you just sort of notice people more frequently. Maybe it was the little “Please wash your hands before touching mine” signs on Leah’s stroller (from the RSV shot clinic) – we probably had almost as many people making exclamations over those as we did over the baby! One mom asked us if our insurance had covered the RSV shots – her little girl has cystic fibrosis. Mandy met two moms in the baby care center whose little ones also have g-tubes. It turned out one of them was born with TEF/EA! Not Type A, but still pretty uncommon! So random and cool. We also spotted seven different people with Down syndrome over the course of the weekend. Curiously, only one of them was a child. Not quite sure where to go with that detail but I suppose there could be many reasons.
So anyway, yeah – we had a blast at Disneyland. It turned out to be a pretty popular weekend – the Tinkerbell 5K, 10K and half-marathon took place each morning before the park opened, and apparently Sunday was an unofficial “Dr. Who” day, so there were geeks EVERYWHERE. I spotted a guy wearing the “And then Buffy staked Edward. The End.” shirt. LOVE.
It was also a pretty dirty weekend. There were kids sneezing all over the place, and nobody seemed to wash their hands. While we were at lunch I saw one little girl at the next table sneeze, and then her dad helped her blow her nose into a napkin and then threw the germ-ridden napkin onto the table. OMG. We carried disinfectant wipes everywhere.
On Sunday night, our cousins took us out to dinner at the Jazz Kitchen for my birthday. SO YUMMY. Probably one of the best dinners I have had in a very, very long time. Leah slept through the whole thing, even after the band started playing. The perks of having a NICU baby, I guess. She really does sleep through almost anything.
Other things going on this week:
-Leah ate about 2 teaspoons of sweet potato at her speech therapy visit!
-We had Leah’s assessment interview with the county office of education, which provides some services to kids with special needs.
-Mama got the stomach flu. Yeah. We worked so hard to keep LeahBug away from the germs, so they got me instead. Better me than her, for sure – but it was definitely no fun. I spent all of Monday in bed with fever, aches and chills.
-Last week, we brought Leah to meet our IVF doctor! She slept through the whole thing, but it was still very sweet. In her sleep I just know she was thinking, “Hey, thanks for making me!”
Exciting things happening next week:
-SWALLOW STUDY on Monday!!! They will do a video swallow study to examine Leah’s swallowing function and see if she is ready to really start taking in some food orally.
-Regional Center meeting on Wednesday! We will meet with Leah’s service coordinator and hopefully get this show on the road! Leah’s Kaiser OT appointment was just cancelled for the second time in a row, so she basically hasn’t had any OT services in nearly two months. It is absolutely ridiculous and unacceptable. Once we have this meeting, the Regional Center can start setting up therapists for Leah and her services can begin.
-Disneyland. Yeah… we have one day left on our park hoppers, so we are going to go back for a little day trip when it’s less crowded and do some of the things we didn’t get to do the last time because it was a holiday weekend and very crowded.
So that’s it! Pictures, followed by rant. Enjoy. Ha.
OMG. NOBODY TELL BABY. When we were in PICU, one of the nurses told baby that some imaginary nurse was making her do all the awful things she had to do, like replacing the repogle or helping with blood draws. I named the imaginary nurse “Fabio” because all the other names I suggested already belonged to real nurses.
Here’s our vacation!
January 18! Mama’s birthday!
I’m just going to get on a bit of a soapbox here – mostly for my own future reference and for those Googling about people’s experiences with Disney’s new disability access system. Feel free to skim or skip. Or not.
By now many of you probably know that I was pretty sick for most of 2013. You might also know that I am a person with multiple non-apparent disabilities and have been for a pretty long time.
Disneyland used to have a disability pass system that gave visitors access to the wheelchair entrance if their disability hindered their ability to navigate the traditional lines. Although cast members always stressed that it was not a front-of-the-line pass, in many instances it did function to allow people to skip the majority of the wait time for which Disneyland is so famous. So I completely understand why Disney changed its access policy in October of 2013. In the past couple of years, they have been switching things around so that if you have a wheelchair or walking aid – i.e. you are visibly physically disabled – you can go through the wheelchair exit without a pass, whereas if your disability is non-apparent, you get a paper pass so the cast members see that you are in the appropriate line.
Under the new system implemented a few months ago, being in the wheelchair line no longer gets you right onto the ride if the wait is long. Instead, the cast members provide you with a time to come back so that you do have to wait, but you can still use the alternate entrance. So if the wait time for Peter Pan is 45 minutes in the regular line, the cast member will give you a time interval 45 minutes later during which you can return to the ride. It’s pretty similar to the FastPass system, and as with the FastPass system you can only wait for one ride at a time.
The reasoning for this change is that 1) apparently some people in wheelchairs were renting themselves out as personal tour guides to rich families who decided it was more convenient to skip the main line and use the disabled access pass; and 2) Disney felt that a lot of people were abusing the system by faking disabilities. And I get the concern – I’ve always appreciated the reduced wait times, but have never felt entitled to skip the line. But plenty of people feel entitled to that access even without an actual legitimate entitlement to an accommodation. I have heard of parents telling their perfectly typical kids to act crazy so they could get the pass for kids with special needs. I’ve heard of people wearing fake splints, putting their healthy able-bodied kids in wheelchairs, bringing someone’s empty inhaler, etc. in order to gain access to the so-called “front-of-the-line pass.” So it makes perfect sense to me to make things more fair with a pass saying “come back in 45 minutes” if the people in the main line have to wait 45 minutes as well. It’s about equal access, after all. (Although I can’t help but wonder if Disney is lashing out at people with disabilities after losing a lawsuit to a man with physical and mental disabilities who was stranded on Small World for 40 minutes with no way out.)
So. Here’s how it went down at Disneyland’s City Hall on Thursday night: We brought Leah up to the counter in her stroller and explained that she had some medical issues (which I specified) that necessitated the use of the alternate entrance, and that I had called ahead and Disney staff had advised that I ask for her stroller to be tagged as a wheelchair. Not a problem.
Then I explained that I am also a person with physical disabilities that make it difficult for me to be in the regular lines – mobility problems, issues with stairs, problems with standing for long periods of time. (That’s just the tip of the iceberg and I try not to get into the details unless I really have to because they’re just not pretty). Although we had Leah’s wheelchair access pass on the stroller, I wanted to get my own status squared away so that it won’t be an issue in the future.
The cast member didn’t want to address my disability, and told us to just use Leah’s wheelchair pass for now. I said I’d rather just get the matter squared away, and that I was familiar with Disney’s new policy and had no problem being told to come back in an hour, but I couldn’t deal with the regular line and needed the alternate entrance pass. She informed me that there was no longer a pass for people who aren’t in wheelchairs or using walkers or canes (lie), suggested that if I had a problem with stairs I would have to discuss my concerns with the cast member at each ride and see if they would assist me (lie), and told me that in cases where customers have my concerns they “suggest” that we get a wheelchair (not okay) or utilize the Fastpass system (not helpful).
Let’s set aside the fact that the FastPass system still uses the regular entrances and doesn’t resolve the issue of walking long distances and up steep flights of stairs… can we talk for a minute about the complete impropriety of telling people with invisible disabilities that they don’t quality for reasonable accommodations unless they make unnecessary expenditures to fit people’s stereotypes of what people with disabilities look like? The policy makes no sense, anyway. If someone spends the money to rent a wheelchair they would have access to accommodations, no questions asked, because they would look disabled – regardless of actual physical ability. By not renting a wheelchair, a person no longer fits the mold and therefore must be fine, even if they’re not. What a perplexing arrangement!
So I told her that, and then gave her an earful on the political baggage that comes along with telling disabled people that they ought to be in a wheelchair if they want accommodations. It’s blatantly discriminatory. She didn’t seem to care. Mandy asked if I could bring a doctor’s note next time and she said, “Well, you can bring it but we don’t have to look at it. We get those all the time.” (i.e. they don’t mean anything). I asked if I should talk to a supervisor next time I come, and the girl said, “You can talk to a supervisor but they’re just going to tell you what I’m telling you.”
Ultimately I gave up on her and resolved to return the next time we visit the park, since we did already have Leah’s wheelchair access pass, and since everybody was waiting for me so we could go get dinner.
But I couldn’t wait. I stewed for an hour and went back after dinner. I spoke with a different cast member and told him I had been there shortly before and was dismayed with the experience I’d had with the previous cast member. I told him I’d been lied to about the existence of passes for people with non-visible disabilities, pointed out that I really didn’t want to have to spend my day defending my right to access at every individual ride, was specific about exactly what my limitations were, and told him that for the record it is Not Cool for their staff to tell someone to get a wheelchair.
He hedged a bit before I got specific. I kid you not – initially he actually suggested that I leave the baby with a family member, take her empty stroller onto the ride, and tell the cast members I was using it as a walker. I asked him if that wasn’t a bit shady, and he said no, people could be using all sorts of devices to help with mobility. I told him I wasn’t comfortable using my daughter’s empty wheelchair-flagged stroller to get myself onto a ride and reiterated that it was, in fact, pretty freaking shady. The whole point of getting my own pass is that I don’t think it’s right to hide behind my child’s special needs.
Thankfully, once I explained my specific concerns, he fiiiiinally broke out the disabled access pass (which, tada! does in fact exist) – and then proceeded to show me all of the ways in which it would be super-inconvenient. I’m not sure why he thought somebody with a chronic pain syndrome would want to get a return time for Indiana Jones and then run over to Small World while they waited… but I assured him I could accept not being able to do so. (I mean really – who goes straight from IJ to Small World? And who goes on Indiana Jones with a chronic pain syndrome? Really?)
It makes me wonder how parents are dealing with this issue when they have children who have non-apparent disabilities. One of the women who came to talk with us from the county ed office asked me about our experience dealing with the new system, and I told her how it went for me and for Leah. She had been wondering the same thing – how will Disney deal with the fact that many of its visitors have disabilities that cannot be seen – and many that aren’t even physical in nature? How are they handling the kids with autism or other sensory issues who simply cannot wait in lines? Are they supposed to get wheelchairs as well? What about people with severe anxiety disorders who can’t be around that many people for that length of time or who get claustrophobic when fenced in by bars? As I said, I have no problem being told to come back in 45 minutes. I do have a problem with being told that if I don’t look disabled then I don’t need accommodations.
This policy also raises broader questions about visible and invisible disabilities and the overlapping and diverging challenges people face with each type of disability. It will be something that comes up for Leah throughout her life. In a way it already does. Some people respond to the news that she has Down Syndrome with, “Oh really? Wow! It must not be very severe, because she doesn’t look like she has Down Syndrome! She is so cute!” People have all of these assumptions about what a person with Down Syndrome looks like – and yes, some these are based in fact, as there are similar physical characteristics that people with T21 share. But in other ways, these assumptions blind people to our children’s individuality. I would say Leah looks more like my dad and like my sister (and, increasingly, like me) than she looks like any other child with Down Syndrome. But still, to the extent that Leah really does look like she has Down Syndrome (because she does), that will forever shape the set of assumptions that people will hold about her before they ever meet her. They will think they know everything they need to know about her, and they will treat her accordingly.
But then, how must it be to have a child who looks totally typical and have to try to explain to people why s/he is unresponsive or hypersensitive to sensory stimulation? To have people tell you it’s your fault for vaccinating / coddling / not being _______ enough? To have people say, “If you just ________, maybe that will help” or “You’re just not doing ___________ right” or “Why can’t you calm your kid down?”
Bottom line: By training cast members to evade questions about access for people who are not visibly mobility-impaired, Disney has opened one giant can of worms.