Disneyland (CA) - Accommodation for Blind People

Picture shows Mickey's Fun Wheel at Disney's California Adventure park.

Disney used to be famous for allowing blind people to jump to the head of the line. Boy was I keen to experience that with Charlotte! But they have stopped the practice and now blind people have to queue like everyone else.

But Disneyland did give us a few perks when we asked nicely for them. These all took the form of preferential seating for live shows, of which we saw three during our four day visit in California.

Here’s what we saw, what we did and how it all worked.

Fantasmic at Disneyland

Fantasmic is a nightly show in the Disneyland park. The week we were there was expected to be a busy week for the show because it was the first week that annual passholders had re-entry to the park after the summer high season and Fantasmic had only re-debuted a few weeks ago.

We used our Magic Morning (hotel guest early entry) to queue for spots at the Frontierland rope drop. This was so we could get Fastpasses for the 9pm show. Perhaps it wasn’t best use of our first Magic Morning, but we did go straight to the ticket machines (escorted there by “Cast Members”) and got our tickets. That’s step one. To get any special accommodations for the show, make sure you have a Fastpass for that particular viewing.

When we came back for the show, at about 8:20pm, we approached one of the “Cast Members” (I can’t bring myself to drop the inverted commas!) who was manning the roped off queuing area. I told them we had someone in our party with a visual impairment and asked if there was any special accommodation they might be able to provide. First they confirmed we all had Fastpasses, then they seemed to get a bit confused about what sort of accommodation to provide. They are well set up for wheelchairs, but an ambulant disabled person was a bit perplexing. But they were good about it. I just asked if there was anywhere that we could stand to watch from closer so that she would have a shot at seeing the show.

They directed us to the wheelchair queue for the show. For reference, the main queue is on the dock for the Mark Twain Riverboat, and the wheelchair queue is just to the left of this, when you are facing the dock. It feels a bit weird to be standing around with the wheelchair users. It’s times like these I think we should carry her cane with us. I told Charlotte to “act more blind” and she told me she was going to act exactly as she always did. Good girl!

After the rest of the Fastpass audience have gone to their section, they direct the wheelchair users, and their carers, into a separate viewing area. The area is to the side of the main stage, but right at the edge of the water. The wheelchairs line up along the railing and the carers stand behind them, leaning on another low railing. Disney insist on the space in between being left open, and are very strict about keeping non-wheelchair users off the front railing.

Overall, it was a good viewing spot, better than we would likely have got in the Fastpass section. The girls could see over the heads of the wheelchair users, and we got to lean / sit on a low railing. This is very welcome when you are waiting 30+ minutes for the show to start. The side view was restricted because it was far to the side, but it was nice and close to the water. We could see Mickey on the island, and the dragon, but the main action there was too sideways to feel very powerful, and much too far away for Charlotte to see anything. What we did have a good view of was one of the side screens. Much of the show is projections of favourite movies on to a screen of water. They have three of these screens set up, and the wheelchair viewing section is right in front of one of the side screens. Charlotte could see this pretty well. Some of the action is on barges that move along in front of the audience so we had a good view of the barges as they went past. Some of the best moves performed by those on board are saved for the premium viewers in the centre, but it was still a good vantage point.

Conclusion: well worth asking for this accommodation at Fantasmic – for the opportunity to lean on the railing alone!

World of Color

This is the nighttime show at California Adventure park. With dessert packages selling for $80 each just to have a central seat and a plastic box of sponge cake and grapes, I figured this was a show not to be missed.

As for Fantasmic, I set off to get our Fastpasses early in the day. There wasn’t such pressure for passes for this show, quite likely people were keen to see Fantasmic as it had just re-opened. Lucky for us who wanted to see World of Colour.

We returned for the 9pm show at 8:15pm and went to one of the cast members who was manning a roped off area. I asked her what accommodation they might be able to offer for a visually impaired person. She had no idea, but she asked her colleague, and together they went off to call their manager. He was a lovely man who asked us what we needed. I explained that seeing up close was the best possible solution for us, and said that otherwise, we were fit and healthy. He asked if me minded getting wet and when we said it was fine, he took us to the ‘WET ZONE’, plastered with signs warning people that they might get wet. I think we might have been able to walk up near to the spot we had for the show, but bless him, he took us to a small roped off staircase, marked ‘Reserved’ and told us this area was entirely for us.

We felt like total VIPs! We reclined on the stairs, with a (close to) front and centre view of the water. A nearby Cast Member offered us warm hugs and reassured us that the wet zone might be a bit of a mist of spray, rather than a half hour downpour. (It was somewhere in between.) We snapped and connected some more glow sticks, and got ready to watch the show.

Then we experienced our own taste of the famous Disney Magic. A security woman came up to us and sought out Charlotte. She told us that her colleague, who showed us to our “seats” had told her that this child was to start the show. She gave Charlotte a magic torch and showed her a button to press. Charlotte was to hold the torch out towards Mickey’s nose on the Ferris Wheel and press the button. “Not now! You don’t want to start the show now! When I tell you, I’ll come back in 10 minutes and tell you when. In the meantime, you practice with the other button.” She just made it back in time to count Charlotte down from 10 and she started the show beautifully. Sob! During the show, Charlotte told me that it was the most beautiful thing she had ever seen, and she couldn’t believe that she had made it all happen with her magic! We were lucky enough to see the man the following day, so I was able to go up and thank him for making it so special for us.

Frozen at the Hyperion, California Adventure

The third show we saw was the stage musical of Frozen in California Adventure park. We arrived just under an hour before the start of the show. They have a ‘holding pen’ where all the audience waits, in their selected section: Orchestra, Stalls, Balcony. I was going to go for the Orchestra section, but thought it was worth asking one of the staff who was there at the queue. She was happy to take the decision straight away that we should go through the disabled seating area, saying this queue got let in first and were able to choose their seats on arrival. Happy days! There weren’t too many others there, I didn’t even notice the usual array of mobility scooters. Once they let us in, we headed straight for the front row and Charlotte had a great view of the performance.

Dark rides

Another quality that Achromats, in particular, will appreciate is that Disney has a large number of rides that take place indoors, usually in very dark areas. I presume it is due the cinematic heritage of the company, and the fact they are recreating parts of their films. We didn’t spend much time in Tomorrowland, and Space Mountain was closed during our visit, but that section seems to me to be almost entirely indoors. Fantasyland has lots of the kid story rides that take place indoors, we went on Mr Toad’s Wild Ride, Snow White’s Scary Adventure and Pinnochio’s Daring Journey. Adventureland has Indiana Jones, Pirates of the Carribean plus the Tiki Room while even Splash Mountain is more indoors than out.

Overall, our Disney trip was very successful. As a family, Charlotte’s eyesight doesn’t really limit us and we typically carry on and do whatever we choose, with Charlotte joining in too. People don’t realise she is blind and we always watch her closely to her to make sure she doesn’t trip over kerbs and such. We didn’t go there expecting special treatment, but it was great to get a better viewing position at the three shows. She still liked the rollercoaster best.

Swimming Goggles

Charlotte got some new swimming goggles today.

The lovely dispensing optician at Great Ormond Street helped us out with them. I asked about goggles when we were there for glasses. I baulked a bit at the price (£120), but then decided that I should go ahead and get them.

They are made up to her prescription and custom dyed to the full light transmission factor that we want. I think these are 40% with a grey tint. Charlotte doesn't like a brown tint because she says it distorts the colours. I don't understand, but I don't question her judgement of what she can see and what she likes.

One of the best things is how the rubber edges come all the way up to the front of the lenses. Normally, the glass piece is flat on the front, and wraps around the sides towards the strap. These are flat on the front and then the side piece is solid. No light transmission. It might make her a bit tunnel vision, but should be great for bright conditions. I think she really likes how dark they are, but we won't get a chance to test their effectiveness until the summer. 

Hope she doesn't lose them at school!

You can see how wraparound the rubber is here.

Movie Review

Verdict: who knows?

Charlotte's first trip to the cinema was not a great success. I admit, I had high hopes. After reading a few adult Achromat comments about how they loved the movies, I was expecting that she would be enthralled by the size of the screen and the darkness of the surrounding room.

I let her choose the row we sat in. We had row B. Actually, I lie: she wanted to move forward one more row but I drew the line at the second row. I think she wanted the front row because she thought someone might sit in front of her.

She tried looking at the screen with dark glasses on and off, and eventually went for off. She often chooses to wear them at home when she is watching TV. She seemed to see fine but she was completely bored less than half way through. She had one particular character that she liked so she pointed her out to me every time she came on screen.

I guess she just didn't like the movie.

Press Clippings

More Achromatopsia in the news today. I am in danger of turning this blog into a clipping service!

Local newspaper article about two sisters living with Achromatopsia. This previous article about one of them is better written and is, to my mind, more interesting.

This week, the BBC featured research into retinal ganglion cells: Drug lets blind eyes see light. It does not refer to Achromatopsia but includes a magnificent picture of the retina.

Fireworks night

I hope all the achromats in England had a good time at Bonfire Night this week.

We took Charlotte to her first firework display and it was so gratifying to watch her sweet little face lit up by the fireworks as she looked up and took in the display.

Acroma-Summer

It's timely to give an update of how Charlotte has been getting on during the course of our summer activities.

As each year passes, she gets older and becomes more independent; we get a clearer idea of what is in store for her.  I've been more conscious about what goes on at school but I don't often take the time to document what is going on in other areas, particularly outdoor activities. 

I'm pleased to say that she is busy living an active life, playing hard, having fun and we don't notice many areas where she is limited in what she can do.  To most people she is a normal child who wears cool sunglasses.

It is important to say, in every setting, Charlotte never, ever, hesitates to get outdoors.  She loves being outside and she loves sunny days.  She does not seek out the darkness, nor does she exhibit a preference for cloudy days.  Sure, she sometimes chooses to go indoors after playing outside, but no more than her older sister, who can often be found reading on the sofa.

I'll break up my outdoor observations into three different areas: at home, out and about, in nature.

At home

In our own garden, Charlotte shows complete independence.  We have some tricky steps down from our back deck to the lawn.  They are different depths, heights and materials and have no handrail.  Nightmare!  She has no difficulty with them because she has memorised them perfectly.  She does take them slowly and gets on to the lawn as fast as possible.

Once in the garden, we have a very flat lawn with no lumps, divots or banks.  But she doesn't restrict herself to the lawn, she loves to explore, climb up in the flower beds, behind the shrubbery, everywhere she shouldn't be!  She is a huge fan of the trampoline and climbs on and off independently.  The only thing she can't seem to do is find her shoes if she has kicked them off willy-nilly and they have landed under the trampoline.

Out and about

Being out of the school/home routine has given me an opportunity to observe Charlotte in unfamiliar environments.  She rides her scooter to school, this takes 7 minutes and covers very familiar pavements (usually being pulled by me).  I'm guessing here, but I think the scooter gives her a lot of confidence because it provides a constant connection with the ground.  When we were away recently, we didn't have the scooter, and she had to cover unfamiliar ground, all the time .  She held on to my hand almost constantly.  I am unclear if this is because I always take her hand, and often insist on it, or if it is because she wants to.  I'm thinking she wants to because when a friend took her hand one day, the reaction was immediate: "Wow, Charlotte, you have a strong grip!"

I am always very clear about telling her every time the ground changes level.  "Step.  Step.  Step" is a constant refrain.  "Big step."  "No step."  I do it instinctively and don't even think about it, until I get frustrated with my husband for not doing it.  I describe how far the step out of the car is, even tell her when there are no steps but the ground surface has changed.  She also benefits from assistance at a new playground, just to find all the equipment.  A big sister is very helpful here and they are soon at the top of the tallest slide.

When we stayed in someone else's home, I put masking tape down as markers on the outdoor steps.  The tape wore off after a few days and Charlotte asked me to replace it.  She told me where the tape used to go, that it was there for her and that I was to replace it or say step-step-step!  She seemed so knowledgeable about the steps that I didn't replace the tape!

In nature

Lumpy ground is really difficult for her.  Going from the car, across a pavement, uneven lawn and on to the beach is quite an obstacle course and I don't think she enjoys it at all.  At the moment, I am trying to get her to lift her feet high when she walks, to avoid tripping and to deal with changes to the surface level.  She is such a shorty that she pretty much needs to lift her knees to her chin at all times.  I'm so pleased that she is in Crocs this summer and not flip flops, they are protecting her from stubbing her toes endlessly.

We tried a little "hike" while we were away.  It was essentially a nature trail through the woods.  It was covered with tree roots and rocks with some steep up and down sections.  She did really well but there was no way she could have navigated it independently.  Walking a nature trail, holding someone's hand is quite a challenge, the path is too narrow to walk side by side so I often had to take the side edges and try not to fall off.  When we got to the rocky river bed, there was no way that she was not going to try to leap from rock to rock.  Little mountain goat!  I'm not entirely sure how the nature walking is going to pan out as she gets older. 

The girls enjoyed walking around on some old train tracks.  I hated it: it was too hot and the going was really slow, stepping from sleeper to sleeper or balancing along the rails.  I talked her into walking along the gravel path beside and we made much faster progress.

She loved swimming.  When we started lessons, I told her teacher that she has really, really bad vision.  I didn't go into more detail than that - there would be other kids who need glasses who have to take them off for swimming.  At the beach, we were paddling rather than swimming and she was always the last to get out of the water.
I do worry that I find myself pointing out details to her older sister and not bothering to show her extra stuff.  I don't know if I should try harder or not.  If I see a crab or a tadpole, I could spend ages trying to point it out to her and she still won't see it, and then it's gone.  Frustrating for her and for me.  Maybe when she's older.

We've been having a really good summer and, fingers crossed, it's not over yet.  When I first found out about Charlotte, I thought that meant the end of beach holidays for our family, that she would prefer rainy days and indoor games.  But none of that has proved true.  She is active, outgoing and adventurous and she doesn't, for a minute, think there is anything that she can't do.

Tinted swimming goggles

I got the darkest tinted goggles I could find for Charlotte.  (These ones from Amazon)

She has been wearing them fine at indoor pools but they did not cut the mustard yesterday at an outdoor pool on a sunny day.  She isn't swimming independently yet so they weren't a problem in the pool but when she got out, she was really cautious about where she was walking.  It was obvious that she couldn't see well at all. The contrast with her behaviour once she put on her tinted glasses was remarkable.  Clearly, the glasses make a huge difference.

I'm not sure how we are going to be able to help her with swimming as she gets older.  Contact lenses under goggles seems like they would easily get lost.  She can wear her glasses for casual swimming but not in the ocean, or proper kid swimming where they are jumping in  and going under the water all the time.  Living in the UK, I guess this is not going to be much of a problem on too many days of the year ;)

Playdate planning

Charlotte has her first drop-off playdate this week.  I have been trying to walk the line between preparing the carer for keeping her safe on the walk home from school and having them to think it is all too daunting to take on.  

I ended up saying "Don't worry too much, the worst that will happen will be that she falls over."  I think I need a one liner about a single task, something like, "Don't forget, she can't see a step until it's too late".

Watch me!

One of the benefits of having a blind child is that the endless “Watch me, Mummy!” can be faked.

“Yes, yes, I’m watching darling!”

Except I’m not, I’m looking down at my book/phone/work as one does when one is supervising small children in the garden.

“You’re not watching!”

Huh?

“I can’t see your face!”

How much vision she has is still a source of mystery to me.  We were in full sun and she was moving confidently between light and shade and she could see if my face was turned towards her or not.  Partial Achromatopsia?  She still hasn’t let her Ophthalmologist actually measure her visual acuity.

Baby Ballerina

Charlotte has finally started ballet! She has been asking for ages but, logistically, we couldn't manage the schedule. She is so excited and has been wearing her ballet costume and shoes daily. She is the littlest one in the class so doesn't have the abilities of the others but she keeps up and tries to follow along. She loves older girls too so she is looking forward to Thursdays every week.

Party games

Charlotte had a great time at her sister's party this weekend. She took a while to warm up, but that is not surprising considering her recent disruptions with nursery visits. Once she did warm up, she ran around the room with the older kids, played pass the parcel and joined in a ballon catching game. It was really sweet - I love seeing the sisters look out for each other and enjoying each others company. She refused to wear her "brights" so she squinted the entire time. I have conditioned her into putting her glasses in a safe place every time we get home which means she won't wear any glasses indoors. I must talk her into wearing a different pair indoors.

Baby ride!

Charlotte is doing fantastically well this summer, she is having a good time in the garden every day, doesn't care if she is in the sun or the shade, wants to run races against her older sister, loves to go swimming, climbs to the top of the tallest slide and sends herself hurtling down. She is quite the thrill seeker and a bit of a daredevil but she really seems to know her limits and to test herself on them. She is not just doing crazy things because she doesn't understand the consequences, she genuinely appears to weigh up the risks and act with courage. She is also tenacious and insists that we don't help when she is pushing herself to master new things.

My favourite thing I've done with her this summer was when we hired bikes with child seats on the back. Emily didn't like the tipping feeling she had before we took off and took forever to settle down during the ride. She cried so much we should have turned back. Charlotte, on the other hand, loved it from the start (OK, she had a tantrum when we made her wear a helmet), she thought she was riding, grabbed her little handlebars, wouldn't let me touch them, and chatted the whole time. She kept saying, "Baby ride!" She can't say her own name and calls herself Baby, her other favourite was "Whee!" every time we coasted down a hill. I can't wait to take her horse riding!

Our "little holiday"

The girls and I went on a little holiday this weekend. I won a hotel stay through an event at work and I couldn't get a Saturday night so I took a Friday instead and M took the train to join us after work.

So I set off alone with the girls and drove almost across the country to our hotel. They were absolute angels and such a pleasure to be with. We picnicked in the grounds, then went for a swim, ran around the gardens some more and went out to dinner together before I put them to bed, all of us in the same room. Every night at home, I go in to their room to look at them before I go to bed. I smell their lovely smell and wish I could just roll out a mattress on their floor and spend the night there. That's what I got to do last night (but with a real bed!). Today, we had breakfast together, another swim and then packed up and drove home. A little holiday.

I need to work more on appreciating the here and now with them. Too often, I wish away the time or wish I was doing something else. They are the most precious things to me and yet I don't always feel grateful for the time with them. I must read more stories with them, laugh with them more, shout less and generally enjoy the present more. Not because I have to but because I want to. These thoughts have been on my mind a bit recently and someone at work told me about The Happiness Project this week. It sounds pretty good and I'll have to look into that some more. It's probably why SouleMama is so popular: whatever our lifestyle differences, her writing is all about appreciating the here and now. We saw a terrible accident on the motorway on the way home - they had landed a helicopter on the road to transport the casualties - I was (and still am) so affected by it. People's lives have just been changed forever. I am so happy with my lot, I just need to stop, remember that, and savour it.

Scared of the dark?

How ironic!

When we were away recently, we arrived in the town after dark. Both children were a little overwhelmed to be arriving in a strange town and told to get out of the car in a church square to walk down the street (I love small town Italy!). When we got to the house, we took them out into the garden so they could see the stars - poor little London dwellers, never get to see the stars - but they were having none of it and just wanted to be taken inside.

I thought Charlotte would love to be outside at night but it appears that familiarity and security are more important to the almost-twos than being able to fully explore. I can wait until she is older to start our night time explorations together.

Playing outside

We've been away recently and Charlotte was having a wonderful time playing in the garden. She spotted a ball across the lawn and ran after it, argued with her sister over who was going to play with it, won the battle and ran off with it. Earlier she was picking tiny flowers from the lawn and handing them to me - in full sunlight! It was wonderful, so encouraging. What parent of a blind child ever expects to be handed flowers like that? The red lenses from Noir were great, she wouldn't go outside without them and always asked for her hat too. She can now ask for and put on her own hat and sunglasses and a new word is "bight" (bright). She went swimming outdoors for the first time, she didn't want to get in but then she didn't want to get out and loved being tossed in the air and caught in the water! She ate gelato every day and pasta every night so all in all, it was a fab trip.

What was obvious is how she really can't see changes in the level of a surface. The garden wasn't completely flat and the slopes caught her totally off guard. She knew this and wouldn't venture outside without a hand (han') to hold. But she has proved herself sensible, adventurous and tough over and over again so she's doing just great!

Little rocker

Charlotte went to her first concert today. As I suspected, she rocked out!

Aside from the typical naughtiness expected from the under twos in public, she seemed to really enjoy herself. She danced along, looked at the lights, enjoyed the darkened surroundings and was generally an exemplary concert participant. I thought she would enjoy it because even in Starbucks, she bops in her seat to the music!

It was pretty clear she couldn't see the stage and was probably completely unaware that there were people on it but even Emily had difficulty grasping the concept of a live performance. Maybe binoculars would help her in the future, but, hey, who can see properly at a live performance?

Who did we see? The Wiggles!

Outdoor progress

What do you know? Charlotte really likes being outside! She takes our hands and leads us outside. And it's really, really bright out there right now. She is particularly fond of pacing up and down one particular corridor of decking, complete with step, which she loves to navigate.

She seems to be enjoying her Noir sunnies too. After losing two pairs of sunglasses in two days, she is having to get used to two new pairs at the same time. (By losing, I mean tossing out of the pram while I wasn't looking.) Very upsetting but as long as the 50 pound + Noirs don't go the same way, we'll be ok.

I'm delighted that she is enjoying being outdoors, with or without vision. Just a few days ago, we went outside and she had her first barefoot walk and she hated it! My little tenderfoot English children!

Surviving Great Ormond Street

We've been at Great Ormond Street Hospital today for a routine checkup for Charlotte. For various reasons, I've been dreading it for ages but, thankfully, it was nothing like as bad as I expected; and the news was even slightly more positive than I expected.

Firstly, it seems that the ERG test that Charlotte first had when she visited won't be repeated. This is the more painful one with the flashing strobe light and apparently it is used to diagnose other conditions that have now been ruled out for her. So the test that she now continues to have involves looking at a screen of moving black and white squares while they measure her brain activity. The most painful thing about that test is the pain all the adults in the room have: trying to get a toddler to wear electrodes, wires and a stretchy bandage to hold it all in place without pulling the whole thing off her head; and then getting said toddler to look at the damn screen long enough for them to get any meaningful readings. But we got there in the end!

The good news is that her rod function is still normal. Phew! AND... she might even have some faint cone activity. Whoo hoo! I'm not getting my hopes up but any cones are better than none at all. She might be an incomplete Achromat. Like everything else here, time will tell and life goes on regardless.

I wasn't that keen on the Dr who saw us, she is a fellow of our main Ophthalmologist (whom I really like) but in the NHS, you don't always get to see the consultant but one of their underlings. She didn't seem to handle our questions very well and it kind of felt like we knew more about Achromatopsia than she did. I think it was down to lack of communication rather than lack of knowledge but it might as well have been the same thing. At least we are not new to all this any more.

We'll be back at GOSH in a year or more. Fine with me, I'm in no rush to go there ever again. It is so heartbreaking seeing the children there. I've learned that the larger and more complicated the wheelchair, the harder I need to try to not look inside. :.(

Ball!

Charlotte saw something from across the room today!

Granted, the room in question is about two meters across but it still counts in my book!

She looked over at a small soccer ball and said "baw!" She was pretty excited to see it and I was pretty excited that she saw it!

I really do feel like her vision is improving every day.

A love of Audiobooks

One of the things I love about my new iPhone is how accessible it has made audiobooks. There are so many free titles that I think I will be listening for the rest of my life.

I would never have downloaded or purchased this kind of thing without a phone hence, my love of the phone.

I would hope to get the whole family involved in my listening pleasure. When we eventually get our first car (this summer), I hope we will listen to children's audiobooks during the school run. In the evenings, not caring much for TV (you never can tell when your favourite shows might feature children getting hurt), I now love to sit and listen, and knit, and hope that the children will join me in these peaceful evenings as they get older.

Not that we expect our children to mirror ourselves and our tastes, but I do take great delight in the fact that something that is so enjoyable to me is so completely accessible to Charlotte.