Life with MS & EDS

August 27, 2009

Another Sesame Place Day

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The Variety Club is sponsoring another day at Sesame Place for kids with special needs.  It will be held on Sunday, November 1st for The Count’s Halloween Extravaganza!  We’ve never been to this before and until today I had no idea that the Variety Club hosted this.  We usually steer clear of things like this because Little Sister is likely to be scared and overwhelmed, but knowing that the event is tailored for special needs kids makes me think there’s a chance of this working.  So, we just signed up. Hopefully this will go better than Disney!

If you or anyone you know has a special needs kid and are in the Philly area, check it out!  Sesame Place and Variety Club throw awesome events!  We take part in the Sesame Place Challenge each spring and are always so impressed.  It’s also great to be in the park where you know others around you are dealing with similar things and won’t give you strange looks like you may get elsewhere.

Registering is always kind of neat, too.  It’s the only thing I do where Ehlers-Danlos Syndrome is actually listed as a choice instead of using the “other” or write-in options!

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August 26, 2009

Not Lyme!

Filed under: Uncategorized — by mseds @ 5:45 pm
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On Sunday Little Sister complained that her thigh itched.  She scratched it a lot, so I wasn’t surprised it was red when I looked at it.  Same thing happened on Monday.  Last night, however, she was watching bed-time video and I got a good look at it.  It was a huge red bull’s eye on her inner left thigh.  I of course promptly Googled “red bull’s eye rash” and the hits were all about Lyme.  Lovely.

I called her primary doctor and explained what I saw.  A nurse called me back within 5 minutes and said to bring her in first thing this morning.  Little Sister has seen so many doctors for so many things that I always feel terrible dragging her to yet another appointment!  She was momentarily excited that Mommy was taking her to school today for a change, until I told her we had to stop by the doctor’s office first.  The she was quite upset!  I did was any good mom would do – bribed her.  I said we’d get a treat afterward for on the way to school.

The appointment went well.  Of course when we were there the rash looked far better than it did last night.  It wasn’t as red, wasn’t a bull’s eye (knew I should have taken a picture so they didn’t think I was nuts!), and was generally not too bad.  The doctor did think that there was a skin infection though.  It’s red, warm to the touch, and not as symmetrical as a Lyme rash.  He prescribed an antibiotic to take for 7 days and told me to keep an eye on it.  Hopefully this will improve quickly and not turn into anything worse!

August 19, 2009

Dr. Generalist vs. Dr. Specialist

Filed under: Uncategorized — by mseds @ 12:48 pm
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Last week I had my check-up with Dr. Generalist.  I’ve not been there since I first started Copaxone about 6 months ago.  When I last saw him, he suggested that I confer with a specialist at a major hospital around here since she’d have more detailed MS-specific knowledge.  If you’ve read other posts, you’ll know that I saw her quite a lot this past spring.

So, the first thing he asked was how things were going.  I proceeded to tell him that things were going okay and that I’d gone through a round of steroid treatment back in April.  He was surprised to hear this.  I explained that Dr. Specialist thought this was the best way to go given the number of lesions that showed up on the spine MRI she ordered and given that I was having an increase in symptoms.

He was taken quite off guard.  I definitely offended him, but certainly did not intend to!  It didn’t occur to me that I probably should have gotten in touch with him during my visits to Dr. Specialist to consult with him before making decisions.  I was suddenly in the position of being stuck between two doctors.

He suggested that I either stick with him as the primary neurologist, which is what Dr. Specialist recommended, or switch to her as my neurologist.  He said that people usually have a general doctor that they see more regularly and check-in annually with the specialist to see what new research is out there, etc.  Rarely, he said, do people do it the other way around where they see the specialist more frequently because then visits with him become what this visit had turned into – a report of what the other doctor is doing.  This was rather awkward to say the least.

He offered his opinion that he probably would not have given me the steroid treatment based on the symptoms I had at the time (fatigue and tingling in my left arm and upper lip as well as optic neuritis that has been around for a while), despite the many lesions found on the MRI.  He did explain that the MRI was noteworthy because of the spread of the lesions and that their location and size didn’t matter.  I then asked the stupid question of why the lower spine was not examined, which is when I learned that the spinal cord doesn’t go down that far.  (Whoops, perhaps I should have already known that.)   Dr. Generalist said that he reserves steroid treatment for when symptoms impair ability.  He also said there are other things that could be used to deal with fatigue, such as Provigil.  I’m not ready to go onto medication for the fatigue since I’m pretty functional, but it’s nice to know it’s an option down the road.

I also mentioned that Dr. Specialist mentioned the possibility of switching to Rebif if we didn’t like the results of the next MRI.  Dr. Generalist didn’t like the sound of that idea.  He said that there’s no reason to think that the interferons (Rebif, Avonex, and Betaseron) were any better or more effective than Copaxone.  He also said that 6 months was too short to know if something was or was not working.  He said 2 years is a much more appropriate length of time.

I have a follow up scheduled with Dr. Specialist for another round of MRIs in October.  Dr. Generalist said there are two schools of thought with MRIs – one that thinks they are needed regularly to determine treatment and another that says to treat the symptoms, not what things look like on film.  He’s definitely more conservative than Dr. Specialist.  Personally, I like to know what things look like and what’s going on inside of me.  Yes, it freaks me out that my spine is covered in lesions that may someday lead to many more symptoms, but for now things are generally calm and that’s comforting.

Here I am, stuck in the middle.  I clearly have a decision to make.  I appreciate the advice and direction both doctors have given.  I feel that I’ve bonded more with Dr. Specialist and I like her “bedside manner.”  I’ve had the misfortune of knowing a lot of neurologists between myself and Little Sister.  They are brain doctors and quite brilliant people, but many of them aren’t wonderful with people.  It’s hard to find a personable brain doctor.  I feel torn and am not really sure which to pick.  They both have their advantages and disadvantages.  Thankfully I have fantastic health coverage (they both cost the same and I don’t need referrals for either), so this doesn’t factor into the decisions.  I’d have easier access to Dr. Generalist, but I think that if there was really an emergency, Dr. Specialist would fit me in as she did last spring.  I think that if I stuck with Dr. Generalist, I’d always wonder what the specialist would think, but am not sure I’d question things in the other direction.  I’m generally skeptical enough to question Dr. Specialist if I think she’s being aggressive and have my husband (definitely a skeptic, although he’d probably argue that) to ask the questions I’ve not thought of.  I think I’m leaning towards Dr. Specialist, but I guess I’ll run this past her in October and then decide if I’m going to cancel the 6-month follow-up with Dr. Generalist and part ways.

August 18, 2009

Disney with Special Needs Kids, Part III

We divided up Epcot into two days.  The first one focused on all of the rides in the “Future” area and the second was primarily aimed at doing the “Worlds” side.

Day Five: Epcot

Waiting to get into the park was a challenge because she hated the music that was playing.  She was quite upset and demanded to go home.

Test Track – Yes, I took her on Test Track.  Correction, we all went on Test Track and she sat with my husband in the car behind me.  We said it would be like Mommy or Daddy driving really crazy.  She hated the dark part, but seemed to like the race track part outside where it was bright and sunny!  She refused to go on it again the next day when we came back, so I imagine she didn’t like it all that much.  3 stars.

Journey into the Imagination with Figment – She refused to go on the ride even though she loves the Figment character.  She did love the play area outside of the ride.  That was great!  Play area – 4 stars!

That’s all she was willing to do at Epcot.  She spent the rest of her time at the “car wash” and playing in the sidewalk fountains.  Apparently being in soaking wet clothing is a good thing!

Day Six: Epcot

She did okay at Epcot on the Worlds side.  Endurance was more of a problem here since there’s a lot of walking.  We did use a stroller to get around, but she got tired from the little bit of walking she did do.  She was pretty good during the excellent lunch we had at Great Brittan’s Rose & Crown Pub.  Then we got to find Mary Poppins at the toy store there.  She happily greeted her as Mary Poppins is one of her favorite movies (just like her mom!)  Usually Mary Poppins is outside, but it was pouring rain (quite fitting for England), so she was inside in a well lit part of the toy store.  We also did some shopping there.  They have a ton of the Little Miss and Little Mr. books.  Little Sister LOVES Little Miss Naughty (I hope it’s because she’s all purple and not because she’s naughty), so we got her a Little Miss Naughty doll, which she loves.  We tried to wait out the rain, but it wouldn’t stop.  We put on our ponchos, which thrilled her, and headed off to other destinations.

She generally waited outside while we looked around the shops in the other countries.  We got her into Mexico for a little bit.  It’s dark in there, but there are tons of beautiful, brightly colored objects there to look around at.  She also enjoyed banging on the drums there.  But, she demanded to leave after about 5 minutes.

She was thrilled about having afternoon snack at Norway’s bakery.  I got her a giant chocolate chip cookie.  It had a picture of a Viking on it on a circle of white chocolate.  I turned it over so she wouldn’t see it.  Thankfully she had already started eating it before noticing it and I explained what it was and to ignore it.  She didn’t seem bothered by it and inhaled the whole thing!

Day Seven: Sea World

Dolphin Show – She did kind of okay during the dolphin show.  She likes dolphins because the name of her previous preschool classroom was “dolphins.”  She got upset when the tone of the music changed when the mean guys came out as part of the bird portion of the show.  4 stars

Shamu – She was quite upset during this show, even though it’s an outdoor stadium in bright sunlight.  We sat in the top row of the stadium where it was a little cooler and far out of the “splash zone.”  This didn’t help her any because she spent the entire show complaining about being up high.  She kept asking to leave.  She held her ears and threw a fit most of the performance.  She spent the majority of time standing on her seat looking out the back of the stadium.  0 stars.

Penguin Exhibit – I thought she’d like seeing the penguins.  She enjoyed them when we went to Montreal two years ago and she still remembers the trip.  We got part way into the exhibit when she started to complain about the darkness.  I focused on how cute the penguins were and picked her up for a bit.  She stood on the moving sidewalks, thank goodness because although she’s barely 40 pounds, she’s hard to carry when throwing a fit. I got her over to the puffin area where she really got upset about the smell (it wasn’t pleasant).    I had to pick her up and carry her out as fast as I could, which is difficult to do when a lot of people are between you and the exit.  1 star.

Cirque du Soleil-type show – Everyone except my two girls really wanted to see this, which I found strange because we saw the real Cirque du Soleil when it was in town last year and they both liked it (goes to show how dramatically worse her sensory issues have gotten during the past year.)  Thankfully my husband’s cousins met up with us for the day and they happily took my girls over to the kids’ area so that we could see the show.

Shamu’s Happy Harbor – she had a blast here!  Yet another chance to get soaking wet while fully clothed! I think this was the most fun she had all week.  5+ stars!

Shark exhibit – I tried this with her, but it was another disaster.  Soon after we got inside I had to swoop her up and race for the exit.  She enjoyed looking at the rays in the outside tank though!  Inside – 0 stars; outside – 3 stars.

(Side note from me regarding MS and Disney/Orlando: Seaworld was far more difficult for me than the other days.  I’m not sure if it’s because it was our last destination and that I was tired or if it was because of the heat.  Seaworld definitely does not have the amount of shade that Disney locations have.  There are stretches of walkway that are in the blazing hot sun.  I was wiped out.)

Disney Trip in General:

We’re still having no luck with potty training.  It’s going very poorly.  She used the potty about 10% of the time during vacation, which is actually an improvement.  She would only use the potty when we were out and about, not at the rental house.  It was kind of like being at home.  She won’t use it here, but wants to check out bathrooms in other places.

Although we had her DAFOs on, she fell a lot.  I was concerned that she’d be covered in black and blue marks when we got her back to school, but it wasn’t too bad.  She fell at the Honey I Shrunk the Kids playground and on the wet floor in the Sea World café.  She also fell off her bed (while awake and just playing) at least 3 times.

I think her favorite part of the trip, aside from Dumbo and It’s a Small World, was the pool at the rental house.  The house had swimmies which made her feel safe and people took turns holding her.  She got cold easily, so she went back and forth between the pool and the hot tub.  While I love being in the water, this part was hard for me.  The pool was too cold, so I generally stayed in the hot tub, which eventually got too hot and aggravated my MS symptoms.  She and I both have a hard time regulating body temperatures.

She generally didn’t eat well the entire vacation.  The exception was a large chocolate chip cookie we got at the bakery in Epcot’s Norway, which she devoured! She was also quite quiet the whole trip. She finally started talking a lot the last day when she knew we were coming home!

Surprisingly she did really well with flying!  On the way there she had an aisle seat and was really excited to have the window for the way home.  Unlike Big Sister who demanded the window seat on the way there, but rarely ever looked out the window, Little Sister seemed to be fascinated and looked out often.  Unfortunately, she also flooded her pull-up on the flight back and had a noticeably soaked bottom when she stood up.  We made her carry her backpack to try to cover her backside, which is when she started to throw a fit.  By the time we got to baggage claim, she had the hugest tantrum I’d ever seen.  She was spitting, hitting, screaming, crying – you name it, she was doing it.  This lead to her being grounded for the first time.  We took away all screen time (e.g., TV, computer) for the rest of the day and until noon the following day, on the condition that she had to keep her pull-up dry all morning and start using the potty.  (Potty training is still a disaster, but that’s something for a different post.)

August 11, 2009

Disney with Special Needs Kids, Part II

Our daily plan was to arrive at the park at least 30 minutes early so that we could get through the most popular rides before the park became crowded.  Touring Disney in early August was a gamble, but by arriving early each day we made out very well.  Our first two days we had “Birthday Fastpasses” for 6 of the people in our family because we were fortunate enough to be there during my brother-in-law’s birthday and his son’s.  They got on far more rides without waits than they ever expected to.  My husband estimates that they saved over an hour and a half of waiting in line.  The rest of our trip we had to use regular Fastpasses and wait in line more, which the older kids were not used to.  It didn’t matter for Little Sister because she wasn’t doing any of these rides anyway.

Day Three: Animal Kingdom a.m., Downtown Disney p.m.

There’s not a lot of stuff for a sensory-challenged kid to do in Animal Kingdom….

Opening – Each park does its own special opening routine.  Animal Kingdom’s was cute (it had Mickey, Minnie, and other standard characters), but the music was overwhelming, so this brought on tears from Little Sister.

Kilimanjaro Safaris – We headed here first and got on almost right away.  It was one of the only rides the whole family did together.  Everyone loved this ride.  We saw so many animals!  It was great! 5 stars!

TriceraTop Spin – This is Dumbo, but with dinos instead of elephants.  She loved this, but there was no shade and It was really hot! 4 stars

Boneyard – This was a HUGE hit!!!  We had to ask for directions to find it, but as part of this section in Dinoland there’s a big sandbox where kids can uncover a huge fossil.  She had no interest in uncovering the fossil, but had an awesome time playing with the sand.  We had the whole place to ourselves for the first 30 min. we were there.  The cast member there was fantastic.  Little Sister was hesitant to get started in the sand, but the cast member went in the sandbox with us and started making castles and pizza with us.  I had a great time talking with her.  We spent well over an hour here. 5 stars!

Festival of the Lion King – Little Sister flat out refused to go to see this.  Screaming and crying began at the mention of the idea.  I really wanted to see this, so my husband took her to see characters nearby instead, which she loved.  After seeing Lion King, I know she would have hated it, so I’m glad she didn’t join me.

Character Greeting Area – 4 stars.

We didn’t have a stroller this day and she was very exhausted by mid-morning.  By the time we were ready to head out of the park, we ended up taking breaks at almost every set of benches on the way out.

Rainforest Café in Downtown Disney – After resting at the house that afternoon, we headed off to Downtown Disney to shop and have dinner.  We all had a great time shopping, but Rainforest Café was the biggest disaster yet!  I had a feeling it was going to be a challenge, but knew the older kids would love it so we took the risk.  Little Sister spent the entire time SCREAMING as loud as she could and crying.  She was a total mess.  Sadly, my husband and I just had to laugh.  What else could we do?  I was either going to be in tears with her or laugh.  I chose to laugh.  We even captured the meltdown on video.  Not sure I’m going to post it anywhere, but I’m pondering it.  My husband eventually took her out of the restaurant.  She refused to eat anything while we were there, so we took her dinner with her and she ate it around 8 p.m. when we got home.  I highly recommend never taking a sensory challenged kid to Rainforest Café!  Zero stars!!!

Day Four: Magic Kingdom

The second trip to Magic Kingdom went much better than our first.  By this time Little Sister knew what to expect and I was better able to predict her reactions.  We immediately split off from the rest of the family and headed to just the things she wanted to do.

Cinderella’s Carousel – She loved this!  She wasn’t as excited about this as she was about Dumbo, but she really enjoyed it.  I helped her onto the horse and then she didn’t want any other help.  She made me step away.  Her balance has improved a lot, as has her confidence. This gets 4 stars.

Dumbo – She cried at the start of this because the purple Dumbos were already taken and we had to ride in a red one.  This was upsetting, but she did calm down pretty quickly.

Tinker Bell’s store – We had to go back to get more pixies dust, of course!  This time we got even more dust and it’s still not out of her hair!  Mine finally washed out after a few shampooing.  She asked the cast member for the bell this time and was so excited to see Tinker Bell again!

Toontown – We met up with the family in Toontown, which wasn’t supposed to open until 10 a.m., but we got there closer to 9:45 and it was already open.  It was pretty empty.  I tried to get Little Sister to meet Tinker Bell (her second favorite after Cinderella), but she wanted no parts of it after seeing the location.  There’s a Hall of Fame where there are 2 lines to meet characters: one for the Princesses and one for the Fairies.  The entry is a well-lit store that is very inviting.  Then the trouble began.  The hallways back to the characters are dimly-lit, so the screaming and crying began and would not stop.  So, we left.  We went over to Minnie’s house.  We had the place almost to ourselves and she LOVED it there!  She had so much fun playing with everything in there, especially in the kitchen.  She couldn’t wait to give her sister and cousins a tour of the place when they arrived!

My husband took Little Sister to look around the store and other parts of Toontown while I waited in line with the other 3 kids to get the Princesses’ autographs.  At least they didn’t mind the atmosphere.  Of course the area where the characters are is bright and inviting!  I wish I could have slipped Little Sister in through the exit!  I even mentioned to a cast member in the store that she was afraid of the waiting area (this was when she was still crying), but they didn’t offer us another way in.  I read about a special pass they will give to people with special needs, like children with Autism, but since she’s not autistic and doesn’t have any visible disabilities (unless you look at her DAFOs), I didn’t think we could have gotten one of those cards. Also, I never in a million years expected her to have this many problems, so I didn’t think it was worth the hassle to try to get one.  Now I know better!  I think having that card may have helped.

Anyway, I had a great time seeing the Princesses with the other kids.  When we were done, all of the kids, even Little Sister, rode on the Barnstormer at Goofy’s Wiseacres Farm, a perfect first rollercoaster.  It was Big Sister’s first rollercoaster when she was 2 and she loved it, so we took our chances with Little Sister.  Turns out Little Sister liked the rollercoaster and asked to go right back on it.  This time I joined her!  I’ve not been on a rollercoaster since I was 21 (quite a while ago!)  It was fun!  I’m glad she did something adventurous.

Toontown Town Hall – 0 stars

Minnie’s House – 5 stars!

Barnstormer at Goofy’s Wiseacres Farm – 4 stars

It’s a Small World – On the way to It’s a Small World we finally got to see the White Rabbit.  We spotted him just before the downpour during our first stop here, but he had to run when the rain picked up.  We walked up and the cast member had just closed the line.  I explained that we had already seen Alice and just missed the White Rabbit when the rain started and thankfully she let us be the last in line.  Then we ran off to It’s a Small World and she enjoyed the ride again.

Dream Along with Mickey – This is the show that is staged in front of Cinderella’s Castle that runs throughout the day.  We missed the first few minutes, but we got to watch the princesses and princes dance, which she loved.  Then things took a turn for the dark when Captain Hook came out and then Maleficent from Sleeping Beauty.  At that point she demanded we leave, so off we went.  Only 2 stars!

Tom Sawyer Island – Next we met up with the family again and headed over to Tom Sawyer’s Island.  By now it was getting hot and everyone was tired, but we thought the kids would have fun.  I was getting tired and it was way past lunch time, but I plugged along.  The kids had fun exploring the island and Little Sister did fairly well.  Her endurance was beginning to wane at this point, so we cut the touring short and departed for home.

The Railroad – We took the railroad back to the front of the park.  Little Sister thought riding the railroad was really cool!  She loved the train ride.  4 stars!

Oh, I forgot to mention in the previous post that she went on the Tomorrowland Indie Speedway.  She road with her aunt, who operated the “gas” peddle, but Little Sister “drove” the car and had a great time!  She was annoyed by the loud noises, but it was bright and sunny, so I guess she was willing to overlook the noise level to have the opportunity to do something “grown-up,” like driving a car. (I had a car to myself, which wasn’t easy.  I had to drive left footed and that was surprisingly really difficult for me!)  4 stars!

I was starting to get tired, but was still hanging in there!  The afternoon breaks really helped.

August 10, 2009

Disney with Special Needs Kids, Part I

For the past year we’ve been planning a family vacation to Disney.  My mom-in-law turned 60 this past March, but didn’t want a party.  Instead she wanted to do a trip where she could spend time with her kids and grandkids.  Given the kids are 5, 7, 8 and 8, where better to go than the “happiest place on Earth”?  Since she’s a teacher, we had to wait until this summer for the big trip.  We finally got to celebrate this past week.

We rented a house near Orlando that could fit us all.  It was much better than having several hotel rooms.  It gave us adults a place to hang out once the kids were finally asleep and we had our own pool and hot tub to enjoy.  It was great to hang out with my husband’s brother and his family.  We don’t get to see them enough since they live clear across the country.

The girls were both great on the flight down.  They were both a bit nervous.  This was Big Sister’s 5th plane trip, although she only remembers one of them and she got sick just after that flight.  This was a 1st for Little Sister.  She actually did really well on the plane.  I was surprised.

I expected that her gross motor delay would cause some challenges while touring Disney, but we avoided the stroller on the first day just to see how she’d do.   I figured I could always rent one midday if needed.  She wore her DAFOs everywhere we went.  She got tired, but we made it through the day without a stroller.  She got pretty tired though, so we used a stroller with the exception of one other day when there was not a lot of walking.

Turns out that our biggest challenge was her sensory issues.  I was not at all prepared for that.  I had a feeling that Disney would be difficult for kids with sensory challenges, but it wasn’t until we were there that I realized just how bad Little Sister’s sensory issues were.  She had almost constant meltdowns and tantrums.   There was more screaming and crying than should be allowed in the “happiest place on Earth.”  Here’s a blow-by-blow account of how she handled (or didn’t handle!) things in Disney.  I hope it gives other parents of kids with developmental delays some idea of what we experienced.  I certainly wish we had noise canceling headphones with us, but beyond that I have no suggestions on how to handle any of this.  I wrote a long letter to her occupational therapist and hope to get some suggestions and assistance once their summer break is over.

Day One: Magic Kingdom

Monorail – a huge hit!  5 stars!

Dumbo – this is the ride she was really looking forward to.  There’s a knock-off version that she rides at the boardwalk amusement park we go to frequently, so she was really used to the idea of flying elephants.  This was by far her favorite ride!  5+ stars!

Tea Party (spinning tea cups) – She had some reservations about this one, but there was nothing dark and no loud noises, so she gave it a try.  This is my favorite ride, so my excitement helped win her over.  This was a 3 star ride for her.

Many Adventures of Winnie-the-Pooh – How scary can a honey-loving bear be?  Pretty terrifying if you are a 5 year old with sensory issues!  She HATED this.  It was too dark.  The doors separating the various parts of the ride freaked her out because she couldn’t see what was coming next.  Oh, and you feel bursts of wind (something she can’t stand on a normal, mild breezy day anyway.)  No stars!

Mickey’s PhilharMagic – Okay, I guess we pressed our luck with this one.  She cried even before it started and begged to go home.  She wouldn’t even try on the 3-D glasses.  She smiled once when she saw Ariel, but the rest was a nightmare. 1 star, only because we got one smile out of her.

Tinker Bell’s store (by the castle) – A HUGE HIT!!!  She got sprinkled with fairy dust (as did I) and got to ring a bell to have Tinker Bell appear in the store.  She thought that was awesome.  (NOTE: Pixie dust was still in her hair several days later, despite baths and time in the pool.) 5 stars!

Cinderella’s Royal Table – Near disaster!!!  A special lunch with Cinderella, her favorite, was a belated birthday present.  We’ve planned this for months.  Getting into it was like trying to get highly sought-after concert tickets.  We’ve talked about this constantly.  It was her special time with me, Grandma, and her aunt.  The other kids were off doing rides she didn’t care about with the dads.  So, we arrive early to put on the Cinderella costume I brought with us.  We enter the castle to use the bathroom and she starts to FREAK!  She screamed, cried, and refused to go into the bathroom to get her pull-up changed and certainly wasn’t putting on her costume!  She demanded to leave. She cried and screamed for 45 minutes while everyone around us was enjoying themselves.  I even took her outside to see that it was the Cinderella castle, the one we see in books and on TV.  That didn’t help.  It was not bright, but I didn’t think it was scary in any way.  Here’s a photo from the area we were in:

Apparently the "scariest place on Earth"

Apparently the "scariest place on Earth"

They called our seating time and it was time to meet Cinderella before heading upstairs for lunch.  She still wouldn’t calm down.  I carried her into line anyway, with her autograph pillowcase in hand (we did that instead of books so the kids would have something neat for their rooms after the vacation.)  The “cast members” were really nice and understanding.  I got Cinderella’s autograph, but Little Sister wanted nothing to do with her.  They told us we could try again after lunch and that we wouldn’t have to wait in line again.  So, I gave Little Sister the choice of the stairs or the elevator and she picked the elevator and off we went.  Thankfully it was brighter upstairs.  She finally stopped screaming and making demands, but was still sobbing.  We ordered food and got something to drink and soon the princesses were entering the room.  Snow White was the first to arrive at our table.  Little Sister got in a picture with her without crying and got her autograph.  Sleeping Beauty, Belle, and Jasmine followed and she smiled in pictures with each of them.  She was happy to see them.  She didn’t eat much of anything, but at least she calmed down enough for the rest of us to enjoy a delicious meal!  When it was time to leave we tried pictures again, but she still wanted nothing to do with Cinderella on the first floor of that castle.  We did get a picture (it was part of the package, so it was already paid for).  She got close to her, but wouldn’t hug her.  This is her favorite princess by far, so this made me pretty sad.

Small World – We caught up with the rest of our family and it was starting to rain.  We had to wait about 30 min. for them to print the pictures, so we all went over to It’s a Small World.  Thankfully there was a brightly lit and since the rain clouds were rolling in, the sun wasn’t as bright so the contrast between being outside and stepping into a ride area wasn’t as great.  She loved this ride!  It got 5 stars!

I think the best part of her day was getting caught in a torrential downpour after picking up the pictures.  We didn’t have ponchos (but we certainly bought them that evening!), so we got soaked to the bone getting to the car.  She LOVED getting drenched in her clothing and thought it was the best thing ever!  Me, I hate getting wet (we joke that “Mommy melts” in the rain,) so that part was not fun for me.  I’m glad she enjoyed something.

Day Two: Disney Studios (a.m.) and Epcot for the nighttime show

I must say that there is almost NOTHING in Disney Studios for kids with sensory issues here.  This park was one disaster after the next.

Voyage of the Little Mermaid – STEER CLEAR OF THIS ONE!!!  This was a horrible experience.  She screamed and cried from the moment we entered the theater.  It was dark, there were two times when there was a lot of wind, water squirted, Ursula was much scarier than expected….  It was just terrible!  No stars!

Playhouse Disney Live – She was hesitant about seeing another show after the last couple of experiences, but we convinced her to try.  She loved it.  It was the only good thing here.  She even got up and danced!  She was so happy! She doesn’t even watch Playhouse Disney at home anymore since she decided she was too old for it, but she really liked this show.  5+ stars!

Honey I Shrunk the Kids Movie Set – We gave up on trying anything else and went straight for this playground.  She had a blast!  We were able to find plenty that she could do.  She was pretty proud of what she was able to do and that she was able to keep up with her sister and cousins for the most part.  They loved getting soaked with the super soaker!  We discovered that she’s pretty darn happy when she’s wet (as long as it’s not in the bathtub!)

Muppets 3-D – Okay, she wouldn’t come with me to this one, but I had a good time there!  She probably would have hated Animal anyway.

Each afternoon we headed back to the house we rented for a break.  We’d swim, nap, or take showers/baths.  Having a quiet place to retreat too was awesome.  Today was a nap day!

Epcot for Illuminations – This was by far the coolest evening show I’ve ever seen, but it was not without screaming and crying from Little Sister.  Leading up to the show they play music from a variety of cultures.  She freaked out when they played Asian music.  She screamed, cried, held her ears, and tried to hide in the stroller!  Thankfully she did okay during the show and thought it was pretty cool, except when the music got “annoying.”  She had just seen fireworks last month, so she knew what to expect from the sound of fireworks which I think helped with the experience.  3 stars.

I wish I had brought noise-canceling headphones with me.  I’m not sure if she would have worn them, but it seems like it would have helped ease her reaction to sounds, music, and other noise.

This brings us through Day 2.  I was still holding up just fine, despite the heat.  I was pretty proud of myself.  I’ll write more about our experiences soon.

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