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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps!

http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Wednesday, April 22, 2020

Our Disney Cruise: So Much Bad and So Much Good

As usual, I'm behind on my blogging.  At least I'm consistent, right?  I've been wanting to post this for a while, and I think it's an important read for anyone with a disability who is planning to go on a Disney cruise.  

In October we went on a trip we have been saving years for; our very first Disney cruise.  My parents decided to come with us and the kids were ecstatic.  It's all they could talk about.  I showed them videos onboard to help them plan, and we started counting down the days.  I talked with someone at Disney at length prior to booking and thought I knew what to expect and what would be the best way for us to travel.  I explained our unique family situation, medical needs, and the girl's special needs in order to gain a good understanding of what our trip would look like.  We decided to leave from San Diego so that we could drive.  This also allowed us to coordinate this trip with our annual trip to California using our timeshare. We had also decided to go ahead and purchase their extra insurance so that we could be flighted off the ship if necessary.  It was quite a bit more, but having one with hard-to-control epilepsy, and another with very fragile bones, meant it was necessary "just in case".  I always say you should prepare for the worst and pray for the best, which is what we did.  

They had informed me in advance that the port activities wouldn't be accessible.  In fact there were NO accessible port activities.  Not one.  I was also told the tender boat itself would also not be the most accessible.  Because of that, we chose to do a 5 day, 4 night trip so that we could plan on staying on the boat without running out of activities to do.  


We let them know we would need an accessible room, and apparently that means you are very limited in what you can chose.  You basically have to pay for a higher-priced room with a balcony, as those are the only rooms large enough to be accessible.  Because of our family size, we actually needed two rooms.  The trip was starting to add up fast.  The good news is that they had two accessible rooms next door to each other, so we were able to stay close together.  That was very helpful since we did have to split up and have one adult and two children per room.  The rooms themselves were great.  There are wave phones for communication on board, the beds were comfortable, the bunk bed gets put away so you have more room during the day to move around, and the bathrooms were more than sufficiently sized and were also accessible.  We were very comfortable in our rooms.



I'm going to go ahead and create topics now so I can speak to each area.  Hopefully if you are planning on a cruise, this will help you with expectations. I hope this helps someone out there.
  • Food:  The food onboard the ship was excellent.  There were so many options.  There was a good mix of "fast" foods by the pool, and these were pretty good at accommodating food allergies.  If you have major issues with cross-contamination, these stops likely wouldn't work for you.  For our kids, though, they were fine.  The only issue here was that anything "special" you needed took a VERY long time.  There's nothing fast about it unless you can eat exactly as is.  There was also a buffet that was open much of the day.  There was a vast array of foods available, and you could also talk to a chef to request something diet-friendly that accommodated your allergies.  Again, expect to wait, sometimes quite a long time, to get what you need, but the food was really good and they had numerous options.  The main dining was amazing.  They knew your allergies before you arrived and the wait staff really went out of their way to accommodate your needs and make sure that you'd have dinner and dessert available.  I was very nervous about feeding myself because my diet is so extremely limited right now and even a different seasoning can set me in to hours of stomach pains.  Thankfully they were very good at figuring out what I could eat, and I was well fed the entire time.  The wait staff was also great at entertaining the kids and made our time there enjoyable.  The dinner shows were fun and engaging.  It was something all my kids looked forward to, as did the adults.

  • Pool:  I'm going to go ahead and get this one out of the way because it was probably the most disappointing part of our trip.  Before going on the cruise I got this letter in the mail.  You'll notice it discusses the availability of pool lifts, but does not get in to much more detail than that.

Once we boarded and got to our room, we were greeted with this notice.


The girls are not urinary continent, however, they have a timed bathroom regiment that keeps them clean with very minimal accidents.  As an extra precaution, I brought swim diapers to go under their bathing suits.  I, wrongly, thought this would be sufficient.  The kids asked non-stop about when they could swim, so we finally planned a time.  I got them ready and we went together to scope out the pools.  Because of the high walls and the such to allow for moving water, we decided to use the smaller pool for younger children.  This would allow the girls to get in and out easier, gave them a good amount of steps to use, and let them safely swim and float around.  We couldn't use the lift, but were able to safely get them to the pool.  They were having a blast, and loved every second.  It didn't take long, though, for Ramya's tankini to separate and for someone to spot her undergarments.  I was taken aside and asked about them. Now, before I explain the rest, please keep in mind they were swimming with YOUNG CHILDREN, many that were not yet potty trained.  There were some slightly older children as well, but most were young. Because accidents there were frequent and children were not allowed swim diapers, they frequently and routinely drain the entire pool to clean it and put in fresh water.  I explained it was a precautionary measure and that they would not have an accident.  I was told they could continue swimming.  Not even 5 minutes later, someone higher up came to talk to me.  During this time we also had to remove the girls as they were cleaning the pool.  After much back and forth and very little care about discrimination, I asked for the higher-up.  I was told while I waited the girls were allowed to use the splash pad... for children two and under.  Sigh.  They were having so much fun and didn't want to use the splash pad, they wanted to be in the pool.  I explained to them we needed to take a break and we carted them over to the splash pad.  Finally someone else came to speak to me.  There was a lot of discussion and basically I was told on International water there is different rules so they were allowed to not let them swim.  Fantastic.  They would, however, oddly enough let them swim without any undergarments, but I didn't want the girls to be embarrassed in the off chance something happened.  It would have been great to know that BEFORE we got there, so that I could have given the kids realistic expectations.  Of course within my extensive discussions with Disney prior to booking, and with the letter we were given prior, there was no mention of this "policy".  They finally agreed that they could swim for a bit, but at that point in time we'd been waiting and talking for quite some time and it was time to get out anyway.  It really upset them. Many disabilities and injuries come along with some extra bathroom "issues" that are just part of the package. This is pretty common knowledge. They knew about my girl's disabilities and did not bother to mention it to me, even when I asked about the pool.  They should disclose these rules before booking your cruise, period.  I hate having to go "momma bear" to get my girls accommodated, though I will any time necessary, and this ruined a lot of the day for me, and for them.  Don't forget, you are still expected to pay the same price as everyone else, even though you cannot participate in many different excursions and amenities on the ship.

(Right before we were questioned)





(The "splash pad", which also isn't wheelchair accessible I should add due to very  narrow doorways and tall thresholds in and out)


  • Kid's Club: I'm going to go ahead and get this one out of the way too.  This was another huge disappointment.  They had Kid's clubs based on age, from infant on up.  They have tons of activities (like costume parties, movie nights, games, etc...) and fun things they host in the Kid's clubs.  What they didn't tell us before we got there, though, was that children have to be able to take themselves to the bathroom in order to be dropped off.  Again, I was told about the kids club BEFORE I booked our trip, and that was never mentioned.  That works for one of my girls and Conner, but doesn't work for the other two. I would never expect someone else to take my child to the bathroom, nor would I let them.  I, however, would of course make sure they were always taken care of in that area.  Since they are on an efficient timed bathroom schedule, I was not worried, but again, those were the rules.  Conner loved his club and spent a ton of time there.  It gave him freedom to have some independence and we knew where he was at all times.  He made quite a few friends and loved the scavenger hunts and activities they offered.  They called to ask why I hadn't sent the girls (a little odd to me because they really, really, REALLY pushed you to put your kids in clubs, but that's a different story.  I think they really wanted the adults out spending money on alcohol 😉).  I told them it was because they were not fully independent in the bathroom.  They apologized but reiterated that was their rule.  Their solution was to go during an open house, when families could attend together.  We thought that seemed like a fun idea so we took them during the next open house.  What we didn't know, though, was that there were no guided activities during that time, so basically they had out ipads and video games, as well as a few coloring pages.  The girls were slightly entertained for a bit, but I didn't spend thousands of dollars for them to play on ipads.  I had expected them to have some fun activities for them.  Unfortunately they didn't.  The girls lost interest fast and we didn't go back.  Again, you don't get any sort of discount for not being able to attend, even though the vast majority of their planned activities are there.  You are just expected to miss out.
(We were the only family using the open time)


  • Shows:  The shows on board the ship were amazing.  They were very high quality, we were given good, accessible seats, and the girls especially loved every single one.  They also had a magician one night and all of my kids loved the show.  They had deck shows as well.  Those were very crowded and hard to maneuver in, but they did help us find good, safe spots where the girls could see and enjoy the show.  This was by far one of the highlights of our trip.  They loved the music, the dancing, the performances, and everything about them.  They were loud, so my noise-sensitive children did cover their ears often, but had I known to plan, some ear canceling headphones would have helped a ton.  They also had fireworks one night and that was really magical for the kids.  This was the biggest advantage of the Disney cruise for us.







  • Onboard Activities:  Again, much of what they offer on the ship is the pool and water slide, kids club with ongoing activities, and the off boat excursions.  We were unable to participate in any of that though paid the same as everyone else.  That was quite disappointing.  They did offer other activities, though, such as character meet-and-greets, crafts, and drawing courses during the day.  They also had ongoing movies in the theater, as well as pool-side movies and trivia.  We participated in many of these activities and the kids enjoyed themselves.  Though we had less to chose from, we made the best of it and the kids were able to find multiple things to keep them happy and busy.  They had a costume night and pirate night and those were a ton of fun.  Most people onboard participated and dressed up.  They had allergen-friendly candy in addition to regular candy they gave out.  It was a bit crowded and hard to maneuver, but we had extra hands with us so it worked out just fine.  It was really fun to see everyone's costumes.  The entire boat was also decorated for Halloween, so it was a really neat experience.






  • Adult Area: They had a nice adult-only pool, as well as a few bars and clubs meant only for adults.  There seemed to be many people utilizing them.  We didn't do most of it since we weren't able to put the children in care, however, my parents did watch the kiddos one evening so we could head out by ourselves.  We had a drink and played shuffleboard, then just walked around and talked.  It was a nice time together.  Luckily we are both pretty happy just to have a few minutes alone, and that was enough for us.

  • General Accessibility: Overall, the ship was accessible, though there were many inconveniences.  One issue was the carpeting.  It was very, very hard for the girls to wheel themselves on it (and trust me, they are very strong).  They can wheel themselves on most carpeting just fine, but this was a very sticky, unusually hard to wheel on carpet.  Luckily we had extra hands and it was fine, but an adult chair user may have a hard time wheeling independently over the carpeted areas.  Thankfully only the hallways to the rooms were carpeted.  There were elevators in the front, middle, and back of the boat.  Unfortunately no one wanted to use the stairs and it was always very crowded.  People often cut in front of us and took elevators we were waiting for.  The elevators were small so we had to split up.  Again, luckily we had my parents so we were able to do this.  We could fit two chairs in a few of the elevators, but often only one.  Sometimes we waited 20 minutes to get us all up or down a level.  It would be really nice if accessible rooms had special key that operated a different set of elevators.  I had to get pretty verbal and be ready to run when the door opened so we could get in.  That's not something I enjoy and it wasn't fun. We made it work, I just think there's room for improvement there.  Another issue was the doors.  Only certain doors were accessible.  Unfortunately many were also not functioning right, were being repaired, or were totally broken, meaning we'd get out one, not be able to get back in, and then have to walk quite a bit to find another accessible door.  When I informed them of this issue, they were very receptive and started testing doors, which I really appreciated.  The dining rooms were tight, but there was enough room to comfortably move around and they always helped us find good seating. 


Overall, the kids loved their experience on the trip and are already asking to go back.  The things that made it tricky for us didn't make it tricky for them, because as parents we just did what needed to be done and did our best to make it fun for them.  We were pretty tired by the end of it, but they were bummed it was time to go.  I wish I had their energy!  We were SO very thankful that we had no emergencies onboard the ship.  I will also say, though there were many issues onboard, the crew members were always very helpful and really went above-and-beyond to try and make sure the kids enjoyed their time there.  We even had a dining room issue one night that we just kind of brushed off and didn't mention.  When we got to our room, they had delivered treats for us all with a letter of apology.  It was very unexpected and very appreciated. 

I do honestly feel that Disney, as a corporation, does not much consider or value the disabled community.  They have so many opportunities to improve rides so that everyone can utilize them (some still can't be ridden if you use a wheelchair, like the Pinocchio ride at Disney World that only has steps for exiting in case of an emergency), and they don't even make their new rides accessible unless you can transfer.  Universal Studios has figured out how to do this, so Disney should be able to as well.  Their new Starwars rides require wheelchair transfers.  They can do better.  They have the money to do better.  They chose not to do better.  They have such a big opportunity for diversity in their movies and they chose to leave out an entire population group.  They can do better.  They chose not to do better.  Now, we've had many amazing vacations with Disney, and so many cast members have gone out of their way to make sure we were taken care of.  The employees of Disney are generally amazing.  It's the policies and the lack of care that's unacceptable.  

I'll close with some more pictures from our trip.  We really enjoyed our time together as a family and we made so many amazing memories.  At the end of the day, that's what counts.  We were so blessed and thankful to be able to take this trip and have this time together.  

















Friday, October 4, 2019

Our Amazing Time with the Harlem Globetrotters

Life has been so busy (as usual), and I am so behind on my posting.  We had such an amazing experience though, and I wanted to make sure to share.  

A few months back the girl’s dance studio, Dancing in the Streets, asked if they would like to be part of a dance in the Harlem Globetrotters halftime show.  I asked the girls and of course they very quickly said “yes”.  

After multiple practices the day arrived and we drove to Phoenix for the game.  The girls were beaming when they went out on the court.   It meant so much to them, they are still telling everyone they meet about it.  Their outfits were beautiful but paled in comparison to their smiles.  They were on cloud 9!

I vividly remember a conversation I had with Madi when she was younger and our other two girlies weren’t home yet.  She was dancing at our local community center and she was sad because she didn’t get to dance on stage.  She shared with me that her dream was to dance on stage. I called so many studios, but never found one that would work.  I tried again here in Tucson to no avail. Then we found Dancing in the Streets.  Thanks to their amazing work, all the girls have been able to fully participate in their shows and shine onstage.  We never thought to dream bigger, though.  It didn’t occur to us that there was something bigger for the girls than onstage.  It turns out that there was; the halftime show was their opportunity for their “bigger”.  Watching them out there brought tears to my eyes (and I never cry!).  Dreams do come true, and sometimes you find your dreams weren’t even big enough because God has something even better.  It was a day we will never forget!














Kicking off Spina Bifida Awareness Month

Today kicks off the first day of spina bifida awareness month.  When I was 22 weeks pregnant, Madi was diagnosed with spina bifida.  I had no clue what spina bifida was and I was so scared.  I felt like my world was crashing down.  I had no idea what it meant for her and the doctor made it sound like a death sentence (literally).  I remember pleading with God and telling him that I could deal with anything He threw our way, but to please let her make it through the rest of our pregnancy and in to my arms.  Not long after Madi was born I realized how much of the story the doctor left out.  Sure, there would be surgeries, therapies, appointments, wheelchairs, etc...., but more importantly there would be smiles, laughter, joy, determination,  and LIFE.  He forgot to tell me the “stuff” would all start to feel normal, and it would all be ok.  Fast forward a few more years and Madi’s diagnosis also brought us Ramya, because we had learned over the years that spina bifida and wheelchairs really aren’t scary.  Now we get the privilege of watching both girls grow, thrive, and live their lives abundantly. I hope by sharing our lives we have helped everyone see that we aren’t defined by our list of “cant’s” (and trust me, every person on this earth has a list in one form or another).  That list doesn’t rob us of our joy or keep us from living our lives to the fullest.  We don’t live life on the sidelines.  We are truly blessed beyond measure.  


Monday, August 5, 2019

The Trip of a Lifetime

In June we got some very exciting news.  We had applied through Dream Factory to have a wish granted for the girls, and they were chosen.  They asked us if we would like to go to Florida with Kurt Warner through his foundation, First Things First.  When I checked the calendar, the week they asked us to go happened to be the only week that month that had no extra appointments.  The only things scheduled were our regular therapies (OT, PT, speech, attachment, sensory, and reading), and those are easily movable.  The timing was a God thing for sure, because our calendar is never that empty!  I went through the itinerary with the girls, and they happily agreed.  The plan was to head to Florida, stay at Give Kids the World, and do all the big theme parks.  Some of the time we would be on our own, and some of the time we would be with Kurt Warner, his wife Brenda, and their children and grandchildren.  My parents also joined us for the fun.  

On Saturday, July 6th, we were off!  Our first flight from Tucson to Phoenix got delayed, and then our plane was delayed again in the air.  We arrived in Phoenix and had to run a few corridors to our connecting flight to Florida.  We were the last to load, arriving just as they were calling our name for the last time on the intercom, but we made it!  The rest of the flight went smoothly and the kids enjoyed their time in the plane.  It was late by the time we made it in to Florida, but they had had two people from Give Kids the World there waiting for us to help us with our luggage and to our car.  They had rented an accessible van for us so that we could travel safely around Florida as a family.  It was amazing and I sure miss that van!  We are in the process of trying to apply for a grant to help us get a new van, but that's a whole different (long) story.  On Sunday, the fun started.  We got to spend the entire week there and didn't leave for home until the following Sunday.  Luckily our return flight home went much smoother and there was no running involved.  We even had time to grab food and use the airport restrooms, which was a big bonus.  

We had such a busy trip, but we got to do everything the kids have ever wanted.   Princess makeovers, dolphin interactions, character meals, Harry Potter Land, rides galore, fireworks, getting stuck on a water ride and needing to get carried off by the fire department (ok, ok, that one wasn't on our wish list.  It just ended up being an added bonus I guess)...  You name it, we did it!  The entire time we were so well taken care of.  There were always extra hands to push wheelchairs.  Meals were made to our dietary needs at GKTW so that we could dine there without worrying.  We were provided with an oxygen tank in case Madi had a seizure and needed it.  First Things First even brought us sunscreen, backpacks, lip gloss, raincoats (there was a lot of rain this trip!) and so much more to make sure our needs were met.  The kids were spoiled and were given souvenirs galore.  In fact, they were given so many, it took an extra suitcase just to get us home!  When I say all our needs were met, I mean ALL. They even brought us that suitcase, knowing we would need it to get home.  We felt so blessed and humbled to be part of it all. The memories we made this trip will truly last a lifetime.  

Here are some of our favorite photos from our time there.  As you can see, we had an insane amount of fun!





Give Kids the World Village was an amazing place to stay.  Each family gets a little house with bedrooms, multiple accessible bathrooms, a kitchen, and a washer and dryer.  There were characters dining with us at meals, rides on site, a salon, a movie theater, and a really neat pool.  The kids could even eat ice cream for breakfast.  Talk about spoiled!  













The girls got to add a star to Star Tower at the village.  The celling is covered with stars, each one representing a wish child that has stayed at the village.  Each child who stays at GKTW is on their dream trip through a dream granting organization.  They have so many stars, they've had to build a new tower.  It's hard to put in to words how it felt standing in the middle of all of those stars.  To know that each of those families understands, to a degree, what your journey looks like was an overwhelming feeling.  To know that each star represents a child who faces life-altering disabilities or illnesses took my breath away.  So many unique stories and families, brought together in such an impactful and significant way.  It was breathtaking, to say the least.





Princess Makeovers







Feeding Gators at Gatorland





Universal Studios  (This was Conner's dream, but we felt like it was important to make sure he was included in picking the fun.  He is such an amazing, helpful, and tender-hearted brother.  We thought he deserved to get his wish too)








Disney's Animal Kingdom









SeaWorld








Disney Magic Kingdom (Two Days Worth!)




























It was truly a magical time.