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Is a Disney Cruise Right for Your Special Needs Family?

April 15, 2012 By 1 Comment

Before I left for the media preview Fantasy Cruise last month, I did some price comparison. While my husband, oldest and I have all cruised multiple times, I have yet to take our youngest. And I feel really badly about that. But to be honest with both the wheelchair and autism hurdles to overcome with him, I just have never been quite sure how he would do. Since he is such a Disney fan I always thought that his first cruise would probably work best on a Disney ship. Every time I went to book one though two things stopped me: the price and the fact that they always seemed sold out of the itineraries we wanted.

Disney cruises aren’t cheap. Comparing the cost between two fictitious similar itineraries to Mexico, Princess Cruises were close to $3000 less than the Disney counterpart & 3 days longer. 
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Which is the point where I would take my hand off the ‘book’ button and walk away, dazed and confused to exactly why I thought that sailing on a Disney ship was going to be so much better.

I’ll be honest. I posed this question to several friends that had cruised Disney before. They all assured me that once I was on board I would see why they are almost always booked and why people were willing to pay so much more.

Fast forward to my cruise. I landed in Orlando and had the option to make my luggage magically appear in my room at the Animal Kingdom Lodge. Flying in from Denver pretty much necessitates an overnight stay somewhere in FL before cruising from Port Canaveral. The next morning, I again had the luxurious option of having my bags magically appear in my stateroom on board as I was transported to the port. Score 1 for Disney magic.

Disney Fantasy Ship at Dock in Castaway Cay

The check in process was flawless. Which has not always been the case on other cruise lines. Another point. We were on the ship as quick as you can say Tinkerbell. There was no mass crowding to get on board and the Disney crew announces each new group by name as they board.

The lunch buffet prepared in Cabana’s was the perfect place to get a bite to eat, get oriented and meet up with all my friends sailing with me.

I went back to my room to change into the bathing suit I had in my day bag and found my luggage already at the room. My deluxe stateroom with verandah was beautiful. We were only the second group to sail out on the Fantasy so everything was new and beautiful! I was thinking though how my tall teen boys would do in this room and my 6’8″ husband would feel about that Queen sized bed (which turned out to be SO comfortable just for me). Comfortable, deluxe bed is another big plus but no doubt, 4 people (all adult sized) would be cramped in here.

Which made me worry that if my family of four would be cramped here, how in the world would a room like this accommodate Carters wheelchair? Thankfully a friend traveling with our group was using an ECV and had booked an accessible room. She wrote that her room was perfectly able to accommodate her needs. 

While the group of friends I traveled with did not bring their families on this preview cruise, many others did and what I was constantly struck by was how often I did not see kids! You would have thought the ship would be crawling with lots of loud kids enjoying Disney. But the adult areas are well defined and while the kids are off having their fun, parents had plenty of time to be in the adult areas. Parents on board told me they barely had seen their children. Disney does onboard what it is best known for-it entertains little ones! Which give parents plenty of worry free time alone. Another huge score for the well defined, adults only areas to relax.

Cruise ship food can be a great place to taste mediocre food. Not on the Disney Fantasy. Each night dinner was a well coordinated ordeal. The lobsters were huge, the desserts fabulous and the staff attentive. Every dining opportunity was used as a chance to entertain and the fun in Animators Palace is not to be missed by kids or adults.

Some other nice touches that scored big points with me:
  • Fireworks. Disney is the only line allowed to shoot fireworks off the ship. One night, the Dream passed us and we stopped as they shot off a whole fireworks show for us, and we returned the favor by doing the same for them. It was a fun night and was interesting to see all the other cruise lines in the area pull in close enough to get a glimpse at the shooting sister ships.
  • The nightclub areas for adults had amazing themes such as London Tubes, Irish Pubs, and a Skyline that constantly changed scenery.
  • Soda is free and is easy to get. All of the food on board was above what I expected to find and allergy options were clearly marked

Another reason to choose a Disney Cruise is picking an itinerary that includes a day on Castaway Cay, their private island, which in fact feels much more like your very own private island. There was much to do and see on this Island but I enjoyed heading out to the adult beach and ordering an adult beverage, sinking my lawn chair in the ocean and relaxing away the day. It was just what I needed. Or maybe he was just what I needed…

sand wheelchairs on Disneys Castaway Cay IslandI was very pleased to see the large amount of sand wheelchairs available on Castaway Cay. I was disappointed in that this style would force an independent chair user to rely on someone else to push.

All in all I had a wonderful time on this brand new, beautiful cruise but sadly cannot say whether or not the extra cost would be worth this for a special needs family. I would need of see how they deal with kids with autism, how things like toileting are handled in the children’s programs. I would like to know how many child’s crew members can sign and how they deal with ‘runners’. Mainly I would like to see how inclusive their amazing programming is. That would determine if I could really recommend a Disney Cruise to special needs families. As it is now, I see how a typical family with kids under 12 could justify that all the Disney magic really is worth the extra money.

Here is hoping to another chance to bring Carter and really get the chance to see how this works for families like ours! 
Filed Under: children with disabilities, Travel Tagged With: , ,
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Special Needs Kids Are Kids

December 17, 2011 By 1 Comment

Christmas is a hectic time of year for shopping. Most of us dread the long lines, sold out sale items and kids having major meltdowns in the checkout aisles. But while I was out shopping the other day I saw something that so reminded me of when Carter was younger. There was a child that obviously had special needs, having a complete tantrum in the middle of the store, and the mom is trying to deal with it while people just walked by and glared at her. The look on their face was one I have seen many times: horrified shock that she was disciplining this poor child. She wasn’t out of control or anything like that, she had just had it with this kid and was at her limit too.

It took me back so many years ago when Carter was finally mobility independent. You know that period when you start teaching them to walk in the store, rather than put them in a cart? Most kids go through this around 2? Carter was probably closer to 4 and had an extra few years worth of excitement in him. He would roll down the aisles and sweep stuff off the shelves in pure joy. And I would get mad. Like any other parent would, like I did with Connor, and I would tell him “if you can’t behave yourself I will take that wheelchair away and you will sit in the cart” and people would glare at me with their fingers ready to dial CPS and I would say “what? he is a KID! Would you let your kid knock stuff off the shelves? Of course not!”

That is the thing most important to remember. Under all the ‘special’ is a KID. One we hope will grow up to be a productive, functioning member of society…..not an adult who purposely knocks jars off grocery shelves. Yes, our requests may sound weird to you because a wheelchair or whatever equipment isn’t part of your vocabulary, but the way we discipline our kids isn’t really much different. Yes, I have sent him to his room, yes, I have grounded, yes, I have lost my temper and yelled at him. I am a mom, not a saint.

Please don’t hold special needs moms to sainthood standards. Our kids may be ‘special’ but they sure can be brats at times too!

 

Filed Under: children with disabilities
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An Open Letter to a Special Needs Mom

August 19, 2011 By 6 Comments

Dear Friend,

Close to 4 years ago our friendship started with a desperate message from you for some help, some guidance, some information, something that would tell you all would be OK with your little girl. You know now that I get those messages a lot. But something in yours was different. You reminded me so much of, well, me. I picked up the phone and we began our friendship.

Through the years I have given you lots of advice for helping your little girl. And in return, you have become a source of information for me as I began uncharted waters with certain treatments. Some days I am sure I offered too much information and you thought, clearly, I must be crazy but most things I have been pretty on target with.So I hope you will trust my advice now.

Lot's of people consider the daisy a weed. I think it is a tough, beautiful reminder that grace often survives in the harshest of environments.

I know you are scared and I know how you feel. And I know that there are very few people who can truly say that they understand your world. I do. I lived it and continue to. You are SO much like me when I was in your stage.

So now I have some advice for YOU. Not for your daughter. This is just for you. So listen up because I wish someone had told me this years ago.

In the 3 years of your daughters life you have gained a lot. You have, also, lost a lot. You have cried over the miracle of seeing her walk and you have cried over the disaster of her falling out of her wheelchair. You have beamed at her successes on so many things and locked yourself in the bathroom to quietly cry over her failures. You’ve been to church, you’ve gotten drunk, you have tried to get away and you have tried to hold on tight.

You have done an amazing job. You need to hear that. Everyday with this disability are a million tiny heartbreaks and a hundred little miracles and you have rocked them all. You have gone from being a scared 20 something year old mom into a fearless warrior of ‘fuck you’s’ to many deserving foes.

But while you have gained such strength in being a special needs mom, you have lost YOU. You need to find her again. You need to find a place and a time where you are not known as “someone specials mom”. Because it is so easy to forget who you are when you are constantly labeled as THAT MOM.

Your daughter will grow up. She will get where she needs to be. And yes, she will always need you more than the others will. And that is the point-she will always need you. She needs a mom that is happy and healthy. And it is too easy to neglect yourself now in favor of her needs. In the long run, it doesn’t do either of you good. I know. I am living it.

So I am here to just give you a gentle reminder….take care of you. Because the reality is that you are the glue that keeps all those pieces together. You are the master juggler of all things. You are her warrior. Feed that.

Love,

Barb

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It’s Never the Big Things…

May 20, 2011 By 12 Comments

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People seem to think that special needs parents have a super hero cape that was issued on the day our kids were diagnosed. If they do, I must have skipped that line. Or else the dry cleaner lost it. I think that perception is because so many of us are able to function beautifully in crisis situations. Yes, I can handle surgeries and hospitals and waiting rooms and tests and and and….

What you don’t see are the meltdowns that occur over the little things.

The things like it taking 30 minutes and a crowbar to get a pair of pants over a leg not shaped like everyone else. Or the destroying of a $15 bandage cause you dropped it. Or taking a crew of people to accomplish a simple shower. THESE are the times when that mythical cape lay torn and tattered in a crumple mess on the bathroom floor that hasn’t been mopped in a month.

These are the times you don’t see. Me screaming and crying cause I can’t find a shoe. Or being so exhausted that literally sitting in this chair hurts. Or going postal on the person driving too slow in front of me. My imaginary cape tends to hide all that from the world.

Or maybe it doesn’t. Lately I have been tired and cranky and judgmental. I have been quick to snap. Quick to scream. Quick to cry. Quick to lose my patience. Quick to be negative.

and I am always surprised by it. And hard on myself because of it.

Cause I do hold it all together so well when everyone thinks I should be a mess.

And I am not the only one. I have talked to many special needs moms that have gone through this. Apparently, one can only be super so long before eventually your human shows. These are the things that no one tells the new special needs parent.

It’s after the crisis that your resolve is quietly tested. It’s when everyone thinks you have conquered the summit that you are barely hanging onto the cliff with your last artificial nail.

That is when you need the support of awesome friends like Melissa that make you cookies, Suzanne and Laura who know the value of a cosmo (or 10), a mom who throws a load in the washer, a husband who brings home takeout, kids that are resilient and a dog that loves you unconditionally.

Cause you know how to handle a tsunami. It’s forgetting an umbrella during a spring shower that will throw you. Every. Time.

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Would Someone Please Stop the Merry-Go-Round?

April 13, 2011 By 18 Comments

This post is one of those that comes into my heart and has to be published. It’s messy and raw and real. I have these moments where I just need to write. I am having a moment now so please indulge me by not caring about the way it comes out.

Would Someone Please Stop the Merry-Go-Round?

Really. I am tired. and dizzy. and I just don’t know how many turns I can take at this.

The ups and downs and the constant round and round. Never really getting anywhere. No finish line to reach.

When your kids are little and they have a special challenge like spina bifida you have so many people there cheering you on. Cheerleaders do it out of love for you, your child, and a tiny hope that they are right. They say, “keep going” “you are in the hard years” “it will get better”. Theoretically, they are lying. I don’t think it is even a lie they are aware of. I have told it so many times myself.

Somethings DO get better, but mostly you just get stronger. You transform from the crumbled mess you were on the day you heard your child’s horrific diagnoses. You become harder to beat down. You readjust your vision of ‘normal’. It’s who we are as humans, as mothers and fathers. We adapt.

The capacity to adapt as a special needs parent is nothing less than a miracle.

People see you on the outside and the just rave about how ‘inspirational’ you are, they ‘don’t know how you do it’, you are such an ‘angel’. You know it isn’t true. You do what you have to do. You don’t have a choice. You love your child more than yourself. Every parent does, and whether they believe it or not, you know that if their child, God forbid, had something terrible happen to them, they too would do it. They just don’t know it yet because they haven’t had to find that strength.

But there comes a time when if you bend anymore to fit in this odd shaped container you know as normal you will simply break in half.

Today that is my reality.

My body is tired. My body is warning me that I won’t be able to lift my son anymore. I won’t be able to keep doing the things he needs because he is getting older and bigger. It is telling me that muscle relaxers and pain pills are my consequence of loving someone more than myself. Of doing things I know my body isn’t strong enough to do. Of ignoring the signs that I am taking on too much.

and that makes my heart break into a million pieces. And it makes me realize that no matter how many of these damn horses I try and ride, none of them are ever going to break off this merry-go-round.

And so we march on, up and down, round and round and pray that simply enjoying the ride is the point.

But writing this all out  made me realize I really don’t want off the ride. I am enjoying the ride most days.

I guess in the end I know that is the point. Some days I just need to remind myself that while I go round and round and up and down, I love the people on this ride with me. I love that we never see a finish line in sight.

Finish lines aren’t all that they are cracked up to be.

 

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