Life as a Leach

While planning for our cruise, I read quite a bit about the kids' clubs and how they can accommodate kids with special needs.  I saw a lot about kids with autism and cognitive delays and how they can modify things as needed.  Kids have to be potty trained, but even kids in pull-ups can be accommodated at time.  However, I could never find solid information about what they do if the kids have complex medical needs.  In talking to customer service representatives with the special needs department, they said that parents could not stay in kids' clubs.  The only time we were allowed in was during the open house each day for an hour.  I figured I would wait until we were on the ship and talk to someone, which is exactly what I did. I realized quickly that the open houses were unstructured times, and the really fun stuff happened when the parents couldn't be in there.  However, I really needed to be around in case Abby had trouble breathing or got knocke...

Disclaimer:  Abby has the ability to walk, but uses her chair for longer distances and to avoid stairs because of her decreased lung capacity and her severe kyphoscoliosis.  Our experience was with a child's collapsible wheelchair, which we bought for this cruise because we felt it would be easier to maneuver than her custom power wheelchair.  We were right!  I try in this post to include info about power chairs and wheelchair dependency as well, but our experience is with a child who is able to walk some. When I shared that I would be blogging about our cruise experience as a special needs family, several people asked for me to look specifically at the accessibility of the ship.  I took special notice of how handicapped accessible each area was, because anyone who deals with a wheelchair knows that "accessible" is a relative term! In the main areas of the ship, everything was pretty open and accessible.  We never had problems maneuvering the wheelchai...

I'm a self-professed germaphobe.  I had some tendencies before Abs, but now...it's in high gear!  I am extremely aware of germs, coughing, smoking, etc....to the point where it has actually caused some panic attacks.  I know many medically fragile families are concerned about germs, so hopefully this will alleviate your concerns. I've heard some nightmares about germs on cruises, so I packed Lysol wipes in our medical bag (4 canisters...lol!) and planned to use every one of them.  We used a ton on the airplane to wipe down seats, trays, and arm rests.  I even had strangers ask to use them!  :)  When we first got into our stateroom on the cruise I cleaned every inch with Lysol wipes.  There was no need!   That room was spotless, and our room steward Winston cleaned it every day and took out the trash twice a day.  There was not a speck of dirt on the Lysol Wipes!  What's more is that there were crew members CONSTANTLY cleaning th...

Once we got through security, we had a little time to relax and make sure we had everything organized before boarding.  I spoke to the employee at our gate about boarding first and he assured us we would.  When it came time to board, he called first class customers and not us.  I went up and reminded him, and he waved us through...much to the dismay of the first class flyers!  Honestly though, they really wouldn't want us bumping them with the ventilator as we pushed by!  At each gate after that, we stood close to the desk so that they wouldn't forget about us.  It's hard to ignore a cute little girl in a wheelchair and her 5 looming pieces of medical baggage! We loaded first and had time to get ourselves situated before the rest of the plane filled up.  Matt sat across the aisle from me so that he could help get me supplies as needed.  The vent went under the seat in front of me and the oxygen concentrator went under Abby's seat.  We also ...

If you are flying and/or going through customs for your Disney cruise (which I would venture, most of you are), I hope you will find these helpful.  You will also want to refer back to this post , as I won't be repeating too much of what I've already shared.  I called TSA Cares a week before our flight.  They took down a ton of information and assured me that we would have an escort through security.  She also gave me some phrases to say so that they would know exactly what we did and didn't want.  That was wonderful...except that our info wasn't shared with the airport, so they had no record of us coming.  Ugh.  They scrambled and found two TSA agents to help us (one for us and one for my sister's family, since most of their kids also have some medical issues).  These people were very helpful and kind.  I would suggest calling the airport itself the day before your flight to confirm that they have you down as a TSA Cares customer!  It...

Flying with a person with special needs, especially one with a lot of medical equipment, can be daunting.  I'm really glad the first time we flew with Abby was without the bipap, neb, and cough assist!  If my first time was with all of this stuff, I think we might be driving to Vancouver!  :)  This will be a long post with a lot of information, but bare with me. I think you will find my personal experience and the links I share helpful. My number one piece of advice for flying with a person with special needs is to NOT assume that anything is fine!  Ask about EVERYTHING!  Contact your individual airline's special needs consultant to make sure that any equipment you have is safe for the flight.  Not everything is and sometimes only certain brands/models are allowed.  Certain batteries aren't allowed, so check for any equipment that runs on battery.  It can also vary by airline, so please call and ask.  The last thing you...

I have learned a whole lot during this cruise process about cruising with a child with special needs!  I have seen a lack of blogging for families with special needs, so I thought I would designate some blogs specifically about that to help others.  The thing that really sets Disney apart from other cruises is the support and accommodations they offer for people with special needs.  It's not that other cruise lines don't want to have those with special needs, but Disney has really gone above and beyond. There are quite a few accommodations Disney offers in the staterooms.  You can see a complete list here.   We didn't need any of them because Abby is ambulatory, but it is nice that they have them!  There's also information about wheelchairs on this page.  I plan to stow Abby's wheeelchair in our stateroom as long as we can find room, but there are wheelchair designated spaces in the ship.  There are also areas to keep them when you go to the the...

I have some very exciting news!  My family will all be going on a Disney cruise to Alaska this summer and we are SO excited!! While this trip has been in the works for some time now, we were hesitant to get our hopes up for a while and didn't say much because we weren't sure Abby's health would allow us to go.  A few weeks ago, we got the okay from her pulmonologist and it is full speed ahead!!    Abby's #1 thing she is looking forward to is cuddling sled dogs.  Of course!! When our pulm said she could go, she told Abby to, "Go cuddle those sled dogs, Abs!"  Love her!   She did caution us that this wouldn't be a very relaxing vacation for us with multiple bipaps and respiratory treatments during the day and bipap, gtube feeds, and pulse ox monitoring overnight, but I laughed and said we are used to that.  We have been dealing with the vent, cough assist, and neb treatments for just abo...