Wednesday, September 25, 2013

Dear Disney, accessible for some does not mean accessible for all.


In my opinion it is a loosely used term. I didn't think that way until we had Dylan. Of course after we had Dylan, that was an entirely different story. We would naively go to places that were "accessible" only to get there and find out that accessible meant having an accessible bathroom and seeing about 20 steps that we would have to get up with a 250 lb wheelchair. Not so accessible for us, but accessible for some.

My husband and I have lived almost 10 years trying to adapt things to make them accessible to suit our son's needs. I feel we have been relatively successful in our quest but it is not without a struggle and also without some disappointment.

One thing that we have not had to struggle much with are our trips to Walt Disney World in Florida. We have been visiting Disney with Dylan since he was six months old. We have always been able to obtain a Guest Assistance Card for our visits, which grants our party an alternative access to rides and attractions in the parks if they are available. Most of the Disney Cast Members have always gone above and beyond for our family although once in a while we may encounter Grumpy out of his costume. I mean, COME ON, I shouldn't need a pass for you to see that my son is severely disabled. His wheelchair, ventilator, suction machine, and feeding pump should make that obvious, but still we always try to follow the rules wherever we go because Dylan doesn't like to be singled out even if it means an inconvenience to him. The Guest Assistance Card is something my family needs in order for our son to properly enjoy his Disney experience. He can't wait on long lines in crowded areas with no emergency exits, he sometimes may need a breathing treatment which can take 30 minutes, and lets not talk about going to the bathroom because that alone could take up to 40 minutes on a good day at a theme park. Not to mention the fact that there is usually only one accessible car or boat for him to ride on that we normally have to wait about 15-20 minutes for anyway as he cannot transfer out of his wheelchair.

We took a trip to Disney in February and noticed abuse of the Guest Services Card by some other people. I mean I get the fact that older people need assistance, but when I arrive into the "accessible parade viewing area"  with my 9 year old son who is on a ventilator and in a wheelchair I expect you to move your seven able bodied grandchildren out of his way. Also it is really not appropriate to later have your grandchildren ride and race in your rented scooter or wheelchair. I don't care how tired they are, rent a stroller. Better yet, be happy that the child is able to walk.

What does abuse of the Guest Services mean for those who truly need it? Well, for those who are not as visibly disabled as my son is, these people getting glaring looks and eye rolls as if to say you really don't need this pass. These could be cardiac patients, kids with autism, kids recovering from cancer, or even a war veteran with PTSD - you just never know so you should not judge. Even people who are overweight, I get that too, but the service should be for them and someone to assist them, not for the twenty other people in their party. A few months ago I read an article stating that people were hiring the disabled to act as tour guides so that they did not have to wait in line. Shame on those people and shame on those people who would exploit their disability for monetary gain. Due to this, Disney will be implementing a new system for the Disabled over the next few weeks. I will not bash this new system until I personally experience it which will be sometime over the next few months. What Disney should have done instead of making this change was to have been monitoring and controlling the issuance of guest assistance cards from the beginning. But because that wasn't done and of course people took advantage a change had to take place. While I put the blame on the abusers I have to put the majority of the blame on Disney who in changing this process is not looking out for the interests or safety of the disabled but just looking to clear the Disney name after some very bad press.

Disney, here is my message to you. It is wrong to be selectively accessible. Being accessible for some does not mean you are accessible for all. Think about it, really think about it.

Monday, January 28, 2013

Introducing Nicholas John

It has been a really long time since I have blogged. The last few months have been extremely busy here at the Cuevas house. We now have a new little member to our family and his name is Nicholas John. Nicholas was born on October 24, 2012 and weighed a wopping 9 lbs 5 oz!! Yes he was delivered naturally. I won't go into the details of his birth but lets just say I am glad he is on the outside.

During my pregnancy with Nicholas, I developed some health issues. About a year before I had him I had an enlarged spleen and some wacky bloodtests where my platelet counts were becoming dangerously low. I was diagnosed with something called ITP which is an auto immune disorder. There was talk of removing my spleen but then I became pregnant with Nicholas and that was not an option. Anyway, my platelet counts had to be monitored closely as they could not get too low or it would have been dangerous for Nicholas and I. I also had to restrict my activities and do a little something called resting which I am not very good at. I decided to go to a different Hematologist and after more blood tests was also diagnosed with Chronic Epstein Barr. I have to say that everyone really pitched in to help me out especially during the last weeks of my pregnancy. My husband and father really worked extra hard in the house and with the kids so that I could get the extra rest I needed. Not to mention the many doctor appointments and tests I needed to go for which they either took me to or took care of the kids. Dylan's nurses were a huge help also. I don't know what I would have done without my family, the nurses, and friends helping us during the last few weeks of my pregnancy with Nicholas.

We brought Nicholas home from the hospital on Friday, October 26, 2012. Three days later we had the worst storm I had ever experienced, Hurricane Sandy. We were fortunate that we had minimal damage to our home but we did lose power and heat which is a huge problem when you have a child who depends on electricity to live, a newborn, and a person recovering from just giving birth who has a bleeding problem. Once again everyone pitched in and all of Dylan's nurses were beyond amazing. They all came in and worked even though they too had no power and heat. We were blessed that Roe and Frank did not lose power and had us stay with them for a few days. It was just what the dr ordered. Roe helped me get back on the road to recovery by forcing me to rest. Heather was in her glory getting to spend time with Jackie. Dylan was happy to have all of us together. Nicholas was just spoiled rotten by everyone. I still feel bad for my friends who are not yet back in their homes or who have had to find a new place to live.

I have to admit that I have really felt the pain of my Mother's death in Nicholas's birth. It is very hard for me to not see her hold him and love him. I know she really would have enjoyed this little blessing we now have in our lives. My Dad has been doing a great job of helping us. He even gave Nicholas a bottle which I don't even think he ever did for me. I know my Mom is in heaven laughing her ass off.

I am attaching some pictures from the wonderful baby shower my sister in law, Lisa had for me. It was so much fun and I truly appreciated all of the wonderful gifts for Nicholas.

I look at Nicholas and feel so blessed to have these three wonderful children in my life. Dylan and Heather are doing a wonderful job as Big Brother and Big Sister. I am so proud of them and how they love their little brother. Now onto the Adventures of Dylan, Heather, and Heather says, we need to plan big things. Next stop, Disney (to be continued.....)

photo by Elizabeth Kristin Photography