- Travel and Places
Christmas At Univeral Orlando Resort: The Safest Place in Florida for Individuals with Medical Issues and Autism
The Real Beauty at Universal Orlando Resort is in Their Loving Hearts and Brilliant Leadership
How I Came To Converse With Executive Management at Universal Orlando Resort
Sometime in 2015 there was an International Crime Prevention Seminar. In their literature they kept referring to Universal Orlando Resort and Disney as if they were partners. For those of you who do not know me, I am a parent of a very special young man. My son has two incredibly rare disorders. One is Mitochondrial Disease and the other is Landau Kleffner Syndrome (LKS) which manifestation Is on the spectrum of Autism. The Mitochondrial Disease keeps my nose and discussions with my sons physicians in the realm of biochemistry while the (LKS) keeps me current on the brain. After 15 years of studying both sciences I can tell you we know far too little and not nearly enough. It is humbling and I am always trying to build the bridge between the world of rare disorders and developmental disabilities with ordinary people.
I am accused a lot of lobbying or advocacy for individuals with exceptionalities but honestly we all are exceptional and have individual needs.
So upon reading the crime international crime prevention literature there was a section named, "Dealing with Autistic Citizens." I wrote the head of the police department in Arizona that organized the speakers, I wrote the head of organization of the international crime prevention and intervention and I wrote Disney World and Universal Orlando Resort executive offices respectively.
There was an argument between the International Crime Prevention Law Enforcement educators that Individuals with exceptionalities represented a threat to society. I argued with everyone that:
1) Individuals were individuals before they were actually any disease or disability and the title, "Dealing with Autistic Citizens" was providing exceptionally poor training to law enforcement officers.
2) That Individuals with Autism were more likely to be victims of crime than perpetrators.
3) That they were engaged in teaching discrimination to law enforcement officers making them biased against individuals with medical complexities. I believe it will be discovered that autism is an auto-immune disease but even if I am wrong they could not profile based on disability or medical complexity in essence discrimination.
This argument went all the way to the FBI and it was agreed upon that I was indeed correct in my assertions. It was a David against Goliath battle. It took me months and pestered everyone. I could not let it pass though.
However I was fortunate to have been blessed with an email from a Senior Executive from Universal Orlando Resort and he assured me that under his management all children of all diversity were welcome at Universal Orlando Resort. As it turned out the conference attendees were not actually holding the conference at Universal Orlando Resort. Thank God, there is a place where our children could go and be accepted for one day in their lives.
So the Senior Executive At Universal Orlando mentioned that if we ever ended up at Universal Orlando Resort to contact him first and the senior executive staff at Universal Orlando would help make accommodations.
Why Did I Tell You About This Part of The Story??
I shared this part of the story because Universal Orlando Resort senior executive staff was supportive of my efforts. That is not to my credit. I probably come off abrasive frequently but I knew how toxic this type of training was to law enforcement and how harmful it would be to individuals with complex medical issues and/or autism. It was a big fight over a long time but one I thought was well worth fighting. I still believe our law enforcement are not provided adequate training to work constructively with individuals with exceptional needs. It is not their fault. I have had regular people and law enforcement voice to me they are afraid of my son because they do not understand or know how to interact with him. I am not insulted because at least that person can be taught. People with exceptionalities are people first.
But this fight has relevance even today. About a week ago a care attendant of an individual with autism was shot. The bullet was meant for an individual with autism who was carrying a toy truck. The media has focused on the care attendant who was shot and I have a great deal of empathy for him. However no one is focused on the fact that the bullet was meant for an unarmed disabled person. Neither men were armed. This is a huge lapse in training when a cop shots at two unarmed men, one of which is disabled.
So of the different individuals I contacted over a year ago about this International Crime Prevention Seminar and the training called, "Dealing with Autistic Citizens" Universal Orlando Resort senior executives were the clear advocates. They responded and answered that they did not discriminate but were willing to accommodate the disabled to be included in their theme parks.
Cop Takes Aim At An Unarmed Person with Autism.
Was It Possible to Take My Son, Alex, To A Theme Park?
Alex and Theme Parks
First to know about Alex is to know he drives four hours one way and now he will be leaving the state to receive medical attention because his disorders are so rare. He is well travelled but I carry a tremendous amount of equipment and supplies for him. There was also the consideration what would I do if he became ill. This turned out not to be as big of a factor as I thought. His emergency care is an hour north of where we live. Universal Orlando Resort is a little over two hours north of where we live. If he became ill I would just drive about an hour, which I would have to do if we were home, and he would be at the hospital that provides his emergency care.
Second I was concerned people would judge Alex but he was greeted and welcomed. It was as if Universal Orlando Resort was one big international family that accepted Alex. The first day as he ran down to the dock, I had the 39 lb pack on my back, so I was finding it hard to keep up with him. Alex had never been on a ferry before. He did not want to take the ferry to the Park. He pulled me back and I fell flat on my 39lb backpack knocking the wind out of me. A lovely British woman who was bone thin picked me with my pack up on. She told me not to worry she worked with individuals with special needs in England. I do not know what she ate but I wanted some. She was brutally strong and equally as kind. Everyone was so nice to us even though Alex was freaked out on the ferry.
The Opportunity to Redefine Christmas
In 2011 My Mother, Alex's Nana, died of Cancer. She quite literally dropped in front of the Christmas Tree. It was the last time Alex saw her. We had about a week afterwards that she was in hospice but then she was gone. The cancer that had supposedly was in remission, wasn't. I knew that I would have to take Alex away from my Mom before she died. We would have lived some place else. Depression and suicide rates among children who watch a loved one die is very high. For that reason Alex would have been sheltered from the emotional impact but the entire family wanted me to care for her because it was rectal cancer. They thought it was my responsibility as her daughter to take care of her and I did with Alex through two brutally long years of end stage cancer care.
Alex adored his Nana. Even with autism he could not understand why the family insisted on putting the Christmas tree up when his Nana clearly needed to be in the hospital. She did not know us. Quite frankly, I thought it was insanity when the rest of the family put up the Christmas Tree too. So Alex watched his Nana die at Christmas.
Alex had never been allowed to go to a theme park but when the Senior Executives of Universal Orlando Resort offered to make accommodations for Alex to go I jumped trying to redefine Christmas for Alex. Alex has always been a die hard Harry Potter fan. He has always wanted to go to magic boarding school. I told Alex when I find a magic boarding school for him he will attend. Guess what? Universal Orlando Resort has everything Harry Potter and much. much more!!
Universal Orlando Resort Senior Executives did not hestitate in fulfilling our request, even though Christmas is the busiest time of year.
After putting in the request for the assistance for Alex to spend/redefine Christmas at Universal Orlando Resort, I received a call that senior executive staff at Universal Orlando had set up everything for Alex to spend Christmas Eve and Christmas Day at Loew's: The Portofino Hotel with passes into both parks for both days. Portofino Hotel is breath taking and lavish. The staff are explemary. It was a dream come true. The bell boy was also gracious enough to secretly carry up all of Alex's Christmas gifts. They were mostly clothes but teenagers like nice clothes. I brought it in his treasure chest where he usually finds all his goodies. I doubt we will ever be able to have a Christmas Tree again after my Mom.
The Christmas Tree In The Lobby of The Hotel Portofino
Loew's Portofino's Hotel
Loew's Portifino Hotel
- Orlando Luxury Resorts | Loews Portofino Bay at Universal Studios
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As We Drove To Orlando
As I drove Alex roughly two hours north to Orlando I told him, "Sometimes really bad stuff happens in life and we do not understand why. I know Christmas has stunk and been really hard since Nana died but she loves you still. The Senior Executives at Universal Orlando Resort and Loew's Hotel Corporation have been extraordinarily generous to you. They are about to give you the greatest gift you will ever receive in your whole life. So sometimes really awesome stuff in life happens too!!"
When we drove up to the exquisite Portofino Hotel my son leapt for joy in the back seat. I knew the cardigan I bought him for Christmas was nothing in that moment. Although Alex can not speak I heard the shrilly of excitement in his voice. He was thrilled to be there and on of all days the two worst days of the year for us. I told him he was an extraordinarily lucky young man that the folks at Universal Orlando Resort had the intellect and hearts to embrace all diversities. I believe that to this day. If the United Nations were run by the Senior Executives at Universal Orlando Resort the world would be a better place. As we entered the lobby we saw a huge Christmas tree. Alex was excited he was jumping. The staff enjoyed Alex's enthusiasm and more importantly were not afraid.
I was also the luckiest Mom, thanks to the team at Universal Orlando Resort Senior Executive Offices, I got to see my son happy at Christmas again. We dropped off our bags and headed to the dock to enter the park. Alex was afraid of the ferry and dropped me but the lovely British woman helped me up and we were off.
Escaping from Gringott's
The Dragon Breathing Fire On Top of Gringotts
Diagon Alley was the first place we went. In the Magic Shop we bought the Chocolate Frog. Honestly I thought it was expensive but when Alex opened the box and I saw the size of it. I thought, "Money well spent!" It was also really good chocolate and the frog was big and solid. Bernie Bot's every flavored Beans were a good buy and very interesting to eat. However, Alex did much more than that. And here is the really important part, the staff at the parks treated him like he was a boy not a autistic person to be dealt with but like a real human being. He wasn't Pinocchio to them. As a matter of fact, no one was treated like Pinocchio. Everyone was part of The Universal Orlando Resort Family on the days we were there.
I had saved up for the once in a lifetime trip. So I let Alex thoroughly enjoy himself. It was too hot for the full length wizard cape but he picked his house and joined Grythindor. The tee shirt was well worth the price and I used the keychain to hold his special handicapped pass. It was Christmas Eve and Alex was surrounded by friendly people of diversity and the Universal Orlando Resort Staff who were exceptionally kind to everyone. They had a general enthusiasm for their jobs and that made the children excited. It made them easily capable of slipping into the wizarding world of Harry Potter.
Once Alex had his wand he also figured out how to use it in Diagon Alley. Wands can make magically things happen throughout the Alley. That thrilled my son. Upon entering, I as everyone, had their bags and back packs checked. In order to stay in the Park and not have to run back to the hotel for medicine breaks I had to carry Alex's medicine. I also carried sugary waters because he has a history of low blood sugars. This ended up not being necessary. You could buy a special cup you could refill with whatever drink you wanted at certain areas. After discovering this the first day, I vowed to bring a lot less into the park the second day.
Finally we made our way to Escape from Gringotts Roller Coaster. Now remember Alex has already had a blast. His behavior is perfect and has the patience of Job because he is in a place where he is accepted and treated like a normal boy. If we needed help we ask for it and receive it readily. Children with Autism have sensory integration issues. I knew that roller coasters would overload his senses. Escape from Gringotts was the first rollercoaster ride Alex ever went on in his life. He was quite glad to see his school chum, Ron, there. He grabbed my hand and remembered he loved me on a few of the turns but once the ride was over he took off running to get back in line to have another go. He was pulling at the handicap pass around my neck to which I said, "We use the handicapped pass one time each day. You can ride the other rides and tomorrow we will come back and ride this one more time."
Alex was okay with that. After all it was the happiest Christmas he had had in years. I recommended we go to Whoville because I had someone special I wanted him to meet. Alex never believed in Santa Claus. I tried Kris Kringle after that and he blew me off. Alex always believed in the Grinch Who Stole Christmas. His Nana and I taught him season (We live in Florida so he does not believe in those either but knew then by what videos we would play.) "The Nightmare Before Christmas" was always Halloween and "The Grinch Who Stole Christmas" was always played as Christmas approached. On Christmas Eve we always watched "It's a Wonderful Life."
Alex loved Cindy Lou Who but when he got to meet the Grinch he was ecstatic. I am sharing these pictures so you know where your child with medical complexities and/or autism will be accepted.
It Is The Grinch...Has Christmas Finally Come Back After Nana Died?
After Hanging Out in Whoville
We sat down and had lunch and the food was superb. There really was nothing not to love about the entire day. Alex was so overwhelmed, happy, and excited. As we ate I could feel tthe extra 40lbs on my back. Thank God I wore tennis shoes. I checked Alex's blood sugar and gave his some sugary drink to elevate it so he could keep going. I must have drank a gallon of water at lunch. My legs and back were cramping up badly but not wanting to ruin my son's gift, I forged forth. Before we received our check I remembered I had forgotten to call my Dad who is also end stage. Alex has limited exposure because I do not think he could bare to watch another family member in end stage cancer. My cell was dead. It was my fault. I had not conserved the battery so there are no pictures of a bunch of rides Alex went on. I had the charger but could not find a place to recharge. I now carry portable I made by hand.
The people at the next table asked about Alex and I told them this was his chance to redefine Christmas, with the gracious generosity of the Senior Executives of Universal Orlando Resort and Loew's Portofino Hotel and Alex was doing just that. I think they were Asian but honestly if you are at Universal Orlando Resort you are all family. They allowed me to borrow their phone so I could call my Dad and wish him a very Merry Christmas. I will be surprised if he makes it to this one and please dear God do not let him die on Christmas.
So I have to skip a big portion of our trip because the phone was dead. We made it back to the hotel around 6pm and were set to meet our friends for dinner at Bice Ristorante which is this fantastic Italian restaurant in The Hotel Portofino. The food melted in all of our mouths. We ate and my friend and I had a glass of wine. I was drinking so much water that the wine had no effect. Alex ate everything on his plate as if he had never been fed before. I did use my pedometer, and if accurate, we walked over 11 miles that day.
But it was well worth it just to see my son happy.
Another of the Many Christmas Trees Around the Loew's Hotel Portofino on Christmas Eve
Phenomenal food, fantastic service, and really reasonable prices, is how I would describe the restaurant. It is really important to remember I have a child with medically complexities doing all of this and every single person is sensitive to this fact as well but consistently he has service without making him feel different.
You could eat at this restaurant everyday for the rest of your life and be very content.
I Had Secretly Set Up Alex's Christmas for Him So We Could Celebrate Christmas After Midnight
Instead of Opening Gifts Alex Did This...
We were allowed to enter the park an hour before everyone but this time Alex was running for the ferry. I had the medicines but only carried the doses and equipment I needed. I appreciated they checked everyone going in Universal Parks on Christmas. I was happy to be checked if it meant everyone was safe. The park was packed with families. They were all types of families and everyone accepted and appreciated the diversity.
Alex wasn't sad at all. If anything he figured a lot of people needed to redefine their Christmas too and did so at the most accepting loving place in the world: Universal Orlando Resort. The entertainers that were there performing would stop everyone in the street for a performances that would easily rival Broadway. They have amazing talent there.
I will share Alex's favorite rides with you beyond Gringotts and the Hogwart's Express Train that he absolutely loved. On the Hogwarts Express Alex sat next to a French Family. Alex has had several years of French and while he understands it he can not speak due to his LKS. He absolutely adored them. Alex is a person who appreciates diversity. He has been reared to believe everyone is to be loved until they do something to hurt him. It happens too because of misperceptions about Individuals with medical complexities, rare diseases, (LKS) and autism. After all only 200 people in the world since 1950 have been diagnosed with LKS and Alex happens to be one of them. He is easily misunderstood.
Christmas Morning at The Portofino Hotel.
Ran to Escape from Gringott's Roller Coaster First.
Christmas Day at Gringott's Seemed Appropriate.
The Forbidden Journey
The Next Ride Was the Forbidden Journey
Alex loved this ride but was scared initially. If you are prone to motion sickness it may not be the best ride for you. He loved it. In the gift shop afterwards people helped me with photo. Please remember it was really hot and my make had run off my face by 8 am.
What was so incredible was that the staff stayed in character when I asked for directions. One actually escorted me to the place I needed to go. I mentioned the heat and his response was, "We drink ButterBeer for that." It was very charming he remained in character.
The Forbidden Journey Ride Video
Christmas Day Continued.
After we had mastered going back and forth between the two parks we decided to eat at City Walk. They had the perfect restaurant for Alex and I; Burgers and Sushi. You can image who ate what. We had just gotten off several water rides. My legs were still cramping no matter how much water I drank. I probably should have been drinking PowerAde/Gatorade at the Park but I was trying to be good. I had my battery on conservative which helped a lot. Neither of us had sun screen or even a hat. We just kept going. Of note, before I show you lunch, was The Despicable Me Ride; Alex loved it. It was not a roller coaster but uses a technology that makes you feel like you are on one when you are not. It was visually stunning. Alex has been a Minnions fan since the ride.
Sushi and Burgers
Alex's Favorite Ride
We had been on so many rides and Alex was exhausted. I hated stopping because I crapped up but we kept going. We were determined to make the most of Alex's gift and everyone was so gracious and kind. Not everyone has to run through the park like we did.
My worst fear did not happen. Alex did not get sick. He did not even freak out on the rides. We did not do the big roller coasters not because I did not think he could not handle it but because I was worried what others would think. Besides we had to leave something for our next visit. This experience was so fantastic for Alex. He saw families from all around the world sharing the holiday. He was not stared at but accepted and because he was he behaved. I have to say he was well behaved throughout the entire trip except the initial ferry incident but that was resolved,
Now to Alex's favorite ride but remember he was not allowed on the big rollercoasters on this trip.
This ride freaked me out a bit because it was so visually simulating. Alex loved it and unfortunately because it is in 3-D, I doubt you will be able to full appreciate it from the video. On the ride when Spiderman or the villians jump so did I. Alex loved it. I should mention that all of the rides require the 3-D glasses which I never thought Alex would wear but he quickly learned to wear them and were to place them after the rides.
Here is Spiderman 3-D. When Alex got off the ride he immediately ran to the handicapped entrance to get back on but we were there by the generosity of the Senior Executives at Universal Orlando so he was only allowed to use the handicapped pass once a day on each ride. This is where Alex was very disappointed. But we had been in the park since 7 am and it was well past 6pm. Alex was exhausted at lunch if you can tell by his eyes. Sadly, it was time we left the park and headed back to The Portofino Hotel to order room service and get some rest. As we road the ferry back, we did not see black, white, yellow, gay, straight, Christian, Muslim, Hindi, or Jews but families. We noticed that everyone at Universal Orlando Resort were a family who were generous and kind enough to make us part of their family for two extraordinary days.
German Color Change
Everything Exquisite at Loew's Hotel Portofino.
I received a message we were checked out on my cell that was fully charged. Then we received a call askping us if we needed help with our bags. Alex woke up laughing. He was like, "I am never leaving The Portofino Hotel." I told him if we win the lottery he can live at The Portofino Hotel and visit the Unversal parks but we had been graciously given two beautiful days of love and acceptance. He had the experience of a life time and it was time to leave graciously.
Alex was so sad. He was really prepared to live there. But then I reminded him it will be that much sweeter when we return so he got up and got dressed to leave.
"How Can I Live Here?" Alex thought.
The Ripple Effects of Our Behaviors
When I initially contacted everyone about a crime prevention seminar that profiled individuals with disabilities, I did not do it for this beautiful trip. I did it because I had a legitimate fear that our wonderful, and they are wonderful law enforcement officers, were being given bad information which would have lead to incidents like the one we saw in Miami a week ago. The Senior Executives were the only people who contacted me and were concerned as well. That speaks volumes about The Senior Executives of Universal Studios. They have phenomenal ethics and characters. They embrace diversity and celebrate families. It is humbling seeing people who are truly great in the world. That is who led Universal Orlando Resort when we were there Christmas 2015.
So if you have a child with Mitochondrial Disease and would like to take them to a theme park, or you have a child with autism and would like to take them to a theme park or even if you have a child with LKS and would like to take them to a theme park, I can think of only one in the world I can truly attest to being fully integrated celebrating each individual as person before a malady or disability. It is a place where you can find acceptance and that place is Universal Orlando Resort. I will include a reservation link down below.
I had intended to write this article months ago but either my son's doctors' appointments or his illness prevented me from being able to share this beautiful story with you until now: a week after a care taker of a person took a bullet intended for an unarmed man with autism. I fought because I am afraid we are not educating our law enforcement about individuals who need acceptance and understanding. I won that round although there is still the much larger problem with our country's law enforcement not receiving the proper education so they have the tools and coping skills to assist individual's who have exceptional needs. Remember Alex totally behaved because he was treated like he was part of the family. That is what the human race is. We are all one big family. The choice to be a good family member or bad family member is entirely up to you. Universal Orlando Resort Senior Executives and staff choose to act with light and love. It was a remarkable experience.
FBI agreed profiling based on malady was illegal.
What I am sharing is the one place I believe you can take our children and adults where they will be safe. That place is Universal Orlando Resort who are the only theme park that had the foresight and humanitarism to understand labeling individuals with autism in crime prevention highlights them for discrimination and as criminals due to their disability. That is forward thinking and brilliance on their part.
For Alex these experiences at Universal Orlando Resort opened him up to other experiences. A few months ago he went to Kennedy Space Center. It has fewer rides and a lot more education but they had the glasses and he knew how to use them. The Hotel Portofino left a lasting impression on Alex as well because they recycle everything so Alex has become much more conscious about recycling.
As for this Christmas, we may drive up for the day and spend it with our Universal Orlando Resort extended Family again or we might visit another place. What I do know is that because of the generous hearts and minds of the Senior Executives at Universal Orlando Resort Alex's heart is healed and Christmas is redefined for him; it is about being with your loving family including all diversities and the wonderful employees at Universal Orlando Resort who moved Heaven and Earth to give him a fantastic Christmas.
My gifts to him are still not opened.
So remember when you hear or read bad things on the Senior Executives at Universal Orlando Resort, the Executives at the Hotel Portofino, the Universal park employees, who help, smile and stay in character just so your child can have the wonderful experience of being at Diagon Alley. These are world class people and entertainers. They care about every single person who enters the park and even beyond because they are very friendly to individuals who are medically fragile and disabled. They are my heroes because they have open minds and loving hearts.
I want to personally thank everyone at Universal Orlando Resort especially the Senior Executives who establish this wonderful environment and gave us the opportunity to be apart of their family for two days. I also would like to thank guest services who are so helpful in making guest accommodations. We maybe back someday to visit.
In addition I would like to thank the executives at The Hotel Portofino. I want to thank the staff including the bellman, maids and the woman who delivered us room service. Thanks you so much for the water and the wonderful room.
And for my readers, thank you for sharing this story around the world. Families need to know there is a safe place to take individuals with mitochondrial disease, LKS and autism and that place is Universal Orlando Resort where everyone can find acceptance, love and where diversity is celebrated.
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