Family Vacations

Being a mother to a disabled child means that sometimes I have to make sacrifices. I knew this when Noah was first diagnosed with Autism and then later Bipolar Disorder. What I did not take into account though is that I wouldn't be the only one making them. I knew Noah would be in Special Education classes the rest of his life in a self-contained classroom; I knew that it's a good possibility that he will have to live with me well past 18 years of age if not the rest of his life; I knew his life would consist of many inpatient psychiatric hospitalizations, and I also knew that all the dreams and hopes I had for him as a toddler were no longer. I dealt with this reality. I never was prepared for the sacrifices my other children would have to make though. They both absolutely love their little brother; there is no doubt about that. I remember when Lonnie Jr was barely 5 and Danielle was 6, we sat them down and tried to explain Noah's disabilities. It was hard for them to understand at such a young age but they all agreed on one thing: Noah is not like other children. We went with that their brother was different and special. They have protected their little brother so many times and sacrificed more than they even realize. Danielle now understands he's autistic and a little bit of what that means but labels don't matter to them, but their fragile brother does. They have taken so much from Noah and never once do they hold it against him. They can't invite friends over out of fear of Noah hurting one of them but that's okay to them, they just lie and say they don't want their friends to stay the night anyway. When Noah was hospitalized for 8 days this past fall, they both cried and constantly asked for him. My daughter slept with his favorite car until he got back and she could give it back to him; my other son drew him probably 50 pictures. A lot of instances where other families can go out, we can't. When we plan a big outing "day", it's always cut short after the first task because Noah gets too stimulated. We once tried to plan a family day to a local water park, the cold water was too much for Noah and we had to go home early.

One might ask: Why in the world would you take all 3 of them to Disney for 5 days then?! I have many answers and many reasons. To get to what inspired this trip: my older kids deserve it! I have great children. Sometimes they're sassy or cranky but most times they are precious, enduring, loving, sweet, and giving. They are absolutely everything I would want in a child. They need to be kids, they need to remember what it's like to not be 7 and 8 going on 30. And as much as those children need it so do my husband and I. This year has been difficult and trying. Our 9th anniversary was in February. Instead of going to Universal Studios for an extended weekend, we wanted to do this instead. Now we did think about leaving Noah at home, I could get my mom to watch him easily. That's what we always have done anyway. But I felt if there was any place that we could take Noah and maybe possibly feel like a family it is Disney World. Then there was the point that Noah is autistic, he is bipolar - all of these things are true but he's still a child. He is a child who deserves a vacation, 5 days where he can feel normal and be like every other kid out in this world. It's where dreams come true after all, isn't it?

My entire point of this blog entry wasn't to justify to others our vacation decision. I just know that when I was doing the extensive research whether to take Noah with us or not, there were so many blogs and articles that helped me immensely. I wanted to help out, give back, and maybe help another parent who might be considering taking their special needs child to the land of dreams! I plan to keep an updated daily blog (it might not all be posted until I get back though) so its a better insight. Below are some pictures of things we did to prepare for this trip!

The first thing we are doing to make our trip a little bit easier and accessible to Noah is getting a single or double stroller (we have yet to 100% decide on which). He has low muscle tone (hypotonia) to start with so we knew we'd either need a wheelchair or stroller. We were going to opt for the wheelchair because it's cheaper ($40 for all 4 days at the park) but he does have a tendency to just get up and dart for no reason. Disney World would give him plenty of reasons so we felt that was a bad idea so a stroller where we could strap him in was the more logical (and safer) option. Due to him being the size of a 7 year old, it made buying a stroller just out of our price range. We got a letter from his neurologist (although from what I understand it isn't required) so we can use his stroller as a wheelchair wherever wheelchairs are allowed. We think this will help his hypotonia but also help the trip and long lines run smoother. We are of course going to try to get the Guest Assistance Card. I keep getting conflicting information if you need a letter from your doctor or not. I had an issue with getting that so I am just bringing a letter from his psychiatrist that lists his diagnoses and hope that's enough IF they need it. I will keep you updated if it was needed or not. And for those who aren't aware what the GAC is, it allows you alternate waiting areas (shaded, away from crowds, etc.) or to enter through the Fast Pass or Handicapped entrance. Disney doesn't advertise that it helps cut your wait down but from what everyone says it does. It also gives you seating at the front of the shows if available. Overall, it is used to alert the cast members that a person has a disability that isn't visible. We are also bringing my mother with us to help with Noah if he is having a meltdown, isn't wanting to ride a ride the rest of the family is, or needs to be taken back to the hotel. We figured a ratio of one adult to every child was a good one!

We are staying on Disney property. There are so many perks to it that it was worth the extra $15 (yes, I said $15) than when we would stay off property thanks to a Florida resident special Disney is currently running. Not to mention that you get free parking at the parks as a perk so let's deduct that to THREE dollars. Our hotel room is decked out in a pirate theme with 6 heated pools where the main pool has 3 water slides for the kids and a shipwreck water park for the children under 4 ft (Noah is just under 4 ft without shoes!). They also provide free transportation every 20-30 to/from the resort if needed so if my mother does need to take Noah back, she can. It's of course a close commute for us even by car so we can take a midday break if needed. They also offer "extra magic hours" that the park is solely open to resort guests only. So on the days the park opens early we can take the kids and enjoy the busier rides without the extra wait and on the days the park is open late Lonnie and I can go back to the park after the kids are in bed to enjoy some "us" time. For us, that $3 extra a night is worth it!

Now one of our big concerns was what happens when we are in public: the stares, comments, and questions. A 2 hour trip to the grocery store is fine to endure this but 5 days back to back I knew would get annoying and we didn't want Noah to be treated unfairly because people simply didn't know. Now the questions I don't mind so much (if they're in good taste) but the unnecessary, ignorant comments and stares would definitely put a damper on our family vacation. We wanted something he could wear saying something about autism but in a cute way. My close, awesome friend from Oklahoma made him a cape that says "I Have Autism ... What Is Your Superpower?" It is adorable and I will forever be grateful to her for that thought of kindness and generosity. She also made a flag we could put on the stroller. We were also very concerned about Noah getting lost. Actually, that was a huge fear of mine. We decided to make a name tag he could wear that had information about him being autistic, what it meant, and all of our contact numbers in the event he got lost or ran off. I even added a little Mickey Mouse on it to "Disney" it up. (My husband also drew a Mickey Mouse head with puzzle pieces on the cape ;))

When packing for the trip we had to address all of his needs: his inability to wait, sensory problems, his diet and selective taste in food. I knew we needed something to occupy him when we did have to wait for a long time (the GAC doesn't help you with meeting the characters which is one of the things he's most excited about). I decided the best plan was to bring his Leap Pad equipped with headphones and his Scooby Doo game. We were bringing this anyway for the car ride but it will be recycled in the park as well. We also knew some of the shows, parades, and attractions would be too noisy for him but we still wanted him to be able to enjoy them so we invested in some soft ear plugs for him. Even my older kids want to use them to on the rides that are too loud! I had to get him sunglasses as well since the sun is too bright. We also packed his blankie he uses to chew on and then one to cover up with in case he wants to take a nap (which we are hoping on!). We are making sure to bring his favorite snacks if it doesn't have to be refrigerated and some which do since there's a fridge in the room. I figure at least that way he will be able to eat when we go back if he doesn't eat very much at the park!

Well, that is it so far. I am excited and nervous. I really hope the kids have lots of fun and this is a positive experience.