Last week my brother in-law, Tim, came to California to spend some time at Disneyland with my husband, daughter, and me. My brother in -law is not your typical 40 something man, he has Down’s Syndrome. This mini vacation is the second that my husband and I have had with him at Disneyland. The first was 15 years ago before my daughter was born and when my son was just a little younger than my daughter is today. Our first trip 15 years ago was a major learning experience for me because until that trip I had never spent long periods of time with Tim without his parents. I had no experience with anyone with Down’s until I met Tim. With the lessons I learned from our first Disneyland vacation and 15 years of getting to know each other, I felt prepared for this trip. Wondering how it went? Well let me share my story of what I did right and where I went wrong……
Our first morning was off to a bumpy start as we tried to explain that we would be eating breakfast in the car as we had an hour to drive to the park. Tim wanted pancakes and no matter how much we explained that pancakes would be too complicated and messy to eat while bouncing around on the freeway, he kept insisting. Thankfully he agreed that getting a McGriddle sandwich would be acceptable. With that we were on the road….. Lesson number one: Do not rush meals!!!
Once at Disneyland the day went smoothly. We started with one of his favorite rides Splash Mountain. It was confusing to him as to why we were not going through the regular queues and we had to explain to him that because of my wheelchair we would have to enter most rides through the exits. But other than that our day went off without a hitch. He went on all of his favorite rides and even did some shopping. After each ride we would ask how he liked it and his response was the same each time….”It wasn’t that bad”. Not that bad is better than I hate it, so we took that as a win! But we set a goal to see if we could get a better response on day two.
We woke up early on day two because he needed to have plenty of time to shower and take his medications. He had a sheet that he had to fill out daily and although he is able to do it on his own, we had to give him enough time to not feel rushed. Plus we needed to make sure he had an adequate amount of time to eat breakfast. Tim doesn’t live in California and when I woke him up he was annoyed and stated that I didn’t wake him up in time. But I did. His phone does not automatically change time zones and it took my explaining the time difference several times for him to accept that I was telling him the correct times. I also learned that there were some medications that he was supposed to have during the day that I had not been aware of. So with his daytime medications packed in my bag and alarms set on my phone we headed off to California Adventure. Now this park was completely new to him. This added some confusion as well. He understood that we were still at Disneyland, but he didn’t understand why he didn’t recognize anything.
Our second day was a special one for me and Tim. We had some time alone while my husband and daughter took off to get our fastpasses for Radiator Springs and World of Color. As we sat and talked about what we were going to do that day Tim shared that I was his favorite sister in-law. I am his only sister in-law, but I decided to ignore that fact and take this as another win. I have to give Tim kudos for going on the amount of rides that he did this day as they were all new to him. Thankfully we showed him videos of the rides at California Adventure prior to this day and were able to decide ahead of time which rides were out of the question just by his facial expressions. With that said, we did NOT go on Soaring over California as this would have most likely turned into screaming over California. The rides he did go on were The Grizzly River Run, The Little Mermaid, everything in Cars Land, all but Flik’s Flyers in Bug’s Land, and Toy Story Mania. Thankfully my disabilities made things easier for him as we were able to get on all the rides via the handicapped platforms. This was particularly helpful on rides that had moving walkways. This gave him the time needed to get on and off without feeling rushed or without us needing to obtain a Disabled Access Card for him. My husband was surprised and I was pleased that he enjoyed the Aladdin show. Usually Tim falls fast asleep during movies or shows, but this one held his attention and he loved every minute of it.
Day two ended with my helping him pick out a gift for his mom and we began discussing a gift for his step dad. He finally decided that he wanted to buy some fudge for his step dad. I explained that it would be best for him to purchase that on our last evening. He agreed and after buying snacks to enjoy during World of Color we were on our way to the show. While waiting for the show to start I noticed his nose was running and handed him a tissue. He then turned to me and said “You love me like my mother does.”. I am not gonna lie, a tear rolled down my cheek! I gave him a big hug and said yes I do!! So day two was a total success. He laughed like I had never heard him laugh before, and never once did he say a ride or attraction was not that bad. Instead we heard a lot of “I liked it” or “that was fun”.
Day three started off a little bumpy as we were heading home that evening and had to pack the car before we went to the parks. This wouldn’t have taken so long if it hadn’t been for something that I had never noticed in all of our years of having him visit us. I noticed on his first night that he took all of his clothes out of his suitcase and then carefully folded them and put them back. I didn’t question this as we were leaving for the hotel the next day. But then I noticed it again the following night, and the morning and night of the next day. So yes, Friday morning he did it again. At this point we were all tired. Since my husband, daughter, and I are annual passholders, we rarely play at the parks for more than two days in a row. Most of the time we just play for a day. We did more in those two days than we have done in a LONG time. With the car finally packed and with breakfast in our bellies we headed off to enjoy our final day at Disneyland.
We began our final day by conquering Fantasyland as we ran out of time and energy to do that on our first day. Thankfully it was a slow morning and we knocked out a lot of rides in a short time. Because he handled Indiana Jones, Splash Mountain, and Star Tours so well I didn’t think we would have a problem with Peter Pan. WRONG!! This was the first time that he stated that he did NOT like a ride. So note to self….Never take Tim on Peter Pan again!!! Of course the ride had been my idea and I was beginning to lose points with him. I gained a few back on the Tea Cups. Tim has the most adorable and contagious belly laugh when he is having a blast. There is no way not to giggle along with him. Well it was a good thing that I had that moment, because from that point on I could do nothing right.
Tim loves Star Wars…..He is obsessed with Star Wars…… He lives for Star Wars…… He was so excited to hear that there was a Jedi Training show in Tomorrowland. Thankfully my daughter had long ago been picked for Jedi training and no longer had the desire to do so. This allowed us to sit at the tables in the eating area next to the railing and not on the ground with all the other kids. When I brought up the subject of seeing this show, I never once thought about the fact that Tim would want to be picked. Sure enough when the announcement about children being able to be chosen came on, Tim whipped his head around and told me very excitedly that he wanted to do that. Uh OH!!!! I gently explained that he was too old. With that he turned from me and began to pout. He began to cheer up as the show began and I thought whew, the worst is finally behind us….. Wrong!!!! Things went from bad to worse when the Jedi trainer asked the “young man in the red shirt” to come up. Tim pulled his shirt out, looked down (yes, it was red), then whipped his head to look at me. The look in his eyes said, you see, they are calling me. I once again had to explain that he was not the one being called up and that only young children could go up there. My heart sunk as I watched him view the show. There was one moment when his eyes filled with tears. I gently asked him if he was okay, and he quickly replied that he was fine. When the show ended I began asking about which ride he would like to go on next. Knowing that he was disappointed about not being picked I suggested his favorite, Star Tours. But he wouldn’t answer me and the only time he would look at me was to throw daggers at me. I went from hero to zero…. Realizing that he was giving me the silent treatment I told my husband that he would have to ask the questions until Tim decided to speak to me again. Sure enough, my husband asked him the same question and he got a response. To try to save myself I pointed out the large sign that showed the ages of those who were eligible to be chosen. That helped a little, but not enough to put me back on the hero list.
It was at lunch when I hammered in the final nail in my coffin. Tim saw the Mickey Beignets and wanted to order them for dessert. We told him to wait and see if he was still hungry after eating his meal. We also explained that we could get those later to enjoy while watching the Christmas Parade. By the time we were done eating we were all full. When the waitress came to ask about dessert I quickly replied NO. In my defense, my family never orders dessert with our meal. Disneyland desserts are enjoyed during parades, light shows, fireworks, or just before we leave the parks. It was my natural response. Once again I was the recipient of the death glare.
Tim couldn’t keep up the silent treatment when he was left with me as his brother left the park to retrieve our jackets from the car. At this point all the conversations about what we had done and what we were going to do were replaced with what time was his train leaving the next day. I let it roll and made the best of it.
While we were still alone, Tim began brainstorming about his step dad’s gift. He told me that he thought it would be a great idea for his brother to go in on the gift and pay for half. I told him that he would need to discuss that with his brother. When the time to purchase the pre-packaged fudge came, I was physically and emotionally drained. I parked myself on Main Street and let my husband escort Tim to buy the fudge. Once Tim realized that his brother wasn’t going to chip in, he decided that he didn’t want to spend that much himself. He settled on a lower priced box of chocolates until he spotted a single piece of fudge in the counter display. And yes that is what he bought! So this single piece of fudge is traveling across two states in one of my old Tupperware containers. I have already given my mother in-law a heads up, so that the fudge doesn’t sit in his suitcase until Christmas. 🙂
All in all it was a good trip.. There weren’t any accidents like there was during our very first trip 15 years ago since I made sure to make everyone, including myself go to the restroom often. But there is always a learning curve. Tim’s fear of heights was a new one, one that has gotten worse over the years but wasn’t an issue 15 years ago. Thankfully I remembered that Tim won’t go on rides with anyone but his brother and that no one else is allowed to ride with his brother either. Because of this we were able to save my daughter from receiving the death stare.
We all spent our final day together at home watching movies and eating pizza. We were all exhausted. But overall we had a great time and made a lot of memories. Tim struggled with his camera, but my husband, daughter, and I took many pictures and I promised to put together a scrapbook for him before Christmas.
This past week and past 16 years has given me the utmost respect for parents and family members of a special needs child. Especially mothers or single parents!! We are the ones that orchestrate outings and think about all the little things that can make an outing a disaster. We are the ones that go from hero to zero in a matter of seconds. After sharing my experience with my mother in-law, I feel like I have received an even clearer image of what her life has been like. It is not easy. I know my own physical disabilities added to the difficulty but I also struggled with trips with Tim before them. I do believe the more time spent with a special needs person helps. Learning as much as you can about their likes, dislikes, and quirks help make outings easier. As exhausting as it was I do not regret one minute. The good out weighed the bad and if anything we have all learned a little more of what NOT to do next time.
May the good Lord bless all of these gentle souls and those that love them!
May your days be filled with gentle hugs and pixie dust,
Tagged: California, California Adventure, chronic illness, chronic pain, Disney, Disneyland, down's syndrome, fibromyalgia, health, hero, invisible disabilities, MS, needs, psoriatic arthritis, special, spoonie, vacation, wheelchair, zero