hEDS at Disneyland and Aulani

[anricat]

We have a trip to Disneyland and then Aulani coming up soon. My 15 year old daughter is recently diagnosed with hEDS (about a year ago at age 14) that seems to be getting worse and worse. She used to be a WDW pro walking huge numbers of miles every day of our trip, but it's like puberty hit, the EDS came on and she has a completely different body now and I don't know how to plan for anything. The other day she was working as a stagehand for a theatre performance and she was on her feet for three hours and was just a wreck afterward. After I picked her up I took her shopping to her favorite store and she ended up having to sit down. Ultimately, we cut our shopping trip short. She was hurting for the rest of the day and into the next.

So I suggested maybe a wheelchair at DL, but I can tell she is hesitant. We have a friend whose child has EDS and sometimes uses a wheelchair and we've heard stories about how they appear able-bodied by getting out of the chair and have gotten weird looks and judgmental comments. I just don't want her to deal with that. At the same time, I'm really concerned that while she may tough it out the first day, the next day she will be in a ton of pain.

After we leave DL we head to Aulani for 5 days. I had planned all these activities like I normally would (we are generally an active family). Diamondhead! Pearl Harbor! Hiking! Museums! But again, I'm second guessing what we can and can't do.

I don't know what my question is. I just feel like I'm flailing around here and just want to support her best I can.

 

[greenefamily]

We have a trip to Disneyland and then Aulani coming up soon. My 15 year old daughter is recently diagnosed with hEDS (about a year ago at age 14) that seems to be getting worse and worse. She used to be a WDW pro walking huge numbers of miles every day of our trip, but it's like puberty hit, the EDS came on and she has a completely different body now and I don't know how to plan for anything. The other day she was working as a stagehand for a theatre performance and she was on her feet for three hours and was just a wreck afterward. After I picked her up I took her shopping to her favorite store and she ended up having to sit down. Ultimately, we cut our shopping trip short. She was hurting for the rest of the day and into the next.

So I suggested maybe a wheelchair at DL, but I can tell she is hesitant. We have a friend whose child has EDS and sometimes uses a wheelchair and we've heard stories about how they appear able-bodied by getting out of the chair and have gotten weird looks and judgmental comments. I just don't want her to deal with that. At the same time, I'm really concerned that while she may tough it out the first day, the next day she will be in a ton of pain.

After we leave DL we head to Aulani for 5 days. I had planned all these activities like I normally would (we are generally an active family). Diamondhead! Pearl Harbor! Hiking! Museums! But again, I'm second guessing what we can and can't do.

I don't know what my question is. I just feel like I'm flailing around here and just want to support her best I can.

I am so sorry your daughter is going through this. My 19 year old daughter was also recently diagnosed with hEDS, Hyper POTS, and several other issues after a few years of dealing with symptoms.

We have also been huge Disney goers and my daughter could walk my legs off. The last couple of visits she had to use a wheelchair due to increased symptoms. She has always said people at Disney World were kind to her and smiling so she didn’t feel bad using a wheelchair there. It’s when she has to use it close to home that she has more issues with looks.

My advice based off of experience is to get a wheelchair if it will help your daughter enjoy her vacation. I know it’s hard, but don’t worry about what others will think. She knows her body and what she needs.

As far as Aulani goes, you may just have to take it one day at a time. She could use a wheelchair for things like Pearl Harbor and museums, but Diamondhead may be too much for her. We made that trip several years ago and did all of those things. I know my daughter would not be able to do Diamondhead now.

I know for us vacations look a little different now, but we just try to enjoy the time we have as a family regardless of what we are doing. We are heading to Disney World soon and will take one day at a time working within my daughters limits, and she will be using a wheelchair at the parks.

I hope you have a wonderful trip!

 

[Becca43]

We have a trip to Disneyland and then Aulani coming up soon. My 15 year old daughter is recently diagnosed with hEDS (about a year ago at age 14) that seems to be getting worse and worse. She used to be a WDW pro walking huge numbers of miles every day of our trip, but it's like puberty hit, the EDS came on and she has a completely different body now and I don't know how to plan for anything. The other day she was working as a stagehand for a theatre performance and she was on her feet for three hours and was just a wreck afterward. After I picked her up I took her shopping to her favorite store and she ended up having to sit down. Ultimately, we cut our shopping trip short. She was hurting for the rest of the day and into the next.

So I suggested maybe a wheelchair at DL, but I can tell she is hesitant. We have a friend whose child has EDS and sometimes uses a wheelchair and we've heard stories about how they appear able-bodied by getting out of the chair and have gotten weird looks and judgmental comments. I just don't want her to deal with that. At the same time, I'm really concerned that while she may tough it out the first day, the next day she will be in a ton of pain.

After we leave DL we head to Aulani for 5 days. I had planned all these activities like I normally would (we are generally an active family). Diamondhead! Pearl Harbor! Hiking! Museums! But again, I'm second guessing what we can and can't do.

I don't know what my question is. I just feel like I'm flailing around here and just want to support her best I can.

First, I just want to applaud you for being so supportive of your daughter and doing what you can to make your vacation accessible for her! I’m in my late 20s now and have been diagnosed with POTS and am in the process of being evaluated for EDS - but I first developed symptoms around puberty (similar to your daughter) and did not have the same level of support in my family at all and have been trying to untangle lots of these kinds of things as a young adult as a result. So before sharing more practical thoughts, I just wanted to say kudos and that although you may feel like you’re flailing, as you put it, it’s also super heartwarming for someone like me to see a great parent like you taking your daughter’s symptoms seriously and being so kind and thoughtful about it. So I promise you’re already doing better than you think!

More practically, I would say that your daughter should use whatever mobility aids or accommodations will be helpful to her and make her vacation the most enjoyable. I took a solo trip to WDW in January and used a rollator (walker with four wheels and a seat) for the first time there, and the difference it made for me was HUGE! Just being able to sit whenever I needed and not carry all of my things on my body but put them in the basket saved me so much energy and I could do so much more! I was initially worried about what people would think or say as I am also young and appear able-bodied, but everyone was great. Once or twice I overheard a young kid asking their parents why I used a device to help me walk, but that was it and they were genuine questions that were not mean in any way. Just curious.

Cast members and fellow park-goers alike were all very respectful and accommodating. I agree with what greenefamily said above - I’ve encountered some small issues using mobility aids close to home but Disney tends to be a great, safe, kind place for it. Keep in mind there are also lots of other folks who are using aids, like scooters or wheelchairs, there who don’t use them in their day-to-day lives but need them at the parks because of the amount of walking involved. So while most won’t be your daughter’s age, perhaps, there will be lots of folks in similar circumstances, or with family members who are, and I think that also helps give many a little perspective to approach everyone with more kindness too.

For me, it also helped to see other young people like me out in the world using mobility aids to help me feel more comfortable, so if you or your daughter are on social media, you could also search hashtags like #BabesWithMobilityAids on Instagram, for example, to see some posts from young women and feminine-presenting folks who use mobility aids of all kinds! Many also use aids because of EDS, dysautonomia, and other related diagnoses too.

I’ve never been to Aulani, so I can’t comment on specifics there. For me, I’d generally say pacing is helpful while on a trip and also having some flexibility in my schedule so I can make decisions based on what I feel up to that day. Is your daughter sensitive/intolerant to the heat at all? Aside from standing, the heat is another big factor that gets me while in warm vacation spots, but I also know there is some variability in symptoms when it comes to EDS and related diagnoses, so she may have a different experience than me. But happy to share thoughts around navigating the heat if it would be helpful!

Not sure if this is what you were looking for, but I hope it’s at least somewhat helpful to you - also feel free to ask questions. I can only speak from my own experience but I’m pretty open and am always happy to help others going through a similar experience when I can mostly, I just hope that you and your daughter have a fantastic trip to DL and Aulani, even if it looks a little different than some of your trips in the past!!!

 

[elvispursley]

We have a trip to Disneyland and then Aulani coming up soon. My 15 year old daughter is recently diagnosed with hEDS (about a year ago at age 14) that seems to be getting worse and worse. She used to be a WDW pro walking huge numbers of miles every day of our trip, but it's like puberty hit, the EDS came on and she has a completely different body now and I don't know how to plan for anything. The other day she was working as a stagehand for a theatre performance and she was on her feet for three hours and was just a wreck afterward. After I picked her up I took her shopping to her favorite store and she ended up having to sit down. Ultimately, we cut our shopping trip short. She was hurting for the rest of the day and into the next.

So I suggested maybe a wheelchair at DL, but I can tell she is hesitant. We have a friend whose child has EDS and sometimes uses a wheelchair and we've heard stories about how they appear able-bodied by getting out of the chair and have gotten weird looks and judgmental comments. I just don't want her to deal with that. At the same time, I'm really concerned that while she may tough it out the first day, the next day she will be in a ton of pain.

After we leave DL we head to Aulani for 5 days. I had planned all these activities like I normally would (we are generally an active family). Diamondhead! Pearl Harbor! Hiking! Museums! But again, I'm second guessing what we can and can't do.

I don't know what my question is. I just feel like I'm flailing around here and just want to support her best I can.

Definitely encourage her to use a WC at DL. She can always decide to rent one later if needed or use for a place to rest while in line.

As for Aulani, I live about 10 minutes from the resort. You should be fine as far accessibility at Aulani. There are paved pathways all around the resort area of Ko Olina. Not sure how your DD endurance is but it is a bit of an incline if you decide to visit any of the restaurants across the street from Aulani to get back up to the hotel entrance from the street. As for the rest of Oahu, the island is quite accessible. I don't know if your family has ever hiked Diamond Head, but it is a strenuous climb. As for the other activities and sites planned, they shouldn't be an issue, especially if using a WC. And if you go to the Aloha Stadium swap meet, be prepared for a LOT of walking. If you have any questions about your Hawiaii trip, PM me and I'd be happy to help!