A small rant on the unfairness of life (disability accommodations related)

[Ravin]

DD has fibromyalgia. They are going with their Girl Scout troop on a cookie-sales-reward trip to Universal Studios in May. The leader is concerned about DD's ability to keep up with the group on what is going to be a long day of fun involving a lot of standing and walking with a packed itinerary. 

We were given 3 options:

1. Reserve and pay for a wheelchair rental for DD. Presumably when necessary her friends or the leaders will push her. 

2. DH or I go along, to stay with DD if (when) she falls behind. This would require buying a ticket, driving out there (no room in the vanpool for an extra person) and finding our own overnight accommodations (no non-Girl Scout add-ons allowed at the camp where they will be staying). We definitely don't have the money for that and I am 100% certain DD doesn't want a parent along.

3. DD not go. The leadership team was clear that this is NOT the option they want to see happen.

As a practical matter, this means finding a way to sell the wheelchair idea to DD. Coming up with $15 is not a problem. But having to tell DD she needs the accommodation really, really sucks. She has opted out of some of the troop's activities (backpacking trips) because she doesn't think she'll be able to keep up, or if she somehow did, she'd be utterly miserable and not enjoy it, and we've made other accommodations (ex: she gets a cot when we go camping; DS and I sleep on mats), but a wheelchair is just...a new and different step. 

She is really looking forward to the Universal Studios trip, though. 

It makes my heart hurt.

Also: you have to be 18 to operate a rental electric scooter at Universal Studios. I question the fairness of that restriction. DD is 15, adult sized. As it is, her only option is a manual chair. A scooter would be an easier sell.

[ktgrok]

there are a lot of medical supply places in the area, can you rent from somewhere else? 

[PeterPan]

How old is this dc? 15? Ugh, too big for a stroller. Well maybe not. I used a medical stroller (easy to rent in Orlando) for my ds 10 this year. We had used one other times but this one was the bomb. You can look at Orlando Medical Rentals, call them, see what they have. I think they have electric chairs too. 

I'm sorry it's hard to fathom telling her to use a chair. On the plus side, soon she'll be 18 and have options like scooters. It's not that long. I've taken multiple people now to Disney on wheels, and they treat you GREAT. I'm sure Universal will be equally as good. Have you been to the parks? SO many people are going to be on wheels in some fashion, it's really just a nothing. Let it be the nothing it can be. The parks are huge and lots of people use wheels. Wheels come in all kinds, and if these people are willing to push her in the hot hot sun, they're quite the friends. I'd want motorized if I could, lol. 

One person I took to the parks on wheels was like oh no, I'll use it for long distances and park and walk otherwise. It was actually a huge mistake. Just the incidental walking is SO MUCH that the person wears out. If she can use her wheels in the lines, encourage her to. She'll enjoy the trip better and last longer.

Here, I've used these people multiple time and always been fine https://orlandomedicalrentals.pointofrentalcloud.com/portal/

[PeterPan]

Here, this one goes up to 200 pounds. It has a sunshade, adjusts, etc. Disney is cracking down on sizes of things, sigh, so the model we used no longer is allowed. https://orlandomedicalrentals.pointofrentalcloud.com/portal/item/Adaptive Star Lassen Pushchair up to 200 lbs.- 18" Wide/481690

This one goes to 150 pounds. https://orlandomedicalrentals.pointofrentalcloud.com/portal/item/Mighty Lite Pushchair Stroller up to 150 lbs. - Large/461265  If you measure her you want the height, when seated, from seat to shoulders, seat to top of head. Also the drop from seat to bottom of feet. If you call with measurements, then can steer you to your best option and maybe some options you hadn't thought of. They do this all the time, so they're really the bees knees. And they'll deliver to the hotel and pick up from the bell services, making it no trouble at all.

Edited April 16, 2019 by PeterPan

[sassenach]

One sell might be she'll get to cut in line (at least on some of the rides). Would a leader be willing to rent the electric chair on her behalf?

[PeterPan]

There are other things you can do to make it go better. You can get her a bag to hang on her wheels to hold water bottles, etc. She can decorate her wheels if she wants or buy one of those fab double balloons that light up. Well don't do that if you're going through lines, lol. I'm just saying people do this. If you can't make it better, embrace it, kwim?

[prairiewindmomma]

Universal isn't too bad in a wheelchair. (I had a RA flare on our last trip to FL and ended up in a chair for a couple of days.)

On a happy note, everyone will want to hang with her because she'll get to bypass lines.  There's no way to accommodate a chair in a lot of the lines. That's especially nice with Kong and some of the other rides. OTOH, I would advise that she watch some of the youtube videos of the Harry Potter rides. There are a ton of experiences that happen while waiting in line, and they are cool.

I really, really, really hated being in a chair. I felt super self-conscious. I had to be there, in the chair, but it was hard. I'm sorry for you (to have to tell her) and for her (because 15 is hard enough as it is).

[prairiewindmomma]

Also, I wouldn't plan on her being able to push herself at all during the day.  The manual chairs at Universal and Disney are a ton of work, and presumably, if walking and standing is too much work, propelling oneself with ones arms all day long, around curves and up and down hills should be too. 😉 

[PeterPan]

On the cutting in lines, I don't know. At Disney, some rides were not originally accessible. So like I pushed my friend up, I kid you not, the entirety of the Space Mountain fastpass line in a wheel chair MULTIPLE TIMES!! Huff, huff, do you know how long that is?!?! And I did it on Tower of Terror. And I forget where else. 

Universal is new enough, I'd be shocked if everything wasn't accessible. We tend to get through security quickly when we have wheels. If she actually needs accommodations, then that's a separate issue. 

But just in general, yes if a teen, kid beyond stroller age comes in with a medical device like that, they're going to get treated extra nice. My friend got put to the FRONT of rides, that kind of thing, just sort of magical things they would do.

They're going to ask her if she wants to stay in her wheels for the line (which I would STRONGLY advice) and then they're going to ask if she can transfer onto the ride or whether she needs to stay in her wheels for the ride. My friend did it both ways, depending on how she was feeling. It's just something she can think through, and she has that choice. Staying in her wheels will make it take longer. Most rides will have been fitted with a system where the cast member takes your wheels at parks them where you get off at the end. So she's STILL going to be walking a lot and using her energy!!! It's just she's spending it on having fun instead of whomping herself trying to walk 10 miles in a day and not being able to move the next.

I hope she has a blast!! 

[PeterPan]

7 minutes ago, prairiewindmomma said:

On a happy note, everyone will want to hang with her because she'll get to bypass lines.  There's no way to accommodate a chair in a lot of the lines.

Are you for real??? At Disney almost ALL rides accommodate wheels. The paths were wide enough to stay on your wheels and they had cast members to park your wheels, move them by elevator to the end zone. It was totally slick. Well that's disgusting if Universal, being so new, hasn't built that in. What a fiasco.

Well haha, clearly I'm taking my wheeled friend to Universal next.   

Edited April 16, 2019 by PeterPan

[itsheresomewhere]

Try apple scooter rental and see what they say.  We rent from them and I think they had an option for a scooter rental for a teen.  They drop it off at the hotel and you pick it up.  

PM if you need any help as I can ask on a few places for you. 

[prairiewindmomma]

It appears I was mistaken. While you *can* bypass lines, if you are in a manual chair, you can go through them. I posted a link to the disability accommodations guide upthread.

(I just wouldn't want to try to push a chair through Kong or Spiderman in particular.)

Edited April 16, 2019 by prairiewindmomma

[prairiewindmomma]

46 minutes ago, PeterPan said:

 

Edited April 16, 2019 by prairiewindmomma

[Jann in TX]

My dd has RND (a neurovascular pain disorder that can make moving difficult/painful at times) and went on a band trip to Disney 2 years ago.  While she didn't want accommodations, she really was not able to keep up and some of the girls in her group began to resent her (set groups had to stay together)-- this is when a leader jumped in and told dd it was time to try a wheelchair. (i had a Dr note signed and had given the leaders $$ just in case). 

DD said the chair "saved Disney".  She was able to have her place in line held (and a friend's too) while she waited or wheeled around until the appointed time (much more comfortable for her).  She also received special attention from the characters... 

I must add that here was one time when she was dropped off with a leader's group for a few hours- but she ended up having a blast with the adults! 

 

[Pen]

I’m sorry.  😞

But other than maybe an outside motorized scooter option, #1 clearly seems like best choice.  She might be able to lean on it and push from behind sometimes.  I doubt if not used to it she’ll be able to push herself well while in it.  Takes a lot of arm work.  But being able to sit nearly anywhere could be a big help.

[ktgrok]

Keep in mind if it's a matter of keeping up, she can use the wheel chair between rides, then park it and walk/stand during the lines, if she's up to it. 

[Junie]

This is so hard.  I have had RA for 12 years and I now have to make accommodations daily.  😞  I don't use a wheelchair, but I know I would have to for an amusement park or a trip to DC or whatever.  I hope that your daughter decides to go with the accommodations and that she has a blast!!

 

Dear Ravin's DD,

Please do not let your illness rob one more thing from you.  If you want to go, go!  If you need accommodations, use them.  You cannot control your physical disability, but you can control your attitude.  Sometimes the mental part of a disability is harder to manage than the physical aspect.  Be strong, sweetie.  Learn your physical limitations and let your mental strength make up the difference.

Love,

Aunt Junie

[Ravin]

3 hours ago, Ktgrok said:

there are a lot of medical supply places in the area, can you rent from somewhere else? 

 

The cost would be significant. One place I checked delivers to your hotel or whatever, and usually require a minimum 2 day rental, for over $120. I also doubt the troop, which is vanpooling in several large vehicles with no extra room and on a very tight itinerary, wouldn't be able to go pick one up from anywhere, or transport it from the camp to the park and back if I arrange delivery there. Pushing DD around would be less hassle for them.

[Ravin]

2 hours ago, sassenach said:

One sell might be she'll get to cut in line (at least on some of the rides). Would a leader be willing to rent the electric chair on her behalf?

 

The rules state that the "operator" has to be 18. I will probably call them to double check on that. If I can get an exception with a doctor's note or something, I will.

[Ravin]

2 hours ago, prairiewindmomma said:

Also, I wouldn't plan on her being able to push herself at all during the day.  The manual chairs at Universal and Disney are a ton of work, and presumably, if walking and standing is too much work, propelling oneself with ones arms all day long, around curves and up and down hills should be too. 😉 

 

The idea would be they would push her.

Also, many folks here have given information that would be very useful in Florida. I wasn't specific in my original post--they're going to Universal Studios Hollywood--much closer to home (which is AZ, I just realized it's not in my profile)!

Edited April 16, 2019 by Ravin

[Ravin]

50 minutes ago, Arctic Mama said:

Why would she be mad about the chair rental?  She has a condition that needs some accommodation, it’s not a stigma?  Am I missing something?  Is it that she feels singled out or a burden?

 

Yes, I think it is likely that my teenager who wants to go do the fun stuff with her friends will feel singled out because of the chair. I also think that in the long run, she will feel special and included by the effort they will likely put in to keeping her with them in the chair...but that won't help much with that initial conversation.

[itsheresomewhere]

Odd thought-  it she doesn’t want the wheelchair would she use the cane/chair for waiting in the line.  It is small and she could carry it and when waiting it opens into a stool.   

[EmseB]

I think that among high schoolers, having a person in a wheelchair among the group at an amusement park is considered kind of awesome. You take turns pushing, or maybe even using the chair if the person doesn't need it, you get to cut to the front of the line...I mean, it's not fun to have fibromyalgia, but this is a scenario where the wheelchair isn't a burden.

Edited April 16, 2019 by EmseB

[Ravin]

2 minutes ago, itsheresomewhere said:

Odd thought-  it she doesn’t want the wheelchair would she use the cane/chair for waiting in the line.  It is small and she could carry it and when waiting it opens into a stool.   

 

I would not want to count on her being coordinated and calm enough to not fall on her butt or hip while using such a thing. Also, she's not likely to be a fan of carrying something extra.

[sassenach]

11 minutes ago, Ravin said:

 

The rules state that the "operator" has to be 18. I will probably call them to double check on that. If I can get an exception with a doctor's note or something, I will.

 

Are you guys super rule followers? Personally, I'm a rule interpreter...

[Ravin]

1 minute ago, sassenach said:

Are you guys super rule followers? Personally, I'm a rule interpreter...

 

Me too, but I'm not comfortable asking the troop leader to take that stance.

[KidsHappen]

I also have a fairly severe case of fibromyalgia. I did Universal in a wheelchair and Disney on an electric scooter. I much preferred the scooter so I would angle for that if possible. Both places were super accommodating and helpful so that was great.  Me and my group were able to cut lines at Universal on the rides that the lines did not accommodate a wheel chair and basically operate as if we had a fast pass at Disney. The positive take away was that these crutches allowed me to do something that I otherwise would not have been able to do. Of course I am old so it wasn't as big of a hit to my ego but I feel for her.  

[KungFuPanda]

Jazzy has an electric scooter that looks more like a power wheelchair and comes apart for easier transport.  It looks like the seat of a car with a joystick.  The park may take issue with kids on scooters, but nobody is going to challenge a power chair. This might make your daughter happier and you may be able to find one locally to rent or even borrow from your hospital's loan closet.  I know our local MDA has a lending closet.  It comes apart for easier transport too.  I absolutely get the mental hurdles you do when deciding to use a wheelchair for the first time.  The reality, however, of having the chair to use is absolutely freeing for the kid who can FINALLY move at the pace of the rest of the world.  Also, she might be the hero of the group if they get to go to the front of the lines.

[Pen]

I think you should not say anything about possible line cutting or other positives in case that doesn’t happen.

a manual wheelchair should be fine so long as others help push.  I’d make sure the leaders will help see to that

A lot of power scooters won’t go as fast as kids can go and might cause more issues of being left behind than a manual chair pushed by kids 

the power scooters may be being saved preferentially for older disabled people where no one in the person ‘s group is fit enough to push a manual chair 

[SKL]

When I was about that age, I rented a wheelchair at an amusement park because I had back problems that were bothered by too much standing.  I didn't technically need this; I thought it would be fun to go around in a wheelchair.  And it was.  It didn't stop me from doing anything I wanted; I got to sit in the wheelchair while waiting in extra long lines for the rides, but I still got to go on the rides.  Win win!  When I didn't want to sit, I could push the chair and carry everyone's junk on it.

I would try to sell it to her as a fun perq.  She can either push it or sit in it as she chooses throughout the day.  Her friends will be jealous.  😛

[NorthwestMom]

Hmmm, I might call the local Girl Scout chapter over this. You should be able to join Girl Scouts relatively cheaply (compered to hotel costs) and add in to wherever they are staying (your husband too. Men can be members of Girl Scouts).  Their van pool is inadequate if there's not enough room for  assistants for a child who requires assistance. That's their problem. This is not inclusive of people with disabilities and I think it violates their guidelines. 

A wheelchair at Universal may be necessary but I do think it will help her get around and will facilitate getting extra help from the crew, which is nice. 

Good luck!

 

[Ravin]

34 minutes ago, NorthwestMom said:

Hmmm, I might call the local Girl Scout chapter over this. You should be able to join Girl Scouts relatively cheaply (compered to hotel costs) and add in to wherever they are staying (your husband too. Men can be members of Girl Scouts).  Their van pool is inadequate if there's not enough room for  assistants for a child who requires assistance. That's their problem. This is not inclusive of people with disabilities and I think it violates their guidelines. 

A wheelchair at Universal may be necessary but I do think it will help her get around and will facilitate getting extra help from the crew, which is nice. 

Good luck!

 

 

NorthwestMom,

If we were considering one of us going along (realistically, it would be me), I might check on some of that, but my 15 year old 100% is not going to want me along on this trip. It's her thing, to do with her troop and friends and I would be a drag. She's not going to want to fall behind the group with me. The wheelchair is the best option, it will ensure she is included, and I am confident the troop leaders and girls will help her with it.  

I do think I'm going to go ahead and register myself along with DD next year, so that if another activity she would benefit from my help and want me along, it's already in place. I'm sure the troop can always use more background-checked chaperones as well. I can't volunteer on a regular basis, as I'm at work when the regular troop meetings happen, but I can certainly help with more of the weekend stuff.

Edited April 17, 2019 by Ravin

[TravelingChris]

22 hours ago, prairiewindmomma said:

Universal isn't too bad in a wheelchair. (I had a RA flare on our last trip to FL and ended up in a chair for a couple of days.)

On a happy note, everyone will want to hang with her because she'll get to bypass lines.  There's no way to accommodate a chair in a lot of the lines. That's especially nice with Kong and some of the other rides. OTOH, I would advise that she watch some of the youtube videos of the Harry Potter rides. There are a ton of experiences that happen while waiting in line, and they are cool.

I really, really, really hated being in a chair. I felt super self-conscious. I had to be there, in the chair, but it was hard. I'm sorry for you (to have to tell her) and for her (because 15 is hard enough as it is).

1

Hi Prairiewindmomma,  it is old hat w/me by now---and actually my RA rmore often it was my lungs (pneumonia recoveries, partially collapsed lung, bad asthma day)  and other times it was an injuries, nerve issues in my feet, 

[kbutton]

19 hours ago, Ravin said:

The rules state that the "operator" has to be 18. I will probably call them to double check on that. If I can get an exception with a doctor's note or something, I will.

I hope this works out for her, though I agree that it might be slower than being pushed.

I have a kiddo with a condition that might make these things a part of his future, and I am not looking forward to that conversation someday either. I am so sorry you are having to work through this.

[Matryoshka]

We went to Universal in Florida a few years ago when one of my dds was about your dd's age.  Dd insisted she needed a wheelchair to get around - she also has chronic pain and fatigue.  They had wheelchairs there to rent for the day.  My other dd and took turns pushing her.    We got priority access to many rides.  The workers would take the wheelchair at the entrance to the ride and return it as you got off.  It was pretty seamless.  There was no problem at all with accessibility to any of the rides we went on.

They had scooters too, but dd thought of them as something that old people used and wanted nothing to do with them - and they were way more expensive to rent.  They had a big rental place for these, right along with stroller, at the entrance to the park.

Is the one in FL or CA?  

Edited April 17, 2019 by Matryoshka

[katilac]

 

On 4/16/2019 at 5:14 PM, Arctic Mama said:

Why would she be mad about the chair rental?  She has a condition that needs some accommodation, it’s not a stigma?  Am I missing something?   

 

I believe you are missing the fact that she is a teenager, an age group that is often mortified at the idea of standing out from their peers. 

[katilac]

30 minutes ago, Arctic Mama said:

Eh, everyone stands out for some reason.  Having a wheelchair is pretty advantageous at a theme park.  I’m obviously super anti-stigma on the concept in general, though, and was a very non-conformist teen, too.  

 

I  mean, yay for nonconformism, sure, but I don't think it's actually puzzling that there are teenagers who would be reluctant to try using a wheelchair on an outing with friends. I can recognize that reality while still opposing any stigma attached to using a wheelchair or otherwise standing out. 

To me, being surprised that  a teenager might be upset at standing out in a group of friends is like being surprised that a toddler might be upset because they have to use the red cup instead of the blue cup. It may not make any sense, but it's certainly not surprising. 

[BlsdMama]

Have you called Iniversal Studios to see if any exception can be made and how? I’d speak with a manager of some sort personally. 

I understand what you’re saying. Transitioning to needing accommodations sometimes is really emotionally hard. Physically hard is easier and it makes you feel dependent on others. I bawled at the DMV when I got disability plates. 

However, I suspect she has to be at least a little worried about flares or slowing everyone down. I’m always aware people have to wait on me - I can’t help but think that while it’s a bitter pill to swallow there might be some relief felt. And, as a teen, she also has the “out” of, “They insisted I use this stupid thing.”

 

I'm so sorry she has to use accommodations as a teen. That’s a rough go. 😞

[BlsdMama]

On 4/16/2019 at 5:14 PM, Arctic Mama said:

Why would she be mad about the chair rental?  She has a condition that needs some accommodation, it’s not a stigma?  Am I missing something?  Is it that she feels singled out or a burden?

You’re missing it. 

 

Mad because it sucks to have to use it. 

Mad because it symbolizes a loss of independence. 

Mad because it’s manual and someone will have to push it.

Mad because it is a reminder your body betrayed you.

Mad because it’s one more thing you have to bend to that others don’t.

Mad.  Bitter. Frustrated.

Disability is so hard when ability is something you’ve known and independence is something you prize.

 

 

[Teaching3bears]

Would it help if you had a couple of her friends from the group with you when you when you were discussing this with her? That way they could show her that she would be accepted and included and it would feel to her like it was something they were doing together. Maybe the scout leaders could talk to the girls beforehand to explain how your daughter needed the wheelchair but does not want to feel left out or a burden. Not in a way of behind her back but rather in a way to encourage their kindness and sensitize them to her situation. Also, maybe you could arrange for them to go out for a treat with your daughter after the conversation. This might help them bond. I don't know if she is close friends with the girls in the group or just acquaintances but maybe something good can come of this.

[Pen]

5 hours ago, Teaching3bears said:

Would it help if you had a couple of her friends from the group with you when you when you were discussing this with her? That way they could show her that she would be accepted and included and it would feel to her like it was something they were doing together. Maybe the scout leaders could talk to the girls beforehand to explain how your daughter needed the wheelchair but does not want to feel left out or a burden. Not in a way of behind her back but rather in a way to encourage their kindness and sensitize them to her situation. Also, maybe you could arrange for them to go out for a treat with your daughter after the conversation. This might help them bond. I don't know if she is close friends with the girls in the group or just acquaintances but maybe something good can come of this.

 

That’s a good idea if it could be done.  

 

I tend to think wheelchair would be less isolating than scooter (also less expensive) because of it requiring pushing help.  

Alas, this is probably easier when it’s the popular high school star quarter back who had a mild injury (will recover fully) and needs the help such that the helpers basque in reflected glory

[Ravin]

On 4/18/2019 at 4:37 AM, Arctic Mama said:

 The OP clarified up thread days ago and I was fine with her explanation of her DD’s feelings about the situation, for what it’s worth.  Katilac swooped in and quoted me recently but it’s not like I was disagreeing with the sentiment of the OP - just not really understanding it because it isn’t how I relate to accommodations and mobility aides either when I was using them OR for my loved one who doesn’t have a choice in the matter (and that’s the crux of it - hearing how unfair or upsetting it is when I’m just personally thrilled my kiddo is actually kind of able to use a manual wheelchair and that was a massive achievement is grating and painful, as a mom.  We just spent yesterday afternoon cheering on this very thing). Honestly, the frustration and stigma discussion hurts my heart for him, because that’s a school of thought on the topic I never want him associating with his own needs.  But that’s another discussion entirely.

But thanks for the pile on and making me feel badly about my own child who doesn’t have a choice about needing wheelchair accommodation - I needed that bit of positive thinking bruised up and wrestled back into the mire of “life sucks and this is hard and how dare you not see it this way because you don’t want your son hating himself and his life”.  

 

Arctic mom: First, I wouldn't bash you for being in a different head space on this topic. I'm personally glad there are options that make it possible for DD to go, and not have to sit it out the way she did the troop's backpacking trips. But these feelings are there and I needed to work through them.

Second: you misgendered me. That should read "his explanation of his DD's feelings about the situation.

[Ravin]

Well, the conversation went much better than I feared it would. At least initially and to me, DD wasn't bothered by the idea at all. She agreed that it was a good idea. She was determined to go on the trip regardless but had been worried about keeping up, and now she knows they have her back.

[Pen]

32 minutes ago, Ravin said:

Well, the conversation went much better than I feared it would. At least initially and to me, DD wasn't bothered by the idea at all. She agreed that it was a good idea. She was determined to go on the trip regardless but had been worried about keeping up, and now she knows they have her back.

 

Excellent! I hope she has a wonderful trip. 

[MaBelle]

That's great.  She'll have a blast.  Next to being pregnant at Disney a wheelchair is the best.  (I did both at the same time)

[katilac]

1 hour ago, Eliana said:

 

...but I am also coming to the certainty, that it is okay that I am grieving what I have lost.  i 

 

Yes. 

A long time ago, I read an article about hearing loss in children. The mom who wrote it started crying when she was with another mom (mentor) whose child had more extensive hearing loss, this made her feel guilty and she said something to that effect. The other mom told her it was not a contest and that everyone's grief was legitimate. I mean, she said it way better than that, lol, it really had a big effect on me and I wish I could recall her exact words. But basically, yes, it's okay to grieve what you have lost, whatever that may be. 

[ktgrok]

9 hours ago, MaBelle said:

That's great.  She'll have a blast.  Next to being pregnant at Disney a wheelchair is the best.  (I did both at the same time)

As someone who has been pregnant at multiple theme parks, let me assure you, that the wheelchair made it the best, lol. No wheelchair plus pregnant equals sore back, sore feet, and constant braxton hicks from overexertion. 

But I'm also prone to braxton hicks more than most, so maybe that's just me.