Disneyland with MS, and a special needs GS.

[rafiki77]

We are going to Disneyland in May with Girl Scouts. My little girl has special needs and will use a special needs stroller. I am in limbo with probable MS. Last time I went to Disneyland was 4 years ago! What should I expect. Any tips I should know. We are staying overnight in the Disneyland Hotel. Thanks in advance.

 

[lanejudy]

Well, I would say first you should think of your needs. Do you have the stamina to walk the park(s) all day? And push stroller? Many with MS prefer to use an ECV to help conserve their energy. Unless you have another person with you to push DD, I don't see how you could use an ECV and push a stroller; but neglecting your needs will not help your DD have a happy trip either. You probably want to plan to take things more slowly than prior trips, allowing for rest breaks and keep hydrated.

As for the stroller, if you plan to use it in lines you will need to stop at Guest Relations and request a GAC. You'll have to explain her NEEDS as to why she uses the stroller, rather than a diagnosis. Make sure you get both a GAC card and the tag to put on the stroller handle - you'll need to show these at each attraction.

Enjoy your vacation!

 

[Sunnywho]

I was prescribed provigil for MS fatigue & for me that helps with energy.
First Aid can provide a place to recover if sudden exhaustion happens if you can't make it back to your hotel.
Ice water is free at all counter services.
I actually feel better from all the walking (maybe because of the exercise). I don't find it necessary to get an ECV but that would be different for everyone.

 

[rafiki77]

Thank you for your replies. As of right now my energy level is really low. By the end of the day walking is very hard. But I would be the only one able to push my little girl in her stroller. I'm hoping by the the time we go in may the doctors will figure everything out and I can enjoy the trip and won't hinder my brownie from having a good time. Any other advice very welcomed.

 

[Piper]

If you are going on a Girl Scout trip, there is a certain ratio of adults to children that is required by each council. Never less than 2 adults per group and most often more. This is so that in an emergency, there is always at least 1 adult to stay with the troop and 1 to get help.

I don't understand how you would be the only adult who could push the stroller. If you are on an ECV, she should be able to see you just fine.

 

[rafiki77]

All the other adults in the group will be pushing their girls in strollers as well.

 

[lanejudy]

Can you practice some day trips at a local park or zoo? Get an idea of how much stamina you have - how long you last before needing a break, how late in the day you can keep going? If you have trouble walking now at the end of a day, it will be even harder when expending additional energy pushing a stroller. I think you are going to have to be well aware of your own limitations, and advise the other chaparones in advance that you may need to split from the group at times for your own periods of rest. By letting them know in advance they can plan how many chaparones will be necessary for the remaining kids.

Alternatively, is there a teenage cousin/friend/babysitter you could ask to join you to be the pusher? That would help preserve your strength for the long day.

I'm surprised that many kids will be in strollers unless maybe this is a Daisy troop, though even those kids are school-age albeit young. I would think most girls of Brownies-age prefer to walk on their own (yes, possibly cranky and tired by end of day but still walking with their peers).

Good luck and enjoy your trip!

 

[lost*in*cyberspace]

I'm surprised that many kids will be in strollers unless maybe this is a Daisy troop, though even those kids are school-age albeit young. I would think most girls of Brownies-age prefer to walk on their own (yes, possibly cranky and tired by end of day but still walking with their peers).

Good luck and enjoy your trip!

I would guess the kids in strollers are younger siblings of the scouts.

 

[Sunnywho]

Rest a lot for the week or two before the trip. Sometimes you can save up energy that way.

Eat healthy, exercise daily but not to exhaustion, weight-lift, reduce the stress in your life if you can. Sometimes a blood test is helpful because MS can be associated with lower levels of vitamin d or tsh thyroid hormone which can lower energy.

 

[rafiki77]

My little brownie is in a troop just for girls with special needs. We have all ages and all types of special needs. So the other moms will be pushing their dear daughter. From what I've heard since all our girls will have 1:1 ratio we do not get any other chaperones. At this time I can't walk through a super Walmart. But a couple days ago I was able to walk through our Target. I'm going to try to rest when the girls need their breaks. If A is having a meltdown then I'll try to find a bench nearby to sit down on.

 

[lanejudy]

My little brownie is in a troop just for girls with special needs. We have all ages and all types of special needs. So the other moms will be pushing their dear daughter. From what I've heard since all our girls will have 1:1 ratio we do not get any other chaperones. At this time I can't walk through a super Walmart. But a couple days ago I was able to walk through our Target. I'm going to try to rest when the girls need their breaks. If A is having a meltdown then I'll try to find a bench nearby to sit down on.

Ah, how nice to have such a troop! Actually, that might work well for you since the group as a whole will likely be somewhat slower-paced than a troop of fully-mobile elementary school kids. Surely each has her own specific needs but likely there will be more breaks and down-time to accommodate those needs, which will help you as well. I'd still advise that you discuss your concerns with the other moms if they aren't already aware of your needs - and even if "aware" they may not recognize how the trip might impact you.

Good luck and enjoy the trip!

 

[rafiki77]

It is really a great troop. All the girls sold enough cookies to go to Dland this year. It is our first time going, so we are unsure of everything. What is the tag That "lanejudy" refers too?

 

[lanejudy]

It is really a great troop. All the girls sold enough cookies to go to Dland this year. It is our first time going, so we are unsure of everything. What is the tag That "lanejudy" refers too?

If you want to use the special needs stroller (or a regular stroller) IN LINES you will need to stop by Guest Relations and request to use the stroller-as-wheelchair. You will need to explain you DD's needs and not a diagnosis. They will provide a GAC card as well as a tag to physically hang on the stroller. It looks like an airline luggage tag, but you need both the GAC card and the tag on the stroller to be able to use it in lines. Otherwise, the CMs will require the stroller to be parked and walk into lines.

Congrats to the girls and enjoy your trip!

 

[rafiki77]

Thank you. Thank you everyone for all the info.