dd doesnt want to use wheelchair

[zumbergc]

Just wanted to mention something. My mom has been doing the chemo thing, and we just went to disney. My mom has lost her butt, no cushion left. So, if your daughter has that problem. Make sure to bring a cushion for her to sit on. The stroller (if you go that route), they are hard plastic, and for the bus seats, and for the rides, most are hard plastic.

Luckily for us, I use a backrest, since i am short for the ecv in arm reach. So my back rest became mom's seat cushion. Its one of those 2 inch deep foam squares you can get at joanne fabrics. That I had covered. I would cover it in one of those pleather fabics because it rains alot, and if you spill, easy clean up.


Connie

 

[liv4pixiedust]

Being 11 totally sucks (can I say that?) in the best of circumstances, and anything that marks you out as 'different' can make it even harder. I would have had a canary if someone had suggested I ride in a stroller at that age FWIW. The rental wheechairs are big and bulky, but some of the ones from off-site locations are better. Then she could glam it up with feather boa trim and other fun stuff to celebrate the fact that she is one tough chickie. She has gone through more physical, psychological, and emotional strain than most people will ever experience. She has been tested by some of the worst stuff life and luck can dish out and is coming out on top - what could be cooler than that?!?

Would temporary tatoos interact with her medications? If not, you can order the transfer paper online and print them right from your computer. Let 'em stare because she's covered in tattoos and traveling in the coolest chair they've ever seen!

The way I see it, having the strength to fight through chemo sets her a notch or two above the rest of us. Revel in it!

 

[sl_underwood]

She thinks she can handle the walking but agreed to tell me if she needs to rest and at that point we can decide if we will get a wheelchair or take a break. I hope she will decide to use one but if not DH or I can easily stop and sit with her or take her back to the resort for a nap. It will mean splitting up and her missing some rides but I have decided to leave that decision up to her. Thank you all for your responses and support.

 

[Hemi-mom]

This is from my son Mick, who is 11 (almost 12). He's practicing writing persuasive essays! I know you have decided what to do and you know what works best for you, but when I talked to Michael he wanted to write.

Hi, I am Michael, in 5th grade and I use a wheelchair at WDW because I have CP and it is hard for me to walk a long time. Most of the time I don't have to use a chair or need walking help. I look normal and you might think it looks weird going around in a wheelchair, but it helps me. You might think it looks silly but at least you are getting around Disney World safely and having a good time. And you can keep up with your family. I would rather be in WDW in my chair than waiting around in my hotel room. People used to stare at me when I wore a brace but I had surgery and don't wear that now. My friends know I have CP and they think I'm cool. I know I am cool and I am good at lots of stuff. Swimming is my favorite thing to do and I can be faster in the water. And so what if people look at you? They are not your friends. I went for a L-O-N-G walk with my mom and brother and I was convinced after that that I needed my chair when I do that. I will tell people if they ask that I am hadicapped so just live with it and be happy you're not. I blend in just by being myself and I like me, just the way I am with all my good and bad qualities. Sometimes I wish I weren't hadicapped so when I feel that way I do something that makes me feel good about myself and I get over it. I know you will have an awesome time whatever you do. Have fun in WDW. I can't wait to go this summer! Mick

 

[Charleyann]

How do I convince my dd that using a wheelchair or stroller as a wheelchair is what she needs to do? She is 11 and though she is healthy enough for a trip and her counts are up, she is still recovering from 2 years of hospital stays, 2 rounds of chemo (last round ended in September) and still taking weekly infusion treatments. She is so worried that someone will say something and that people will think she is a dork if she is in a stroller or that she is a fake if she is in a wheelchair. She really just wants to be like everyone else. She is in that stage where fitting in is important and other peoples questions and comments really hurt her. Any ideas on how to deal with this one? I am afraid she will just keep going and overdo. Also, can I take all of her meds on the airplane with me? And do I need a doc note to do so? Thanks

My 11 year old son has CF (not visible and Juvenile Rheumatoid Arthritis) he too thought people would think he was faking or dork. He has his own wheelchair. No one said anything. I did see the stares sometimes but he didn't notice, just me! She won't either and her body will thank her at the end of the day!

Charleyann

 

[jkCT]

This is from my son Mick, who is 11 (almost 12). He's practicing writing persuasive essays! I know you have decided what to do and you know what works best for you, but when I talked to Michael he wanted to write.

Hi, I am Michael, in 5th grade and I use a wheelchair at WDW because I have CP and it is hard for me to walk a long time. Most of the time I don't have to use a chair or need walking help. I look normal and you might think it looks weird going around in a wheelchair, but it helps me. You might think it looks silly but at least you are getting around Disney World safely and having a good time. And you can keep up with your family. I would rather be in WDW in my chair than waiting around in my hotel room. People used to stare at me when I wore a brace but I had surgery and don't wear that now. My friends know I have CP and they think I'm cool. I know I am cool and I am good at lots of stuff. Swimming is my favorite thing to do and I can be faster in the water. And so what if people look at you? They are not your friends. I went for a L-O-N-G walk with my mom and brother and I was convinced after that that I needed my chair when I do that. I will tell people if they ask that I am hadicapped so just live with it and be happy you're not. I blend in just by being myself and I like me, just the way I am with all my good and bad qualities. Sometimes I wish I weren't hadicapped so when I feel that way I do something that makes me feel good about myself and I get over it. I know you will have an awesome time whatever you do. Have fun in WDW. I can't wait to go this summer! Mick

Wow Michael! You are a great writer! Thank you for giving us your thoughts!

 

[SueM in MN]

She thinks she can handle the walking but agreed to tell me if she needs to rest and at that point we can decide if we will get a wheelchair or take a break. I hope she will decide to use one but if not DH or I can easily stop and sit with her or take her back to the resort for a nap. It will mean splitting up and her missing some rides but I have decided to leave that decision up to her. Thank you all for your responses and support.

If she needs a break and doesn't want to go back to the resort, you could also take her to First Aid. They have cots there, the staff are great, and there are quite a few people who use First Aid for that reason. There is a First Aid station in each park.

Wow Michael! You are a great writer! Thank you for giving us your thoughts!

 

[ireland_nicole]

Great job Michael!
Nicole

 

[OneLittleSpark]

Mick, you put it better than I ever could!

Sl_underwood, just wanted to add that, if she does decide to walk the parks, but gets too worn out to get back to the bus / first aid room, you can ask the nearest CM to get a wheelchair brought to you. They have a few put aside in a number of locations around the park for people who suddenly need them part way through the day. They are adult sized chairs, but she should be OK in one for a short while.

Have a great trip and let us know how it went when you get back! Also, please tell your daughter that it was lovely talking to her and if there's anything more I can do, let me know!

 

[sl_underwood]

Michael- That was beautifully written. I will show it to my dd.

Sue- Thanks for the info- never thought about stopping at First Aid for a break

Spark- Thanks for all your advice. I have a feeling thanks to you, Jess will indeed agree to the chair if she starts to feel she needs it. Its nice to know that a CM will bring her one. I hope she will let me know before it gets to that point, but she can be stubborn.

 

[OneLittleSpark]

I hope she will let me know before it gets to that point, but she can be stubborn.

Can't we all . Sometimes it's hard to admit that you need help, and that you aren't an island, but the truth is that we all need help of some sort now and again, and it actually takes more strength to admit that, than to struggle on alone. She seems like a sensible person to me, so hopefully, if she finds that her medical problems are stopping her from enjoying the holiday to the full, she will let you know. Make sure you pack the phone numbers of local companies that deal in kid-sized chairs, just in case she does decide she needs it. Oh, and pack a few decorations too: just because it's a mobility aid, doesn't mean it needs to be dull!