Good Morning/Evening...depending upon your local!
My basic introduction is that I am a mother of 4 children, one whom has FAE (adopted from Russia in 1999 at the age of 8), ages 14 (my oldest and "Special Needs" child), 10, 9, and 3 years. I have a degree in Special Education from the University of Georgia and taught in the Severe/Profound ID (Intellectual Disabilities) area for several years before I became full-time mother. My husband works full-time in Iraq for Haliburton. I homeschool our children and head the Special Needs Ministry at our church part-time. We have a busy and active life....but it includes Disney on a regular schedule! We are AP holders, DVC members...et al...... Enough on the personal introductions!!!!
On to the real reason for posting!
We have a young woman in our neighborhood who has Osteo Genisis Imperfecta (sp?), aka Brittle Bone Disease. Now, Zoa does not have a severe case, but she has it. In addition, Zoa has severe congenital birth defects which have left her legs in a crossed fetal position, her right arm completely turned backwards, facial distortion, small size (think 2-year-old size), and wheelchair bound. Zoa gets along beautifully in her power chair and is a neighborhood fixture since her family moved in last year.
Zoa's family is very inactive in our social gatherings and do not communicate well. Unfortunately, they do not take an active role in Zoa's life and she is often left alone to "roam" the neighborhood since at 23 she has no job. Zoa and Grace (my 14-year-old) have become good friends in the past year.
Now, awhile back Zoa mentioned to a neighbor that she would love to go with us to Disney (a multiple time a year experience for us). So, I invited her to accompany us in September for 2 week trip. Her parents agreed to allow her to go
Now that I'm over my initial shock that they agreed I have to spring into action!
I've spent several days researching accessibility issues (rides and transportation). As a frequrent lurker to the disAbilities board I was already "in the know" about alot of things . My main questions to those who are "more in the know"...are
1) Tell me your personal experiences with a power chair and what rides you can do without transfering. I will print out the list for Zoa so she will have a good idea of what she and Grace can do on "their own" when they venture away from us. I REALLY want them to have some time on "their own"! Grace has FAE but VERY normal, even exceptional, ABS skills (Adaptive Behavior Skills) and social skills. She has been going on rides and adventures in Disney with her siblings for a couple of years. She can travel all of the parks without help and navigate ride lines like a pro!
2) I can transfer Zoa to rides as needed. She's heavy, but manageable. Zoa has great torso strength and can sit unassisted. I've taken her to the movies and mall with Grace several times moving her from the car to her manual chair both ways. What rides that require transfer from chair to ride do you feel are appropriate? She's so psyched for Pirates since I just took her and Grace to see the movie on Wednesday. I feel confident I could brace her for the small drop in Pirate.... Splash Mountain is out!
3) Remember that her stature is small. Do they make any exceptions for size on rides with a height requirement? Most rides are out (Splash, BTMR, SM, EE, etc) However, Mission Space (the non-spinny side) seems okay....if I transfer her. Even Soarin seems safe from my experience.....I've ridden it at WDW and DLCA. What are your experiences?
4) We're staying at the Contemporary and Poly during our trips...both of which are greatly accessible. (I know Zoa will put us over room limit...please, please, please, don't flame me....I just can't afford a second room) I'm buying her ticket and paying for her meals (we're of the Free DDP). Neighbors are chipping in for her spending money and getting us a trailer so that I can take her power chair. What advice can you offer me as to further enhance Zoa's trip? Without bashing, her parents do not take an active role in her life. This will be Zoa's first trip ever to a theme park of any kind, much less a trip to DISNEY Honestly, this is a once in a lifetime trip for her....I want to make it special.......so, any helpful adivce?
5) Zoa has 5 hours a day of nursing services through Medicare. She doesn't need 5 hours (no meds, no special care), but she has them. I can do Zoa's care (bathing and changing diapers) without much effort. Would you recommend trying to get care in WDW through her current service? Part of me says it is a waste, but the other part says it would be a nice break for me. What do you think? (Please don't think I'm complaining about doing her cares! I did invite her to join us!)
My goodness, this has become long! I apologize! So very many things to ask those experts out there
Thank you, in advance, for your advice and help. I do so appreciate your time and effort!
Sincerely,
Jaymie
Mom to the 4 most incredible children in the world!
DD14
DS10 
DD9 DD3
jaymie_g@hotmail.com
My basic introduction is that I am a mother of 4 children, one whom has FAE (adopted from Russia in 1999 at the age of 8), ages 14 (my oldest and "Special Needs" child), 10, 9, and 3 years. I have a degree in Special Education from the University of Georgia and taught in the Severe/Profound ID (Intellectual Disabilities) area for several years before I became full-time mother. My husband works full-time in Iraq for Haliburton. I homeschool our children and head the Special Needs Ministry at our church part-time. We have a busy and active life....but it includes Disney on a regular schedule! We are AP holders, DVC members...et al...... Enough on the personal introductions!!!!
On to the real reason for posting!
We have a young woman in our neighborhood who has Osteo Genisis Imperfecta (sp?), aka Brittle Bone Disease. Now, Zoa does not have a severe case, but she has it. In addition, Zoa has severe congenital birth defects which have left her legs in a crossed fetal position, her right arm completely turned backwards, facial distortion, small size (think 2-year-old size), and wheelchair bound. Zoa gets along beautifully in her power chair and is a neighborhood fixture since her family moved in last year.
Zoa's family is very inactive in our social gatherings and do not communicate well. Unfortunately, they do not take an active role in Zoa's life and she is often left alone to "roam" the neighborhood since at 23 she has no job. Zoa and Grace (my 14-year-old) have become good friends in the past year.
Now, awhile back Zoa mentioned to a neighbor that she would love to go with us to Disney (a multiple time a year experience for us). So, I invited her to accompany us in September for 2 week trip. Her parents agreed to allow her to go
Now that I'm over my initial shock that they agreed I have to spring into action! I've spent several days researching accessibility issues (rides and transportation). As a frequrent lurker to the disAbilities board I was already "in the know" about alot of things
. My main questions to those who are "more in the know"...are 1) Tell me your personal experiences with a power chair and what rides you can do without transfering. I will print out the list for Zoa so she will have a good idea of what she and Grace can do on "their own" when they venture away from us. I REALLY want them to have some time on "their own"! Grace has FAE but VERY normal, even exceptional, ABS skills (Adaptive Behavior Skills) and social skills. She has been going on rides and adventures in Disney with her siblings for a couple of years. She can travel all of the parks without help and navigate ride lines like a pro!
2) I can transfer Zoa to rides as needed. She's heavy, but manageable. Zoa has great torso strength and can sit unassisted. I've taken her to the movies and mall with Grace several times moving her from the car to her manual chair both ways. What rides that require transfer from chair to ride do you feel are appropriate? She's so psyched for Pirates since I just took her and Grace to see the movie on Wednesday. I feel confident I could brace her for the small drop in Pirate.... Splash Mountain is out!
3) Remember that her stature is small. Do they make any exceptions for size on rides with a height requirement? Most rides are out (Splash, BTMR, SM, EE, etc) However, Mission Space (the non-spinny side) seems okay....if I transfer her. Even Soarin seems safe from my experience.....I've ridden it at WDW and DLCA. What are your experiences?
4) We're staying at the Contemporary and Poly during our trips...both of which are greatly accessible. (I know Zoa will put us over room limit...please, please, please, don't flame me....I just can't afford a second room) I'm buying her ticket and paying for her meals (we're of the Free DDP). Neighbors are chipping in for her spending money and getting us a trailer so that I can take her power chair. What advice can you offer me as to further enhance Zoa's trip? Without bashing, her parents do not take an active role in her life. This will be Zoa's first trip ever to a theme park of any kind, much less a trip to DISNEY
Honestly, this is a once in a lifetime trip for her....I want to make it special.......so, any helpful adivce? 5) Zoa has 5 hours a day of nursing services through Medicare. She doesn't need 5 hours (no meds, no special care), but she has them. I can do Zoa's care (bathing and changing diapers) without much effort. Would you recommend trying to get care in WDW through her current service? Part of me says it is a waste, but the other part says it would be a nice break for me. What do you think? (Please don't think I'm complaining about doing her cares! I did invite her to join us!)
My goodness, this has become long! I apologize! So very many things to ask those experts out there
Thank you, in advance, for your advice and help. I do so appreciate your time and effort!
Sincerely,
Jaymie
Mom to the 4 most incredible children in the world!
DD14
DS10 DD9 DD3 jaymie_g@hotmail.com
