Let's help each other learn about disabilities

[heatherj]

This is a great thread! So I thought I'd share our youngest sons info.

Our youngest son (2 yo) was born with a very rare (only one of its kind documented so far) chromosome abnormality. The abmormality affects his #22 chromosome. He has the following characteristics: low muscle tone, can talk, developmental delays, physical delays, has trouble using his fingers properly, hydrocephalus (shunt placed), etc. We are hoping that he will be able to walk within the next two years and is currently working on standing. He has the determination of no one I've ever met - he's truly amazing and is determined to do anything. He loves be with his brothers or anyone else for that matter. He lights up my heart when he smiles and laughs.

Heather

 

[Deweysgirl]

Hi Everyone! This is such a great thread, just the kind of therapy that's good for the soul.

My DD 9 has heel cord contractures and spasticity in both legs. She was a "toe-walker" from the beginning and never diagnosed with a problem until after she turned 3. She has been in PT for 6 years now, 2 surgeries for heel-cord lengthening, two rounds of casting and the greatest help recently has been Botox injections. She wore leg braces- DAFO's (dynamic-ankle-foot-orthotics) from kindergarten through 2nd grade. Now she wears night braces because her orthopedic surgeon feels the social issues of wearing them now at school could be harmful as she gets older. She's making great progress and we're hoping she will be released from PT by the end of the year.

Here is my biggest pet peeve. When I see these discussions on the boards about how parents shouldn't let older children use stollers at WDW. My daughter's feet and legs tire easily and although she can make it through most of the day, we get her and my little DD a stroller in the evening. She feels comfortable riding with her little sister in the stroller and feels a wheelchair would just bring that much more attention to her. It's nobody's business IMHO why a child is in a stroller, no matter the age. To look at my daughter you would never know of her "disability". I wish the people who condemn parents for using strollers for older kids would stop and realize that it's not there problem, so live and let live. Thanks for letting me get that off of my chest! I've never jumped on one of those discussions because I know I would be in "attack" mode! lol!! Anyway, thank you for letting me share. Pixie Dust and Prayers to all of you!!

 

[Anne MN]

I also have an older stroller rider- i posted earlier on this thread about her and her disabilities-

DD has a real hard time walking- she is slower, can't keep up, tires easily and when she is tired, she can fall(bad idea being on lots of blood thinners!)
she is small for her age- she is 9 and weighs 40lbs- is 45 inches tall-
we will have a double jogger when we go- we also have a 3 yr old who is still in the terrible 2's! one of her favorites words is NO- this is said at the top of her lungs cross her arms across her chest nose in the air and the foot stomp- you can get a picture of that! she looks like shirley temple with all the blond curls, but acts like a little devil

 

[Deweysgirl]

Thanks Anne-it's good to know I'm not the only one using a stroller at this point instead of a wheelchair. My DD shares my love for "the mouse" and nothing could stop us from our annual trips! Her birthday is in October and she looooves the MNSSHP! We've been celebrating her birthday at Disney since she's been 1. Even in casts on both legs one year, the CM's and characters were so sweet to her. It's so great that Disney is so accomodating to all of us.

 

[Anne MN]

we are planning on going over christmas- hope everything goes as planned- we should now mid august if we will get to the world this year- we are going this year for her- she chose the world over anyplace we have been or where she has looked at- she loves all things disney!

 

[disfanRN]

HI everyone- it is 4:30 am here and I was up due to some pain and was browsing around to get my mind off it. I have Psoriatic Arthritis, similar to Rheumatoid. As I was saying, I was preoccupied on the pain I am having and scared about our upcoming surprise trip in a few days and how I will get around. However, after reading all these posts I feel truly grateful for my fortune. I have so much respect and compassion for those of you dealing with severe disabilities and those of your precious children. Thankyou for sharing your stories and helping to remind me to put my own situation in perspective. The strength and grace you all show is amazing.

 

[SueM in MN]

Here is my biggest pet peeve. When I see these discussions on the boards about how parents shouldn't let older children use stollers at WDW. My daughter's feet and legs tire easily and although she can make it through most of the day, we get her and my little DD a stroller in the evening. She feels comfortable riding with her little sister in the stroller and feels a wheelchair would just bring that much more attention to her. It's nobody's business IMHO why a child is in a stroller, no matter the age. To look at my daughter you would never know of her "disability". I wish the people who condemn parents for using strollers for older kids would stop and realize that it's not there problem, so live and let live.

For some kids, the most appropriate thing is for them to use a stroller. The only thing I would say is a caution to the adults to pace themselves because pushing an older child in a stroller is going to tire them out. But other than that, as you say, it's not anyone else's concern.
And, even with a wheelchair, there are people who feel they have the right to make a judgement about whether the person using it needs the wheelchair or not. My DD can't stand or walk, but sometimes likes to get out of her wheelchair and sit on a bench, with her legs crossed. When she does that, we have heard people comment that she must be "cheating" because she doesn't need a wheelchair according to them. I'm just glad our insurance company doesn't use that rationale because we are waiting for a replacement for the 4 1/2 year old wheelchair that DD "didn't need" so much that she wore it out.

 

[Talking Hands]

Unfortunately those without disabilities feel they have a right to judge those with disabilities without knowing anything about the person or the extent of the disability. I doubt that they would appreciate being judged if the situation was reversed. Actually even some with disabilities feel they have the right to judge others as to the extent of the disability and whether or not they should be accommodated.

 

[3DisneyNUTS]

Originally posted by Talking Hands
Unfortunately those without disabilities feel they have a right to judge those with disabilities without knowing anything about the person or the extent of the disability. I doubt that they would appreciate being judged if the situation was reversed. Actually even some with disabilities feel they have the right to judge others as to the extent of the disability and whether or not they should be accommodated.

Ain't this the truth. My father is losing use of the left side of his body and he is the complete opposite. He worries so much on how he will be judged that he left WDW early last year only spending 2 1/2 days out of a week trip. It is sad that people have to worry about how they are going to be judged.

 

[3DisneyNUTS]

Ain't this the truth. My father is losing use of the left side of his body and he is the complete opposite. He worries so much on how he will be judged using the power wheelchair that he left WDW early last year only spending 2 1/2 days out of a week trip. It is sad that people have to worry about how they are going to be judged.
Sorry I went to edit and I quoted myself.

 

[NancyDVC]

This is a great thread! Thanks for starting it!
So many of life's challenges are being overcome by the folks on this board!
My Mom was born with one leg shorter than the other and she always had problems walking and being 'clumsy'. In addition to that she is left handed and was made to switch to right handed for eating and writing. (That was in the 1920s and 1930s!) Talk about making life difficult. Her parents were told that she had a 'spastic condition'. Now many years later we have figured out that today she may have been diagnosed as a mild CP. It never stopped her from doing anything (except driving). She wears a small lift on one shoe and probably needs a brace because her ankle on that foot is getting weaker and she has been tripping. Ten years ago she underwent a 4 vessel heart bypass and has a lower endurance so we rent a wheelchair for her at WDW. We will be renting one for our DCL cruise this September too.
My best friend has arthritis in her knees, hips and back. Thanks to ECVs she gets around WDW very well. She does walk but not for long distances.
My uncle has had each of his hips replaced 3 times. That along with a chronic back problem means that he uses an ECV all the time outside. It gives him the freedom he needs to do what he wants to.
Maybe I see things differently because I am a physical therapist but using a cane or a walker or a wheelchair or ECV isn't any different than my wearing glasses. If it makes life easier why worry about what the 'turkeys' out there think! I tell my patients who need to use a device "Paint it purple or some neon color and get going!" (I did have one patient who used to crochet covers for canes and always added a little flower at the top! And they were always in very vibrant colors!)
Anyone who makes a snap judgement about someone with an assistive device has the problem. Not the person who is using it and getting out and about enjoying life!
If someone stares then stare right back! It usually embarresses them enough that they stop staring or maybe even apologize!
Thanks to all of you who have been kind enough to share information about your 'challenges'. I salute each and every one of you!
Nancy

 

[GeekChic]

Wow I almost don't feel like I should even post after reading everyone elses. You are all amazing folks!!!!!!!!

i totally agree jane! i have learned so much reading this thread, you are all incredibly inspiring!

i'm 33, and i have had Multiple Sclerosis and Fibromyalgia since I was 15. I was misdiagnosed for years and finally got the proper MS diagnosis 4 years ago.

MS effects everyone differently, for me since I have had it so long it's pretty intrusive on my daily life. I had to go on disability and have been unable to drive for 4 years due to balance/vertigo issues. I have recurring vision problems including permanent peripheral double vision in both eyes, nystagmus (jerking eye movements) optic neuritis. I also have bad spasticity in my legs, other muscle spasms and pain resulting from them. that on top of the fibro means i am in pain 24/7.

I use a crutch to get around but for WDW a chair is mandatory. I can't drive a scooter anymore (again, the balance issues) so my DH has to push me around he's a good sport about everything, i know living with my illnesses is not easy.

I have asthma on top of it all too and that causes additional problems. I rarely sleep well because of the pain i'm in but i have no right to complain, listening to all that some of you have to deal with I am a very fortunate soul.

This thread is wonderful and i hope others from the forums who are not disabled will read, and learn and perhaps gain new perspective, and gratitude, for their able bodies.

those of us less able...just keep going as best as we can, like the Energizer Bunny! LOL

hugs,
geek

 

[ladydancer]

I am so glad. I just found this board yesterday. I had been inquiring on another board about taking children with autisum to WDW and they directed me here.

After reading all the post here, there are alot of brave and courages people out there.

Until I started driving a handicap van a few years ago to take people to there Dr. Appt., FT. Appt. ect. I didn't know there were so many people out there with disabillities. From birth and from car accidents ect. I hadn't seen them in my everyday life because alot of them just aren't out there in public view. Like myself I'm sure most people just don't know unless they have a friend or family member with a disabillity.

My grandson who is 5 is autistic. I had suspected something was wrong when he was about 18 mos. old. Since I'm a mother of 3 and a grandma of 6, I should know a little something. It wasn't until he was 3 that I could convice his parents to take him to the doctor for an evaluation.

Since starting school about a year and a half ago he has made great strides. He can talk. Limited amount of single words but a few sentences also, although he can't carry on a conversation. He can ask for what he wants. Although we can't always understand him. He can spell and reconize his name. He can say his abc's. Count to 12 and reconize them. When ever he see's a clock he always stops and points at each number and tells me the number. He finally was potty trained earlier this year.

Also I believe he has been helped by playing with his cousins. One who is 1 month younger than him and 1 who is 1 year younger. Just by interacting with them has helped T.J. alot. He has actually learned how to play with others. Which that is unusal for an autisic child.

This fall they are going to mainstream him into a regular classroom. He will start Kindergarten. We had an option of him riding the special needs bus or a regular bus to school this fall. I would perfer the special needs bus as there is an attendant on the bus. Riding a bus without an attendant makes me uneasy because bus drivers can't always see everything that is going on in the back of the bus. Autisic children are very subseptable to being taking advantage of.

Most autisic people don't like to be hugged or touched. Not T.J. he loves giving hugs and kisses. He always says "Love you, Grandma". and "Hey Grandma, what do you think you are doing"? Before I can respond he is off doing something else. I still answer him even though he is walking away. I know deep down inside he hears me.

He just seems to be off in his own world alot of the time. He has the standard "tantrums" that autisic children have too. Mostly out of frustration. Although he seems to have them more when his parents are around than with me. He doesn't have patients. Partly due because he doesn't understand why he needs to wait or why he can't do or have something.

We will be taking T.J. along with his older and younger brothers and a cousin to WDW in Oct. We are considering renting a car to avoid the lines waiting for the buses.

I went with T.J. and his family to the fair last week and we had trouble with him and waiting in lines. Although we went on "special needs day" and the lines were short. Getting him to leave the fair when it was over was an ordeal. His dad had to carry him out kicking and screaming.

My biggest concern is because T.J.'s disabillity is not apparent, people look at him as though he is just a spoiled child throwing himself on the ground and having a tantrum. They don't know he has a mental problem. Also even though he is 5 he looks about 6 or 7. Usually I just let him have his "fit" on the ground and when he is done, continue on if possible. Sometimes however he won't stop and that is when his dad has to pick him up and carry him off. I'm also considering getting a stroller for him if he can fit into it. That way we can just put him in it to move on if he is having a "tantrum".

Most of the time T.J. is very laid back about things. He is not aggresive. Although because he is so big I'm afraid he could accidently hurt his little brother. He tries to be gentle and wants to kiss him and say's "don't cry baby".

Actually he is very good about staying in the back yard when he visit's my house. He has never attemped to go into the front yard. So he does listen to things I tell him.

I'm the only one T.J. will spend the night with. He cries if he is left with anyone else. We climb into bed and I put Dora the Explorer or Blues Clues on the TV for him. Make some popcorn and when the movie is over I turn it off and he rolls over and goes to sleep.

Thanks for reading!

 

[vwater]

Nice to see this Forum here.

I have 2 disabled daughters. Sarah, who is 6 has High Functioning Autism. And Hannah, who is 5 (Saturday) has a form of muscular dystrophy- Spinal Muscular Atrophy. They definitely keep me on my toes, as most of you can imagine. Especially Sarah!! We are going on a Disney Cruise thru Make A Wish on August 7th. The whole family is looking forward to this. I hadn't realized that so many people registered on this board have disabilities. Nice(kinda) to know I'm not alone.

Everyone!!!

Victoria

 

[deedeew80]

Hi everyone! I don't have any dissabilities or no one in my family does (that I'm aware of). But I work in a school with disabled children. It's a small school (Larc School) in South Jersey. The school has children from age 3 to age 21 and also have an adult program for seriously disabled adults. I work in the preschool, the children in my class are ages 3 to 5. I love them all! I enjoy reading everyones post here about all the different dissabilities that I am not aware of. It's very educational to me.

When I'm out in public somewhere & see someone with a disability I look at them & watch them. I don't know why. It's not like I'm staring at them b/c there is something wrong with them. It's just interesting to me I guess to see if I can recognize their disability. Is this wrong of me? I love working with disabled children. They put a smile on my face everyday!

Keep on posting so I can find out some more interesting things!

 

[Schmeck]

I, too, work with special needs children. Right now I'm at the high school level, but my first love is ECE. Hopefully I'll be back there in two years (after my present student graduates)

My youngest daughter was born with a palsy in one eye. Pediatrician didn't diagnose a problem with it until she was two - I was told that I wasn't putting her down correctly when she was an infant, her neck had a 'kink' in it, gave me stretching exercises to use on her neck, etc. Anyways, her eye muscles were getting much worse, and by the time we saw the opthamologist, surgery was needed immediately. Now she's 10, the eye is getting worse, and she'll need surgery again. She can see well enough to read, etc, but it's like she's looking through a pair of binoculars with the eyepieces not set properly. She tilts her head and closes one eye to compensate. Right now she's coping just fine, but I doubt that she'll be able to get her driver's license, and she has a hard time in gym class and art.

Older daughter has a mild level of hypotonia - she can't run, her legs hurt because her feet don't support her properly (she's getting better shoes this year, but she'll hate to wear them, she's 13 ) but she is actually very athletic! Did gymnastics for years, not very graceful looking, but she loved it. Now she ice skates! For some reason, gliding on the ice is easier than walking/running for her. And all the coaching she gets has helped her be more aware of her body position. She even passed a big skating test a few weeks ago!

I know my children's minor disabilities are nothing compared to what some of you live with every day. From reading all of your posts, I've come to admire you all so much!

I've also taken the time to discuss some of the info here with my girls. When we're at WDW, please be assured that we won't mind waiting for a wheelchair to board a bus, and we'll definitely be looking for ways to make it easier for disabled people and their families to enjoy the magic of WDW!

Bless you all,

Schmeck

 

[mamajoan]

Originally posted by GeekChic


those of us less able...just keep going as best as we can, like the Energizer Bunny! LOL

THAT IS A PERFECT DESCRIPTION!!!! Can I use it on a BUMPER STICKER?!!


Joan

 

[eeyore45]

Hi everyone!!

Dewey's girl, it looks like we will be in the land of the mouse at the same time, I promise if i see someone pushing srollers, I wont judge!! Hopefully I've done a job on my dd that she will be accomadating too!!

My ds' and dh are hard of hearing. I cannot tell you how frustrated they get, they dont fit in the deaf world and they dont fit in the hearing world, my ds was accused of "pretending" not to hear!! Unlike glasses, wearing hearing aids amplifies all sounds, and cannot give you sounds you cannot hear. We placed ds in a school that taught total communication, and he had lots of speech, and picked up sign language, I'm a teacher, started substituting, and now 15 years later, I love my job as a substitute at the school that mainstreams special needs kids - I get to substitute for the one on one aid for the autistic kids as well.. the LD teacher wants me to come work for her full time, but my heart loves to substitute for when I'm in a regular class I take every opportunity to educate those kids... In PE class one of the deaf girls could not understand the autistic girls behavior, I was able to sign to her and from that day forward the deaf girl was so willing to reach out to the autistic girl!! I also love to pull in Mattie Stapanek's poetry as fillers to help educate the 'regular' kids!!

I'm glad I found this board and am educated on the GAC as well as the listening devices available - I tend to forget dh cant hear, I always look out for ds (now 18) and he's not going, I actually thought too bad, he would so enjoy it, it took me a day to realize dh needed the closed captioning as well!! And if it hadnt been for a post from Sue I wouldnt have thought to pick up a GAC for dh, because he adapts, and we dont need special treatment, however, if he uses it just once and it enhances his trip, I will forever have a smile on my face!!

Keep the stories coming....

(PS about the post of CF - my best friend in school early70's had CF, and I had no idea what that was, just thought it was bad asthma, and I treated her as such. I'll never forget her indignation upon learning it was a fatal childhood disease!! She died from CF 24 hours after turning 20 in 1978 - it was such a beautiful moment from a beautiful friend. I'm so glad at all the research and progress being made!! It warms my heart to see people in the paper living full lives in thier 40's!!)

 

[Talking Hands]

I get the pretending that I can't hear attitude on occasion. There is even a person here that has accused me a being a faker.
With hearing aids and an enviroment without a lot of background noise I do very well and one to one I do well since I lip read pretty well. Most people on meeting me have no idea I am hard of hearing. I've pretty much learned to cope with the hearing world although I am much more comfortable in the deaf world with others that sign.
I'm fortunate when subbing that the kids relay any intercom messages to me or if I am in a special needs classroom there is an aide to listen. I am also a sign language interpreter. There I am limited to which areas I can work in. My goal is the work in medical and education. Right now I am getting ready to do my internship and get my QAST and then hopefully RID certified.
WDW is so awesome in accommodating people with hearing impairments using different types of accommodation and realizing that just one method doesn't fit all.

 

[mickeymom923]

I found this thread very informative. First I would like to say that not everyone has disabilities that you can see. I have two children that have Congenital Myasthenia. This is a form of MG that affects their nerves and muscle junctions. Without going into it, they get easily fatigued. Basically, on the outside, they look like two normal children. Usually I rent a wheelchair because walking around the park will exhaust them. I do get strange looks and comments because they use a wheelchair. They will walk and as they get exhausted, will take turns using the wheelchair. I also have been diagnosed having post polio syndrome. My doctor has told me years ago that I should not do the park without a wheelchair for myself. I am a single parent so I will do the park and push my children as needed. Again, I get dirty looks when I park in a hp parking space and people have actually told me I can't park there, since I'm not handicapped. I wish people would realize that one doesn't have to be old to have a disability and that not every disability can be seen.