why do people look at me funny....

[bouncycat]

Me and dh have 3 bio kids, I have 2 older ones he's adopted since they were in diapers. We tested our dd as she was really delayed,we suspect that our two sons have it, both sleep with thier eyes opened which could be a sign of facial weekness,they are 7 and 8,

Yep. That's how we know Tyler has it too, the mouth, and the eyes. He also has ADHD, and a mild form of Asbergers, so poor baby has it from all sides! He's a trooper tho, and he knows that if he uses his muscles, the slower he'll lose them. He's been to the dr with me, and they have told me he has it, I believe he was about 6 or 7 when he was diagnosed. I was 26 when the official diagnosis was made, but started showing signs when I was 20. The crazy thing I've seen with my own family, is this type never manifests itself the same way twice, as in none of us with this disease progress the same way. We all have our differences. So, maybe your sons will only be mildly effected. We can hope and pray!! When are ya'll coming to Disney? If it's during the weekend, we can pop over and meet up with you. I've met a few people from the Disboards, and Love all of them!!!!

 

[bouncycat]

We have got looks and comments many times when we have been sent through the FP line but I dont care at all what strangers have to say..the worst park is some of these "strangers" were proudly showing their LGMH on their bags! What a shame....

Yikes. Yea, I used to let it get to me, but ignore it anymore. I really wish sometimes I could swap bodies with people. Do they really think we WANT to be in a chair?? I don't, I'd rather be able bodied and not hurting, but it's not in the stars for me. So, when I go over for an hour or 2, and I can walk, then I smile at people in wheelchairs or ECV's, cause I know how it is, and how people can be. it's rare when I can walk, depends on if I'm having a good body day or not LOL

 

[nyrebecca]

I have to say in all the years we have been going to Disney only one person has made a snarky comment to us while we were waiting in line. Ignoring does wonders I have found.

I like to think that the understandng people outweigh the non understanding. I am still mortified of what happened last year when when we were in the que for Soarin'. For some reason my son out of no where shot his arm out and hit the girl he was standing next to. I would have broke down in tears right then, but the parents and the girl (probably around 8) were totally fine. I kept saying how sorry I was but they seemed to understand that my son honestly did not mean harm.

 

[brat]

DH and I have tough skin most of the time. I am more likely to get upset if I am short sleep of someone makes my kids cry.

I am still upset with a saleslady at a local store from earlier today. After we bought DDs(8 & 8)t-shirts, she told another sales person "kids like should be in a facility somewhere where normal people will not have to see them". I rushed the girls out of there to stop myself from stepping down to her level.I knew the girls wanted the shirts and do not know of another place that sells them.(If I did we would have returned them and bought elsewhere)

After we met up with rest of family I went back to talk with the store manager.He knew I would be back after talking with the sales person who had been told "kids...".He was also upset, he has a SN kid as well.

Saleslady was still rude when store manager and I talked with her.

I am just glad the girls are still at the age when a few Disney stickers makes them so happy that hurt feelings go away.

 

[nyrebecca]

she told another sales person "kids like should be in a facility somewhere where normal people will not have to see them".

I will never understand some people. Ever.

I have to watch myself now that Jared is older to make sure I bite my lip and walk away. I can't teach him to be a kind and gentle soul while at the same time I rip someone a new one verbally if you catch my drift.

In the end, the world is full of people who are nothing but ugly on the inside. I don't wish them harm, or ill will as I know karma is a ____.


So sorry your children had to hear that.

 

[DSquare]

It even comes from ones own family sometimes too. Our son was born with Arthrogryposis and at birth his legs were severaly turned and bent. My great aunt asked if we would ever take him out in public.

 

[cove61]

my wee brother and sister both have down syndrome, so we have had the stare and the pitty comments (which always piss me off)

but i must say when we went to Disney Paris last year with my sis she was desperate to get a cuddle with pluto and after a few attempts (of getting pushed away by adults not kids) she managed to get a hug, pluto even moved folk out of the way so we could get a clear photo, she was delighted. it made her holiday.

i have ms and am going to have to use a scooter while i in florida, lord helps anyone who comments , as they will have my very protective 14 year old son and 13 year old daughter to contend with.

end of day we get idiots all over the world if they stress about folk with disabilities then that their problem and i think in the end it their loss, as i would never put my family back for the world as they have taught me so much and i truly believe they are a gift sent to us.

 

[kinghorse]

I think it all goes back to how people are raised and there are many mean ignorant people out there. I was recently at Sea World with my daughter and I had hurt my knee and even told her I didn't think I could walk too far. I sat while she rode some rides and then we went to a show in a stadium that has the worst seating, not only was there not much of an isleway between the seats but the seats were deep and sat low to ground. I sat down and when one family wanted to get in I stood up to let them by, the pain in my leg was so bad and it was so hard to get up I had to lean on seat in front. Another family came and I asked them if they minded walking around and go in the other end which wasn't that long a walk since I was 5th row, they were fine with that. Then a man sitting in the middle of the row got up and came over and tried physically to push me out of my seat and said I should not be allowed there then he started yelling for no reason, it was horribly emabrrassing, security came and told him he was wrong, my young daughter was upset and what a scene he made for no reason. He finally settled down and after the show I was going to wait till everyone left so I could get out. He promptly came to me instead of going out the other end which was the same amount of distance and made a scene again scaring my daughter, security came and waited while I got up and held him back while escorting me out since I gather they think he was a big problem. Instead of empathy and compassion this man should such a meaness that I was shocked about, he even took pictures of me. We went home very painfully and slowly after that. My knee was fine after a few weeks but I never encountered such an incident and couldn't imagine anyone being so hateful to someone having a problem.

 

[dntd]

We get odd comments all the time.I have been rudely ask"What's wrong with her downsyndrom" it was the tone not the question. Last holloween, my dd just got out of a 6 week flat on the back 100% hospital stay for a broken femer, she was told she was too old to be in a stroller and she was lazy! It's a good thing my dd is delayed so she doesn't catch on yet to comments.I have heard lots of rude comments about my dh,when he was able to walk his back was bent to the point it looked like he was going to break in two, one parent even let thier young kid try to push him down! We ignore comments as people these days are rude.

 

[Erin12303]

My close Disney friend has Friedreich's Ataxia and looks healthy when she is sitting in her wheelchair. She is only 27 years old. LOTS of looks and sometimes whispered comments from other guests...until they see that is takes both her mother and I to transfer her onto a ride car.
People have really become insensitive and we even had trouble with a cast member when we needed to have the ride stopped to transfer. He informed us that he would decide if it was necessary to stop the ride for her transfer. Totally inappropriate and he was loading the ride.

Try not to listen to the people who are making comments. You and your family/friends know what you are dealing with as far as a disability and it is not anyone's business.

 

[seashoreCM]

...Then a man sitting in the middle of the row got up and came over and tried physically to push me out of my seat and said I should not be allowed there then he started yelling for no reason, ...

In case of unwanted touching and you can't get help quickly I say it is fine to make an emergency out of it. It would help to find out in advance what the emergency phone number for the area or for the facility is.

You do not have to obey what another guest says and if you feel that a CM is acting out of line you don't have to obey him either without a third opinion from someone higher up.

Saleslady was still rude when store manager and I talked with her.

A good manager would have given her a more than trivial infraction report.

 

[DCDisney]

That's really too bad that people act like that. I feel very lucky that my 2 trips using a GAC I didn't get any awful comments. I have a clotting disorder and with blood thinners stairs and crowds pushing are very dangerous for me so I don't use the GAC that much but always for shows and rides like Haunted Mansion where there are clumps of people prone to pushing. One trip I was wearing shorts nearly the whole time so my compression garment on my legs was visible but on our last trip it wasn't because it was cooler. I did get one minor comment on using the handicapped bathroom stall at La Nouba (I needed to do a shot and it's really hard dealing with compression garment and shot in a small stall) when there was a handicapped person waiting but they apologized when I held up the syringe. It's really too bad that people lie and use others handicapped car tags making it so much harder for the 99% of the people who are honest. As we all know it would be sooooo much easier to not have any of these issues to deal with and be able to gracefully wait in lines, deal with crowds, run up stairs, etc. Frankly the GAC is often not much of a time saver anyway especially for Haunted Mansion where they wait until they have a group to walk you through or Jungle Cruise where they just had 1 boat out of about 12 that does the gentler boarding process and we had to wait about 3 times as long as standby.

 

[homedad]

right after my double lung transpant I was slow getting around but could drive and had a temp handicap sticker and people would give me looks or make comments, you can't argue with ignorance. Once I could get around i ditched the sticker but it was important to have the option when I needed it.

 

[DarthCarr]

This is what I fear on my trip in May. I have always had a bad back and bad knees/feet and this is my 1st trip using my wheelchair that I now need to use because I can't walk long distances. I'm worried because I am a BIG guy and weigh 450 pounds and am worried when people see me using the wheelchair lines that I will get comments made about something that I have actually heard before in my life "Just because you're fat doesn't mean your handicapped". That really hurt me the day I heard it and am not looking forward to potentialy hearing it again. And at the moment I have a bone fracture in my lower back that I can't have surgery on it because of my size,and I need my wheelchair even more now. Please everyone here pray and hope that I do not get made fun of because I'm thin-skinned and just dont want that ruining my dream vacation that I have been waiting 7 long years for.

Hugs to everyone who goes through crap like this

 

[Singledad]

@DarthCarr I can totally understand what you mean. I am a large guy as well, and it is the fear of those comments that cause me to just avoid doing what I want to do.

Part of me would want to give them a snarky come back like 'and just because you say stupid things, doesn't mean you are stupid. Ever stop to think I am fat BECAUSE of my medical condition(s) not the other way around?

 

[brat]

Darth

May your trip be Wonderful

 

[kinghorse]

To both of the dads, it doesn't matter what people say and the ones that make comments are the ones who have issues. Sometimes I think people are self conscious and make more of it then it is. I have been at many pools and looked around only to find that most people are overweight and no one cares, the only person that gets looked at is the one person and yes there are few that has the fake ****s and slim body in a bathing suit barely covering herself. The heaveyset obese person and there are alot don't get a look. Don't ever stop let what you may think others are thinking from doing anything. You may think people care more then they do. There are a few idiots out there but that is not the norm after all it is ones character not what color, hair, skin eyes or what weight they are. Honestly no one cares and I know.

 

[Anna_Marie]

DarthCarr and Singledad, I know how you feel. And I am thin skinned too so one comment can ruin the trip for me. I try so hard not to let it bother me but it does. I have been trying to think of some non-rude comebacks, such as, "please don't be rude, it hurts my feelings," or as I said earlier, just sticking my tongue out at them, that might shock them into being quiet! I hope we all have a wonderful trip and don't encounter any rudeness!

 

[seashoreCM]

"Just because you're fat doesn't mean your handicapped". That really hurt me the day I heard it and am not looking forward to potentialy hearing it again. :

Do you have a good sense of humor?

"Just because I wrecked my body all by myself (playing football, eating junk food, had a hazardous job) does not mean I am not handicapped."

May be said even if a total lie.

 

[brat]

or you could go with shock treatment of them and say "I'm fat because I eat rude people"