When do the rights of one out-weigh the rights of many?

[Daydreamer64]

Ok- I don't know how to use spell check on this MB so please ignore any miss-spellings

I am asking this question on the disabilities board because I feel this is the place to raise it. I was at WDW a few days ago and was saddened by a situation that I encountered while waiting in line to ride Pooh.

I want to say that I have worked with many special children in an alternate schooling situation as well as mentally challanged young adults over the years . I have also helped to raise an autistic child to adulthood in my family.

The wait for Pooh was over 45 mins long on the day that we were there. While waiting to ride, I heard yelling and turned to see what was happening. I spotted the yeller- he was a young man of about 18 or 20 years old. He appeared to have Down's Syndrome. Most Down's people are very loving yet they have feelings too and can become stressed just like the rest of us. However, I felt that his reaction to what ever set him off was over the top and he should have been removed to a quite place to regroup before continuing to tour the parks.

The people with him appeared to be a Mother and sister as they all favored very much. They may have been care givers, but at any rate, they were remiss in giving him the attention that he needed at the time.

He was yelling very bad words - M..F.. and B..among others for example and issuing threats to Kill and beat "you" up- seemingly at total strangers ( kids included ) that were walking by him as well as spitting. Words that no small child should have to hear let alone anyone else for any length of time. While I understand that he must have had a problem to set him off or even something such as Turetts sp? ( I have worked with T. kids too ) or such, I feel that he should have been better controlled until the time that he calmed down- it was terrible to hear such language directed at the babies and others in line. The CM's didn't interfer nor did anyone else.

I was hesitant to speak to the family as they were ignoring him and had their backs turned to him as if they weren't with him. I do not interfer as it is often unwelcomed by the recieving party as they are often told how to correct the childs behavior by unknowing strangers. I have been told by kind meaning people how to "____" with my disabiled child and while they feel they are helping, it does bother you when you are doing the best that you can under the circumstances- especially if you are upset with your childs behavior. I did very quietly suggest that they might ask about a GAP to shorten their wait in line. They just glared at me and turned away. Many parents got out of line with crying children who had waited and wanted to ride Pooh because they appeared to find his behavior very offensive by the reactions ( looks ) that they were giving him. The offender got to ride Pooh.

It was not my place to say anything. They must have been unaware of the GAP- why would they make this young man stand in lines knowing it would cause problems- I can't think that this was the first time he acted this way as the family just seem to not hear it.

So, with out causing a debate- when do the rights of one individual become more important than the rights of others in their general vacinity?

 

[riu girl]

Obviously, this family was unaware of a GAC (guest assistance card). It helps a lot in these situations. DD7 is a special little girl and we had the GAC for her 12/2004. We did wait in stand-by lines a lot but there were times during our past trip we opted to use the GAC (but not often). Standing in the stand by line I could read her body language pretty well and I could see that a few times she started feeling anxious (especially when it was very noisy, people were in her personal space, and she had been waiting a long time already). I would wait for her to say to me "Mommy, can we use that special card, I am having a hard time here" You could just tell, she would start breathing fast and when I touched her shirt (in the proximity of her heart) her heart was pounding very fast. A few times I would prompt her by saying "How are you doing?" Most often she responded "fine" But when she wasn't "fine" we simply left the stand by line in search of a cm. No problems.

It is so sad that these people were unaware of the GAC. I'm sure no-one would put others , or themselves, through something like the experience you described intentionally.

Sorry to hear about what happened. If only they were aware of the GAC. Maybe when you mentioned it to them, they simply had no idea as to what you were talking about and didn't want to appear ignorant. I know when my stress level is high I only half hear what people are saying to me. Perhaps this was the case with this family.

Suzy V.

 

[SueM in MN]

I have a feeling the whole family was at the end of their ropes.
They may not have been aware of the Guest Assistance Card (although I have heard CMs tell people who seem to be having problems).
It sounds like they were trying to ignore his behavior, hoping that if he wasn't getting their attention he would stop. It didn't work though and he ended up getting rewarded for bad behavior.

I discipline our DD who is disabled the same way as our non-disabled DD. My DH though (and some other relatives) would let her get away with all sorts of bad behavior because "she doesn't know any better" or because she misses out on so many other things because of her disability. I give DD a lot of credit for understanding and she does know who she can get away with things with (and I am not the one who lets her get away with anything). It took DH a while to see this - like when I would tell her to give herself a time out, she would cry and call for him (and then, he would say I was being too strict and "rescue her" because she was upset. Well, a few times she didn't know he was home, took her time out without problem. After a couple of times seeing that, DH did agree that she really did understand and should not be getting away with things.

Last night I was watching Super Nanny on TV. The thing that struck me about it was that the kids in the family (3 boys) were very out of control. No one in the family was happy; it was a very uncomfortable situation for everyone. It looked like the parents didn't care, but they did care very much. They just had no idea what to do. If that happens in families where the children don't have any special needs, it's understandable that it would happen also in families with kids with special needs. One of the other things I've noticed on the Nanny program is that parents are often inadvertently rewarding bad behavior (and if bad behavior "works", the child witll repeat it again since the end result was something desireable).

 

[LindsayDunn228]

Hey Sue,

I applaud you for disciplining your child just like any other child. I've been a paraplegic since I was 6 and my mother didn't let me get away with anything!! OF course, as a child I hated it, but now that I'm an adult I have a HUGE respect for her. Granted my disability wasn't developmental, just physical.

 

[goofyandmore]

I feel like the earlier posters that the family probably didn't know about the GAC. I know that last year was the first time I became aware of it and only through this board. Prior to that, I can remember people turning their heads to stare at me when my daughter was crying, screaming, or making her different happy sounds. I would try to calm her down but then just didn't go on any long ride lines or where we were in enclosed rooms with crowds. I wish more doctors were aware of the GAC so they could pass the information onto their special needs patients. Also, last year was the first time I contacted disney's reservation section for people with special needs and they didn't mention the GAC to me either. So, thank you for being such an informative board.

 

[ducklite]

It sounds like there were two issues here. One was that the family needed to remove the young adult and find a quiet place for him to settle down, and the other was that the CM's needed to be more proactive in assisting with a GAC.

My son has some processing issues, as well as ADD, Bi-Polar, and when he was younger, severely hyperactive. (thank God he's grown out of the hyperactivity...now he's got the opposite problem sometimes, although the "cocktail" of meds he's on doesn't help )

At any rate, we had many successful trips to WDW. We took time for a break every afternoon. The couple of times that we saw a problem coming on and knew we wouldn't make it out of the park, we headed towards first aid--a quiet rest for a few minutes even in the waiting room with some cool water was all it took. There's no stimulation there, it's a great place to get out of the organized chaos at a WDW park, and they are most understanding of special needs.

In the case of the young adult who had obviously gotten out of control, I firmly believe "reasonable accomodation" be just that. Reasonable. I also believe that that person's behaviour had gone beyond reasonable, and his caregivers as well as perhaps park security were unreasonable in allowing it to continue when it was beyond disruptive, it became threatening to others. That's where the line must be drawn.

Anne

 

[SandrainNC]

I agree with whoever said that it sounded like the family just didn't know what to do so they did nothing. That could have been the case. Or it may be that the only way for him to calm down is to ignore him and it just takes a while. Maybe if they started to take him away it would have been worse. You just don't know. I used to see kids having hissy fits in public and think why in the world aren't those people controlling that child. Now that I am a parent I'm not as quick to judge because you really don't know the situation.

Most Down's people are very loving

LOL. I have heard this so much and I can say that this is just not true. They are people just like everyone else and each person has his or her own personality. My son is sweet, but also very stubborn and can get mad and has a pretty good temper. I am not pointing this out to be fussy, I just remember when my son was born I had so many people telling me how sweet people with DS are. And also (and this is only to educate and not be fussy yet again). It is Down syndrome (not possessive) and people really shouldn't be described as their disability. My son isn't a Down's person. He is a little boy who happens to have Down syndrome. Just like you wouldn't say asthma people.

Anyway, sorry you had to witness all of that. And I would remove my child from any situation where he was disturbing others ASAP whether he has special needs or not!

Sandra

 

[Daydreamer64]

Yes, his behavior was beyond reasonable and was very aggressive. He is an adult even if he has a disability. He definately understood what he was doing as he made the faces and body gestures that accompany those type of words and actions.

I feel it was unreasonable to expect others to put up with that level of behavior particularily because there were so many small children in attendance- he should have been removed until the time that he could wait without physically and verbally attacking others. I was very quiet and discreet- I did not make any comment about him or his behavior. I told them they could get a GAP at Guest Relations that would allow them to use the fast pass line for the remainer of their trip to shorten their line wait. I know they spoke english as this was the language that he was using. I felt it would have been remiss of me to not inform them of the choice of using a GAP as this was one of the reasons that it is offered. I was thankful that we were able to get a pass for our son.

 

[HopperFan]

I have an adult DS with Down Syndrome. No - not all individuals with Down Syndrome are sweet, they have as many variables to their personalities as everyone else. They can also suffer from many other conditions that can alter their lives. From what I am reading in your point of view it sounds like this behavior was probably not an isolated incident, and therefore it is too bad that his family did not realize that WDW was not a good vacation spot for him.

That aside, while I totally agree that he needed to be removed, it may have been physically impossible for the ladies, especially without additional help. Being double jointed & highly flexible is extremely common with his disability making it very difficult, if not impossible to physically move an adult. Chances are that even with low muscle tone he is extremely strong and if he has figured out that if he crosses his legs he will be in a locked position - they had no chance. They absolutely should have been trying to calm in or at least look like they were trying to calm him.

Now if it had been me, even if I knew I could not move him, I would have still been in his face regarding his verbal and other inappropriate behavior. At the very least attempt to be a sheild for the others around him.

I am sorry you had to witness this and that others were upset. It would have been nice if a CM had just approached the family and asked them if they needed any help. It could be that you got no reaction from his family because they were absolutely mortified. We just don't know how people are feeling or dealing with a situation like that. I'm sure they wanted to be invisible. I hope that they get the help that the young man needs and find places to take him that are less stressful for all.

 

[Daydreamer64]

Thanks SandrainNC for the info on Downs - I didn't mean to make it possessive- I did say that most are very loving people but followed up with they can be stressed too and get upset just like the rest of us - of course all people have their own personalties- the world would be a boring place if not.

I did not mean for it to come accross that I was judging him or discribing him as his disability- I only pointed out his disability to allow you all to know that this was a special needs situation. I am a parent of a special needs child as well as the oldest child of a family of 18 children- I'm adoped- many of the other kids were long term placements- they had a rainbow of disabilities from physical to mental. I have an Early Childhood Education Degree and have many, many years of working with special needs people -children as well as adults- under my belt. I am the last person that would look at people and catagorise them based on their disabilities.

I am sorry that you felt that I was being quick to judge.

You are right -I didn't know their situation but I knew my situation and the situations of the other 50 people in line - we had a right to wait safely and not be verbally attacked and spit at- yelling, crying, pitching a fit is one thing but to physically threaten others in line is unacceptable.

I feel that his behavior was way beyond acceptable and had I been the care giver for him, he would have been removed -let him pitch a bigger fit on the way to time out- too bad, he knew what he was doing as his body gestures and facial expressions clearly indicated this- it is not right to force people to hear those words and get spit on repeatedly as they stood in line with him- disability or not.

This is so sad to me. Apparently this was normal behavior for him as the family acted as if nothing was wrong- until they do some ?- more ? behavior modification therapy with this young man, he will probably continue to act out in this manner. They are not doing him any favors by ignoring his behavior. The day will come when they are not able to care for him and he will find that non-family members will be very hard and possibly physically abusive to him because he was allowed to act this way at home.

I work very hard with my severely autistic adult cousin. She functions on about a three year old level. She is low functioning verbally but does have a sense of right from wrong. I asked my Aunt to allow me to have her for a few weeks last summer to give them a break- they were looking to place her because they couldn't keep her from hurting their younger children. She had been through behavior mod. many times as well as sensory training. Her behavior was terrible and had fallen into hitting and punching- she has a growth disorder too and is over 6.5 feet tall as well as is around 280 lbs. I'm a big girl but not that big. She came to me for about a month and let me tell you it was heck with her the first 2 weeks or so. When she learned what I expected of her ( through many fits of her yelling for hours, biting me, her putting her fist through my walls and quite a few wrestling matches ) she settled down a bit. I am not saying that all this person's behavior was the families fault- I know better than that but they should have been trying to redirect him if they didn't want to remove him. Sometimes snaks, games, songs what ever his secret button was should have been tried if they wanted to remain in the parks. My cousin is still at home but is on a list for placement. She is 22 years old and her parents are burned out even with respic care. She tends to get her way because they are too tired for fighting her in what seems to be a never ending battle- she will not grow out of this and will not get over the autism. That being said, they have enough courtesy for others to take her places that will not over stimulate her to the point of physical endangerment of others- she would have been timed out to a quiet place in this situation.

The young man should have been on vacation and has every right to enjoy the parks but within the boundries of not being allowed to hurt or threaten others. If the family was too burned out from fighting him that day then they need to seek out respic care or other adult care givers to help them deal with their son.

 

[SandrainNC]

did not mean for it to come accross that I was judging him or discribing him as his disability- I only pointed out his disability to allow you all to know that this was a special needs situation.

I didn't think you were judging him at all. That is why I put I wasn't saying it to be fussy. Just that it was a common misconception so I pointed it out. Every time somebody says that to me now (like when they first find out) I always say "its a lie!!" LOL. I hate trying to get my feelings across on e-mail sometimes. Please don't think I was mad or thought you were judging.

I am so used to posting on a Down syndrome board that I just quickly see when the the words are used the wrong way (some people are more sensitive about the proper terms than others) and I can't help myself!

What HopperFan said may be true. Maybe they knew they couldn't physically remove him from past experience. Maybe he would have even turned violent. Whatever the reason it sounds like it was just a horrible experience and I'm sorry you and everybody else had to go through it.

Sandra

 

[BCV23]

We have a son 22 with Down's Syndrome. Either term is correct....Down or Down's as the term comes from the name of the British MD who first described the condition. I can't get my shorts in a knot over the term that others have learned.

We've had many successful vacations at WDW with our son at WDW and other places. I think everyone has great suggestions for making sure things like this don't happen.

The part that disturbs me most is that this young man must have been modeling behavior that he has witnessed or even worse endured. Language and behavior like that don't arise out of a vacuum.

On a funny note...at least to our family...was some language we discovered our son was using some years ago. He loves action movies and unfortunately his speech has never really developed although he has great receptive skills. Anyway, he would happily use one phrase fairly often for a time. We couldn't figure out what he was saying until one day as he was watching one of the Terminator videos, Arnold used a very blue phrase and my son used his own version ! His teachers and aides had been trying to figure it out as well and we all had a good laugh. Now he always used this phrase in his typical happy manner and NO one would have been able to understand what he was saying and he had no idea what it meant. Luckily, he stopped using it as soon as we all stopped trying to repeat and understand it.

Anyway, I feel badly for the other guests, the CMs and especially this young man who will be in my prayers.

 

[Daydreamer64]

I'm glad we all understand each other - typing leaves out intonations and body movement to clearify how the content is ment to be taken. It was his behavior that I wanted to discuss not focus on his particular disability but anyway, I'm used to working with people who have behavior issues so it didn't bother me so much.

I really felt really sorry for the family as well as the small kids whose parents felt the needed to remove them from the situation- who knows if they got to come back to ride Pooh or not?

Honestly, I would have ( and have on many occations ) explained to my kids on a level they can understand what was happening. AND I would have shielded them from any body fluids that may come their way . I've been spit on, wet on ( yes - it was on purpose ) and thrown up on too many times to count when at work .

I would not have gotten out of line with my kids. They are 11 and 9 now but they have been around all types of people since they were born. I found that in a situation like this, had they been younger, I would say something like- "he seems very sad and upset. I bet he's had a bad day. Could you please not stare at him and not speak to him if he says something ugly to you? He probably needs a rest."

 

[SandrainNC]

We have a son 22 with Down's Syndrome. Either term is correct....Down or Down's as the term comes from the name of the British MD who first described the condition. I can't get my shorts in a knot over the term that others have learned.

I would like to say that my shorts aren't in a knot (just in case that was aimed at me). Part of being a parent I think is education and correct terminology is part of education. So my comments on DS were to educate and nothing more. I didn't mean to get off of the focus. I just saw it as a place to educate. If I used a term wrong I would not be offended to someone pointing it out to me so I know the correct thing to say next time.

I did find this though.

"The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome)." on the National Down syndrome Congress site. But enough with that.

To DayDreamer - that would have definitely freaked me out if he would have been spitting at me or my family! I guess you said you are used to it with your line of work though.

he seems very sad and upset. I bet he's had a bad day. Could you please not stare at him and not speak to him if he says something ugly to you? He probably needs a rest

That would have been something good for his family to say to people around him I think. I am very quick to apologize for my son disturbing anyone though and that is just for every day toddler stuff. Sandra

 

[BCV23]

Sandra, I wasn't aiming it at you...just trying to make the OP feel better as I don't think it was her intent to offend anyone.

I think you can find both terms used and if the NDSC site is not using Down's currently...it will probably be doing so again in 20 or 30 years. We used to get their literature when our son was young and I could swear they used Down's way back then! At any rate, I find both terms used by school and medical professionals.

My son also has Type I diabetes with onset at 6 and our DD has cerebral palsy and is visually impaired. I just don't have enough psychic energy left to worry about what terms someone uses.

Now my DD sure does though.....terms are very important to her as she tries to negotiate a challenging university at the age of 19. So I certainly have very first hand experience at the importance of the current terminology to some!

 

[SandrainNC]

BCV23 - Can you tell that I have a 4 year old and are on those DS discussion boards all the time and you have a 22 year old and are probably way over that?? LOL. I think I found that people in Europe add the apostrophe. I didn't want the OP to think I was fussing or anything either. Like I said, hard to come across like you want sometimes on these boards.

Can I ask you now that your son is older do you have to use the guest assistance pass when you go to WDW? I didn't get one this past trip because my son doesn't have any sensory issues. His only issue is not wanting to wait in line just like all of the other toddlers.

Sandra

 

[BCV23]

Yes, I know what different places we are. You are so lucky to have those DS boards to go to. All we had was a little support group at our son's early intervention center. Enjoy your son. Ours could be stubborn when he was little and he did have a temper although it was so short lived. He used to get mad if the wind blew in his face. That can be hard to avoid in IL and MN. But he developed into such a ...can I say it...sweet person. We can't imagine life without him.

We do have a GAC which we often don't need to use. He has a heart condition, hypothrodism as well as Type I and fatigue can be an issue. In fact I remember once walking into the side of SE. We had a wheelchair for our DD but DS2 was really tired and too tall for my DH to put on his shoulders. So my husband put our DD "up" as we called it and our son in the chair. Some woman with a daughter in a wheelchair saw him in it and said "Shame, those should be for people who need them!" And this was a mother who should know better than to judge. But when he was a toddler, we didn't use anything like a GAC since he was just a toddler like everyone else as you said.

Enjoy your treasure!

 

[SandrainNC]

Shame on that woman for saying that to you!

Yes, I love my boards!

Yes, my baby is sweet too when he chooses to be. He is one of the best things that has happened to me but can be such a booger! He tends to be a "drama king". He gets his feelings hurt a lot. He is sensitive like his mommy! He was 2 months early as well and I think that added some extra problems (his PT thinks so anyway).

Take care! Sandra

 

[SueM in MN]

That aside, while I totally agree that he needed to be removed, it may have been physically impossible for the ladies, especially without additional help. Being double jointed & highly flexible is extremely common with his disability making it very difficult, if not impossible to physically move an adult. Chances are that even with low muscle tone he is extremely strong and if he has figured out that if he crosses his legs he will be in a locked position - they had no chance. They absolutely should have been trying to calm in or at least look like they were trying to calm him.

Very good point.
My DD, who has CP and is actually spastic (think of a doll with a hard vinyl body and no joints) is able to become very loose (think of a rag doll). When she does this, we call it "melting". Over the years, she has become very adept at melting and unmelting, knowing the exact point to stiffen and melt to cause the maximum amount of difficulty for her caregiver. She knows exactly how far she can go without putting herself into danger of falling (and she won't go that far). She doesn't melt any more very often, but at one point, melting was one of her ultimate weapons, mostly used to prevent us from taking her out of her wheelchair when we needed her to do something and she did not want to do it. It is very difficult to move small "melted child" , but I can still do it because DD (although full grown) is only 5 feet tall and about 85 pounds.

It very well might have been physically impossible for the ladies mentioned in the original situation to move him and they might possibly know from experience that he was at the point where anything they did, other than ignore him, would cause him to escalate even more.

Many people choose to use a stroller or a wheelchair for a child/adult with special needs, even if they don't have mobility problems. One reason is that it provides a bit of a "safe refuge" that helps the person cope with being in a crowded, busy situation. Another reason is that if the person needs to be removed from the situation, it's easier to do if they are already in a wheelchair or stroller.