questions about cruise with my sister

[ckekjhaze]

My sister has mild mental retardation and some health issues. I am her guardian and she lives with us. Every year we have a hard time finding someone to take her for our vacations so we are going to try and take her on vacation with us, we did our first cruise this year and loved it.

 

the added benefit is that leaving from New York I won't have to fly with her.

 

here are my concerns:

1. she can have verbal outbursts and I am worried about her disturbing others although I can diffuse her quickly most of the time, just wondering if anyone has experience with security or officials stepping in if she doesn't act appropriately

2. will they ask her questions directly about who packed her bags etc? or can I answer for her? she will talk but doesn't make sense often and will say something like "I want spaghetti now"

3. she wears depends although uses the bathroom fine, just at night she sometimes sleeps through or if she overeats may have a bowel accident, I will be vigilant and bring disposable bed pads- how do you handle this issue? the room wastebaskets are tiny- do you bring extra plastic bags, inform the room steward? what if she happens to soil the sheets?

4.right now she is on oxygen but I hope by the time we cruise she will only need a cpap, some of her meds caused cardiac issues and we are doing adjustments. I can't imagine cruising with her needing 0xygen 24/7 but have read some helpful posts on here, I imagine I would need documentation that she is OK to travel from her dr.?

5.she walks and swims fine but needs a wheelchair for distances and will most likely be in her chair most of the time although she can get out any time and walk a short ways so I will just bring a foldup- no problems with that right?

[maureencruiser]

Hello, I am new to this board just trying to get info about cruising with my mother so, I can't really answer any of your questions, but, I just wanted to say Thank You for taking such good care of your sister. I think a cruise seems like an excellent idea for her. A lot of the issues you mention seem to be the same issues that parents have with children, outbursts, bed wetting, etc. From everything I have seen and heard, they seem to get along just fine. I don't mean this in an insulting way, so, please don't take it that way. I bet you can get some info on the family board about those kind of issues. I am sure the kind folks here at disabled will have a lot of good info for you-Happy Cruising (isn't it great?)...Maureen

[uppitycats]

My sister has mild mental retardation and some health issues. I am her guardian and she lives with us. Every year we have a hard time finding someone to take her for our vacations so we are going to try and take her on vacation with us, we did our first cruise this year and loved it.

 

the added benefit is that leaving from New York I won't have to fly with her.

 

here are my concerns:

1. she can have verbal outbursts and I am worried about her disturbing others although I can diffuse her quickly most of the time, just wondering if anyone has experience with security or officials stepping in if she doesn't act appropriately

I think that so long as you are with her, you just need to step forward and tell the officer (official, whoever)...something like, "I'm sorry...she has mental retardation. Let me try to diffuse this situation.."

2. will they ask her questions directly about who packed her bags etc? or can I answer for her? she will talk but doesn't make sense often and will say something like "I want spaghetti now"

 

Yes, they will, but again you just need to speak up, let them know that she won't be able to respond appropriately..and then answer the questions for her.

3. she wears depends although uses the bathroom fine, just at night she sometimes sleeps through or if she overeats may have a bowel accident, I will be vigilant and bring disposable bed pads- how do you handle this issue? the room wastebaskets are tiny- do you bring extra plastic bags, inform the room steward? what if she happens to soil the sheets?

 

I'd bring plastic bags. Ziplocs work well -- contain the "mess" and odor, too. And pull the room steward aside and let him know. I'm sure they have some means of handling baby diapers..these wouldn't be any different, just bigger.. :o As for soiled sheets..again, pull the steward aside and let him know. Sheets get stained for all sorts of reasons..but if they know what they're dealing with, they can launder them appropriately.

I'd be tipping the steward extra at the end of the cruise, above any autotip your cruise line may have in place, though.

4.right now she is on oxygen but I hope by the time we cruise she will only need a cpap, some of her meds caused cardiac issues and we are doing adjustments. I can't imagine cruising with her needing 0xygen 24/7 but have read some helpful posts on here, I imagine I would need documentation that she is OK to travel from her dr.? Generally yes, especially if it's 24/7 oxygen. And you'd need to inform the cruise line, and be sure you know what kind of dispersal system she needs. Different cruise lines have different requirements about how oxygen is brought on board, so you'd want to be doing this early. I think I'd probably plan for her needing the oxygen and get that all in place...it can be cancelled more easily than set up at the last minute!

5.she walks and swims fine but needs a wheelchair for distances and will most likely be in her chair most of the time although she can get out any time and walk a short ways so I will just bring a foldup- no problems with that right?

 

You're thinking about the size of the cabin? Presumably there will be (at least) 3 of you in the cabin? Even a fold-up chair can take up a lot of room...you could try storing it under the bed. If you haven't booked yet, y ou might consider a handicap-accessible cabin, giving all of you a bit more space, and perhaps more accommodating bathroom facilities for her.

You're a great sister to be her guardian, and do this for and with her. Have a great cruise!

[ckekjhaze]

Thanks Maureen- yes cruising is great- hope you have a wonderful cruise with your mom!

Uppitycats-thanks for all your feedback yes I do intend on tipping hugely extra- most likely everyday

Good idea about planning for the oxygen, she has only been on it for a few weeks but it potentially could be long term

I'm waiting for my PVP to get back to me on prices but I just amended the request for an accessible cabin- didn't really think about the limited space with the chair in there- we got an upsell call for our first cruise to a suite for the 5 of us so I wasn't even thinking about how small a regular cain will be

 

my kids are generally good but don't want to sleep listening to her machine I will most likely be sharing a room with my sister, and the 3 kids with my husband- cabins next to each other would be ideal

 

I took her to Cape Cod in Aug and she was perfect- no problems at all so hopefully the cruise will go smoothly- the excursions might be more limited and she can't be in the sun for long so I would definitely get a cabana at Half Moon Cay and may have to modify here and there or split up the group but my kids are old enough to find their own fun on the ship- I'm planning on the Carnival Miracle Eastern Caribbean from NY

 

thanks again

Kathy

[PennyAgain]

Daily tipping is not necessary. End of cruise is the correct time. Bring your stash of plastic bags and just keep bagging. The more you travel with sister, the more adaptable she will be as you are expanding her world. Just remind her how well she did before. We all love praise and love when our good things are remembered.

 

Don't worry about anything she says. There are plenty of people on cruise ships who say things that don't make sense especially after a couple of drinks.

 

I wish your entire family a wonderful cruise.

[xxoocruiser]

My sister has mild mental retardation and some health issues. I am her guardian and she lives with us. Every year we have a hard time finding someone to take her for our vacations so we are going to try and take her on vacation with us, we did our first cruise this year and loved it.

 

the added benefit is that leaving from New York I won't have to fly with her.

 

here are my concerns:

1. she can have verbal outbursts and I am worried about her disturbing others although I can diffuse her quickly most of the time, just wondering if anyone has experience with security or officials stepping in if she doesn't act appropriately

For the most part people are very undertstanding. Yes, there's always that one person that will complain. But that happens on land as well. Just brush it off and go about enjoying you're cruise. Your sister is entitled to a vacation.

 

2. will they ask her questions directly about who packed her bags etc? or can I answer for her? Only if something questionable shows up on the X-Ray machine. As her legal gaurdian you can answer all questions. she will talk but doesn't make sense often and will say something like "I want spaghetti now"

 

3. she wears depends although uses the bathroom fine, just at night she sometimes sleeps through or if she overeats may have a bowel accident, I will be vigilant and bring disposable bed pads- how do you handle this issue? the room wastebaskets are tiny- do you bring extra plastic bags, inform the room steward? what if she happens to soil the sheets?

 

Incontinence is something the cruiselines handle on a regular basis. It's more common than anyone cares to admit on a cruise ship. I was once on a cruise that one woman at the dining table had an issue. The staff was very sensitive to the situation and handled it without embarrassment to anyone. Also everyone at the table were very understanding of the situation. After all it could have been any one of us. Have been told by others that they bring the following :

• In addtion to disposable bed pads, they also bring an inexpensive twin plastic mattress cover that they dispose of at the end of the cruise.
  
• A generous supply of household plastic garbage bags . They double wrap everything. They also ask the cabin stewart upon arival what is the procedure for handling soiled sheets ? On some ships, don't know which lines, they have brought a bio waste container or bags to use for that very purpose. Anything you can do to contain the bio waste will be greatly appreciated by the cabin stewart and others in the laundary . Also please consider all the extra work the cabin stewart may have to do when tipping
  
• It was also suggested to bring the strongest solid room refreshner with you. Aerosals are not allowed on the plane , even in checked luggage.
  

4.right now she is on oxygen but I hope by the time we cruise she will only need a cpap, some of her meds caused cardiac issues and we are doing adjustments. I can't imagine cruising with her needing 0xygen 24/7 but have read some helpful posts on here, I imagine I would need documentation that she is OK to travel from her dr.?

Yes documentation is good to have. Also check with the cruiseline as you may have to go through their approved supplier for the oxygen. You can contact the special needs department of the cruise line. .

 

5.she walks and swims fine but needs a wheelchair for distances and will most likely be in her chair most of the time although she can get out any time and walk a short ways so I will just bring a foldup- no problems with that right?

You should be made aware that children with diapers are not allowed in the pools. Therefore the same would apply to adults wearing depends. So swimming may be an issue. Above all relax and try to enjoy your trip. Just go about your daily routine as you always do and you and your sister will just be fine.

[klauer]

I don't think that aerosol air fresheners are on the TSA "banned" list. I always bring a small aerosol hairspray in my carry-on (in the one qt. baggie) and a regular-size hairspray in my checked suitcase. There are also the small pump sprays like the Medichoice "biological odor eliminator" that are used in hospitals.

[ckekjhaze]

thanks XXOO- she only wears depends at night, so swimming will be ok- Ill just make sure she uses the restroom right before- she will announce loudly when she has to go:)

 

klauer- yes air freshener is a great idea- especially since I will be rooming with her:p

[kitty9]

Companies that provide wheelchairs and scooters for cruise ships also can provide oxygen. So if you don't want to bring along your own oxygen containers, you can get them from CareVacations and it will be waiting for you in your cabin.

 

As far as behavior issues are concerned, on my last cruise there were a number of Down's Syndrome kids on board, and as a retired teacher of cognitively delayed kids, I know they can sometimes be a little loud. But I've not seen this to be any kind of security issue and I did not see any of these kids taken aside and disciplined. Don't worry about that at all.

[D&TTexasCruisers]

My sister has mild mental retardation and some health issues. I am her guardian and she lives with us. Every year we have a hard time finding someone to take her for our vacations so we are going to try and take her on vacation with us, we did our first cruise this year and loved it.

 

the added benefit is that leaving from New York I won't have to fly with her.

 

here are my concerns:

1. she can have verbal outbursts and I am worried about her disturbing others although I can diffuse her quickly most of the time, just wondering if anyone has experience with security or officials stepping in if she doesn't act appropriately We take our son on all our cruises and he does the same kinds of things and we just quiet him down as best we can and everyone always compliments us on how good of a job we do and how they so enjoy seeing him having a good time.

2. will they ask her questions directly about who packed her bags etc? or can I answer for her? she will talk but doesn't make sense often and will say something like "I want spaghetti now" You can answer for her with no problem

3. she wears depends although uses the bathroom fine, just at night she sometimes sleeps through or if she overeats may have a bowel accident, I will be vigilant and bring disposable bed pads- how do you handle this issue? the room wastebaskets are tiny- do you bring extra plastic bags, inform the room steward? what if she happens to soil the sheets? Zack wears diapers all the time as well he will go to the bathroom but only whn we put him there he doesnt control it.

4.right now she is on oxygen but I hope by the time we cruise she will only need a cpap, some of her meds caused cardiac issues and we are doing adjustments. I can't imagine cruising with her needing 0xygen 24/7 but have read some helpful posts on here, I imagine I would need documentation that she is OK to travel from her dr.? This one I have not had to deal with so I dont know an answer to this one.

5.she walks and swims fine but needs a wheelchair for distances and will most likely be in her chair most of the time although she can get out any time and walk a short ways so I will just bring a foldup- no problems with that right? As far as the wheelchair its not a problem at all but you will have to work around it in the cabin and we have had both a handicap accessible and a regular and the handicap accessible is more room but we have been able to do the regular just fine with the foldup

 

I hope this helps you in some way just let me know if you have any other questions I would be glad to help you.

[EileenN]

Hi, We take our Developmentally Disabled daughter on cruises at least twice a year and the only issue not addressed is insurance. Our daughter is covered medically in New Jersey and USA by Medicare and Medicad (NJ Program). They do not cover her out of the country. We always take extra health insurance thru travel guard or a similar insurance carrier for the trip, plus cancellation insurance.

If outbursts are common , I suggest eating in the buffet and taking a table near one of the exits so you can get to a bathroom or out of public eye fast. One of my favorite moves.

Sometimes we try to get a chair near the pool, but use the showers that they have poolside to cool off. If the band is playing she is well occupied.

For off ship excursions, perhaps something like "pull ups" would be better.

Zip lock bags are the best for your need and the bed can be lined with a cheap shower curtain under the sheet. It can be carried easily and thrown. You may also want to pick up a hanging shoe bag (over the door kind) to be able to have things like wipes etc handy in the bathroom.

I would not tip daily, but would start with a first day tip and follow up with an end of the voyage tip. Just be vocal with praise in between.

You are doing one hell of a job and I too commend you for your spirit and selflessness.

God must smile when he sees you.

Eileen (would you do us a favor and report back when you come home. Perhaps you will come up with things that we did not think of.)

[ckekjhaze]

thanks for the kind words Eileen- good advice on getting supplemental insurance- she has medicare and medicaid

the shower curtain is a great idea- she hasn't had an accident at night in a long time, but anything that throws off her system can cause accidents

 

She does OK at sitdown restaurants- even with long waits- especially if she gets to hold the beeper that goes off when the table is ready so I may try the MDR- I have to watch her like a hawk at buffets because she sometimes tries to reach for food

 

this is going to be a true test of compromise- my family is pretty active and sometimes get upset if my sister's limitations affects them- my husband won't be happy if we split up for meals and especially excursions

 

I'm really hoping we can find a way to make this vacation enjoyable for everyone

[Jesscap5]

 

this is going to be a true test of compromise- my family is pretty active and sometimes get upset if my sister's limitations affects them- my husband won't be happy if we split up for meals and especially excursions

 

Wow really? I can understand your husband not wanting to split up but I would not tolerate my family getting upset over my sister's limitations. It shouldn't stop anyone from having a good time.

[Umbarger]

this is going to be a true test of compromise- my family is pretty active and sometimes get upset if my sister's limitations affects them- my husband won't be happy if we split up for meals and especially excursions

 

I'm really hoping we can find a way to make this vacation enjoyable for everyone

 

Wow. :eek: I really don't agree with your family getting upset. I'm sorry, but they sound selfish to me. Your sister's limitations will affect them. I don't see how they can't. However, your family have no reason to get upset. Your sister has no choice in the matter.

 

If my family ever got upset because my mom's limitations affected them. I would not tolerate it. They would get a very stern talking to and a lesson in "there but for the grace of God go I" This would put me in a very difficult position.

 

Hoping this cruise doesn't put you in a difficult position.

 

Good Luck!

[ckekjhaze]

sure they get upset-they aren't selfish- they are good kids - my sister has been living with us for 4 years and like all caregivers sometimes you need a break. we used to get 2 weeks respite per year - we don't anymore- the respite providers were part of the budget cuts, so we all agreed to take her with us on vacation- it's no different than parents who were looking forward to taking an adult trip to nurture their marriage and find out they have to take the kids- it's not a resentful feeling- just an adjustment to the kind of fun you will be able to have

- she is in bed by 9 so I am a little disappointed that I won't be able to see the shows-

 

we always did very active vacations-our honeymoon included extreme skiing and mountain climbing, and we have only taken one other cruise - we always did all-inclusives but I don't want to fly with her so driving to new york should work out

my kids would look forward to the excursions that would include ziplining, snorkeling etc they are all scuba certified- my husband is anti-shopping and can't stand walking around and browsing - especially before he got colon cancer ,our vacations were exhausting, to be honest

 

but everyone will have fun, and we found excursions for most ports - Half Moon Cay is easy- a nice beach day, Nassau everyone will be happy at Atlantis- my sister will love the aquarium and the kids will love the water slides - Grand Turk I'm not sure about yet

 

I do appreciate everyone's thoughts- of course you guys are right- and believe me I know "there by the grace of God" I am fortunate to be healthy- I grew up with 2 special needs sisters and looking back, I gained a lot more than I ever missed out

 

do I expect a 13 yo and 11 yo twins to be thrilled from the get-go to take a vacation with their aunt? no

but it will all work out

[xxoocruiser]

ckekjhaze

 

You are to be commended for what you are doing. I have a special needs greatnephew and see first hand all that goes into raising him. Being disabled myself, I often tell those that are caregivers, that you must take time for yourself first in order to be a care giver to others. Some may view it as being selfish , while those of us on the receiving end understand it to be a necessity. Though this trip may not be as extreme in activity as in the past, I think you'll be surprised at just how much the entire family will be able to do together. My assumption could be wrong, but I'm guessing it's your sisters first big vacation. She just might surprise you at how excited she is to be incuded in this big family adventure and things might be a little easier than expected.

 

The shows run at varying times so I'm certain you'll be able to work that out. Maybe one night you can even take your sister.

 

Enjoy ! Do take time for yourself if able. And most of all forget about any negative comments . You and your family will be blessed for caring for your sister.

[uppitycats]

Wow. :eek: I really don't agree with your family getting upset. I'm sorry, but they sound selfish to me. Your sister's limitations will affect them. I don't see how they can't. However, your family have no reason to get upset. Your sister has no choice in the matter.

 

If my family ever got upset because my mom's limitations affected them. I would not tolerate it. They would get a very stern talking to and a lesson in "there but for the grace of God go I" This would put me in a very difficult position.

 

Hoping this cruise doesn't put you in a difficult position.

 

Good Luck!

 

Her family gets upset because they are human beings. Sure it's unfortunate. But ...they are human. People without disabilities will be upset because those of us with disabilities aren't able to do everything they would like for us to do.

 

Rather than suggesting that her kids are heartless, why not try to think of ways to be helpful, ways that the rest of the family can have the freedom to so what they want without having a "guilt trip" laid on them??

[ckekjhaze]

xxoo - yes it will be her first big vacation in a long time- when we were kids we went to Maine, Cape Cod or Canada a lot, but she had mental and physical health problems starting in her 20's - she is 41 now

 

As a family we know all about making allowances for her abilities. For the past 4 yrs the kids have welcomed her to all their games, concerts, performances, all family and friend events, fairs, picnics, days at the beach, they also attend her events- Spec Olympics, dances etc

Many times she would get overwhelmed and start screaming and get combative and we would have to leave. saturdays are the worst because I work every Saturday for the post office there are so many events that my husband had to manage everyone with no complaining, We couldn't do a lot of the weekend hikes and ski trips but luckily the kids were able to go often with friends.

 

Vacation was one thing where we didn't include her and now we are. Yes it is an adjustment, I am not apologizing for that. We all understand she is part of the family and compromise is essential. Even for my husband who retired after 33 yrs of service at a facility for spec needs people- vacation was a break.

 

But anyway I got many questions answered from wonderful people on here and we are looking forward to the trip. The kids will meet other kids my sister will enjoy herself and we will too!

[Jesscap5]

Her family gets upset because they are human beings. Sure it's unfortunate. But ...they are human. People without disabilities will be upset because those of us with disabilities aren't able to do everything they would like for us to do.

 

Rather than suggesting that her kids are heartless, why not try to think of ways to be helpful, ways that the rest of the family can have the freedom to so what they want without having a "guilt trip" laid on them??

 

 

People with disabilites are human also..but I'm sure you know that ;)

 

You must remember that every family is different. For example, my family would never ever get upset over not being able to do what "they" want..instead they would embrace what they "can" do with or without her. The more we involved my sister..the more fun they would have. My sister is not the same as the OP's..so every circumstance is different.

 

So my point being that some people's family (like mine) are not like that at all...so it does come to a suprise to others like myself. So that's why we put in our opinion and tell about our family and the way we would feel if our family members did/say certain things.

 

I don't think Umbarger's point of the post was to say that her (OP's) whole family is heartless.

 

On another note - OP, my family takes several vacations a year and some include my sister and some don't. When we don't have my sister we do have a couple family members who adore her and will take care of her for a few days. We also have Home Health Care...so if we needed them they would be there to take of my sister. They also take care of her for a few hours during the day when we are working and she comes home from doing things out in the community..so it really helps. Not sure OP if you have something like that available to you in your area but we just found out about it a couple years ago..so it could be something you could look into.

 

I totally understand though not wanting to take her everytime. I watch my sister for weekends or what not so my parents can take there vacation time alone with each other. My sister too can throw fits..so it's nice to take a "break"...sometimes it takes time to figure out a way that will work for everyone. We are fortunate enough to have a good support system..so 9 times out of 10 it works for us.

I'm not exactly sure of your support system but I wish you the best of luck and hope everyone has a great time no matter what!

[Umbarger]

\

Rather than suggesting that her kids are heartless, why not try to think of ways to be helpful, ways that the rest of the family can have the freedom to so what they want without having a "guilt trip" laid on them??

 

Good grief, uppitycats! :confused: At no time did I call the OP's family heartless or did I lay a guilt trip. Don't twist my words or my post.

 

I just gave my opinion and said I didn't agree. I just stated that my family is not like that and if they did get upset over my mom's limitations they would get an ear full. That is just me. I am simply surprised. Like Jesscap 5 said "every family is different"

 

OP, It was never the intension of my post to say anything untoward regarding your family. You are trying to keep your children, your husband and your sister all happy. A very difficult thing to do. Traveling with disabled can be more challenging but the reward is worth it. Don't forget to enjoy yourself on this cruise too.

[uppitycats]

Wow. :eek: I really don't agree with your family getting upset. I'm sorry, but they sound selfish to me. Your sister's limitations will affect them. I don't see how they can't. However, your family have no reason to get upset. Your sister has no choice in the matter.

 

If my family ever got upset because my mom's limitations affected them. I would not tolerate it. They would get a very stern talking to and a lesson in "there but for the grace of God go I" This would put me in a very difficult position.

 

Hoping this cruise doesn't put you in a difficult position.

 

Good Luck!

 

I'm sorry, you're right. You didn't call them "heartless". Instead, you called them selfish. And then went on to say, "..your family have no reason to get upset". Well of course they do -- my opinion, of course. Their aunt is disabled, she can't do everything they'd like to do, they're upset.

 

THEN you went on to relate how you would give your family "a very stern talking to and a lesson in "there but for the grace of God go I'....which indeed is laying on a guilt trip.

 

Yes, my opinion. As a disabled person. You're not.

[uppitycats]

I should add that indeed, people with disabilities fully understand that we cause problems for our loved ones. We feel guilty because we realize we can't do things like other people can, and that we place limitations on other peoples' pleasure, sometimes. We hear or hear about the "stern talking to's" that people get when they're around us, and we really don't like being condescended to. "There but for the grace of God" talk is just that. Condescension.

 

To the OP: I really do want you to know how much I appreciate your efforts to include your sister in your activities, and hope this cruise experience works well for you. I think lots of families find that there are more fun things to do on the cruise than there is time to do it all, and they'll be able to really enjoy themselves. And you and your sister, too.

[Umbarger]

I'm sorry, you're right. You didn't call them "heartless". Instead, you called them selfish. And then went on to say, "..your family have no reason to get upset". Well of course they do -- my opinion, of course. Their aunt is disabled, she can't do everything they'd like to do, they're upset.

 

THEN you went on to relate how you would give your family "a very stern talking to and a lesson in "there but for the grace of God go I'....which indeed is laying on a guilt trip.

 

I would lay a guilt trip on MY own family, yes.

In no way was I suggesting what the OP should do or say with her family. :eek:

Again, My intension was not to lay any kind of guilt trip on the OP or her family. I am very sorry that you or the OP took my post in this way. As I said before no disrespect was intended. Please accept my apology.

Yes, my opinion. As a disabled person. You're not.

 

My opinion, as a fellow disabled person. Don't assume. ;)

[Jesscap5]

Uppitycats - your seeing this situation in your own perspective. You assume that because you are disabled, you know what every disabled person is thinking..which is first of all not true and second every disabled person is different..just like every other person in this world. You don't have the mental disabilites that people like my sister have or the OP's sister..so you can't really say what they think or feel and neither can I because in truth we really don't know and will never really know.

 

Before I assume I want to ask you..do you take care of a loved one all the time?

 

If the answer is no..then you are also not seeing the situation from a care givers view. I do not know the OP's whole life story with her sister and family but I do know that I have grown up since birth with a disabled sister and my family has grown up with it also..that's why we never complained about it..because it was a part of our lives from the beginning.

 

Is it the same for the OP and her family? probably not..I don't know. Was it explained in the beggining that "her family" she was talking about was her children? (who were young children) Not that I could recall seeing in her earlier posts..my point being AGAIN is that every family is different and yes it does come to a suprise to some of us who go through the same type of situation, that other family memebers would actually get upset.

I CAN understand if they get upset because 1. they are young and 2. I don't know if they grew up with it from the beginning..so they probably have a different situation then our families.

 

If we had known ALL the facts in the begining then yes we or I probably wouldn't have made a comment but since we didn't know ALL the facts first..it came to a suprise for some of us and we voiced our opinions.

 

PS - I'm not asking for more information about the OP..because that's her business ;)

[uppitycats]

I have been on both sides of the disability perspective. 35 years a disability consultant with advanced degree in history of disabilities and sociology of disabilities, the last 25 years as disabled person. And yes, I've counselled families -- all kinds of families -- who had children born into them with disabilties, who had children who were born without disabilities become disabled, who had adult family members become disabled, who are disabled themselves, who are disabled themselves and also parents of both typical children and children with disabilities, people who are full- and part-time care givers; children in families where the adults are full- and part-time care givers, people who put their disabled family member in institutions so they wouldn't have to "burden" themselves or their families; the person in my family -- other than myself -- who I cared for, full-time, who was disabled is now deceased..... I think that's at least most of the situations with disabilities one could consider. So I do speak with a bit more authority than someone who is caring for an ailing mother who chastizes her other family members...

 

and regardless of whether the children grew up with the disabled aunt or not, calling them "selfish", and talking about "but for the grace of God go I" are STILL guilt-laden words, and totally unecessary.

 

That's my opinion, I'm sticking to it, you don't like it, you don't have to read my posts.