Do people ever tell you....

[robertsmom]

that you should be grateful?

By this I mean, do people ever tell you that you should be grateful that your child only has (fill-in-the-blank) and not something worse? My 8 year old DS has had Type 1 diabetes since he was two years old, and I have heard this many, many times from people. I understand that this is meant to make me feel better, and most of the time I can take it in the intended spirit because I am grateful that his disease is at least controllable, but there are times when I just want to scream when I hear this because I don't feel "lucky" that my son has a chronic illness at all, even if it can be controlled. I think a big part of it is that most people who have never dealt with diabetes think that insulin is a cure, whereas those of us who deal with know that it isn't.


Sorry....just had to vent :D

[Anne MN]

I will not get into it- but I have had that only once! I get the far better comments from people- how long will she live, does her twin have anything "wrong" with her

I do not like all the comments that are made by "well meaning" people about kids or to kids. I know that people are trying to "get you to look at the bright side of things" but for some parents, there is no bright side and you spend months in the hospital, numerous surgeries...

I am ramblin, had a long day and had a "nice lady" try to tell me to "get a clue" I just smiled :teeth: and walked away. if i would have said anything, i can guarntee you that she would not ask those questions to another soul again!

[SweetSpot]

My son is autistic. I've never gotten the you should be grateful but I get God, only gives you what you are strong enough to handle, which drives me insane. I know it comes from people who have no idea how hard it's been. They are kind people who mean well and don't know what they can say to comfort you but I want to scream I am not meant for this. I have no other choice because I love my son and want the best chance for him. Why is it that so many strong people are blessed with perfectly healthy children and don't have to watch their children suffer like we do everyday? I guess I'm venting now.

[leise]

Sweetspot , I get that exact same thing ; "God chose you because he knows you could handle it ; your son is lucky he has you" etc. My son is also autistic.

This really really drives me mad, and I'm never quite sure why. I am not particularly religious but I know lots of people who are and thats fair enough. I think what annoys me is that I don't need to hear a justification as to why my son has a lifelong disability, I just need to deal with it. It's annoying also because it assumes I'm coping with the situation; I might not be for all they know.

I feel like saying as well ; what about all those children whose parents can't cope , and spend their lives racked with guilt because of it ; what does God have to say about them?
I think in general it's just a glib comment meant to make you feel better but absolutely meaningless and unhelpful.
Final rant (I promise!) , my son is not lucky to have me - I am blessed to have him, however or whyever that came about.

Sorry to rant on, please don't flame me, but this is something that has bugged me for a long time and I've never had an outlet before!!!:rolleyes: Better now..:)

[SueM in MN]

I haven't personally heard it about my DD (probably because she has multiple disabilities and people reallydon't know what to say (as opposed to the people who just sort of don't know what to say).
One sweet thing thing I was told once by my DD's aunt when we told the family about DD's disabilities was Aunt said for the first time in her life, she could see some advantages to having had polio as a child because it would help her to be a more understanding aunt to a child who is disabled.

[Figaro]

I seem to be the kind of person total strangers feel comfortable coming up to and confessing their "sins" about how badly they used to treat people in wheelchairs/ecv's before they ended up in one themselves. I don't quite understand why(smile), but it seems to happen to me fairly often.

And I have had numerous people say (quite sincerely), something like "I don't know how you can stand it. I would never be able to handle what you do."

Which always makes me laugh(smile), as this IS my life and what am I supposed to do? Quit living it because it is challenging?

Mostly I think people want to say something and because they haven't really thought it out ahead of time, just say what pops into their heads. So I try not to take it personally (which it really isn't, as they really don't KNOW me or my life) and go on living as best as I can.

[Ali]

I've recently gotten a life altering condition from back surgery - I have caudal equina syndrome - and I am constantly being told that I should be grateful that i didn't end up paralyzed from the waist down. Yes, I am grateful, but I am also really angry that I am now living a life I never expected to have to live, on top of having an ASD child. People really don't know how to deal with disability, especially newly diagnosed, and I guess it makes them feel better to say that sort of thing. And I personally don't like being told that God only gives you what you can handle - I wish God didn't have such high expectations of me!

Alicia

[SplashMom]

I know exactly what you mean. I have two children who have Type 1 diabetes and people always say that at least they are "normal" and that it could be much worse. When my first child was diagnosed, I would give her injections 2-3 times per day. People constantly said "I couldn't do that!" It makes me scream. I didn't choose to do it. You do whatever you have to do to make your children healthy. I just ignore the well meaning people and try not to let my children hear the comments. They don't feel so "lucky" when they take injections or have sugar hi's and low's. It always amazes me that anyone would make any comment like that.

[videogal1]

Originally posted by SplashMom
I know exactly what you mean. I have two children who have Type 1 diabetes and people always say that at least they are "normal" and that it could be much worse. When my first child was diagnosed, I would give her injections 2-3 times per day. People constantly said "I couldn't do that!" It makes me scream. I didn't choose to do it. You do whatever you have to do to make your children healthy. I just ignore the well meaning people and try not to let my children hear the comments. They don't feel so "lucky" when they take injections or have sugar hi's and low's. It always amazes me that anyone would make any comment like that.

It is disheartening, too, to see that disability law and the ADA do not apply to those who are struggling to control this diabolical condition until the side effects are such that there is substantial limitation of their ability to engage in a major life activity. It appears that the lower courts take the position that those who can manage their medical conditions with diet or medication are, indeed, "normal"...

[Schmeck]

videogal1, hopefully I can word this correctly..


Quoted from videogal1's post:

"It is disheartening, too, to see that disability law and the ADA do not apply to those who are struggling to control this diabolical condition until the side effects are such that there is substantial limitation of their ability to engage in a major life activity. It appears that the lower courts take the position that those who can manage their medical conditions with diet or medication are, indeed, "normal"..."

What part of the disability laws, etc, are not being used properly for diabetics? What considerations are useful for diabetics? If the medical condition is managed by diet/medication, what is also needed?

Please, I'm just trying to learn - my family (both sides!) has a strong tendency towards type 2 diabetes, especially the females. It usually shows up around age 50. It has killed one grandmother, severely disabled another, and now 2 aunts have it as well. My father probably has it too, but won't go near a doctor. I show signs of the tendency as well, but I maintain a healthy body weight, etc. And I've got 10 more years until my 'due date'... But whatever info you could share would be very helpful.

Thank you,

Schmeck

[Anne MN]

Quoted from videogal1's post:

"It is disheartening, too, to see that disability law and the ADA do not apply to those who are struggling to control this diabolical condition until the side effects are such that there is substantial limitation of their ability to engage in a major life activity. It appears that the lower courts take the position that those who can manage their medical conditions with diet or medication are, indeed, "normal"..."

What part of the disability laws, etc, are not being used properly for diabetics? What considerations are useful for diabetics? If the medical condition is managed by diet/medication, what is also needed?



I know that this will sound a little "smart remark" but- if you can manage your diabities with diet and insulin and exercise- what part of the ADA should apply to you?

can you walk without assistance? can you walk 10 feet without having to sit down and rest? can you walk at all, or do you use a wheelchair?
do you need a kitchen cabinet and one shelf in the refigerator for your medicine?

I know what diabities can do to you after a long period of time- heart, stroke, gout, limited mobility.. my MIL has all those and others-

The ADA is a federal mandate- the fed goverment has it's guidelines that it uses for people who need "protection"
people usually think wheelchair when they hear ADA- but it covers a lot more- diabeties is not one of them that is a "protected status" some of the side effects of diabiates are-
I know that my DD has been considered disabled since birth because of her medical issues-
the ADA is a minimun guideline- most employers or states will not go above and beyond- it costs them too much-

[robertsmom]

Originally posted by SplashMom
I know exactly what you mean. I have two children who have Type 1 diabetes and people always say that at least they are "normal" and that it could be much worse. When my first child was diagnosed, I would give her injections 2-3 times per day. People constantly said "I couldn't do that!" It makes me scream. I didn't choose to do it. You do whatever you have to do to make your children healthy. I just ignore the well meaning people and try not to let my children hear the comments. They don't feel so "lucky" when they take injections or have sugar hi's and low's. It always amazes me that anyone would make any comment like that.

SplashMom, you just made my day :D So many times people have said, "you are so strong to deal with this" or "I couldn't give my child shots". I understand where they are coming from, because if someone had told me 8 years ago that my newborn baby would one day require 3 shots and 4-6 finger sticks per day, I would have said"NO WAY can I do that". But guess what, I can and do because the alternative is watching him die. I'm not a Supermom because of this. There are times when I get very, very angry at the hand that life has dealt me and my son. There are nights when I cry and pound my fists into my pillows because my son blood sugar has been swinging up and down and I don't know why. And there are times when I just hold him and think about how lucky I am to have him, just like any other mom.

[SplashMom]

Sometimes it's just nice to know someone else understands. We'll keep our brave faces and do what we must so our children will be healthy and happy!:D

[wide awake]

My son is ASD and I get those stupid comments all the time..."I work with those type of kids and you don't know how lucky you are that he is so happy"... blah, blah, blah. What kind of idiot makes remarks about someone else's personal condition ? I always feel like asking why can't I be a little luckier...let me be a foul-tempered weak willed shrew with a normal child. And this doesn't mean I would trade my DS for anyone...lots of times I see people with "normal" kids that I couldn't stand being around for two seconds. I think that is another side that the dummies don't see...they may feel like they're being nicey nice by telling us how lucky we are...they don't realize that I'm looking at their creepy kid and I didn't need to be told I was lucky to have my DS.

[mickeymousefan]

I am hesitant about posting this because I am in no way trying to offend anyone or the way they feel, but here it goes...

I am not sure why, but I seem to feel differently than the other posters here. My DD was born with multiple birth defects, has had multiple surgeries and spent 4 weeks in Childrens Hospital of Philadelphia. For anyone not familar with this hospital, it is the one of the best pediatric hospitals in the country and people come from all over the country to have their children treated there. I saw many, many children with devastating medical conditions . One of my DD's specialists even told me that if she had been born when I was, she would have never lived to see her first birthday. I feel blessed every day that she has exceeded the doctors expectations and except for her speech, she is developmentally on target for her age. Whenever someone tells me how lucky I am, I say "yes I know".

[SplashMom]

I think we all are incredibly thankful every day for our children, and none of us would trade them in for the world! It's just the people who don't understand disabilities because they don't have to deal with them. Sometimes, they have no idea how lucky they are and it can be frustrating when they make insensitive comments. This doesn't apply to the majority people, just the insensitive ones.

My kids feel incredibly lucky, however, when they get to visit Disney! :sunny:

[scroot]

I am interested in the "God" talk as I am a minister.

Here is how I see it. God's power is most often seen in talking human challenges and and bringing about Godly good. In Christianity the best example of this is the human evil of crucifixion resulting in the Godly good of ressurection.

With disability, the power of God is not found in the illness or disability. The power of God is seen in the ability of the disabled to be a "whole" person inspite of the disability. The power of God is not seen in chosing people to be helpers who are special. The power of God is seen in giving those who deal with disabilty courage, strength, and hope in a situation that could break others.

Having said all that, I often have to restrain myself when people talk about my loved one's in "there but for the grace of God. . ." terms. I have learned to chalk it up to fear. People look at DW and see their own frailty.

I don't feel we have been singled out for these issues but we have been given the gifts we need to have a life in spite of disability that is so wonderful few others can understand.

[leise]

Scroot That was a nice post! Thanks for sharing that, it has given me a new way of thinking about such comments, and a good answer back! I would struggle before, just smile and agree. Next time I shall say "No, I wasn't given him because I can cope, I am lucky to have him and that gives me the strength to cope..."
Which is true, as whenever I feel like it's all getting too much, I just have to look at my DS and his smile and love of life, and I know it'll be ok, we'll get through.
There have been some really nice posts on this thread, it's good to know that we all go through the same emotions at some point, and we all deal with them as best we can.

Sorry to be so soppy, but this is a Disney board after all!

[gardendame]

Originally posted by Anne MN
Quoted from videogal1's post:

"It is disheartening, too, to see that disability law and the ADA do not apply to those who are struggling to control this diabolical condition until the side effects are such that there is substantial limitation of their ability to engage in a major life activity. It appears that the lower courts take the position that those who can manage their medical conditions with diet or medication are, indeed, "normal"..."

What part of the disability laws, etc, are not being used properly for diabetics? What considerations are useful for diabetics? If the medical condition is managed by diet/medication, what is also needed?



I know that this will sound a little "smart remark" but- if you can manage your diabities with diet and insulin and exercise- what part of the ADA should apply to you?

can you walk without assistance? can you walk 10 feet without having to sit down and rest? can you walk at all, or do you use a wheelchair?
do you need a kitchen cabinet and one shelf in the refigerator for your medicine?

I know what diabities can do to you after a long period of time- heart, stroke, gout, limited mobility.. my MIL has all those and others-

The ADA is a federal mandate- the fed goverment has it's guidelines that it uses for people who need "protection"
people usually think wheelchair when they hear ADA- but it covers a lot more- diabeties is not one of them that is a "protected status" some of the side effects of diabiates are-
I know that my DD has been considered disabled since birth because of her medical issues-
the ADA is a minimun guideline- most employers or states will not go above and beyond- it costs them too much-

Well, perhaps I should have calmed down before I wrote this, but here goes:
I don't want this to sound like a 'smart remark' either, but, using YOUR philosophy, if a wheelchair bound person can get where they need to be with their wheelchair, then why should they be covered under the ADA either??

I have two children with diabetes also. It is type 1, insulin dependent diabetes. Not type 2, what most people's MIL, great-aunt mamie or grandmother has or had. We are talking LIQUID LIFE SUPPORT with a regimented schedule of daily injections. These children are covered under the ADA in order to force UNINFORMED, CLOSED MINDED PEOPLE to put aside their own preconceived notion of grandma's disease (or MIL's disease) and give these children the care they must have on a daily basis in order to survive. Type 1 diabetes is a disability and is covered under the ADA. This requires public schools to provide these children with the care (and shots) they deserve while in the school setting. It also prevents an employer from firing a diabetic because of time lost due to the day to day ups and downs of this disease. Whether or not you think this can be controlled with diet and medication is not the issue here. That is an uninformed judgment. My children follow strict diets, with me weighing and measuring every morsel of food they put into their mouths. They receive 5 injections per day on a calculated scale combining their current blood sugar reading along with their carbohydrate consumption for the given meal. Even with these extremely strict and regimented diet and medication schedules, they still have severe highs and lows. Comments like yours are the kind that really make me mad, more so than the comments mentioned by the original poster.
Put it in a different perspective. A wheelchair bound child is rightly considered disabled, correct? Using your own philosophy, if that child is able to use their wheelchair and go on about their business, are you saying they shouldn't be considered disabled? If that same child could not use their wheelchair for a day, what would happen to them? The worst thing that could happen is that they would be left in one place for a long period of time. Horrible, I agree. They are, however, still considered disabled. Now, suppose my diabetic children did not use their insulin for a day. What happens to them? THEY DIE!!!! That is why they are covered under the ADA - to make sure that people like you are not in charge of their daily care, be it at school or at work. Just because you cannot see their disability does not mean that it does not exist.
This really gripes my behind. Stupidity is VERY disabling!

[Anne MN]

Part of that post is mine-

I have pulled the ADA line out once- this was at work- DD had to have surgery- they didn't want to give me time off- I said that magic word- I had the time off-

I know that type 1 and 2 are different- type 2 is also called adult onset- it also carries a host of other issues for older adults- that was what I was referring to about diet and medication

As to some of your examples- people who are considered disabiled are just that they need help with daily life- it could be meds, walker, wheelchair, etc...

I don't think anyone would dispute that a person who is dependant on a wheelchair or meds- if you took them away it would be a VERY BIG inconvience or life threatning to them- I know that if you took DD meds away, one does, can be made up, more than that and it is not a pretty site!

I know that when (if) DD reaches the age where she works, she will need the ADA- I have enough trouble with the school and trying to get them to comply with their "modified" plan for her. I had to go and sit in someones office for 3 hours till they got things added, this was about 3 weeks before the big tests- these are the state tests for the "no child left behind" (you do not what to know what I think about that!!)

I am going to be having many "discussions" with her teacher, the nurse, the principal and anyone else- she was just at the Dr today and we are now at the next stage- we are going to consult with the head of transplant department at the university in a week- they will probably be putting her on the transplant list for a new heart sometime this fall- then it is the big waiting game-

I have already been "discussing" things with the HR dept where I work- I don't qualify yet for intermitent leave- not enough hours built up- was injured at work and was on paid time off- so it is going to be "intresting" to see what their answer is going to be towards this new wrinkle!

[SueM in MN]

This is a reminder to please play nice.:(
Calling other posters names is not allowed. So, please, if you are angry when you are typing, please do what I do: count to 10, re-read several times and delete anything that you would not like someone to write about you.
There are many gray areas, and people can disagree, but please don't become disagreeable about it. Also, please keep in mind that sometimes what we could say to someone doesn't quite come out the same way when it's put into writing.
It is true that the ADA doesn't cover many of the things people think it does cover.
This is a quote from one of the ADA websites FAQs:
An individual is considered to have a "disability" if s/he has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment. Persons discriminated against because they have a known association or relationship with an individual with a disability also are protected.
The first part of the definition makes clear that the ADA applies to persons who have impairments and that these must substantially limit major life activities such as seeing, hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working. An individual with epilepsy, paralysis, HIV infection, AIDS, a substantial hearing or visual impairment, mental retardation, or a specific learning disability is covered, but an individual with a minor, nonchronic condition of short duration, such as a sprain, broken limb, or the flu, generally would not be covered.

The second part of the definition protecting individuals with a record of a disability would cover, for example, a person who has recovered from cancer or mental illness.

The third part of the definition protects individuals who are regarded as having a substantially limiting impairment, even though they may not have such an impairment. For example, this provision would protect a qualified individual with a severe facial disfigurement from being denied employment because an employer feared the "negative reactions" of customers or co-workers....
Q. What is "reasonable accommodation?"

A. Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.

A lot of the ADA has to do with employment, part has to do with education (The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975), some has to do with access to things like buildings, transportation, voting, services provided with federal money.
The ADA does not list all conditions that fall under it, so there are a lot of gray areas that are being decided with court cases.
Here's a link to a good summary of 1999 Supreme Court cases. (http://www.ppspublishers.com/articles/limit_ada_coverage.htm) It is true that the Supreme Court has ruled that conditions which can be substantially controlled with medication do not fall under the ADA. That is the opinion of the Supreme Court, so it's not just a poster's opinion.
A lot depends on whether there are needs for accomidation; most of the court cases I have looked at revolved around whether a person had needs to could be accomidated. One court case I saw involved a ruling that Kindercare day care centers had to provide fingersticks for children with diabetes. They were not covered just because they had diabetes, but because there was a need that could be accomidated which affected their ability to engage in normal life activities of eating, drinking.

[3DisneyNUTS]

Scroot I have a question and maybe you can help me a little. Being a long time Catholic and going to Catholic school for 11 years (left to go to public high school for the computer photo courses in 11-12th grade).

I mention my upbringing because I was taught God protects His children. Now when my son was born he was missing 2/3rds of his brain. His prognosis was horrible so after many many months of struggling to understand why us and mainly keeping our mental state together enough not to take a leap off a bridge we made it through some tough times. My son is doing exceptionally well. While we don't know what lies ahead for him as he has beat many odds BUT his path will probably not be that of a "normal" child.

So after being told "how lucky we are" and "how amazing He is" and how we should "Thank God" for what we have and how well DS is doing. I cannot get past this utter resentment that God did not protect my son! My innocent son who started his life with a major hurdle who has major hurdles yet to come. Being told "I don't know how you guys handle it" when a problem arises or just from overall stress.

I guess what I am asking is why? Why does a life lesson have to be at my son's expense? What does my son learn from having to struggle? What if my son never has the cognitive ability to understand the "lesson"? Of course my son is a whole person to us, his parents, but why must he go through life being labled as having something "wrong" with him? What does that teach him?

I really lost faith when this happened to Chris. And as hard as I try to understand the lesson I cannot see the usefulness of human suffering. I cannot be thankful. This should not happen to anyone much less innocent kids.

Also how does this explain my friends 3 year old passing away from leukemia? What lesson did that poor little baby learn from God through her disease?

I know this sound's completely negative and I apologize but everytime I hear "This is God's will" or "we are given what God knows we can handle" I want to vomit. I know I can handle it but why should my son? Why does he get a less than typical childhood? Where was "the Father" protecting him?

I am sorry this is so harsh but I will never understand "God's plans" when people get ill or are born with a serious medical condition. AND to be thankful after the fact is impossible for me right now because where was the prevention/protection? Why my DS? Why any children?

[Talking Hands]

GardenDame IDEA is what you are talking about not ADA. ADA does not cover diabetes of either type. Businesses do not have to make accommodation for a person with diabetes. Videogal is absolutely right that a diabetic has no rights under ADA until they get the horrible complications of the disease. And Videogal was pointing out how unfair this is. I am fortunate to work in a school system that is willing to accommodate my needs but not all businesses are willing to do this. I get more rights under ADA for my hearing loss.

[midge dionne]

My son was born with spina bifida/hydrocephalus/Arnold- Chiara. He had 53 surgeries and died last year at the age of 18. I am still struggling with what his purpose in life was. I and everyone who knew him learned what faith in action is all about. My regret is that the lesson was learned at his expense.

[3DisneyNUTS]

Originally posted by midge dionne
My son was born with spina bifida/hydrocephalus/Arnold- Chiara. He had 53 surgeries and died last year at the age of 18. I am still struggling with what his purpose in life was. I and everyone who knew him learned what faith in action is all about. My regret is that the lesson was learned at his expense.

I am so sorry your son had to go through this (((hugs))) I totally understand "at the child's expense part"
That is why I asked scoot to try and give us his enlightened view. Even so I don't think I will ever understand children suffering.((hugs)))