[prmenrs]

Next time someone comes up to you like that and asks questions that are none of their business, try this response: "For what reason do you wish this information?" They will probably not persist, and may even think twice next time. At least one could hope....

[JohnBearPA]

Originally Posted by goats'r'us

a little history.. i worked for a while in a group home with four awesome teenagers who were profoundly disabled and a whole heap of in-house politics.

throughout this time, and since, i got really sick of the following:

people who see the chair and think the lights are on but no-one's home.

i was in a chemist with one of the boys, and this really nosy woman came up to me and without so much as a hello, started harping on about how sad it is to see a young life so tragically hindered. the kid blew the biggest raspberry at her (like the spit-flying-thunderous type). all i could do was say 'well, i think he speaks for the both of us' and walk away in hysterics. her face was PRICELESS!

people who think that they're heroes for working with disabled people. (this is not to say that there aren't heroes out there, but that heroes do more than turn up every day)

one of the ladies i worked with, who i never liked, invited her middle-aged daughter to meet the kids. she told us her daughter was interested in working in disabilities, but her reaction to the kids proved that to be a big, fat lie (she looked at them like they were **** on her shoe), and it was pretty clear my collegue was just trying to show what a good person she thought she was, working with those poor, helpless kids. i nearly threw up in my tea listening to her go on in her most compassionate voice about how they needed her to do everything for them, but oh, it was so nice to be able to give them a decent life.

making a spectacle of already distinctive kids.

took the guys shopping, and out basic rule was when the kids are out, they leave their chest-plates (like upper-body seatbelts that held them up straight) because, well, people stared enough without us making the kids look even less able by visibly strapping them in. anyway, this day, the lady pushing our only girl's chair didn't take off her chest-plate, and then when it got cold, she couldn't be bothered undoing it, so put the girl's jacket on hher backwards, with the big fluffy collar under her chin. she then proceeded to make up the poor kid like a barbie doll. we made her take off her own jacket, put it on backwards and walk about for a while like it.

people who presume the kids have miserable lives.

my nan said to me once 'it must be heartbreaking, seeing the poor children like that. do you ever cry?'. my response? 'are you kidding? have you ever tried out one of those chairs?' honest. we got the kids out of their chairs and onto the lawn, and while they were enjoying the feeling of grass, we tried out the electric chairs. the kids thought it was hilarious, and we had so much fun..

people who dress disabled kids like, well, retards.
(i want to point out, i use the word retard only to describe the appearance i mean)

on christmas day, we each had one kid to wash, dress, feed and get ready to go to their parents' place. one colleague (the same one who brought her daughter in), dressed her boy in a dress shirt, board shorts, long socks and black dress shoes, and couldn't understand why we wanted her to go back and change him. she flatly refused, and i did it myself.
similarly, the only time i ever did cry at work is when we took the boys to get haircuts, and the barber had no patience with them, was forcibly pushing on their heads to keep them still, while the kids were crying and i was holding their hands, crying right along, and all three boys came out with the same 'retard' haircut. short back and sides, longer on top, combed down flat down on their foreheads. we went straight to the chemist, got a hairgel tester and messed them up!

adults who stare.

i didn't mind if kids stared, i mean, they're only kids, and our guys look different, but adults should know better!

community nurses who repeatedly call kids in their own home 'patients', special education teachers who call pads 'nappies', and parents wo feel so guilty about their child's disability (child acquired disability in early childhood) that they never visit, or even send birthday presents. kid went to his key worker's house for christmas, parents declined to have him.

ah... that's my whinge, thanks for reading.

I work in LTC, and many of these also fit that scenario. What really p*sses me off is when a CNA dresses an elderly lady in a short skirt, the most colorful socks and t-shirt she can find in the closet, and puts her hair into pigtails! If they have time to do the make-up on the poor woman, they usually do it like they would if they were going out on a Saturday night! Age appropriate refers to the age of the resident, not the staf member dressing her!

[banditrn]

My DIL works with DD patients in their homes as a kind of social worker - she's very good. They got really close to one young man with Down's and take him on outings and such with the family. The young fella really likes her, but he LOVES her husband, my son!! My son is not by nature a nurturing person especially - he appears gruff and tough - but he is so wonderful with J. He teases him and aggravates him, and J loves it!! They just go back and forth - J even learned a bad work from him which he repeats often, to my son's embarrasement.

[mercyteapot]

Originally Posted by prmenrs

Next time someone comes up to you like that and asks questions that are none of their business, try this response: "For what reason do you wish this information?" They will probably not persist, and may even think twice next time. At least one could hope....

I think it was in the Joy Luck Club, one of the characters said her mother would always say to people, ''On this matter, please do not concern yourself on my behalf'' or something like that. I'm always tempted to say that to buttinskies!

[Markthemalenurse]

Originally Posted by Aussie19

I agree this is the best job I have ever had and it's because of the clients who have so much to offer.

I agree with this post whole-heartedly. I get along better with most of the clients than I do with people in the general population.

[LDnurse7]

Hey there

I totally agree with everything you have just written, i am learning disabilities nurse working in Scotland with children with profound and complex health needs. I too have incountered these problems. It is sad to hear that it is happening at the other side of the world too.

[mercyteapot]

I was at a conference one time and the speaker was the head of the NICU at a military hospital here. He told a story about having his 4 year daughter, who has Down Syndrome, at the pharmacy with him and some woman said to him, right in front of his daughter, ''oh, was this diagnosed too late in pregnancy for your wife to have an abortion?'' As if everyone chooses to terminate! OMG, I think I gasped when he told that story. Right in front of that little girl, too, as if she wasn't even there. I'm sorry, but some people are just too stupid to live!

[KellieNurse06]

OMG..I love every one of these posts.....Goats you are awesome & right on the $$$ here!!!!!! I am the parent of a special needs child....so I know exactly where every one is coming from on here......My daughter is 17 and was perfectly normal until she got sick with encephalitis & meningitis at 3 weeks old...she became severly disabled from it........I have dealt with everything that all of you mentioned on here...and the one I get alot to this day is when kids come over looking out of curiosity and the parent quickly tells them to come here while pulling their child away......the kids don't bother me one bit..it is the adults.
I actually got my daughter a tshirt that says " Keep Staring...... I might Do A Trick" It gets me & her nurses at home roaring every time we even look at it....
I had one nurse who was vewry good to my daughter but would put on Sesame Street or Dora.......any kids stuff like that.........that irritated me because what teenager of any age watches that?????
She didn't do it purposely of course...just lack of thinking.........Also one time I went tanning and was outside with my daughter when she was much smaller and was holding her waiting for my friend to come out so I could go in..was like a few minutes for each of us.....so due to alot of people sitting in the waiting area I stayed out with my daughter......again due to peoples ignorance......well I picked my daughter up from the car & was standing holding her outside of the car and this woman comes running out yelling .." Is she ok??????" I just looked at her very calmly and said yes.........and got this very bizarre look from her....lol..while my daughter started laughing at what she heard.
Another time I took my daughter with my then hubby (her dad) because we were told she was going to die very soon...this is right after she got sick as an infant,then was able to come home....and yes we thought she was really dying.......we had no pictures of her with us together so we went to Olan Mills...remember them???? And the only thing that would calm my daughter was patting her butt or holding her on your leg while jumping it....like when you play horse on your leg with the kids....because she was so spastic that movement constantly is all that helped her relax..........I would literally sit & jiggle my leg not even aware of doing it because thats how much it had to be done or she'd be bent backwards stiff as a board......we the lady who was taking the pictures actually reported us to social services for child abuse because she "claims" I was hitting my baby & yelling at her calling her rotten names ........and I was saying to my baby in a playful way" are you going to have a picture with mama & dada or are you going to be a poophead ?" now mind you ...the nurses who cared for my daughter in the NICU gave my daughter the nickname poophead because one day she would not take a bottle for anything and they said she was "being a little poophead today about feeding" and it just kind of stuck with her..to this day she gets called poopy from my sister...and is is meant in a most loving way..not being mean either............I never got offended over that from the nicu nurses ..so no big deal.......anyway I called up & reamed out that lady at the photo place about the "incident" and all she said to me was " well, I didn't know" after I explained everything to her from how my daughter got sick & what we had to do to keep her relaxed.......and she sent me a coupon for a free 11x 14 photo....can you imagine and never even apologized either.............so see ignorance is everywhere......................I have had many many experiences with stuff like this..too many that I'd fill up too much space here.....
I look at people/kids like this as teachers for the rest of us........and if I hear one more person tell me there is a special place in heaven for me because I "have dealt with this & do such a wonderful job" I will scream......no, it's because I love my daughter to death regardless of her "condition" and I am her mother.......a mothers love is unconditional as far as I am concerned......I say thank you to my daughter because thanks to her I am now a nurse.........I am no more special than a mother who has healthy well children.....give me a break I say........so to all of you who posted here so far......I totally understand 110% what you are saying..... and unfortunately there will always be people who just don't "get it" with life in general.....one of my daughters nurses actually has a brother with CP who is 40 and she takes him out all the time..when people stare she says out loud " Oh XXX....I told you not to have that extra drink before we went out"...lol..Oh I roar when she told me that......makes people look away really fast..... lol

[KellieNurse06]

oops..sorry I just remembered one good one I had to post...I was leaving my grandmothers house one time..she lives in an elderly complex......I was carrying my daughter who was about 7 at the time.....she is a quadraplegic mind you.....so as I was walking to my car with her...a man was walking by & yells outloud as he got near the door to the building.." thats terrible, taking that child out without giving her a chance to wake up, you should be ashamed "...I yelled back..." she is awake you moron" lol............... see another prime example of ignorance

[mercyteapot]

Originally Posted by KellieNurse06

OMG..I love every one of these posts.....Goats you are awesome & right on the $$$ here!!!!!! I am the parent of a special needs child....so I know exactly where every one is coming from on here......My daughter is 17 and was perfectly normal until she got sick with encephalitis & meningitis at 3 weeks old...she became severly disabled from it........I have dealt with everything that all of you mentioned on here...and the one I get alot to this day is when kids come over looking out of curiosity and the parent quickly tells them to come here while pulling their child away......the kids don't bother me one bit..it is the adults.
I actually got my daughter a tshirt that says " Keep Staring...... I might Do A Trick" It gets me & her nurses at home roaring every time we even look at it....
I had one nurse who was vewry good to my daughter but would put on Sesame Street or Dora.......any kids stuff like that.........that irritated me because what teenager of any age watches that?????
She didn't do it purposely of course...just lack of thinking.........Also one time I went tanning and was outside with my daughter when she was much smaller and was holding her waiting for my friend to come out so I could go in..was like a few minutes for each of us.....so due to alot of people sitting in the waiting area I stayed out with my daughter......again due to peoples ignorance......well I picked my daughter up from the car & was standing holding her outside of the car and this woman comes running out yelling .." Is she ok??????" I just looked at her very calmly and said yes.........and got this very bizarre look from her....lol..while my daughter started laughing at what she heard.
Another time I took my daughter with my then hubby (her dad) because we were told she was going to die very soon...this is right after she got sick as an infant,then was able to come home....and yes we thought she was really dying.......we had no pictures of her with us together so we went to Olan Mills...remember them???? And the only thing that would calm my daughter was patting her butt or holding her on your leg while jumping it....like when you play horse on your leg with the kids....because she was so spastic that movement constantly is all that helped her relax..........I would literally sit & jiggle my leg not even aware of doing it because thats how much it had to be done or she'd be bent backwards stiff as a board......we the lady who was taking the pictures actually reported us to social services for child abuse because she "claims" I was hitting my baby & yelling at her calling her rotten names ........and I was saying to my baby in a playful way" are you going to have a picture with mama & dada or are you going to be a poophead ?" now mind you ...the nurses who cared for my daughter in the NICU gave my daughter the nickname poophead because one day she would not take a bottle for anything and they said she was "being a little poophead today about feeding" and it just kind of stuck with her..to this day she gets called poopy from my sister...and is is meant in a most loving way..not being mean either............I never got offended over that from the nicu nurses ..so no big deal.......anyway I called up & reamed out that lady at the photo place about the "incident" and all she said to me was " well, I didn't know" after I explained everything to her from how my daughter got sick & what we had to do to keep her relaxed.......and she sent me a coupon for a free 11x 14 photo....can you imagine and never even apologized either.............so see ignorance is everywhere......................I have had many many experiences with stuff like this..too many that I'd fill up too much space here.....
I look at people/kids like this as teachers for the rest of us........and if I hear one more person tell me there is a special place in heaven for me because I "have dealt with this & do such a wonderful job" I will scream......no, it's because I love my daughter to death regardless of her "condition" and I am her mother.......a mothers love is unconditional as far as I am concerned......I say thank you to my daughter because thanks to her I am now a nurse.........I am no more special than a mother who has healthy well children.....give me a break I say........so to all of you who posted here so far......I totally understand 110% what you are saying..... and unfortunately there will always be people who just don't "get it" with life in general.....one of my daughters nurses actually has a brother with CP who is 40 and she takes him out all the time..when people stare she says out loud " Oh XXX....I told you not to have that extra drink before we went out"...lol..Oh I roar when she told me that......makes people look away really fast..... lol

OMG, yes, I so agree with you about how annoying that ''there's a special place in heaven for you'' crap is!!! My son has autism and is rather high functioning now, but as a young child was extremely challenged and challenging. One time a neighbor said to me something along the lines of how I was a saint for putting up with it and I just stood there thinking of how a few days previously, another neighbor had reamed her because her son took off the top of their rose bush with a baseball bat. All I could think of was that if we went around the neighborhood and took a survey as to who was the most annoying child, mine wouldn't have won! What about when people say ''I could never do it?'' I feel like asking them what it is they'd do, then. Drop their kid off at the base of a mountain and hope that a pack of wolves would adopt him and raise him as one of their own? I really believe that these people think we don't even love our children, we just take care of them out of a sense of obligation or something...