i feel a rant coming on... things that make me mad!!

Specialties Disabilities

Published

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:

:angryfire 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!:lol2:

:angryfire 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.

:angryfire 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.

:angryfire 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.. :chuckle

:angryfire 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! :cry:

:angryfire adults who stare.:stone

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

:angryfire 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. :biggringi kid went to his key worker's house for christmas, parents declined to have him.

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

((((((tatgirl))))) I am sorry for your loss, it's so obvious you loved your son more than life........I know remarks people make do stick with you......I have heard some in the past myself that I still think of to this day...only like mercy said I was so taken aback I thought of a response after the fact......now I come right out with them & don't care what anyone says........must be due to getting older.........they say when you near 40ish in age you start to not care what anyone thinks and you'll say whatever you are thinking...and I think there is alot of truth in that! lol! Like you I became a nurse due to my child.....go figure! lol! I do think that gives us an advantage though over parents who will go through stuff with their kids that we have already been through....true empathy , so that you CAN say " I know how you are feeling, I've been there" and really be a support outlet..........well good luck! ;)

Specializes in Emergency.

I love reading all of your posts.

I spent 4 years as a RN at a school for special needs kids. I loved every minute of it. I only left because the pay was lousy. My own kids were getting older, and I needed more money.

I loved those kids like they were my own. I heard the phrase about the special place in heaven crap too. I do think not everyone can do the job though. You are either comfortable or you are not.

One of my favorite stories involved a student who pulled her feeding tube button out and handed it to a visitor. She turned 8 shades of green as I put a drinking straw in it to keep the stoma open.

Another time there was a visitor who was touring the building. He was oohing and ahhing and attempting to make friends with all of the kids. Well he got too close to a fairly large, approximately 20 year old, female student. We tried to warn him that she didn't like men and not to get too close. Of course, he thought we didn't know what we were talking about, until she popped him in the nose. I almost wet myself laughing.

Part of the reason I loved that job was because I had a severely brain damaged child who died at 7 weeks of age. He would have attended the school I worked for. He too is the reason I became a nurse. It was like going full circle for me.

Specializes in pedi, pedi psych,dd, school ,home health.

Kellie, tat and RNmom... thanks for your posts... I never cease to learn from parents of the kids i care for.. one of the reasons i am good at what i do (not tooting my own horn, i have been told and do everything i can to be the best nurse i can for 'my'kids.) is that i have talked to many moms and truly believe that they know their children best and can help me give the best care. I am currently working with adults but cant wait to get back to my pedi world!

Specializes in Geriatric and now peds!!!!.

Thank all of you for your kind words. Right now I work in LTC, but eventually I hope to work in a home for special kids. I love children, and believe all children, ( and elderly too!) are worthy of love and respect. All too often society forgets about these things.

Wendy

I'm also in LTC and the thing that strikes me a similar to this is how many people really don't see these folks as people, as if they have no emotions or understanding. Everyone understands kindness and respect, and responds to them.

well said i oftent get frustrated at peoples narrow mindness and judgement too your so right. I also hate other people judging someone elses quality of life?

And assuming all disabled people are drooling and down syndrome.

I want to punch narrow mindness people in the nose

linda

I agree with wat you said it was very well put.

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 :imbar which he repeats often, to my son's embarrasement.
My ex worked in a group home a while back. One of his clients was particularly fond of him, I guess he still says his name.The workers were a bit exasperated to here Bob's name day in and out. Well, the other workers thought it would be fun,(in fact it was my ex's girlfriend at the time) to get him to say a swear word after his name. Which he did. So for awhile he went around saying Bob's a**. I see the guy at the day program my people go to and he has refered to me as Bob's mom, but never the other (my son's name is Bobby, they attended camp together.) One of my clients gets a kick out of people asking questions about her, happy to show that she is as capable as them. She giggles and starts talking with her machine, which generates alot of interest. Yes we are not anymore special than anyone else to do our jobs, I am glad they put up with me.
Specializes in Retired OR nurse/Tissue bank technician.

I worked in an LTC facility for severely disabled children. The kids were beautifully cared for and well loved by the staff. Diagnoses included hydranencephaly, lissencephaly, microcephaly and the like. None were ambulatory or verbal.

We tried to give the children as many regular experiences as possible, including trips to the grocery store, where a trip through the produce section was a great way to stimulate their senses of sight, smell, hearing and touch (with clean fingers, of course)-and we always bought stuff to take back to the home to either make into puree for the kids to eat or to use for crafts. The store manager always knew when we were coming and would love to come out and see the kids and talk to them or just watch their reactions to the sights, sounds and smells of the store.

One day, we were going through the produce area to get apples for snacks, we also let the children feel and smell oranges and bananas and listen to the sounds of the sprayer on the vegetables.

The manager was standing off to the side, watching us with a big grin-he loved when we came to visit. Suddenly, a woman stalked up to him and loudly asked why he would let 'kids like THAT' in his store and it would be bad for business if people saw such children actually *shudder* touching the food!

He quiet told her that our kids' hands were probably cleaner than hers and if she didn't like it, was free to shop elsewhere. She stormed off and hopefully never returned.

That was the negative...for a positive experience-I had accompanied the RN to a doctor's appointment with two of the children, one boy and one girl. After the appointment, we were waiting for the handi-bus to come get us and it was a good 1/2 hour late, so he left me with the kids (no cell phone) so he could go call the bus company and see what was up.

Both children were in wheelchairs and had poor upper body control, so were strapped in to their seats to stay upright. One had a trach, both had spacisity of the arms and legs. One had a gravity feed going(there is a point to all of this).

As we were waiting for the nurse to come back, a little girl, about 5 years of age and her grandma came walking by. The girl ran ahead of her grandma so she could get a better look at us. She stared and stared at the two kids and the little girl in particular. Her face was puckered in the way little kids deep in thought do.

As her grandma caught up with her, she grabbed the grandma's purse with one hand, pointed with the other and said, "Grandma! Isn't that little girl's dress beautiful! Can I have one like that?".

She hadn't even seen the disabilities-she just saw the dress.

Specializes in Critical Care, Flight Nurse, ER.

I've read each and every one of these posts... laughed, and yes.. the giant guy cried too. I worked in a practice that had a number of special needs clients from group homes and inherited all of them, simply because my schedule was the most flexible. We saw everyone from high functioning Down's patients to profoundly disabled and admittedly I loved every one of them because of the differences in their personalities..

About 1 year in to practicing there one of the assistants that came with them asked how I liked being the favorite... I had no idea what she meant until she told me how all 5 group homes transferred the clients to me.

It truly is nice to see there are people who share my belief about how to treat people regardless of capability, and I have found that most of the patients I dealt with knew the attitudes of their caregivers just by how they responded. I had a gentleman who came in after I had just done all 5 annual physicals of one group home (they all waited patiently in the waiting room as each had their turn) and said loud enough for the entire office to hear. "Don't put me in the room where the retards were, I don't want none of their germs!!". It torqued my chains so tight I unleashed with a resounding : "Put the brain dead ******* near the bathroom so I can give his head an enema and clear the **** out for him". He stormed out, the entire office staffed cheered, the waiting room was hysterically laughing and my collaborating Doc said... "perhaps you could be more tactful next time? in the most stern voice he could muster through the tears of laughter...

Some of the greatest people I know are supposedly "disabled'. And I do agree with one of the poster's who wondered how people could so easily discard a child/family member because it's inconvenient or embarassing for them.

God bless all of you with special needs children or families.. you have been granted the most profound gift despite the burdens it sometimes carries.

I could just wish that when it comes time for the ones who are ashamed to meet their "burdens" at the pearly gates, the Burdens look and say.. nope, don't know them... but we all know they never would. they would smile, reach out, hug and introduce them to everyone they possibly could.:yeah:

Specializes in Retired OR nurse/Tissue bank technician.
I had a gentleman who came in after I had just done all 5 annual physicals of one group home (they all waited patiently in the waiting room as each had their turn) and said loud enough for the entire office to hear. "Don't put me in the room where the retards were, I don't want none of their germs!!". It torqued my chains so tight I unleashed with a resounding : "Put the brain dead ******* near the bathroom so I can give his head an enema and clear the **** out for him". He stormed out, the entire office staffed cheered, the waiting room was hysterically laughing and my collaborating Doc said... "perhaps you could be more tactful next time? in the most stern voice he could muster through the tears of laughter...
I howled when I read that and I'm glad no one was nearby to hear me. I wish I had the guts to come out with stuff like that.

And I do agree with one of the poster's who wondered how people could so easily discard a child/family member because it's inconvenient or embarassing for them.
The LTC facility I worked in had about a 70% census of kids who had been abandoned by parents. The other 30% had parents who didn't feel able to give the care needed but still wanted to be part of their children's lives and others were respite kids.

One family was thrilled to welcome their new baby girl into their family-until she was diagnosed with hydranencephaly at three months of age. Once the diagnosis was formalized, she was brought to the facility with a few changes of clothes and some diapers and her parents signed away their rights-then went home, told their two older children that their sister had died and got rid of as much evidence of her existance as possible. :( I can't imagine doing that. Shoot, if I ever were to adopt, that's exactly the kind of child I'd pick.

Specializes in Critical Care, Flight Nurse, ER.

I go home on a regular basis and tell my wife I want to adopt ... she smiles softly... gives me a hug and reminds me I can't bring every child home that grabs my heart....

Gotta stop the squishy Oooey Gooey stuff, people are gonna start thinkin I'm a softy.....

May all of you, have a Truly Blessed, peaceful, joyous and prosperous Christmas or Hanukkah or if you're so inclined.. Sparkle season, Happy Holidays or other secular non-sequitor or seasonal greeting you prefer, as for me and my house? MERRY CHRISTMAS

Specializes in neonatal intensive care unit.

Hello all,

Sincerely appreciate reading all your compassionate comments about nursing care of teens with profound developmental disabilities. One of the challenges for me is to try to give positive responses to the parents of these disabled teens when (probably as a coping mechanism) they sometimes express unrealistic goals for their dear children.

For example,the parents of my current home health 19 year old patient ask me if we nurses and special education teachers are helping their daughter at school with "hand over hand writing"(patient has severe cerebral palsy and very profound developmental delay)---when I asked the special education teachers about this writing assistance, they kindly responded saying they no longer attempt this task because the outcome is that the student displays no recognition of the task and no ability to help with any of the writing(mental age is approximately one year)---so I kindly respond to the parents saying I mentioned to the teachers that they are interested in more efforts at "hand over hand writing" and leave it at that.

At school, this patient does have a simple "communication board" attached to her wheelchair,but she does not display the ability to use this communication board--there are four big buttons she can push for these recordings to be heard--the four options are "hello","my name is ", "I need help", and "I need to be changed"---many times she does not push the buttons at all---other times she pushes the same button over and over and over with no apparent association with circumstance)

Peace to all of you fellow nurses who care for patients with developmental delay!

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