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

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.

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.

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.

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.

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.

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

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!