family dynamics of disabled children

[ArwenEvenstar]

I posted this in the home health section, but it is also pediatric related. And I thought a pediatric nurse might get me going in the right direction.

I've been doing private duty in a home caring for a severely disabled child since last March. Child is 8 years old and this is a permanent disability. (Child will not improve or get better.) Despite the challenges of working with a severely disabled child, it is otherwise an ideal situation and I love this job!

I am looking for information/professional articles on the "family dynamics" of handicapped children - especially from a nursing perspective. I have searched on the web and found a handful of slightly helpful articles, but definitely not what I was hoping for!

What was I hoping for? Articles that deal with questions like:

What kinds of coping/responses is the nurse likely to encounter in the parents of severely disabled children? What is "typical" behavior or stages that parents go through? (Especially as the years go by and the disability is severe and long-term) How can a nurse respond? How can a nurse not get pulled in by the "neediness" of the family but remain compassionate at the same time?

I am new to both private duty and caring for a disabled child - and I guess I was hoping for articles/info that would lay out the basics for me.

The child I care for is growing and getting heavier, and we are going to have to get more equipment in the home. (a pediatric lift and a pediatric hospital bed). The mother became hysterical and wept about this! It was quite a scene. My supervisor told me, "It's very difficult for parents of handicapped children to accept that their child has entered another ''level of care''. It often forces parents to face that the child is not getting better and the situation will only worsen as time goes on. This presents such a loss of control that, emotionally, parents are overwhelmed and I think this is what happened to her".

I thought the mom would be glad to have equipment that would make her child's care easier, but that was very wrong thinking on my part!!!!!

This is why I'd love to find some good professional articles from a nursing perspective on this issue. So I will know what to expect and be ready to respond. Any ideas where I should look? Or how I should "word" a web search? Any personal advice? thanks!!!!!

Warn: (0%)

[prmenrs, RN]

i realize there is lots of controversy re: terminology. i use various terms, depending on my audience. (i even used the term "retarded" once on a plane in a situation w/another passenger who was trying to get us to sit in different seats-separated. juan was only 6 @ the time. we wound up in first class!) the one i use most often is "special needs". it is important to have something people understand quickly, esp if the disability is not readily apparent, which is my situation.

i understand the importance of not demeaning our kids. we can be gentle, but if that doesn't work, and it won't w/some folks, use any term necessary.

****j.m.h.o.!!!!****

[NotReady4PrimeTime, RN]

I'm seeing a lot of responses here that could have come from me. (I was ready to suggest Exceptional Parent but prmenrs beat me to it. It's an excellent source for the kind of information you're seeking.) Of course each family will react differently to changes in their routines; all of us are coming to the table with different experiences, skills, coping mechanisms and attitudes. It's very hard to continually be reminded that your child will never experience the things most people take for granted.

My son, who is 22 years old now, will never drive a car, go to university, move out on his own, establish a career, have a girlfriend, get married and have a family, all those things his old friends are doing now. In some ways it's much harder for those of us whose children started out "normal" (a word that I personally find offensive) or without special needs and who became disabled at some point in childhood. For Adam it came when he was ten weeks short of his sixth birthday. He had plans to become an engineer, to be fluent in French like his sisters, and to be a dad someday. The day we had the hydraulic lift installed in our bathtub was a dark day for me. It was an admission that he was getting too big for me to wrangle anymore and that he really wasn't ever going to be any more mobile than he was at that moment. Each time I take him for Botox just to keep him from turning into a pretzel, it's another admission. I hate calling for diapers to be delivered, I hate interviewing respite providers, I hate looking for "family" washrooms when I'm out with him, I hate the looks we get when we're out and he gets excited about something. But I love HIM. So I squish down all the resentment and guilt and self-pity and do what needs to be done, the same as parents of special children everywhere, no matter the age or difficulty.

Okay, now for something practical. You will find that there is about as big a range of dynamics in special needs' families as there are in other families. Some parents are totally immersed in caring for their child themselves and only reluctantly accept any help. Others are quite happy to turn the entire responsibility over to someone else. Most though fall somewhere in between. It's impossible to put oneself in someone else's shoes, and the only thing we can do is be sensitive, friendly (but not too friendly) and willing to tactfully enforce our boundries. The fact that you're educating yourself on the issues facing our families tells me that you will find your balance. Rome wasn't built in a day.

[rph3664]

Thanks for all the new posts! Both the personal thoughts and links/references were helpful. The one link was actually for a textbook on this issue (Families Living with Chronic Illness and Disability

Interventions, Challenges, and Opportunities). If there is a textbook, some colleges/universities must offer a class in this... I am going to look into it locally. Quest magazine looks good too - something to at least keep you informed about different aspects/technology of caring for the disabled.

I am new to pediatrics, private duty, and long term disability. Things that might be "common sense" to those with experience are not common sense to someone totally new to it. Knowledge is important to me. Thanks - you have helped me get going in the right direction!

P.S. I also did some web searching on the terms disabled vs. handicapped. My search revealed that there is very mixed opinions/views on which term is best. For instance, the one site said that many disabled people do not mind the term handicapped, and that "politically charged activists" are the ones who are offended by it. (And the family of the child I care for actually uses the term handicapped more frequently than disabled... ) But then, other sources did indeed say that the term handicapped is very offensive!

Maybe I'll stop using both terms and just tell people I care for a child with "congenital anomaly 17 Q". Nothing offensive there, but they will be scratching their heads wondering what in the world I am talking about...HAHA!

Veering OT: I know a woman who has hemiplegia from a stroke. She refers to herself using all sorts of politically incorrect terminology. I cringed the first time she referred to herself as a "crip" but that's how she chooses to deal with it.

Hope I never understand.

[LydiaNN]

I also know a few people with physical disabilities that refer to themselves as "crips", but my sense is that it is meant to mock how they are sometimes treated in society. I know a woman who is in her 50s now, graduated from Stanford and has a Masters, who has severe physical disabilities. She owns her own home and lives alone, with only the assistance of a cleaning woman and a service dog. She drives an adapted van and participates on most of the high level disability councils and committees in this County. And yet, she says that when she goes out to restaurants with people who don't have disabilities, the wait staff never asks her what she wants. Everyone that goes out with her says the same thing, "I don't know" to prompt the waiter to ask her, but I can see how that would get old real quick. I remembered that story when our staff went out for lunch and the waitress kept asking me what the woman next to me, who has Down Syndrome, wanted. I said "I don't know, I didn't ask her". Then when the same person asked me if this woman wanted more water, I said the exact same thing. I don't think it made any impact, but I tried.

[rph3664]

I worked in restaurants for 15 years before I became a pharmacist, and I always asked the person themselves what they wanted unless it was obvious they couldn't answer.

I'll never forget when I worked at Perkins and a man came in who had no arms. Don't know if he was born that way or became that way later, but when his food arrived, he removed his shoes and ate with his feet. This completely freaked out a LOT of people, but I replied, "What was he supposed to do? Shove his face in the plate?" Besides, his feet, which he used as nimbly as I use my hands, were probably cleaner than most people's hands. Another time, a couple came in with their daughter who was severely mentally and physically handicapped. An elderly couple sitting nearby said, "People like that used to be put away. They weren't taken out in public" loud enough for the family to hear, and I wanted to say, "They're not bothering you. If it upsets you that much, YOU leave."

At this place, there was another waitress who had a hangup about "retards". :angryfire She would talk about this in front of another waitress who had a son who I now believe was probably autistic. She acted like they were contagious or something; her rural upbringing probably contributed to this.

[rph3664]

bump - it's a good thread.

Guess I should clarify that the woman's son who was probably autistic would now be about 40 years old, and the woman with the "rural upbringing" had simply never been around disabled or non-white people and just plain old believed what her parents, etc. told her about them (she didn't like them either).