Privacy « Terrible Palsy

Privacy

August 20, 2007 at 1:10 pm | In Bits & Pieces, Parenting skills (or lack thereof), cerebral palsy | 12 Comments

My husband works in criminal defence law. He has some interesting client’s and some very creepy ones. In the past, he has represented some kiddy fiddlers. This makes me uncomfortable. It makes me uncomfortable to know that these people exist. And yet I know they do as I see the search terms that some people use to find this site. I also see the mountains of SPAM containing links to undesirable sites. I sometimes wonder whether I should make this site private to protect the kids from the undesirables.

Recently, Moo has been having some problems in the nappy area. This is one of the main reasons why we have gone back to have botox again. Just getting his legs that little bit further apart helps with the hygiene status downstairs.

I was once in a discussions where someone (whose name is long forgotten) suggested that NICU’s don’t take into consideration a babies need for privacy. At the time I thought what complete rubbish. Why does a baby need privacy? But I’ve got to say over the last few weeks I’ve been re-thinking this a bit.

With Ad and Master C, their bodies became their own around the same age as Moo is now. Master C for the most part, cleans his own body. He still can’t wipe his bottom but that is a rant left for another day.

Moo, on the other hand, relies on me and hubby for all toileting, washing and dressing. At his ABR assessment, he was considerably uncomfortable with sitting there in only his nappy. This trend has continued and he screamed at me to put his shirt on this morning when I got distracted by Sumo half way through dressing him. There are certainly parts of washing Moo that makes me uncomfortable. I feel like I’m intruding upon his privacy. And yet, I don’t know what other option there is for it.

Hubby and I were talking about this issue on the weekend. His view is that he thinks that it is better that I do these things as he feels even more uncomfortable than I do with washing Moo. Though I am totally against circumcision, I have been wondering whether this is a better option for a child like Moo.

Moo has already had to compromise on so many aspects of his life. It seems a lot to also give up his right of privacy.

What do you think?

12 Comments »

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No, I don’t think he should have to give up his right to privacy. As Dave Hingsburger says, “Privacy is a mental health issue.” The folks who work at my place of employment providing personal care to folks go through extensive training, I’m sure you could find some good DVDs to watch regarding how to provide care while at the same time respecting privacy. Let me know if you need help and I’ll ask at work.

Comment by Jodi — August 20, 2007 #

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I don’t think that Moo should have to give up his right to privacy either, although I admit that in thinking about it I have realised, I have very little privacy because I can’t shower and dress myself. Let me know if you come up with any solutions please.

Comment by Karen — August 20, 2007 #

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I know there is a serious side to this, and I will make an extra effort to maintain his dignity whenever I change or bathe Moo. As for Master C’s bottom wiping issue, it has to be seen to be believed. I have visions of all the kids at kindy doing that.
But this all does strike me as quite funny coming from a girl who at the age of about 8 or 9 just marched into the bathroom with her friend to introduce her, while I was having a shower. Thank goodness we had the old fashioned frosted glass screens back then…….

Comment by G-ma (Jacqui's Mum) — August 20, 2007 #

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That is a tricky issue and one I find it difficult to get around. Moo does have the same rights to privacy and dignity as everyone else, but it can be hard to achieve when he needs a lot of personal assistance. My daughter is now 9 and my husband feels very uncomfortable changing and cleaning her lately. We try hard to respect her privacy, but find it especially hard when out and need to use public facilities, especially ones that aren’t set up well.

Comment by Donna — August 20, 2007 #

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[...] Nile Virus Privacy » This Summary is from an article posted at Terrible Palsy on Sunday, August 19, 2007 Privacy [...]

Pingback by University Update - Cerebral Palsy - Privacy — August 21, 2007 #

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There is something you can do to your blog so it won’t show up in search engines. I will look it up for you if you want. Privacy is a difficult one but I have a few ideas (things that have worked for me) if you want to e-mail me. One thing I will say is that the attitude of whoever is providing the care/support is huge in helping to deal with these issues.

Comment by Emma — August 21, 2007 #

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I think Emma’s point is a key one – the attitude of the care provider is really important. A respectful, matter-of-fact attitude about the job the needs to be done with anatomically appropriate language helps while at the same time meticulously avoiding jokes, language, or anything that even remotely smacks of disrespect, disgust, embarrassment, sexual harrassment, or degradation. There absolutely needs to be no shame attached to having help with bodily functions.
Some adults have a particularly hard time with their own discomfort and they pass it on the child through inappropriate humor or by overemphasizing the mundaneness of the job, thus giving the child the exact opposite impression and resulting in embarrassment and shame.
For example, I think you can wipe a bottom similarly to wiping hands – ie -it’s a necessary part of hygiene. But you do it in a private place as quickly and efficiently as possible.
Whether it becomes an invasion of privacy to the child depends so much on the caregiver’s approach. From experience, I really do think it’s possible to continue necessary hygeine and maintain privacy and respect. One other thing, of course, is that only carefully chosen people take care of these sensitive issues.
Janet

Comment by Janet — August 22, 2007 #

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Hi there — sometimes I wonder if you’re reading my mind…then I remember we both have kiddos the same age with very similar issues!

I loved the comments and will take them to heart when addressing changing and care with Jack.

I found an EXCELLENT product via the NICU (when Morgan was in) that helps tremendously with cleaning Jack along with diaper changes.

http://www.sweenstore.com/bazcleanprot.html

It’s baza skin cleanse and protect. It’s a lotion cleanser that comes in a spray bottle. I spray it onto a baby wipe and it helps so much.

Comment by Angela — August 23, 2007 #

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Just wanted to add — Jack is not circumsized either — even though it’s a very popular thing for American boys…the skin cleanse helps all diaper areas!

Comment by Angela — August 23, 2007 #

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It’s a great question. I worry about this with Ellie. So far we are still at the point where she is not self conscious. But Janet and Emma make great comments and it is definitely something to be extremely sensitive about.

Comment by Kathryn — August 24, 2007 #

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If you haven’t already discovered it, you might enjoy reading–and find very enlightening–Amanda Bagg’s blog at ballastexistenz.autistics.org. She talks about some of the issues you raise here such as disability rights, including the rights of disabled people to set their own boundaries, being respected as a person (see her video on being an “Unperson” — very powerful), and so forth. Personally, I found it well worth reading the entire blog inside and out, including all the comments left at all her blog entries, and including following all the links she points to. It was a real learning experience.

http://wecando.wordpress.com
http://reunifygally.wordpress.com

Comment by andreashettle — August 26, 2007 #

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[...] whose child I thought was at a similar severity to Moo, my personal thoughts in relation to the privacy post I wrote. The response was that it (being my major concern) wasn’t going to be an issue [...]

Pingback by Meaning « Terrible Palsy — September 4, 2007 #

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