Parenting Children with Special Needs Blog

11/27/07

Protecting the Blogger’s Kids’ Privacy?

Posted by : Julie in Parenting Children with Special Needs Blog at 07:19 pm , 734 words, 344 views  
Categories: Special Needs Adoption
My friend Nancy over on the Reactive Attachment Disorder blog has my wheels turning. Recently her two older adopted children have publicly questioned (on her blog) her decisions to talk the challenges of parenting them. Nancy’s probably the most straight-forward person you’ll ever meet. We tease Super Dad that he’s incredibly blunt, but Nancy could give him a run for his money.

One of the things that Nancy and I see eye-to-eye on is that Nancy is a truth teller. (This is not to imply that others do not tell the truth.) What I mean is that Nancy believes telling the truth, for truth’s sake, is important. Guess you could say “And the truth shall set you free” is a life motto for both of us. It is from that premise that each of us began our adventure of blogging here on adoptionblogs.com.

But truth telling often comes with a price. When you “call it like it is” in open forums you run the risk of sharing some deep, dark secrets or revealing details that others don’t want revealed. This is even more dicey when it is your own family…your own kids.

Some time ago I posted about a presentation I’d attended by Kathie Snow who emphatically stated that our children’s disabilities were NOBODY’S BUSINESS, so we needed to stop sharing every detail of our children’s diagnoses, their symptoms and behaviors and their struggles. While I was moved to question my own openness on this blog, it really didn’t slow me down much in talking about LuLu.

Sunbonnet Sue wrote a wise response to my early blog in which she said

"Yes, you are sharing details of LuLu's life. However, how many of your readers actually know who LuLu is? You've done a fine job of protecting her privacy."

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Yes, LuLu is not my daughter’s real name, and that protects her some. But in reality, it’s not hard to know who I’m talking about if you know our family. Relatives and friends have found our blog, the school system actually quoted from it in court, my family’s identity is pretty transparent. It wouldn’t be too difficult to find us…if you really wanted to. Nancy had tried to protect her children the same way, and they opted to publicly comment, using their real names. Go figure.

But Sue’s second point was equally notable:

“…these stories are intertwined with ours. We are living this story too. Our story is just as valid as our children’s.”


And that’s it in a nutshell. The most life-altering thing I have ever done (or will ever do) is adopt a child with unknown (severe) special needs. We jokingly (and lovingly) refer to the timeline of our family as BL (before LuLu) and AL (after LuLu), because her arrival and subsequent challenges and changes to our family have been all-consuming.

So the story I share, and the story that many of the bloggers here share, is OUR story…the story of our unique parenting experiences. The reason these are interesting to read is that readers can related to them, learn from them, take inspiration from them. The reasons we’re compelled to write them vary, but include not only helping others in similar situations, but giving us a chance to document and process our own thoughts about some very complex parts of life. Are our children’s rights to privacy violated by our writing?

Perhaps, but no more than any other writers who write autobiographically. And, after thinking about this for awhile, I don’t think the NOBODY’S BUSINESS method is a good one. I don’t think it applies whether you’re talking about addressing racial and cultural differences brought about by adoption, or if your talking about a child’s special needs. (There I go with that truth-at-all-costs thought process again.)

Frankly, I’ve rarely been offended by people asking questions about my daughter’s obvious racial differences. It’s an opportunity to tell people about the joys (and the challenges) of adoption. And writing about her special needs is an opportunity to tell others that disabilities are real, that real parents are out there facing these challenges daily, and that mental/emotional/neurological disabilities are just as debilitating as physical ones. And those messages are important.

Comments, Pingbacks:

Comment from: Sandra Hanks Benoiton [Member] Email · http://international.adoptionblogs.com/
I totally agree ... but, then, I would, wouldn't I?
PermalinkPermalink 11/27/07 @ 20:24
Comment from: Lisa [Member] Email · http://guatemala.adoptionblogs.com
This is a complicated question when dealing with children who are already adults. I'm not sure I see it as black and white.
Lisa
PermalinkPermalink 11/27/07 @ 22:00
Comment from: John [Member] Email
There is great value to the reader to hear what someone else has done, and how it worked. Even if it came out badly, we know more than we did, knowing what not to do is just as important as knowing what to do. As long as the children are minors, or adults living in our home, its fair to share.

If the child is an adult AND not living at home, this is a completely different situation. It is still fair to share if the child is OK with it. It needs to stop if the child asks for privacy. They are adults and entitled to the respect of someone trying to make it on their own. It is no longer the parent's right to over ride the child's wishes.

My view is that Nancy should respect her daughter and son's wishes for privacy, now that they have made their wishes clear. Her daughter did say, that limit didn't apply if Nancy had cleared sharing with Amy first, certainly reasonable. The only adult life we have a right to control is our own. John
PermalinkPermalink 11/27/07 @ 23:02
Comment from: Julia Fuller [Member] Email · http://special-needs.adoptionblogs.com/
My adult daughter had the same conversation with me that John cited. She was angry with me for disclosing her dirty laundry even though it happened before she was an adult.
PermalinkPermalink 11/28/07 @ 06:07
Comment from: scrapsbynobody [Member] Email · http://scrapsbynobody.blogspot.com/
This is a very delicate and sensitive subject. But I agree that keeping all information under wraps is probably a very bad idea. It really just sets everyone up for failure. On the other hand, sharing too much could result in a lack of trust or respect.

Our teen daughter has recently made some very bad choices, which have spilled over into a more public arena. Extended family and neighbors have clearly seen that things aren't as peachy as she would like to portray to them. Neither are Mom or Dad the bad guys.

I think there is an issue of time here. They say time heals all wounds, and I don't know that I buy that...but time is a great revealer of truth. I might know something, and be able to express it clearly and sensibly to you, but you might not digest it. Later as time rolls on, you begin to see more and more glimpses of the truth, and you are more able to grasp what I am trying to say.

Sadly, my child's ability to maintain healthy behaviors, or even the illusion of them, is severely compromised, and it will only be a matter of time before the disfunction begins to spill out from behind closed doors. The trouble is, that a lot of people just begin to look frightened and run the other way. They don't know how to deal with the situation even in a very mild or casual form. So I always come back to a close knit circle of those who really understand...probably because they live it too. Very few people really trust me anymore. Either they think I am being "over the top" or unduly harsh, or they are afraid of my children and "what they might be capable of", depending on how much they have experienced life with our family, such as it really is.

It goes to show what a hard row to hoe, this life really is. Isolating, fraught with conflict and misunderstanding. Our children, and our families truly do need all the TLC and support we could soak up, but it is often very scarce. When I was growing up we knew of a few foster/adoptive families. They were always "a little weird", and provided much fodder for judgmental conversation. As a child, I was unaware how unkind and ignorant those conversations were. Now I have no doubt that we are the "weird family" who provides plenty of gossip fodder.

Oh well! This is definitely NOT for the faint of heart or thin of skin.
PermalinkPermalink 11/28/07 @ 09:22
Comment from: scrapsbynobody [Member] Email · http://scrapsbynobody.blogspot.com/
P.S. Sometimes my heart feels very faint, and my skin quite thin.
PermalinkPermalink 11/28/07 @ 09:25
Comment from: nancyderen [Member] Email
A few words in defense of a philosophy that I find very positive- I think many people who have the NOBODY'S BUSINESS philosophy are mainly focused on seeing a kid as more than just a label or bunch of labels, and recognizing each person as a valuable, complex, unique individual. I've gone to countless workshops on this in the past 15 years- it was in the early 90's that the "person first" movement ("my child has a disability" or "I have a child with a disability", not "I have a disabled child", "the disabled," etc). The idea had much less to do with not giving away too much information, as it did with stating information in a respectful way. And working with kids and adults who have special needs for all these years, I've seen that language does have an impact on how people are treated. Using negative language reinforces subconscious messages over and over. Because of this, I feel very uncomfortable with lots of the nicknames that people use for their kids that incorporate the name of the disability. I know people often do that to deal with pain through humor, but I've seen it have a dehumanizing effect. I guess my point is, don't throw out the baby with the bathwater- "person first" or "nobody's business" philosophies are not at all incompatible with "truth for truth's sake", in my opinion. The issue is just how the information is presented. And I think these blogs are wonderful, helpful, an amazing public service, and do generally portray kids with respect and don't violate any "person first" type of belief system.
PermalinkPermalink 11/28/07 @ 18:44
Comment from: nancyderen [Member] Email
I wanted to give an example of what I was clumsily trying to express- one of the training workshops I give my staff involves handing out index cards with very blunt, sometimes insensitive descriptions of our program members, their disabilities, or their behaviors. Each person has to rephrase what is on the index card in a positive, respectful way that still conveys the same information. The information needs to be stated out loud in many situations- the goal is just to say it in ways that respect the person.
PermalinkPermalink 11/28/07 @ 18:47
Comment from: Kelly [Member] Email · http://fost-adopt.adoptionblogs.com
My theory is... If I can help one parent by telling my story (and my kids' stories) then it is all worth it. I have tried to protect Sammy's privacy for so many years, have made excuses for him, and glossed over the truth with friends at church, but I refuse to do it any longer. He is making bad choices and it is exactly that, his choice.

He once told me that I wasn't ALLOWED to discuss his situation with my friends because it embarrassed him. I told him that if it was so embarrassing, he should think about stopping them, and that I need to talk to my friends in order to find support and to get through some of the ugly stuff he has done. He hasn't brought it up since.
PermalinkPermalink 11/29/07 @ 16:59
Comment from: John [Member] Email
Kelly, Sammmy is a minor, not an adult. Yes, he lives in a foster home, but you are still the parent of a minor child, and you get to be in charge. If he were an adult not living at home, you don't get to treat him as just some sub part of you. It doesn't become OK just because you feel that it might help someone else, or that it feels good to show him how much you can make him feel properly exposed or embarassed if he doesn't do what you say.

An adult not living at home needs to be respected with the rights of an adult, even if they are making bad decisions. I will miss not hearing how things work out with Amy, I have a son who does some of those same things. My benefit from hearing Amy's story is not justification to trash Amy's adulthood. Yes, I have days when I would like to even up with my 22 yo. That doesn't make it right. John
PermalinkPermalink 11/29/07 @ 20:16
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