Wednesday, September 27, 2006

Privacy rights (and writes)

Blogging has been difficult lately for two reasons:

1. Bud is going through a difficult time, and

2. Bud just turned seven.

Seven is old. Seven is big kid. Seven is time to renegotiate the children's bill of rights and start adding amendments.

At the heart of my struggle is this question: To what extent is it fair for me to post private information about Bud in a public forum?

Where does my story of life as a parent become his story of life as a person? And how much of his story is mine to share?

I feel very comfortable sharing the good stuff - the triumphs, the proud moments, the crowning achievements. But the harder stuff, the darker stuff... there, I type with caution.

On the surface, I am writing about my own parenting struggles and shortcomings in the face of difficult times. But on a much more significant level, I am writing about the challenges that are at the core of Bud's being, about the things that overwhelm and frighten him, about the places where life feels beyond his control.

I think about the times in my life when things have felt beyond my control, and I wonder how I would feel if I learned that someone else had changed my name and a few identifying details, then posted my life story, complete with all the most gut-wrenching, heartbreaking moments.

I don't imagine I'd be pleased.

I wish I could ask Bud about it, and get his blessings before I hit "publish." But we're not able to have conversations like that; not yet. In the meantime I'll continue waging the internal battle, make my best guesses at what is appropriate to share and what should remain outside the blogosphere, and keep my deep respect for Bud at the center of everything I write. For now, that will have to be enough.

And, for now, I'll say this: We are doing well, but - for now - I'm staying quiet.


Wendy said...

You mean "Bud" isn't really his name? ;-)

I totally understand your concerns but I'm not going to lie - hearing that you may stop sharing Budisms makes me feel a little panicky. Bud's continued progress gives me hope. Bud's unique way of looking at the world makes me smile on days when smiling is the last thing I feel I can do.

Perhaps Bud would be more willing to accept that his life has been well-documented for the world to see if he knew that he's given so many people hope, joy, and sometimes a really good laugh?

Anonymous said...

I agree with the previous comment, but totally understand - you do what you feel right about. Good Luck!

Anonymous said...

You just might be the best mom in the world.


Anonymous said...

i thought about it some more - you always write in a very respectful way about bud - you can tell that you love him above all. sometimes you do it as a way to ask for advice on how to help him. i can't see bud having a problem with that as he gets older - he might even like reading throught the archives, like a journal!
NOT trying to convince you to keep blogging about him - just thinking.

Daisy said...

This is a tough call. I had to start re-thinking my posts when Amigo (a.k.a. El Grande) started reading my blog himself.

Anonymous said...

I also wouldn't want you to continue if you felt it wasn't right, but I so love reading about Bud that selfishly, I wish you would.

Bud may very well enjoy being able to someday read all the wonderful things, even in the hard times, that you felt about him as his mom. That's quite a gift you have there. :)

Anonymous said...

A year ago, I attended a conference where the keynote speaker was a woman from Vancouver. She spoke openly and quite frankly about her life with her daughter, and her daughter's life.
She commented that for her it was important to give the entire experience as she discussed her daughter. She felt it was necessary to share both triumph and trial in order to build herself a community of like-minded parents and educators.
I think it is entirely a personal decision. This woman wanted to have the contact of community, not only to be educated, but to educate.
Your stories about Bud are wonderful testaments to the challenges and the joys of raising a child with autism. And from my perspective it is done entirely with love, devotion and respect.
With my own blog, I hope that maybe something I write will touch someone's spirit and perhaps foster them to do something good, to reach out for help or to simply read and know that they are not alone...I write as a woman, a wife, a parent, a teacher..a victim and even a joker. I can tell you that for me, reading about Bud makes me feel not so isolated from the job I adore. I also imagine that other parents who have children with special needs find comfort and direction in what you write. The truth and honesty, and of course the humor with which you write, are truly a gift. Your blog is the journal that Bud can not write for himself right now. And given that you always write with the love of a parent, I suspect Bud would approve of his journal.
Good luck with the decision. God bless.

ballastexistenz said...

I am glad you are thinking about his privacy.

I once met a woman who said her daughter (with an intellectual disability) did not give permission to share her photos in public, and that she only shared photos after her daughter said yes.

I was, perhaps overly, impressed by the thought of her daughter's privacy.

In a world where pages like this are part of the standard-issue stuff on the net... (I have days like that too, I don't want someone following me around with a camera) ...and where parents show photos of their children's self-injury and then type as if they were their child... concern for privacy and non-invasiveness is refreshing.

kristina said...

I have been thinking a lot about this issue of representation very much of late, as I wrote here at Autism Vox. My writing about Charlie on has become a sort of witness and I do not know what Charlie thinks about it all. I write now always aware of myself as writing paratext that is from the perspective of me as a parent, a mother, and non-autistic. It has never been easy to write about Charlie's tougher days but it would be dishonest only to convey that "all is fine." (Is it for anybody, NT too.....)

Tough moments do not equal bad days in Autismland; struggle is part of it all. I think.

kristina said...

PS. 7 was a tough year for Charlie.

Anonymous said...

You can see from the comments that you are touching many lives, and in a very positive way. Although I don't have an austistic child, I have recommended your blog to many people who are dealing with varying disabilities. They have told me how great you are and that they can see your love for Bud in everything that you write. You are truly gifted. Thank you for sharing your gifts and Bud's gifts.
I will pray that you make the best decision for you and for Bud. God bless you both.

Anonymous said...

i'm thinking of you and bud and sending my best thoughts and support.

Anonymous said...

A quick word from one of my favorite wise men:

We are cups, constantly and quietly being filled. The trick is, knowing how to tip ourselves over and let the beautiful stuff out.

- Ray Bradbury

MOM-NOS, you share so much with so many people -- certainly more than you think, or could ever know. I think all of it, ALL of it and more, will come back to Bud a hundredfold. You, and only you, know what you should write about and what you should share. But please know that your strength and your bravery, and above all your amazing gift with words, is changing lives. Yours, Buds, and so many others that you're not even aware of.



dina said...

Hi! I just found your site. My son was diagnosed with autism in January, he's now 3. I was just doing a search for why he's been having trouble falling asleep, and found your post on the change of seasons. Thanks for sharing your journey with Bud on your blog, it means a lot to other parents sharing similar situations. I will be reading you from now on. Take care :-)

Kev said...

MOM-NOS, I know exactly what you mean and you know I stopped writing publicly about Meg, albeit for slightly different reasons.

I don't envy you your decision but I'm full of respect for your thought processes.

Anonymous said...

If anyone can find the delicate balance of blogging with integrity it is you.
Your concerns are valid and I share them.

The 4 J's said...

I understand your concern and caution. But please note that your messages are helping lots of people. Especially me. I have been going back into the Archives and I have written down the books you recommend. I take notes on the struggles and triumphs. I laugh and cry at your stories and am humbled to have shared the same experiences with my own child. It's a relief to know that others go through the same thing and get through it and move on. Every day I look to see a new message. Please keep going. Think of it as your own journal and when you look back at it 10+ years from now you will be glad you did.

Anonymous said...

You have a gift that has touched so many lives.Bud would be (and probably is) proud of you and all that energy you have devoted to this blog.Please do not underestimate the power of your words.They are what keeps you strong for Bud and for all your "supporters" like us.
Hang in there,MOM-NOS - you help us "feel" - something we need to do a lot of times during the day.
A wellwisher from miles away...

ballastexistenz said...

I would have, almost the opposite phrasing as the person in the last comment: I understand that your writing helps a lot of people, but I'm also very concerned about privacy issues.

People have told me at times that I have absolutely no right to privacy because I have an obligation to open up about everything and anything in my life, because it "helps people".

So, I would say that helping people does not necessarily trump privacy, and that this is especially true if you're dealing with someone else's privacy other than your own.

Anonymous said...

I totally understand your dilemma. I had always shared openly when doing presentations about both the good and bad of parenting my son. But when he was finally able to give some degree of 'permission', I did ask if he was okay with me talking about things that happened to him. He was fine with it. But I'm sure he does not fully understand what he was giving me permission to do. And knowing that, I've censored myself at times. I still talk about the experiences in our family, but I am much more careful about when/if I use his name. I also try to share misadventures of my other kids so presentations don't just end up sounding like a review of his life.

You know "Bud" better than anyone. Only you can determine the best way to share while still respecting his privacy and integrity.

mumkeepingsane said...

I should just "ditto" Tara. I have struggled with this also. I think in a couple of years I'll have to re-evaluate how I blog about Patrick. It is, after all, his story. I can't separate my experiences from his.

Anonymous said...

You would be missed so much if you stopped writing! Maybe your writing will need to change to make you feel a bit more comfortable, but please don't stop. Look at it as helping others in Bud's honor. And I bet you would miss it too!

MOM-NOS said...

Thank you all (including those who e-mailed privately.) I appreciate your perspectives so much, and am also moved by your kind words. Just to be clear, I'm not thinking about abandoning the blog. (You're right, Kristen - I would miss it too much.) I am just going to be careful and thoughtful, which means that sometimes I may end up being more quiet than usual.

But, really, I can't say it enough - thank you for your messages.

neil said...

I so completely understand what you are saying. I made the decision a long time ago not to reveal my daughters autism to others, especially in front of her. Of course there are times when you have to say something, but we mostly choose to wear her quirky behaviours in public. However, on my blog, even though it's not about autism, I felt the need to share M's life with my readers so they could better understand where I was coming from, so wrote a long post about M and autism which was well accepted. So every now and again, I pop in a story about her, just to help my readers understand a little bit about the condition.