I am sometimes asked what it feels like to share so much personal information on this blog. After years of raising a child with special needs, I can honestly say that privacy is something I barely remember.

I know lots of special needs parents who probably feel the same way. It didn’t happen overnight. I was a private person once. But like a the proverbial frog in a pot of water who doesn’t realize that he’s slowly being boiled, my sense of privacy has slackened without much notice.

For me, it probably started with a Home Visit, the sine qua non of childhood intervention. A nurse, a social worker, or an intake coordinator, likely from Early Intervention or other state program, came to my home, sat next to me on my sofa to ask a few questions. For this visit, I probably picked up the house, or at least the living room, and maybe even put on a pot of coffee.

Fast forward a few months or years, and I find myself giving out a key to anyone who asks for it or simply yelling “come on in!” whenever I hear the door ring. After the 100th visit from the speech therapist, occupational therapist, physical therapist, developmental specialist, nurse, school psychologist, agency evaluator or personal care attendant, I realize I have stopped brewing coffee, stopped running around to pick up, stopped slapping on some lipstick because I just can’t keep up the facade, and frankly, I realize that they just don’t care. I tell myself that they’ve probably seen much, much worse than that pile of unfolded laundry on the dining room table, and anyway, it’s clean, so it’s nothing to be ashamed of.

It’s not only in my house that my sense of personal dignity gets “loosened up.”  The hospital stays are particularly challenging to maintaining a sense of dignity. I find myself woken up at 6:30am by an army of white-coated people from an uneasy sleep in a fold-out chair next to my child’s hospital bed. Wiping the drool from the side of my mouth, directing my comments off into a corner so as not to knock them unconscious with my morning breath, I curse myself for not sleeping with a bra on under my pajamas while I pat my head, trying to visualize how bad my case of bed head is. But at the same time, I just don’t care.

I have even gotten used to having people in my proverbial “space” or as my younger child would say, in my “business.” I answer questions about my son’s health and development, my pregnancy and delivery, my stress level, my income, my relationship status, my choices, my actions and my inactions. It feels like I am being judged, and in fact, I am. It is an invasion of privacy but I offer the info willingly. It is the price I pay in order to receive the services and resources that will help him thrive.

The details of my life, my story, becomes a currency that I offer willingly in the service social change and reform as well. In meetings with political staffers, on task forces and in board rooms, I share some personal details with no regret because I have learned that while data drives the discussion, it’s the personal stories that keep everyone at the table. I could talk about theory and percentages until I’m blue in the face, but it’s often a small anecdote that drives the point home.

Even out here in the blogosphere, it’s the stories that connect us even though we might have never met.

So this week, when I invite several personal care attendant candidates in for interviews and host two medical students to teach them about raising a child with complex needs, or even when I hit the “publish” button on this blog post—it won’t feel weird. I’m used to it. Come on in.

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. Thanks for welcoming us. My life is enriched by your willingness to share your thoughts and experiences so vulnerably.

  2. Só a troca de informações e o compartilhamento de experiências podem ajudar nossos filhos a terem uma vida mais produtiva e com qualidade, a segregação só os faz mais vulneráveis por isso não mim importo com olhares nem comentários quaisquer que sejam o que importa é o que estou fazendo pelo meu filho! parabéns mi casa es su casa!

  3. I still stress when folks come in… like last year when DSS was coming to do a home visit.
    What began as spring cleaning, (it was needed anyway but the scheduled visit created a date to have it done by) ended up with my insisting my husband paint the living room and dinning room.
    So that was nice… and it did feel good to be all spruced up!

    Truth be told … after almost 20 years now of:
    Cleaning, baking muffins, and lighting scented candles, Id rather come to you.
    Partly because I can and partly because I want my privacy back!
    Translation… the piles that have crept back into my house (paperwork, things to be sewn, things to pass along, and things I need to just purge) are my own private Idaho.

    1. Yes, sometimes I too use the visits as a motivation to clean up! And also I sometimes wish we could meet somewhere else. But you were the one that taught me the value of having folks see our kids as whole people, not body parts, not labels, and that’s best done at home. The things we do!

  4. I have enjoyed reading your blog. I have a son who’s now ten with PDD/ADHD, anxiety and impulsivity a great concoction of greatness and capabilities. I am looking at sitting down and just working on my care map of Christian. Would you be willing to send me a blank copy?

    I remember fondly the many individuals that entered our home and our lives. Who were patient and kind and some not so nice. We’re still on this journey and the one thing I’ve learned is that there will be many more. I have started to have his teachers write him a small note on the book “Oh the Places You’ll Go” by Dr. Seuss, so that when he is older we can all look back and share his teachers thoughts of him. It’ll also give me a glimpse of what once was. Thank you for sharing of yourself and your son-Gabriel and family.

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