Mi casa es everybody’s casa

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 daughter 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.

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Durga Tool #9: My Care Map, or the picture that tells a thousand words

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  – my nominee for patron saint of special needs parents.

About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram which I shared with them:

© Cristin Lind, 2014. For permission to use, please click here

The crazy diagram is pretty self-explanatory, but just in case, here’s a little more info. In the center, the “G” is our son. It’s the first initial of his name. Around him, “our family” represents me, my husband and my daughter. Naturally, he’s not always the center of the universe, but for the purpose of the talk I was giving, he was.

Around all four of us radiate areas of need. From each of those areas radiate pieces of support (in the “bubbles”) and barriers (in the badly drawn doors).

  • Health: Any medical provider or service typically grouped in the medical silo; anything paid for by our primary or secondary insurance; medical equipment; pharmacies and medication–it’s all grouped here.
  • School: This is any service that impacts learning or is provided by our school. Physical therapy, speech therapy, and occupational therapy could be considered health supports, but since they’re provided at school, they’re included here. The bus driver? Believe me, when I’m a half-hour late for work because the bus is late, the bus driver is at that moment as important as a surgeon.
  • Developmental/assessments: These are the services, paid for by insurance, that support our request for adequate educational intervention. Besides there, these silos don’t talk much to each other.
  • Info/advocacy & leadership: These are the folks who tell me what I don’t know, teach me what I need to learn, raise my consciousness, help me lobby for system change, or who lobby with me.
  • Recreation & community: When it comes to free time, my son needs help making and creating friendships, finding activities, and having fun.
  • Legal & financial: This is kind of funny section. It might give you the impression that I have actual assets. Not quite. But the day I do, I know who to call.
  • Support: These are the resources that directly support me, my husband and my daughter when it comes to supporting my son.

The night I sketched out our complex web for the first time, I felt accomplished. I could see all the connections that I was managing. No wonder we had so many piles of unfolded laundry! I also felt called to action by how segmented and complicated the system was. It strengthened my commitment to be an agent for change–and that very night I blogged about it, a blog piece that I believe led to a job offer shortly thereafter.

And I was saddened by how small the area representing recreation was compared to health and school. I vowed to I’d devote some time to fixing that. (It was the reason I pursued the inclusive sports and after-school programs I wrote about this spring.) Every time I showed it to another family, they immediately got it, too, and often decided to make their own.

When I presented this to the group of doctors, they got it. Within a day I heard from two of them who asked if they could share it with colleagues. Something about this spider web of resources communicated a complexity that they were unable to express.

Next I shared it with our own doctors: our pediatrician, some specialists,  even a medical student who started following our son’s case. I can’t say for sure, but it felt as if they treated me with a bit more respect when they could see how many balls I was juggling. One doctor helped me prioritize upcoming appointments once she saw what we were dealing with. In one case, one said that they felt humbled to realize that all this time they considered themselves so central to my son’s care, yet there were so many other people in his life who were doing just as much.

After that, the care map took on a life of its own, creating ripples that were unplanned but very welcome. It’s become an effective tool to share with other doctors, providers, policy makers, advocates and quality improvement specialists.

But mostly I want to put it out into the blogosphere in the hopes of hearing from families:

  • Have you seen anything like this?
  • Do you think you’d ever consider making one?
  • Assuming that you would tailor it to suit you, would it be hard or easy?
  • Do you think it would help? How?
  • If you’re a provider, family member or friend of someone with special needs, what might their Care Map teach you?

Please let me know. How do you tell your story when you don’t have 1000 words?

I get by with a little help from my friends

Several years ago at the playground of our integrated preschool, a bunch of my mom friends were discussing the pros and cons of the kindergartens they had the option of sending their kids to the following year. Since my son had only one choice the following year, the self-contained classroom that I could either take or leave, I observed silently and jealously from the sidelines. When a good friend declared that all the trouble of touring and choosing an elementary school was “just the worst,” I vividly recall excusing myself to go help my son on the swings. Our friendship was never quite the same after that. I checked out. It just hurt too much to be so invisible.

As someone raising a child whose special needs impact his ability to sustain friendships with typical peers, I spend a lot of time thinking about his friendships and how to support them.

I spend less time thinking about supporting my own. I’ve come to rely on a trusted and loving circle of friends and extended family. I’m so grateful for them. John wrote it and Ringo sang it best: Oh, I get by with a little help from my friends.

When I reflect back on the past 10 years, I can see that not all friendships made it. That’s nothing particular to special needs parenting, or even parenting. Not all relationships last forever.

Some recent research shines a light on why several of my friendships couldn’t go the distance, and how I might have changed that. It also explains why some of my relationships have gotten stronger, and what might have made that possible, too.

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

Interviewing 40 parents of young children with disabilities, the researchers set out to answer the question of whether social relationships are always a help, or whether they might be a hindrance. Here’s what they found:

  • Relationships with spouses/partners and their other children were on the whole positive.
  • Relationships with friends, extended family and colleagues was more often characterized as negative.

There’s much to explore and discuss. But it was the factors that the researchers attributed this difference to that really caught my attention:

Since parents of CWD [children with disabilities] often receive training on accepting and working with the CWD, and siblings can receive similar trainings and support through schools or sibling networks, unrelated social networks may need sensitivity training to help families raising CWD feel accepted. Disability advocates have made broad based efforts to promote acceptance of differences (e.g., billboards, public service announcements, advertisements in magazines); however, individual level trainings may be warranted.

In the weeks that have passed since I first read this, I’ve mourned a little for the friendships that didn’t last mostly because our society doesn’t yet raise folks to be naturally accepting to disability.

I realized too that when it comes to all I know about inclusion and celebrating difference, I was not born this way. I had to learn. So did my husband and my daughter and my mother and my father. And if I wasn’t born knowing this, how can I expect that others would?

The researchers closed with this cautious recommendation:

Parents and family members of CWD may benefit from educational interventions regarding how to teach others in their social networks about disability issues.

OK, then. We need to be taught how to teach others about disability. Looking back on my friendships that have thrived over the past 10 years of raising my child, I can see what made a difference. Connecting with other special needs families is a natural step, as they too are being taught to accept my son when they learn to accept their own children’s differences. Writing this blog has given me the chance to share my experience with friends and extended family whose own knowledge and experience delights me. Modeling my own appreciation for my son’s differences with his peers (and my own) has also made a difference. Making the effort to include him in our community has also given folks a chance to learn something new.

What has worked for you? Which friendships have thrived and which have withered? What are some things you’ve done to strengthen friendships during early childhood? What techniques should we start to talk about as a community?

And while I’m at it, let me say to all my friends: Thank you. I’m so grateful that you’re in my life.