8 Social Media Pointers For Parents Of Kids With Special Needs

They say that the Internet is making knowledge more accessible than ever and aiding us in our abilities to work together -- and that those things should be blessings. So how can we parents use it to our kids’ greatest advantage?

Here are some things that occur to me:

We can work with and through those organizations that are working on behalf of our kids. We can help them help us.* (Here I mainly have in mind our health, advocacy, research, human service, and education nonprofits.)

• Take their polls, surveys, etc. Health care is being redesigned everywhere to be more patient- and family-centered. There should be significant value in telling organizations and institutions who you are and what you think. The more demographic info you provide, the more questions you answer, the greater your participation in focus groups, the better. EXAMPLE: To promote and accelerate research, the CP Research Registry is encouraging parents to enroll their children who are diagnosed with cerebral palsy at www.cpregistry.org. 

• Use their platforms and creation spaces. Opportunities to do things like ask or answer questions in forums, comment on blog posts, and add wiki content are opportunities for you to learn and contribute while you simultaneously shape and improve their offerings. An EXAMPLE of an active community? Mommies of Miracles on Facebook, the “world’s largest virtual support group of mothers of children with exceptional needs.” 

• Exercise your citizenly rights. Many organizations make it as easy as click--click--click for parents to communicate with their elected officials on legislation or otherwise voice their opinions on policy matters. EXAMPLE: Vote 4 Autism is an advocacy campaign of The Autism Society. Its “Take Action” links let you instantly let your representatives know where you stand.

Organizations can be potent forces but they don’t by any means have a corner on good ideas, creativity, and the like. The beauty of our new digital infrastructure? It gives us opportunities to try our own formulas: for finding and attracting resources; for crafting solutions that begin and end with our own, one-of-a-kind kiddos. 

• Approach things the way an organization does. Use low- or no-cost social media to blog, tweet, or post your own original content. Accumulate followers. Raise questions. Give advice. Become a force for good in your own right. Take Michele Shusterman of CP Daily Living for EXAMPLE. Michele went from being only [sic] a mom -- to a blogger -- to a strong and consistent advocate for the CP community. 

• Form your own grassroots communities. Take things a step further and form groups around specific challenges or opportunities. Make something bigger and weightier happen by working together. An EXAMPLE of a grassroots Facebook community: Parents of Kids with Neurological Disorders. (FOOD FOR THOUGHT for Child Neurology Foundation and Children’s Neurobiological Solutions Foundation: How could you support the efforts of said community in ways that would also enhance your own organizational value?)

We'll stand a better chance of advancing our kids’ various causes if we'll take care along the way to take care of the Internet itself, i.e., cultivate its good health. Practically speaking, I’m suggesting we should:

• Help make information reusable and easy to find. How? Simply by doing things like tagging (labeling) and linking your work. 

• Document the good stuff. Summarize what you discover, what you hope, what you fear, etc. and put it out there in formats that can be readily consumed and passed around. Add to the collective. 

• Make it a good environment for knowledge. Your job as a parent is to do the necessary work of caring for your child and her or his various communities. As it relates to working online, I say: Don’t intentionally mislead. Don’t make personal attacks. Don’t be close-minded to new ideas. Do first check your facts. Do do well by your son or daughter.

*  *  *  *  * 

Has this been helpful? What am I leaving out? Please let me know.

BONUS POINTER: For some other ways you can help your nonprofits help you, here’s a collection of big and small “calls to action” -- specific requests for help -- some of our special needs organizations have been making over the past couple of months: www.mindmeister.com/362961613/_. Take a look!

*Another way of putting it, hearkening back to 1961: Ask not what our nonprofits can do for you, ask what you can do for our nonprofits!

ROUND EIGHT: Perturbed

An open and off-the-cuff letter to anyone who's "in the know" about the innermost workings of any of the following: 

• One Mind 4 Research 

• The New York Stem Cells Foundation 

• Institue for Community Inclusion 

• The Allen Institute for Brain Science 

• American Brain Coalition 

• Cerebral Palsy International Research Foundation 

•  American Association of People with Disabilities

• Weinberg Family Cerebral Palsy Center* 

*  *  *  *  *

Dear Sir or Madam:

Whenever I visit your organization online -- either at your site or on Facebook or Twitter -- a part of me gets perturbed. 

Irked. 

The reason being? 

I'm either a constituent or would-be constituent of yours. And you're not asking me to help. 

You're not: 

• gathering demographic info about me, having me take surveys, funneling me into focus groups, or designing your processes around me; 

• building online platforms that might enable me to help you address your key challenges and opportunities; 

• taking advantage of whatever professional skills I may be able to share (for little or no remuneration) in service to your cause. 

What you are doing, on the other hand, is asking for money. And telling me about your accomplishments. 

Me and at least 14 million others like me.**

What should I make of all this? My getting perturbed -- is this just a me thing or could it be that you:

• have a more inside-out than outside-in perspective, and "being digital" in, say, the Mark McDonald or John Seely Brown sense isn't your m.o.? 

• are already hitting your goals and accomplishing all you want or need to accomplish?

• want to hit home runs and the one- or two-base hits you believe could result from more fully engaging with constituents isn't worth it? 

• see us only as walking wallets? 

• are the expert and you intend to keep doing the same things that got you there? 

• don't possess the know-how you'd need to move your organization in these directions, or the time to learn? 

• are managing under a board of trustees that's asleep at the wheel? 

I hope to find the answers in 2014. The earlier the better. Until then, I'll "make of all this" an opportunity to: 

• keep learning 

• raise more questions like the ones above

• encourage the leaders of our neuro disorders /special needs organizations to think about delivering more value this coming year.  

I want things to go faster. 

I want all us to solve our problems -- pronto. But by the same token I'm with Dan Pallotta when he says:

Our problems are massive in scale. Our organizations are tiny up against them. And we have a belief system that keeps them tiny.

He has his own interesting ideas about how nonprofits might scale up and become less tiny. 

What's my answer-in-the-making?

I happen to believe that there's a lot of latent talent, creativity, and energy out there, i.e., brainpower, that our organizations could and should put to productive use to amplify their impact. Marketers of basketball shoes, online booksellers and reality TV shows do it. Shouldn't our community be able to do the same?

So, specifically to the leaders of the above mentioned orgs: 

I hope you'll be mindful of the fact that you /we need to do more, and be open to the possibility that you /we may actually be able to deliver it. I challenge you to look at your own management-belief systems. These are management challenges I'm talking about. These are management answers I'm alluding to.

*  *  *  *  *

*The list could go on and on.

**According to Children's Neurobiological Solutions Foundation, there are "more than 14 million children living in the US with one of more than 600 different neurological conditions."

ROUND THREE: What CP Parents Are For (Part B)

Maybe you've already associated this post's title with Wendell Berry's "What Are People For?" 

I got around to reading his (old?) 1990 essay about a month ago. It'd been on my radar for years and, well, Mr. Berry didn't disappoint. But he also didn't exactly answer his own question like I had hoped and having read the piece hasn't made answering mine -- "What are CP parents for?" -- any easier. 

No biggie, I suppose. I've read enough of his other writings to know that a major part of his answer would revolve around...

WORK. 

More specifically: I know he believes that people are for doing "the inescapably necessary work" of caring for their communities. They're (we're) for doing the kind of work that requires, among other things, a deep appreciation of context and much giving of intelligence, affection, and skill. 

Not coincidentally, I believe that good work -- think TLC, and lots of it -- is just what our CP community needs. 

What kinds of work? 

Brain work. Knowledge work. In 57 varieties.

I'm talking about specialized work that requires the specific expertise of people who probably already think of themselves as knowledge workers, and also about generalized work; work that could be performed by most people, many of whom probably wouldn't consider themselves knowledge workers. I think of regular old parents, for example, whose greatest hidden value may lie in the things we learn in the daily context of raising kids with CP.

Two things we CP parents have going for us are that (1) there are lots and lots of us, and (2) we have what matters most: passion, the desire to help -- in many cases without expectation of extrinsic rewards. 

Surely those aren't being used to their fullest. 

If we CP parents are for doing good work, it follows that leaders of CP-facing organizations have an opportunity -- maybe even an obligation -- to put us to work. According to many leading thinkers, that's management's JOB ONE anyhow. It's no longer, they say, about being the big brain of the organization and cascading your brilliance down and out to less-informed, less-wise others. That no longer flies.

What does fly has a lot more to do with capturing the participation of passionate people. (Here I'm talking broadly about tapping into the expertise, creativity, energy that lies outside of your organization, but the same idea applies to the people within it.) This is part of the new formula for success, the new way to solve new problems as well as find new solutions to old problems. It's a way to make your organization more indispensable and to amplify its impact.

There could be other more subtle benefits to putting CP parents to work, as well.

When you give people opportunities to chip in, you empower them. You give them chances to develop their talents. You increase the likelihood that good ideas will emerge. You build and inspire a sense of community. You bestow dignity. (Wendell Berry: "Our greatest dignity is in employment.") At a time in which many CP parents are financially tapped out and unable to contribute cash to the cause, and where opportunities to make a difference via the political process are limited, those sorts of things may mean even more. 

SO: 

To the leaders of CP-related organizations of all stripes, in all sectors, the opportunity to tap into what CP parents have to offer is yours. If you choose to ignore it, I wish you the best. I would also hope -- and I would bet -- that others will eventually see and seize it. 

As NiloferMerchant, the Jane Bond of Innovation, observed: "Doing work these days no longer requires a badge and permit. Anyone -- without preapproval or vetting or criteria -- will create and contribute." CP parents will take matters in their own hands with or without you. More and more of us are realizing that it's not just the smart people over there who can bring about progress. Reaching for theStars and Children's Neurobiolgical Solutions didn't to my knowledge ask United Cerebral Palsy (UCP) for permission before starting their own organizations. They saw unmet needs and just did it. 

That's the wave of the present. It's what the Mercers, the Deloittes, the McKinseys, the Gartners, and others in the management consultancy world have been preaching for some time. Their messages are readily available for consideration.

ROUND TWO: What CP Parents Are For (Part A)

In the course of trying to get to know some our CP advocacy/ education/ fundraising orgs over the past several months, I've been making mental notes about their conceptions of the role of parents. What do they think CP parents are for, I've wondered? Their answers, I believe, could hold keys to how swiftly or slowly we all move in the direction of blasting CP.

My curiosity was piqued last fall when I revisited United Cerebral Palsy (UCP) for the first time in years. I had come back -- I should disclose from the get-go -- with low expectations. My preconceived notion was that there wasn't much for us there. To my surprise, though, I came across all kinds of good stuff, some of which set me off in interesting new directions. It struck me as an improved UCP. For the most part.

A few things still bugged me: 

• I found the site hard to navigate. I remember wondering: Is there a section tailored to parents and what they'd want to know? What kind of maze must one walk through to get there? To this day, I don't get why there's not a straightforward connection from UCP's home page to My Child Without Limits.

• I saw signs of both a "push" mentality and an outmoded view of expertise. UCP came off as if it authoritatively knew what was important and had -- once and for all -- rounded up the answers and passed them on to us (uninitiated and passive) consumers. 

• Please refer to your local affiliate. Headquarters seemed to go out of its way to avoid having to interact with parents. I personally found customer service `a la UCP to be anything but warm and fuzzy. 

An overarching impression was that UCP-National didn't need anything from me or my daughter. Which I found offensive. Why wouldn't our experience matter? Why didn't they see my daughter in her particularity, or care particularly about her? It made no sense to me on any level. ('specially after having come from the business world, where a P&G, for example, goes to great lengths to understand its customers and prospects in context, or where Japanese companies have always have done the same) I concluded at the time that UCP viewed me -- to the extent that it saw me at all -- as nothing more than a donor or voter to be. 

That was close to a year ago. Now I see things differently. My views are more nuanced. I appreciate more of what UCP's doing and where it's coming from. 

But I have started seeing other organizations. Namely: Children's Neurobiological Solutions Foundation. Let's Cure CP. Reaching for the Stars. CP Daily Living. I hesitate to lump the four together. Also, I'm reluctant to generalize about the nature of their work, what they believe, and -- to the main point of this post -- how they view CP parents. I will venture to say, though, that the narrative they're each in the midst of creating and telling seems to be one and the same. 

It goes more or less like this: 

Signs are pointing to the possibilities that CP may someday be preventable, treatable, and even curable. It'll all ride on the quantity and quality of work we can collectively pull out of certain smart folks working in certain scientific and medical fields. Those folks, however, aren't being adequately funded. In response -- in the words of Michele at CP Daily Living -- "the US cerebral palsy community is working hard to organize and improve financial support..." 

Where do we CP parents fit into that equation? What are the options for helping implied? 

It follows that we can: get educated about what's happening...spread the word...donate and/ or raise monies...become politically involved.

Unlike UCP, these other four organizations are headed up by parents of kids with CP.  And surely they differ from UCP in other ways  -- in their respective means and ends, their degrees of focus on CP, their relative emphases on research, etc. If push came to shove, I'd guess that they'd claim to be more specifically in touch with CP parents' needs and wants than UCP, and that they're the truer champions of parents' interests. Reaching for the Stars (RFTS) goes so far as to describe itself as "the only global, parent-led, pediatric nonprofit Cerebral Palsy foundation."

Nevertheless, I'd say the majority of their "asks" of parents still revolve around raising funds for research. The conceptions they have of the role of parents in our fight aren't substantively very different than UCP's.

Where am I going with this?

I'm not saying it'd hurt to have a lot more loot ($) coming into the CP sphere. No doubt that could help a great deal. Lest ours become a "we're handcuffed without it" ($) movement, however, I'd like to suggest that there are other things our advocacy/ education/ fundraising orgs could be doing in parallel. Those other things have to do with taking an even more expansive view of what we smart parents have to offer and then smartly putting us to work. Our large numbers + our gumption + today's social technologies give us unprecedented opportunities to get things done -- at relatively low costs -- and we all should be taking fuller advantage.

More along these lines to follow.