The Lives And Times Of Our Ideas

Dear Michele:
 

About your September 09 blog post where you make the case that we should classify cerebral palsy as one of a handful of conditions that may result from an Early Developmental Brain Injury (EDBI)...

I say bravo. Thank you for:

1. bringing the issue to light*;
2. challenging your readers in longer-than-140-characters form to use their noodles;
3. questioning the status quo and continuing to push to make things better.

I think you've hit on an important issue. And I'll be on the lookout for what happens next. Will AACPDM pick up on it? Will your proposal make its way to a decision? If so, will we be able to look back years from now on said decision and judge it to have been effective? That last would be no small accomplishment.

Effective decisions necessarily take into account the effort involved [Is the time, trouble, expense, etc. involved in making it greater than what the decision merits?], the timing [Can it be made in an acceptable time frame?], the yield [Will the decision be faithfully and adequately executed?] -- not to mention quality considerations. [A high-quality decision is based on relevant facts, assesses risks as accurately as possible, and rigorously debates alternatives.]

I'm not sure our community is equipped to tackle all that. At minimum I believe we'd have to develop new capabilities and means, including ways to involve parents (think "patient engagement," "patient-centeredness") like the ones who've been commenting on your post. Before we dive in and decide -- haphazardly -- things should be thought through.

Or maybe not. 

You stressed the importance of information pipelines. I understand where you're coming from, but I also don't believe that knowledge really flows in pipelines like we've always supposed. Knowledge is more a property of (messy) networks.

A nice upshot of that is that you don't necessarily have to wait for somebody else's seal of approval on this matter. If your framework helps you organize and guide your thoughts and actions as they relate to caring for your daughter -- go ahead and use it. Write more about it. Tell others how it works. Be selective in your use of the term "cerebral palsy." Trust that others in your network will follow suit, i.e., that your framework will catch on organically. I'll try to be more careful myself.

EDBI Daily Living is a heck of a lot clunkier than your current title, but maybe you should consider it or something like it?

Keeler

*I'd be hard-pressed to say how or when the term "cerebral palsy" has helped my daughter in her lifetime -- which began, coincidentally, on September 09. [2001]

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.

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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 THREE: What CP Parents Are For (Part C)

The next questions for leaders of CP-facing orgs become: How can you capture the passionate participation of CP parents? How do go about making better use of their know-how and know-what to get much needed knowledge work done? I'll suggest a general answer or two herein. In Part D, I'll get specific.

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The Net. The Net. The Net. 
Need I say more?

When I say "the Net," what I really mean is our whole digital infrastructure. And I tend to make a simplistic distinction: 

On the one hand, I think of technologies and related practices that have to do with accessing and attracting resources. They're what most people probably think of when they think of social media. I more or less associate them with online communication and selling or fundraising. As for their roles in finding expertise and getting things done? They enable organizations to "selectively" tap into the world's intelligence, i.e., to find in the masses exactly the (small number of) knowledge or other resources they need.

To really drive performance rapidly to new levels, however, it's argued by the likes of too-many-management-consultants-to-try-to-name that organizations need to provide people with tools, resources, and incentives to mass collaborate. (Instead of social media think social production.) Here it's the use of "collective" intelligence -- the pooling of many small and incremental community contributions into useful bodies of knowledge -- they're touting.

Our own CP nonprofits provide us with examples of the latter. Two that jump right to mind: (1.) Michele Shusterman's / CP Daily Living's use of a Change.org petition platform in attempt to get United Cerebral Palsy (UCP) to change its name* and (2) Reaching For The Stars' use of blogging, e-mailing, and online contact forms -- in combination -- to enlist parents and physicians in successfully securing language in the 2013 Appropriations budget for specific Cerebral Palsy research funding. My "A Tale of Two Hope Machines" series also covers some of UCP's successful forays.

More about tapping into selective (Part D.1) and collective (Parts D.2 and D.3) intelligence to come.

I'd say we're just scratching the surface as it relates to taking advantage of the hidden talent out there. And I don't think it'd be unfair to there's way more social media than there is social production. The latter is difficult. Choosing projects that are worth pursuing, having well-formed purposes, clearly articulating the benefits to community members to contributing, etc. -- these are tricky propositions. 

If our orgs passionately want to improve and get better, though, they'll want to explore and master all of the above. 

*359 supporters have signed to date

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.