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 NINE: Ultra-Quick Review of Google Helpouts

Still thinking about Reaching for the Stars’ need for more hands on deck, I decided yesterday to investigate Google’s new Helpouts offering.

What’s Google Helpouts?

Real help from real people in real time is its tagline. Helpouts is a new service, a new way of connecting with experts (via video) in whatever it is you need help with.

Except:

Of the dozen needs Cynthia at RFTS expressed to me the other day, only one really seems to be up Helpouts' alley. (She’s looking for a pro bono web designer who knows Wordpress. One of Helpouts’ experts will give “advice on your current website or on how to tweak your current HTML /CSS code” or help you make “small adjustments to your site that are not too time consuming” -- for free. For more than just a quick fix, for-pay sessions can be arranged.) That's not an indictment, though. Helpouts is still a young service. There will likely be more help from more experts coming down the pike.

My advice?

Keep it in the back of your mind (as it relates to using it for business-y purposes.) But take note: the system is set up to easily allow groups of volunteers to staff a particular Helpout. Down the road we may see nonprofits using Helpouts not only for receiving but for giving help to others, as well.

ROUND NINE: Where Are Our Dreamers?

I have a dream that someday we'll have a much bigger, much more focused, and much more effective community tackling the challenges we associate with childhood neurological and /or developmental disorders. And I have a strategy. One that has much to do with mobilizing parents and family members of the millions of kids with said disorders.

To execute the strategy? 

We’ll need to be more specific about who we are as a community and what our dreams are. We’ll need to be clearer about the work it'll take to get from here to there.

RE: the latter, some of my recent posts* have been on the snarky side in that I've called our nonprofit leaders on the carpet for doing a poor job of engaging us parents in their mission-specific work. That'll have to change, too --

Perhaps along these lines:

A few days ago, Cynthia at Reaching for the Stars sent me a wish list of about a dozen of her "human capital" needs, e.g., for a pro bono grant writer. (I pasted her entire list here.) My thoughts when I read it? Perfect. This is just what the doctor ordered. Openness from a leading CP organization about its "to do"s.

How come?

I'm sure a ton of our good ideas for improving outcomes as they relate to CP -- probably a majority -- never become official projects and never get acted upon. What a crime. Cynthia, though, has in a sense brought her would-be projects to life. She's given them forward motion and taken a positive step in the direction of getting them done.

Now, why couldn't the untapped and collective genius of our community-in-the-making help RFTS meet those needs? 

I believe it could. And then some. The same goes for meeting the brainpower needs of the hundreds (and hundreds?) of related organizations out there. In fact, I’d like for each of them to send me a dozen** of their "help wanteds" just like Cynthia did. I'd like to add them to this mind map and then invite our parents to have a look...

And consider pitching in. 

My bigger vision is to create an engine, of sorts, for turning our dreams for our kids into realities. My dreams. Cynthia’s. Yours.

As it stands, the map is a repository of requests-for-help /calls-to-action that some of our orgs have made public over the past eight (8) weeks. It's only sparsely populated and it's lacking in other ways. Do you see, though, how it or something like it could make it easier for us to more fully join in each other's dreams?

What if a million parents could browse through thousands of different "opportunities to help" and work an hour per month chipping and chopping away at them? Advancing our projects in ways large and small. How much farther ahead could we all be then?

*See Perturbed and Everything's Peachy. 

**Or more than a dozen. To inch my own dream closer to reality, I can think of more than a hundred things I'd like to do. I keep a detailed and running list. Many of the items on it could be broken down into small tasks. Hardly any of it would require a rocket scientist to complete...

ROUND NINE: Not Nominated (Oddly Enough) For An Oscar

ROUND NINE: Powering Up, Part I

The way I see it...

You need me. I need you. You two need each another. This could be the beginning of a beautiful friendship. 

Who are you two? 

On one hand, you're the PARENTS of the 14-18 million kids in the US with neurologic and developmental disorders. On the other, you're ORGANIZATIONS of all stripes out there acting on our kids' behalf.

ME? 

I'm both and in-between. I'm a CP parent, first and foremost. I'm also Parents to Projects (P2P) and, as such, my mission is to bring the two of you together -- specifically around work; mission critical work. I want to help our "organization side" get a lot more o' that done.

How come? 

To help us all magnify our impact in the world. To speed things up. To make a ginormous dent in our most pressing challenges and opportunities.

My daughter is unable to use the Net, so, writing /speaking for her...

SHE NEEDS US.

Will you please help me help you? 

I won't take "no" for an answer. I plan to try to be clearer about what I mean by that in subsequent posts.

ROUND EIGHT: No Cost To Nonprofits

Here's yet another offer our cerebral palsy--neurological disorders--brain research--special needs nonprofits SHOULD NOT refuse:

MobileWorks, a crowdsourced virtual assistance platform, is looking to take on and churn out three to five "big projects that can be broken down into smaller tasks"-- exclusively for nonprofit organizations. For free. Nothing. 

The requirements? Projects should:

• involve data entry, data validation, research, photo editing, and /or short writing tasks

• contain at least 1,000 entries, e.g., 1,000 companies to research

• have roughly a 2-4 week turnaround time.

Here's a chance for a relatively smaller budget organization to amplify its impact. For more information, contact me here or at www.facebook.com/parents2projects. You may also contact MobileWorks directly by e-mailing Anna-Lisa: annalisa@mobileworks.com.

Please put your thinkin' caps on!

*  *  *  *  *

Project examples:

• Find the name, address, and founder of a list of 1,000 businesses 

• Digitize a 200-page scanned list of conference attendees 

• Convert 1,000 receipts from different stores into a typed spreadsheet

ROUND EIGHT: My Rx For CP

Not that anyone gives a hoot...

Here's what I believe we could and should generally be doing to KO CP: 

ROUND EIGHT: Everything's Peachy

Here's what I take away from 99% of the online communications I see from organizations operating in and around the cerebral palsy / neurological disorders / brain research / special needs arena: 

Everything's peachy.

You had a great 2013. 
You're right on track for 2014. 
You know just what you're doing. (You're "collaborating.") 
Sure you could use a ton of money -- for what, you rarely say -- but outside o' that?

Peachy.

If I'm reading you correctly that means:

• Your operations are going like gangbusters and need no improving. Your processes are smooth and efficient. As for your programs, products, and services? They're all grand slam home runs.

• The dozens of projects to which you've committed are being broken down into smaller task-chunks and getting checked off -- on time, in every department, to great effect. (That you selected the right projects based on the right strategies in the first place goes without saying.) 

• You're adequately addressing all the "look into" things you and your staff have been hoping and meaning to explore or pursue but haven't had the time to. 

If that's what you're telling me, I'm sorry but --  

I don't buy it for a minute. 

For a variety of reasons. Not the least of which is the fact that so few organizations are as well oiled or productive as they could be. 

I believe you could use all kinds of help. 

Curiously enough, though, your communications never say so explicitly. You show no signs you're in the market for any of the kinds of help I alluded to above. You never say you don't know. You never acknowledge you need more expertise or resources. You never discuss things that flop.

You never let 'em see you sweat. 

That's par for the management and organizational-communications course historically. Remember earlier web sites? 100% PR-filtered and one-way. ("This is what we decided to say about ourselves after we had a chance to deliberate.") I'm not surprised that many of your sites still are. But the fact that I'm seeing the same sorts of patterns with regard to your blogs and Facebook pages concerns me.

How come?

Well, I tend to go along with an observation Dan Pallotta made in his much circulated TED speech from March of 2013, that "Our problems are massive in scale [and] our organizations are tiny up against them."  

Our problems are massive. 

Current conventional CP therapies offer only a 4-10% average gain for any particular individual.* One in eighty-eight children is being diagnosed with autism. We can't afford for our organizations, individually and /or collectively, to be tiny up against our challenges. Not everything's peachy.

What's social media got to do with it? 

I wouldn't go so far as to say that our social media approaches and practices are keeping us tiny. I would say, however, that they're not doing much to make us bigger up against our challenges. And I believe they could.  

And must.

What makes social media special is its two-way-ness. The ability to use it to "engage with" (as opposed to "broadcast to") others. Especially w/ lots of others. A general formula that seems to be emerging for using social media to advance one's mission? Help others help you. Improve your performance by helping smart and passionate others improve their own performance.

Practically speaking, the idea is to (1.) put your true organizational self out there, (2.) tell the world what, specifically, is important to your future success, and (3.) invite people to apply their talents, creativity, and skills to it. How to do these things, e.g., what inducements to offer would-be participants, depends on you and your context. 

My response /call to action:

I'm experimenting with something that could conceivably help your organization "open itself up" to additional help from the outside. Via my Parents2Projects Facebook page and "Calls 2 Action" map (below) I'm trying to get the word out to potential workers / helpers / service providers that there's much important work to be done in our community. 

You may be able to help your organization by telling me what help you want or need. Tell me about projects, would-be projects, or specific tasks you could use some help completing. From the profound to the mundane. Of any size or scope. Shoot 'em my way and I'll see what I can do to connect you with low- or no-cost "people power" to get them done. Please contact me here, or through Facebook.

What's there to lose? Who's to say we couldn't drum up a critical mass of participants and amplify our productivity and impact beyond our wildest dreams?

Create your own mind maps at MindMeister 

*per Dr. Iona Novak from CP Alliance in Australia

ROUND EIGHT: I Commend You

I don't know these days if people are still handing out kudos, or even props for that matter, but I want to -- to RespectAbilityUSA.

How come?

Based on first impressions only of its Facebook activities, I see an organization using social media for more than just fundraising or marketing communications. I see it using social media strategically, too, for doing important, mission-driven work.

In the past 4-6 weeks, for example, RA has issued at least 4-6 unique calls to action. (I know in at least two cases its calls were answered.) It has invited constituents to: 

• participate in a conference call 

• complete a survey 

• submit photos 

• provide pro bono camerawork, and 

• be interviewed. 

Could this mean it actually gets what it means to "be digital" and why things necessarily start and end with the constituent? 

In any case, RespectAbility's Facebook page strikes me as a good environment for knowledge; a good environment for learning. There's a working community in the making there. And since at this point I can only imagine giving its leaders a "smartie" award for productive Net behavior -- I wish 'em well. 

I hope other nonprofits working in and around the CP and special needs realm take note.

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 SEVEN: Imagined Interview About Parents To Projects (P2P)

We sat down a few weeks ago for a Skype conversation with Keeler Cox. Keeler is the father of a twelve-year-old daughter who has cerebral palsy. For the past couple of years, he's been drawing on his business background to raise questions about the possibility of "managing CP out of existence."

Our focus? Parents to Projects (P2P): an experiment aimed at helping the broader children's neurological disorders community pick up the pace and be more productive. 

*  *  *  *  *

Interviewer: Tell us about the origins of P2P.

KC: Well, there are lots of organizations -- a surprising number -- working directly or indirectly on behalf of kids like mine, trying to make things better. I'm grateful for all they do. Unfortunately, though, they have long, long, long ways to go to even come close to fulfilling their missions. I want things to move faster. P2P is a product of that. Specifically, it represents an effort to get our organizations more help.

Interviewer: How did you zero in on "work" as your subject matter?

KC: I'm sure it has to do with my believing that, even if funding in our neck of the woods stays where it is, we still ought to be able to manage our existing productive -- i.e. work -- resources better.

Interviewer: And accomplish more as a result?

KC: Yes. 

Interviewer: What would that do for us? How would that help our community?

KC: My hope (and my hypothesis) is that we'd all benefit. Individual organizations would move closer to fulfilling their missions. And there'd be multiplier effects. We probably couldn't reach our goals twice as fast by doubling our collective work output. But if our orgs could attempt more things -- a lot more things -- at least we'd learn what doesn't work faster. That'd be valuable.

Interviewer: What kind of work are you talking about?

KC: All the stuff organizations commit to doing in their efforts to achieve their goals. From the biggest projects to the smallest tasks. From the experimental to the mundane. Businesses have historically been better at specifying what that stuff is. Nonprofits, government agencies, individuals and multi-stakeholder networks, on the other hand, have generally been poorer. 

Interviewer: In other words...

KC: They're not managers first. Deploying people and other resources to tackle what's on their "to do" lists isn't their forte.

Interviewer: Why don't they look for help?

KC: I could only speculate. What really matters, though, is that a lot of potentially valuable work isn't getting done; stuff's falling through the cracks. That's not only unfortunate -- selfishly, it doesn't help my daughter -- it may also be unnecessary.

Interviewer: Why unnecessary?

KC: Because I believe the resources our organizations need are out there waiting to be mobilized.

Interviewer: How does your P2P concept tie in?

KC: One thing I'd like to try via P2P to do is help organization leaders become better HR managers, in a sense: more aware of the human resources available to them; better at attracting and accessing people who can help them work through their challenges. There's a sizable talent pool out there that I believe could be better tapped.

Interviewer: Where? Who?

KC: For starters, there are 14 million children in the US battling some type of neurological challenge. Their families. Their parents. No doubt many are tapped out financially and otherwise. But imagine if even a portion of them could muster up the energy to contribute an hour a week to helping our orgs advance their various causes, either voluntarily or for cheap. What would our ecosystem look like a year from now?

Interviewer: And P2P would address that how? 

KC: Generally speaking, by using the power of the Net to match organizations' work needs with parents and other service providers, by cultivating a kind of talent marketplace. Not unlike an industry-specific Monster.com in some ways.

Interviewer: Sounds like a good place to stop.

*  *  *  *  *

We encourage organization leaders and parents alike to check out Keeler's Facebook page to get involved: www.facebook.com/parents2projects.

ROUND SEVEN: Follow The Bridgespan

Here's something a little different stemming from our Parents to Projects (P2P) program. An opportunity -- not for parents to help an organization that's working on their behalf, but -- for leaders of disability organizations to help another organization that's working on their behalf. 

Confusing? 

Follow me: 

The Bridgespan Group is a management consultancy that serves nonprofits. It regularly conducts polls and surveys. The reason being? Bridgespan believes the more insights it can gather about its constituents or customers, the better it should be able to increase its own impact. By "increase its impact" I mean help organizations (like the many nonprofits that make up our community) become more effective. 

Their unstated proposition: If you nonprofit leaders will tell us about yourselves and your organizations by voting in our polls -- if you'll go to work for us, in other words -- we'll do our best to repay you down the road. How? With tools and advice: better ways of doing things; better ways of running your operation; better ways of trying to fulfill your mission. That's the inducement.

I'll throw in two more -- one that's hypothetical-theoretical and another that's more immediately practical:

• I doubt if Bridgespan has a clue about our community. What if, however, it were suddenly deluged with survey and poll responses from us? Maybe it would then pay us some attention, keep us in mind, or make concerted efforts to serve us? 

• If you as an organization leader were to take a few minutes to share your opinions here, at Bridgespan's site, you might well learn something valuable about gathering constituent input. (which you could then conceivably apply within your organization)

Either way, in my opinion our nonprofits would do well -- very well -- to follow their lead.

ROUND SEVEN: It's About The Work

What do I read into UCP's innocent-enough-looking "Digital Communications & Marketing" internship listing? To me, it's one way the organization has chosen to communicate to the world that it could use a little help. 

What kinds of help? The kinds humans in marketing departments typically give. They: write; read; organize; search the Net; stay on top o' things; post stuff on Facebook. UCP assigns those fancier names. But I'd venture to guess that thousands of parents of disabled kids -- if not tens or hundreds of thousands -- would find the work rudimentary, if not elementary. I'd also guess that UCP has more of it than it could rightly imagine. 

Hypothetically: 

What if you're a parent with aptitudes in these areas who'd like to help, but who couldn't fill the position as circumscribed? What if you were to learn today that the position's already been filled? Case closed in your mind? 

I say if you believe in UCP's mission (it's trying to open doors for people with disabilities) -- don't let those things stop you: 

• UCP's looking for help in D.C. but you live in North Dakota? This is research and communications work. I'm sure a percentage of it, maybe even a large percentage, could be done from a distance. 

• The internship is "not for pay" but you need to be compensated? UCP has previously offered small stipends for transportation. Maybe it would pay you small sums for services rendered? 

• You're not a polished or published writer? You don't have an English degree? So what. Maybe rough but well organized drafts would be acceptable.

We're all learning how to unlock the benefits of the Net and what It could conceivably do for knowledge. Nobody has a corner on good approaches to orchestrating work. I believe we parents and the organizations working on our behalf owe it to our kids to explore all avenues. Like the ones above.