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.