A friend said to me the other day “You spend an awful lot of time on Facebook and Twitter. What are you doing on there?”
This is my response:
It was simple at first. I got an email asking for some advice. I replied.
And then I got this back:
I am really completely floundering in all this…the bottom line is that I am really just trying to figure this all out on my own. Every time I reach out to our current “team” from Early Education they simply tell me what a wonderful job I’m already doing. Well, that’s nice to hear, but it’s not enough. I KNOW I’m not doing enough. I need someone to give me some tools, some ideas, something that gives us a direction.
We haven’t really established a doctor who understands the issues and is working with us. We have pretty much only taken him when he is ill. We now have a medical card for him, but don’t know how to begin choosing a doctor…I don’t want to have to go through trying a bunch to find the right one. But I know I need to bite the bullet and find someone who can work with us.
I’m rambling now. Sorry. Bottom line is, thanks for replying, and thanks for listening. Sometimes I feel that I should apologize for taking up people’s time because I know what a precious resource that is.
She needed help.
She was on her own.
I know this feeling all too well.
I wrote back:
Keep rambling. Yes, we all have things going on. But that’s why we’re here to support each other.
I know that floundering feeling. Can I help by asking some friends is they know good docs in your area that have worked with kids on the spectrum? I have some good connections.
I know that insurance reform is happening where you live, so hopefully you’ll have some relief there and access to more home help. It sounds like that’s what you need the most right now. Let’s see how we can get you that .
Keep talking to me and others. Please. And please remember to try to take care of you too. Just a few moments for you, with some peace and quiet.
Let me know if it’s okay to ask around. Anonymously of course.
So I did.
I posted it on my blog Facebook page. I sent out a tweet. I wrote an e-mail or two (or three or four).
And then it happened.
looking for autism folks in lincoln, nebraska and wichita, kansas for a couple of mamas in need of local connections / guidance. anyone?
And 19 comments followed. All parents in those areas looking to connect and offer help.
Then I tweeted this:
Which turned into this:
@xtremeparnthood @will2455 Thank you! I’ll let @Diaryofamom know you are in Wichita, KS and would like to help!
In the span of just a few hours, this mom who previously had no help or support now had a doctor to call, a support center to connect with, and the name of a person working on insurance reform in her state to help guide her.
This is what it’s all about.
This brave mother reached out to someone she had never met. Instead of turning inward and losing hope, she spoke up and said “I can’t do this alone.”
And this incredible community came to her side.
People she had never met. People I have never met.
When it matters – when a family is in crisis – we joined together. Under the banner of “We Get It”.
That is the power of social media.
Without the connections I’ve made online, I’d still be lost. Floundering.
I thought there was no one like me. I thought there wasn’t any child like my child.
Then I started reading blogs and Facebook pages. I started writing our story.
I joined Twitter.
I know what I know about parenting a special needs child because of the people I have met online. These friends made me the advocate and parent that I am today.
They gave me hope when I had none. A virtual hand to hold and shoulder to cry on when I had no one. At any time, day or night. They gave me the strength to reach out IRL (in real life).
You want to know why I’m on Facebook and Twitter so much? Because I never feel alone.
I asked my now new friend if I could share her story here. She agreed and wrote:
When you write your post, I would suggest that you also really encourage people to REACH OUT in those moments when they feel adrift and alone. No matter how silly it feels, no matter what you worry people may think of you…We are all parents of amazing kids who want to create a world in which they can thrive, and we would do anything to help one another reach that shared goal!
On behalf of my friend, I am asking you to get connected. Whether you are just starting on this journey or have been on this road for a while, reach out. Join Facebook groups. Get on Twitter. Make new friends.
Visit websites like:
My Autism Team: “The social network for parents of children with autism. Find parents like you.”
Squag: “A curated social space for kids with autism (and other learning differences) to build ideas about themselves. Our goal is to facilitate the opportunity for organic relationships; driven by kids, supported by parents. What could be better?”
National Parent Technical Assistance Center: “A major goal of the ALLIANCE National PTAC is to build the capacity of Parent Centers in order to improve results for children with disabilities ages 0 -26 in rural, urban and suburban areas and from underrepresented and underserved populations.”
You are not alone. We may not be there in your house but we are out here and we are just like you.
Together, we’ll have hope.
“It’s the singer not the song,
That makes the music move along,
I want you to join together with the band,
This is the biggest band you’ll find,
It’s as deep as it is wide,
Come on and join together with the band,
Hey hey hey hey hey hey, well everybody come on.
Come on and join, join together with the band,
We need you to join together, everybody come on,
Hey hey hey, join together with the band.” – Join Together by The Who