Hunger Strike For Autism?

Today, I received disturbing news from one of the bloggers I follow.

Michael Buckholtz is the blogger for the non-profit organization he founded called Aid For Autistic Children Foundation, Inc. As usual, I stumbled across his blog as I perused the many Twitter posts for autism. As a person who was not diagnosed with his spectrum disorder until grown, he brings a unique perspective to the world of autism and Asperger's. As my son grows into manhood, I appreciate that perspective.

However, Michael is going on a fast to bring awareness to the plight of those families that deal with autism, but who do not have bankrolls (or even houses to mortgage) to pay for their child's care.

He is on a 30-day hunger strike.

I am not here to judge, but I still don't like the idea of having to fast to get the attention of people. I don't know if he is being followed by a doctor to monitor his health as he does this. And, with over 900 friends on his page, some of them doctors, I am appalled at the lack of response.

Does the autism community need hunger strikes? Do we need to get grass-roots and sit-in on some senators or insurance companies to get attention to the needs of our children? Have we really come to that?

Michael thinks so.

Earlier, he asked people to write the publicist he hired in support of his book. I wrote a lengthy email. There was not even an autoresponder from Ms. Barnett.

I want awareness, but I don't want our children or even our adults with autism to have to go to such extremes to get attention. Of course, he is free to do whatever he wants, but I hope by my writing this up in two of my blogs, that people will become aware of his journey.

I know April was Autism Awareness Month, but autism doesn't take a vacation or only show up once a year. It is a disorder that families go bankrupt over, marriages fall apart over, and mother after mother (and plenty of dads!) work from dawn until dusk, caring for their children. There are elderly parents still caring and truly worrying about what happens when they are gone.

I am not sure what I want to ask my readers to do. I do want you to click through to his pages. I do want you to support him. But, most of all, I want to open the dialogue. Is it time for the community of people whose lives are touched by autism to go to more radical ways. Is it time to go past petitions and walks?

What do you think?

Online Loss

This week I realized how deep the relationships I have formed online can go.

On Twitter this week, I read about one follower who had surgery. In another tweet, one mother wrote in that a fellow "TwitterMom" lost her little baby girl. In my company, I received a thank-you card from a grieving family, whose daughter died suddenly in a motorcycle accident. And, then finally, I received news from one of my social communities that a woman I had welcomed into the group had passed away yesterday.

That was the straw that broke it for me.

I know I belong to a invisible disabilities community. I know that many of the members struggle with diseases and disorders, some treatable, some incurable. Some deadly. But what caught me completely off guard was the realization that I have never laid eyes on any of these people.

Every one of them were connections I made through the technology of our present age. Through screens and text. Through digitized pictures and personal online journals. Through little 140 character messages sent from one geographical dot on the globe to another.

This won't be a long post today. My heart is so full of emotions. I wish I could be there to wrap my arms around family members. I wish I could stand by as they lowered little caskets and tossed flower petals. I want to come by the next day or the next week with a casserole and leave it wordlessly in the fridge. I want to do someone's laundry; weed someone's garden. Something to show I care and am nearby.

But, I can't.

I can only text back my condolences.I can send a card. I can leave memorial pictures like the one above on personal profile pages. It may not be what I want to do, but it is something. When words are not enough, any action can convey love and compassion.

That's all I have for today.

Oh,no. I do have one more thing to say.

If one more expert and guru tells you that Twitter, Facebook, LinkedIn and even MySpace are a waste of anyone's time, just tell them about all the mothers supporting a mom who lost her baby. Talk about the family that received cards from complete strangers as they buried their daughter, surrounded by her teenage children. Tell them about this blog; send them to this post.

I just have one thing to say to them. If it connects people, it matters.

Take A Cartoon Break! But This is Not My Life, Seriously!!

I had to reprint this animation. Found it on Web Strategy by Jeremiah. It is such a funny take on the Twitterverse, of which I am a serious twember (Twitter Member).

I can't tell you the people I have met on Twitter that now are a serious part of my life. I have mentioned some of them in other posts. I hope to be able to talk about more.

So, now, sit back and enjoy this cartoon break.

My TweetSheep Cloud

Just found a very interesting twit app that I really like. TweetSheep.com generates a tag word cloud from the profiles of the people you follow. It is one of those little apps that seem to be poppping up all over the place.

My TweetSheep cloud serves as an introspective look into who I tend to be drawn to on Twitter.

It also let me know whether I am not searching for people who cover or represent certain subjects that are dear to me. I'll give you some examples.

I have posted a pic of my current cloud. You can see that autism practically jumps off the page. I have said it already that the autism community is represented very heavily in Twitter. Then mom comes up quite big and so does technology. But as an IT tech major, that tells me my connection to the tech world is not so strong in Twitter.





Now at first glance, that may not look good. But I already know enough about me to know that even though I love technology, I love it in context to people and learning.

What is minuscule in my cloud is the disability tag. So small I could barely read it. Not good. I want to know more about disability advocacy, assistive technology and the issues that surround that community.

Now, the thought comes to my mind: Am I not searching/connecting to Tweeters involved in these areas or are they not online?

Here is an open call. Anyone who has followers or follows Tweeters involved in disability issues, AT and the like, please post some people to follow in the comments.

Just a Quick Note

Okay, I know it was just a couple of weeks ago and I was complaining about joining Facebook and Twitter.

I take it all back now.

I am having the time of my life! I have met some wonderful people/bloggers. I have connected with AT specialists all over the world. There are nearly 100 tweeple following me!

Of course, this is playing havoc with my home life. Dinner is an hour late and I am estatic if no one is hungry. The laundry is piling up and the bathroom needs cleaning. Well, perhaps, that was TMI.

But, all in all, my itinerary has exploded. Last week, I took webinars for the introverted. Tonight, I chatted in a blogtalkradio show and was quoted on-air! Friday, I will be in my first virtual wine tasting with TwitterMoms.

I used to be very upset about where I lived.

How the neighborhood was atrocious and I never wanted to bring anyone over. Well, not that the virtual world is a replacement for real people. I still talk to my friends, even though most of them live in other states anyway. I even want to try video calls, though I hate the way I look in photos and video.

But, when you are in the position I am in with very little outside life, this is the next best thing. I can stay here, do my schoolwork, volunteer in Africa (almost done the application process!), take care of my son AND drink wine with the girls!

What is not to love?

Blogged with the Flock Browser

A Post About Friends

Today, I tried to visit some of my other social communities. School being what it is, I cannot even get near Twitter or Facebook. It takes up too much time and I find I am stuck there.

But, today in my perusals of posts and comments, I came across a devotional from a new person that I have not made friends with so far. She spoke about becoming the type of friend that survives changes and really gets to know one another.

Here is her post:

VERSE:
A man that hath friends must shew himself friendly: and there is
a friend that sticketh closer than a brother.
-- Proverbs 18:24


THOUGHT:
Close spiritual friends -- the kind that can hold us accountable
when we need it, build us up when we're down, or celebrate with us
when we've enjoyed success -- are truly rare. So many people are
lonely; they're lonely for something, or better yet, someone,
they've never experienced. We have a tendency in modern western
culture to have acquaintances and companions instead of friends and
partners. When things go poorly, when we have nothing to offer to
them, acquaintances can run away in times of trouble or fade away
if things are long and protracted. There are, however, true friends
whose commitment and dedication are deeper than even physical
family. How do I know? God promised it! I've seen it! My family has
been blessed by it! So let's hear the call to be that kind of
friend to others and in so doing, we will often find that kind of
friend for ourselves.

PRAYER:
Gracious and holy Father, thank you so much for calling me into
your family. Please bless me as I seek to enter into meaningful
friendships with those in your family. In Jesus' name I pray. Amen.

In this fast and furious world of twittering, facing up on Facebook, Digging it all and remaining Linkedin, I am stopping to ask: Are you really getting to know some of these people? I understand networking possibilities, but are these people you can go to if something catastrophic happens? You may say, I have my family and close friends for that. My point exactly.

My goal is to make a least some of the people I converse with for hours close friends. What is the point of investing so much time if I don't get to that point with somebody?

In the end of our lives, will our Twitter friends be there or our real friends?

Let's endeavor to deepen some of these relationships beyond 140 characters.