Leaving an exclusive “special needs” support group

I am the mother of an autistic son and the wife of an autistic husband. They are two sides of the same coin: one side is youth, and the other adulthood. But the currency is autism and there is no exchange window in any hospital, school, institution that will change who they are. My husband is a passionate advocate for autism and disability while he navigates through sensory, social and other challenges posed by his disability. Professionally he is a wildly successful savant; but if you see him walk the halls of Dripping Springs Elementary School, you will see a man hunched over, eyes downcast, unable to stop or slow down because his stimming is pacing. At least the hair pulling is in control. Each school trip produces more adrenaline than BASE jumping, and takes more energy than running a marathon. I know, because I get to pick up the pieces once he gets home. 
He goes because its important to his 3rd grade son to have Daddy at leadership day, awards day, etc. He goes because he wants to make the school a better experience for kids with “special needs.”
The internet is his communication window to the world and he posts publicly about his experiences because he wants to create an environment that will be more accepting of his sons. His posts expose his thoughts, soul and feelings. Reading each one is like ripping a bandage off a wound and exposing raw flesh, muscle and bone for everyone to see. They are usually uncomfortable for all audiences because there is nothing “mainstream” about him or his words.
The moderator has blocked him from this group because his words made her uncomfortable, and I was told to leave this group if I have a problem with her decision. So I am leaving this group because you can not have a special needs group which excludes autistic individuals or parents of autistic individuals. If this group can not tolerate an autistic’s personal point of view on their disability (even when it’s outside your experience), then it’s not as supportive as I thought.  
I wish you all the best of luck as you love, support and raise your children to be great individuals. I hope Ryan Boren’s post help you all out even if they no longer appear on this board.

NeuroTribes

I give copies to everyone who interacts with my kids. This book is important to geek, STEM, open source culture. Institutionalize empathy and neurodiversity.

Source: NeuroTribes

Designer’s Creed

Photo post by @rboren.

Source: Designer’s Creed

When we lose our way…

Our school has been implementing Covey’s 7 habits this year but we seemed to have lost our way.  The habits of thinking win-win, synergy, and seeking to understand are now ashes from the petty power struggles that are pitting parents vs leadership.  The results are disheartening: our staff turn-over is on par with Southside Chicago, our parent volunteers are evaporating, and discontent parties are publicly and privately sharing their humiliations and grievances.

The kids and teachers need to be commended that they are trying to stay focused on learning amongst all the chaos.

I support the school’s thinking “outside the box”and trying to incorporate new ideas and techniques into the curriculum.  It takes a special leader to have a vision, inspire the team and lead through implementation.  We consider Steve Jobs to be a great leader/innovator who changed the world.    I sometimes think his job was easier than an educator’s, because Apple’s revolutionary products are “things” and prior failures were considered “learning opportunities.”  In education, the product is my children’s future and its a one shot deal.

I am partnering with this district and school staff to educate my children… and its a 12 year commitment.  A successful partnership requires open communication, a rigorous vetting of ideas, a commonly agreed vision and (personally I am a stickler for) crisp implementation roadmaps. Today, I feel this partnership is not equitable; trust on both sides has disintegrated, the vision is hazy, and any debate is looked upon as sedition.

I want my children’s education to prepare them for a world that is seeing radical technical, industrial, social and economic shifts.  I appreciate that the school leadership is trying new pedagogical approaches to stay ahead of the curve.  I want our school and its staff to succeed.  I would just like to an open and rigorous discussion on how its going, and what the future will bring.

What it means to build a billion dollar business….

Matt, Ryan, Andy and Donnchas’ little startup made the news today: About 8 years to 1.16 billion dollars, and I am being specific because at a billion, even the thousands are a big number.

I am going to be nostalgic and remember the almost beginning… Which for us started when Cisco was having layoffs and we were praying that Ryan would be given a severance package with his pinkslip. Automattic was bootstrapped so no rockstar salaries and benefits, rather the severance package allowed you to pay rent for those first few months. I was working full time for salary and benefits while Ryan changed the world through blogging those first few years. Automattic was so proud when they could offer medical benefits, that was a big moment for them as a company.

Lots of code was developed around our kitchen table. The guys now with Toni and Barry (who was still waffling about joining the crew full time) would come down from San Francisco in the Chevy Lumina, making a pit stop at Costco for the extra large packs of steaks. Steaks, liquor and blueberry pie was for dinner. There was quite a conundrum when the first vegetarian joined… What were we going to feed him?

The original Wordcamp at the Swedish American Hall, where we all had to leave the the conference every 45 minute to feed quarters into the meters…. And Chartreuse was the featured presenter. I can not even imagine where that man is now.

Fast forward through formalized Wordcamps at the Bayview Conference Center, parties at Automattic lounge at Pier 38, and all of those team offsites.

So many things have changed, but I am glad that as the company grew, as WordPress became a mainstream platform for web publishing, we still have WordPress devotees coming to code on our porch, around the kitchen table, and all over the property.

I am so proud of all of you.

It’s bedtime

Why the king bed is not big enough!!!!

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The rooster’s been busy…

Happy birthday to my awesome mom

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The original wordpress odd couple

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Ronan taking mom on an adventure.

Ronan and I (look up and in the middle)  60 feet above terra ferma.

Ronan and I (look up and in the middle) 60 feet above terra ferma.