Sleeping Village

It was a typical dinner Monday night when everyone was talking over each other and no one was eating.

There was bickering. Potty talk.  Anything and everything except actual eating.

Since this happens quite frequently, I have a mental list of “conversation” topics that usually redirect everyone long enough to get some food into them in between sentences.

When I say “conversation”, I mean mostly monologues of non-related topics, but each kid is taking a turn with it, allowing the others to eat.

And when I say “topics”, I mean I ask them about Minecraft.  So just one topic.  Singular.

Tonight was no exception.

I entered the cook time into the microwave and turned towards the boys at the table. “So, guys, if you could create your own Minecraft Mod, what would you do?”

(ed note: a mod is a modification made to the Minecraft code.  Gamers write code to create these mods to add additional things to the original game.  My friend Bec at Minemum can explain it all.  I know nothing about it except that my kids are obsessed with watching videos about them and begging me to download them.)

“I would create a space world where things could explode!” replied Howie.

“I would create a place where animals could go and there would be explosions!” said Lewis.

I took my dinner out of the microwave and sat down at the table.

“Well,” I said, “if I was creating a mod, I would make a sensory gym mod.”

I gave Tim a little smile. I was completely kidding.  I half expected them to come out with a “What?! That’s ridiculous!” and go back to discussing how to explode creepers and zombies.

Howie looked right at me.  “A sensory gym mod?”

“Sure,” I said. “It could have stuff in it like at SenseAbility Gym.”

Both Howie and Lewis were quiet for a moment.

“We would call it The SenseAbility Craft Mod!” said Howie.  “We could craft a trampoline out of leather and and blocks.  And it would be bouncy like slime. You’d make it on the crafting table!”

“And you could make a bolster swing too, ” said Lewis.  “You would need string.  And something to sit on.”

I sat in stunned silence.

Howie’s eyes got huge and bright.

“And the villagers – they would be autistic villagers!  They would be the ones who could be in the SenseAbility mod.”

Tim and I made eye contact. I gave him the “wow” look with my face.

“It would spawn autistic villagers and they would be the only ones in the village.  And they would go up to each other and would make the villager sounds and understand each other.” Howie was on a roll and was not stopping.  “And they would go on the trampoline and the swing.”

“Could you craft a weighted blanket?” asked Tim.

“Oh yes, you could do that.” Howie replied.

We were all giggling a little at the ideas, throwing them out one by one.

“You could make a square ball pit with blocks and craft something to put in it!” Lewis exclaimed.

“Could you make a wooden slide?” Tim asked

“YES!” Howie yelled. “You could make a slide.”

“You would need some fidgets too in your inventory,” I said to Howie, “just in case the villagers needed them.”

“Yes,” he said. “And the autistic villagers could trade emeralds for fidgets so they could feel better.”

He looked at me. “Spawning an autistic villager is rare but special, you know.”

I smiled at him.  “Yeah buddy, I know.”

Howie got up from the table. “Let’s play ‘SenseAbility Craft’ right now!”

“Wait, what?  Right now?  You didn’t eat anything!”

But Howie was already gone and Lewis followed right behind.  They went into the other room and pretended to be the autistic villagers, happily trading for fidgets.

I cleaned up their full plates of food and turned to Tim.

“You better start those Java and coding lessons with Howie.  I think he’s on to something.”

**********

It was December 2009 when I was listening to the developmental pediatrician list off the “red flags” for autism that she saw in Howie.  No pretend play, no ability to think of objects as anything other than their literal use.  Focused on the spinning wheels of the car and not the car itself.  Can’t do a pretend birthday party.

It was August of 2011 when I heard the same thing for Lewis.

“You’ll need lots of work and therapy to develop those skills.  I’m not saying he won’t ever have them, but they won’t come naturally.”

I left the office each time with my view of the world and my boys tipped on its side. I was crushed – mostly by the guilt of what I didn’t see. What could I do to help him?  Could I help him?

Turns out my autistic villagers just needed to figure it out in their own time and their own way, through a game that has no boundaries except the limits of their imagination and creativity.

Which, despite what we were told, seems to be endless.

I’m looking forward to the day when they create this SenseAbility Craft Mod.  I hope they let me play and be a part of  their incredible, creative and imaginative world.

Howie on the bolster swing.

Lewis in the squeeze machine. Crafting this one could be tricky…

“Red sun rising in the sky
Sleeping village, cockerels cry
Soft breeze blowing in the trees
peace of mind, feel at ease.” – Sleeping Village by Black Sabbath

 

With A Little Help From My Friends

It started small.

I happened to see a post from a business on Facebook that they had entered a contest.

A grant contest.

A $25,000 grant contest.

From FedEx.

My eyes got big.

Our nonprofit SenseAbility Gym needed that grant.

Our community needed that grant.

I filled out the online forms and told my business partner Tina about it.  I casually mentioned it at our last board of directors meeting.  As an aside.  Like a “Hey, I don’t know how this thing all works, but I filled out the info and we’ll see if we’re accepted.”

On November 14, I saw our logo listed on the site.  My heart jumped.

I shared it with some incredible amazing fantastic wonderful friends.  Seriously.  There aren’t enough superlatives to describe them.

And they got to work.  They instantly started sharing the contest and our link on their Facebook pages and Twitter feeds.

My friend Patty’s husband Bil suggested we create a Facebook event to remind people to vote.  He told me to make it public so everyone could see it in their newsfeeds and anyone could invite people to it.

My friend Lexi blogged about it.  Twice. So did my friend Kristin.

Writing things like “And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.” (from Kristin) and ” Even if it’s not set up in your neck of the country, it could be a model of a gym that could one day be set up near you. If this one is successful, more people will see how incredibly necessary they are.” (from Lexi)

And my friend Jess, who has been there with the gym from Day One, wrote about it too.  And tweeted: PLEASE VOTE for @SenseAbilityGym then RT. I’M BEGGING. #fedexgrantcontest http://bit.ly/XqmY3x @trydefyinggrav @diaryofamom #autism

In her post, Jess wrote: “Please vote for them to win the grant. It’s one click, once a day, through Nov 24th. Don’t worry; I’ll remind you. But please start right now. One click to create community. That’s all ya gotta do.”

So…

What happens when over 2400 people are invited to a Facebook event, and over 400 people actively voting on Facebook, and hundreds of people write Facebook posts daily begging friends to vote (under threat of postings of cat pictures all over their timelines)?

What happens when there are many many tweet and retweets,  and more postings in Facebook groups and on blog pages asking people to vote for us?

What happens when people who don’t even know us invite their Facebook friends to vote for us because they have a child with special needs and believe in our idea?

What happens when my son’s first preschool teacher writes to all of her friends: “today is the LAST day to vote for this awesome small business started by a good friend of mine! Her son was one of my very first students and holds a special place in my heart… Just click on the link and vote…thanks!!!!!! :)”

What happens when my husband is voting for something through Facebook for the First. Time. Ever?

What happens when you add one good idea plus hundreds of incredible friends with amazing social media presence plus a special needs community that comes together to support their own?

It equals over 3300 votes for our little nonprofit gym in only ten days.

And then this amazing thing happened…this I-can’t-even-put-my-finger-on-it thing…

This…whole community came together.

Cheering us on.  Joining us as we watched our numbers rise from 500 votes to 1000 votes to 2000 votes to the “holy crap we crossed 3000” vote tally.

People posting their vote number on our Facebook event page with pride and excitement.

This unbelievably dedicated and supportive community grew up around this voting contest.

And put us in a position to be in the Top 10 of all the businesses entered.

Part of the mission of our business is Community. SenseAbility Gym wants its members to feel welcome, and part of the special needs community.

You’ve done that for us 3300 times over now.

This grant would be a game changer for us.

It would be a game changer for the families in our community.

We want the families around us to feel as supported and loved as we have felt over these past 10 days.

At 11:59pm Eastern time, voting closes.  The contest press release states: “In December, FedEx will review the entries and select and announce the top 100 finalists based on their contest profile and the number of votes they receive from Facebook users. The top six small businesses – including the grand prize winner – will be announced in January.”

Thank you for believing in us and our idea.

Thank you for believing in our children and their potential.

Thank you for being our friends.

Stay tuned.

If you read this before 11:59pm on Nov 24th and want to vote:  CLICK HERE!

“What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I’ll sing you a song
And I’ll try not to sing out of key
Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm going to try with a little help from my friends” – With A little Help From My Friends by The Beatles

 

Free To Be You And Me

notes from an Open Sensory Gym afternoon…

The boy sat in the giant red swing.  It was in the center of the room, swaying back and forth on the rope attached to the high ceiling. His mother (grandmother? caregiver?) pushed him back and forth.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

The boy jumped out of the swing and went up to each adult in the room.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

An hour passed.  He went from swing to trampoline to scooter board to crash pad.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

My friend and I answered him each time.  Of course we did.

His mother (grandmother? caregiver?) started to yell at him.  “STOP Adam STOP!” she yelled from across the room. She looked embarrassed.  Or weary.  Or both.

It made me sad.  If there was any place that this would be fine – and understood – it would be in this gym.  He wasn’t bothering anyone.  Why tell him to stop?

Was it out of habit?  Or was she truly worried about what we thought?

I wanted to tell her it was okay.  That he could just “be” here.  But I didn’t. I don’t know why.

**********

After checking out most of the equipment in the gym, Howie gravitated towards a large purple therapy swing that was full of balls.  He climbed right in, zipped himself up and asked me to swing him around.  “Faster! Faster!” he yelled to me.  In a place like this, I could give in to his need to spin, spin, spin.

A little boy came over and helped me push Howie around.  Howie squealed with delight.  The boy introduced himself as Zachary and they ran off to play together.  Really play.  They climbed up on the crash pad and pretended they were jumping out of airplanes.  They sat together in the giant tires and pretended they were in spaceships.  As they ran from thing to thing I struck up a conversation with his dad.

“How old is he?” I asked.

“Five and a half.” he replied

“Oh, Howie is too.  Well, he’ll be six in March.”

The dad paused for a moment, looking intently at Howie.  “He’s not autistic, is he?”

I was totally taken aback.  Isn’t that why we’re all here?  “Yes, yes he is.” I say.

“Oh, wow.  But…he talks so well! I assumed he was here with a sibling, like Zachary is here with his younger brothers.  His twin brothers are four.  They aren’t talking…yet.” His voice trailed off.

I told him Howie had a diagnosis of PDD-NOS.  He looked at me like I had three heads.  “It’s part of the autism spectrum.” I replied.

It struck me that even within our own community not everyone understands that it’s a spectrum.

We talked some more about how tough it is for Zachary to be at home with his brothers.  They come to the sensory gym so that all three boys have a place that’s safe for them to play together.

“It’s so hard for him,” the dad said. “I guess he’ll grow up faster and learn more about life than other kids.”

We watched as the boys ran off together again laughing.

I had assumed that Zachary was on the spectrum.  His dad had assumed the opposite about Howie. 

I wanted to connect with this family of three boys.  I wanted help spread awareness of a different kind.  But I didn’t. I don’t know why.

**********

Someday, I will buy a “squeeze machine”.  So I can see this happy face all. the. time.

**********

I am very grateful to our local Autism Alliance center that opens its hearts and pockets to provide these sensory gyms during the winter months.   This is how we’ve spent our last two Sundays.  The equipment is familiar to my son from school.  But most importantly, he is free to choose what he wants to do and what he needs to do in that moment.  And both weekends, he has made new friends.

Can I say that again?  My five-year-old kid with deficits in social skills and pragmatic language made new friends.  You don’t have to have your degree in special education to understand why.

He’s comfortable.  He’s happy.  He’s safe.  He’s around people who are letting him be.

He’s free to be himself.

If only we adults could learn from that.

“Every boy in this land grows to be his own man
In this land, every girl grows to be her own woman
Take my hand, come with me where the children are free
Come with me, take my hand, and we’ll run

To a land where the river runs free
To a land through the green country
To a land to a shining sea
To a land where the horses run free
To a land where the children are free
And you and me are free to be
And you and me are free to be
And you and me are free to be you and me” – Free To Be You And Me soundtrack