Somebody Come And Play

So I almost said no.

I’m pretty gun shy when it comes to blogging events, especially ones for my kids. My social anxiety spikes and my nervousness about their behavior and their sensory needs and their everything else usually turns into a “thanks but no thanks” email back to the event planners.

But when I got the message about a PBS Kids event in Boston at WGBH, I knew I couldn’t turn it down.  It was about their new initiative called “It All Adds Up“, designed to bring math and literacy skills into homes all over the world through their online programming and apps.

This is an event made for my kids.

Still, I was nervous.  So nervous that I almost backed out.  The first half of the event had parents in one room hearing about the new programs while the kids were right next door doing activities, crafts, etc.  That can be just so unpredictable for Howie and Lewis.

So I sent this email:

Hi! It will just be two of my boys ages 7 and 4. I hope that is okay.

Just a heads up, my two boys are both on the autism spectrum.  They love math and science and all things PBS but they get nervous and a little overwhelmed in large groups and with characters in costume. As long as I can be nearby for them, they should be okay. But please let me know if you are uneasy about having them there.

Thank you!

Alysia

I hate sending that email.  Not because I am ashamed of my kids.  But I am always worried about the response back.

But being PBS, I guess I should have known it would be okay:

Thanks for the email Alysia. A Curious George character will be present at the event – greeting people at the door, and then coming out again at the end. You can definitely just walk past and I can let my colleague at the door know. There will be a time when the parents are in an adjoining room listening to a presentation while the kids are playing games and activities in the other room. Do you think that will be ok? We expect approx 30 kids and 20 adults.

We’d love for you to be there. I just want to be sure you have all the info about the event so you know what to expect. Let me know your thoughts and if there’s anything we can do to help.

That’s all I needed.  I could prep them for exactly what was going to happen.  And I had an exit strategy if needed.

So off we went.

We got on the highway around 10am, armed with munchkins and juice boxes. I usually turn on a movie or the radio for the boys but I didn’t want to be alone with my thoughts.

So we talked.

We laughed at the leprechaun hat that is the symbol for the Mass Pike.  We discussed what “Mass Pike” actually meant.  We counted the Jersey barriers along the side of the road and made believe we were racing the big trucks.  We squealed with delight as we went under the “cool hotel that makes a bridge over the highway”.

We shouted and pointed at the large building with the Word Girl animation on it.  I told them that was where we were going.

Their excitement was growing.  My anxiety was almost gone.

We bounded our way into the WGBH building and were immediately greeted by Curious George.  Lewis stood behind me.

Howie went right up to him and gave him a big high-five.

In the elevator, he turned to me and in an exaggerated whisper he said “that was just a guy in a costume, you know.”

I knew we’d be okay.

We entered the room to check in.  The boys got name tags with their names written in their favorite colors.  The room was filled with coloring pages, games, activities and kids.  A giant TV on the wall was showing Curious George.

A lovely young lady motioned for them to sit with her and play.  And they did.

My fears about the event now gone, I found a seat in the presentation room.

I shouldn’t have been surprised that PBS and the Corporation for Public Broadcasting were doing so much for kids in the area of math, science and literacy.  But the approach they are taking is truly remarkable.  By creating content online that complements their TV programming, they are engaging kids in a whole new way.  We learned about a new show called “Peg + Cat” which is all about math skills but taught in a humorous and approachable way. And written on a level that both kids and their parents can find interesting.  Example : a reference to turning up an amplifier to the number 11 – a slight nod to Spinal Tap that had me and my friend Jessica giggling.

What really got me though were the online games and apps targeted exactly at my kids.  Apps for Martha Speaks, Wild Kratts, Dinosaur Train and Cyberchase and games for Curious George. My kids’ shows.

When we left the presentation, we got to see the games and apps in action.

Howie is very new game phobic.  He is afraid of trying a new game or app because he is hyper-competitive and worried about losing.  “No, thank you.” was the response I got when I asked if we should try the new Curious George Bubble Pop game.

But Lewis?  Drawn to games like…like a kid who loves iPads and computer games.

Playing Curious George Bubble Pop. And yes, that’s a breadstick in his hand. We mutli-task.

The premise of the game is that when you see a bubble on the screen, you yell “Pop!”.  And it pops.  George gives a little squeal and counts the numbers of bubbles that have popped.

No mouse.  No keyboard.  And you don’t even need to say “pop”.  You can clap your hands or make any noise and the bubble pops on the screen.

It only took 10 bubbles popping before Howie joined in too.  For a few minutes, they were both yelling “POP!” at the tops of their lungs.  And each time Howie jumped up and down with delight.

Yelling POP! Because it’s okay to yell sometimes.

Instantly I saw the beauty of this game for kids like mine.  No fine motor control needed.  No speech.  And online for free.

This game teaches cause and effect, counting, and math skills without having to say a word or navigate a mouse or keyboard. All accessible anywhere on any computer with a microphone.

As my kids were yelling “POP!”, I made my way over to the woman representing PBS.

“I can’t thank you enough for this,” I said.  “This game is really perfect.  My two kids are on the autism spectrum and for them to be able to navigate a game flawlessly without specific words or the mouse is just incredible.”

There’s a chance that I caught her a little off guard.  But as she looked over at my kids smiling and jumping, I could see that she got it.  “Thank you,” she said. “That means a lot to us.”

Next, we made our way over to the Wild Kratts app on the iPad.  Howie got to show off his math skills as he fed the animals in the forest.  Lewis honed in on the Dinosaur Train app.

I had to drag them out of there.

I tweeted:  Going right to http://pbskidslab.org  when we get home #pbskidsaddsup

And we did.

That night, Howie and I were sitting on his bed before bedtime.  We were playing the Martha Speaks “Word Spinner” app that we had learned about that morning.  I have never seen him so engaged in an educational app before – laughing, smiling, waiting for his turn…excited for his turn.  Yesterday, he played it with his home therapist, squealing the same squeal of delight that I heard at the event.

Every time the WGBH logo comes up on the screen Howie says “WGBH!  We went there!”

I am so thankful I didn’t say no.

Update from 3:15pm : I went outside to get the mail. I came in and Howie and Lewis were playing the Martha Speaks “Word Spinner” app.  Together.  Taking turns.  Nicely.  Smiling.  This NEVER happens. This is huge.

Disclaimer note: We were given free app codes for Cyberchase 3D, two Martha Speaks apps, two Dinosaur Train apps and the Wild Kratts app.  Considering how much my kids love them, I would have spent the money anyway.  We were also shown another Curious George online game called Monkey Jump – another game where no speech, keyboard or mouse is used.  You jump and Curious George jumps.  All you need is a webcam.  Perfect for my kids.

“Somebody come and play
Somebody come and play today
Somebody come and smile the smiles
And sing the songs
It won’t take long
Somebody come and play today

Somebody come and play
Somebody come and play my way
Somebody come and rhyme the rhymes
And laugh the laughs
It won’t take time
Somebody come and play today” – Somebody Come And Play from Sesame Street

 

Peace, Love and Understanding

I wasn’t going to write about Sandy Hook.

I couldn’t.  For the most part I’ve had to walk away. I haven’t watched TV since Friday.  Have filtered my Facebook feed.  The harsh reality of the “it could happen anywhere and those children were my child’s age” was just too much to take in.

But then today I read this.  About Dylan Hockley and his aide Anne Marie Murphy:

(from the New Caanan, CT news):

Staring down the barrel of a rifle, Anne Marie Murphy pulled Dylan Hockley close to her, trying to shield him from the hail of bullets that would kill them both.

Dylan, 6, had special needs, his family said Monday. And Murphy was his “amazing” aide, they said. He loved her, pointing happily to her photo on the Hockley’s refrigerator every day…

“We cannot speak highly enough of Dawn Hochsprung and Mary Sherlach, exceptional women who knew both our children and who specifically helped us navigate Dylan’s special education needs,” Dylan’s parents said. “Dylan’s teacher, Vicki Soto, was warm and funny, and Dylan loved her dearly.”

And I was instantly undone.

Dylan is the same age as Howie.  And in that moment of extreme terror and confusion, he was sheltered and comforted by the person he trusted the most in that school.  His aide.

This is where it hit so close to home.

I know that from the moment Howie gets on the bus until the moment he gets home he has someone with him who cares about his as much as we do. They share in his successes like they are their own and struggle along with him when he is challenged.  His teachers – all of them – are by his side every moment of the day making sure he is safe and comfortable in his own skin and in his surroundings.

I could not send my child to school today or any day if I didn’t have complete trust in them.

I cannot imagine the grief that this family is feeling.  I write this with tears streaming down my face as I sit next to a sleeping Howie.  I watch him dream, so blissfully unaware of what has happened and how everything has changed for so many yet nothing has changed for him.  His teachers are keeping it that way.

Out there in the world people are angry.  There is fighting and name calling over politics and policies and privacy and we are lashing out at one another because there is no one thing to blame so we blame each other.

But it should be Dylan’s story to be the story that is shared. The one that reminds us that even in the face of such horror, our kids turn to and are protected by the people that love them. The one that highlights the bond between student and teacher.  The teacher that for so many of us special needs parents becomes the caregiver we trust the most.  In so many respects, they are their lifeline to the outside world.

I want my son’s teachers to know my gratitude for being there for him every moment of the day. To every single one of the teachers and staff who have been my son’s guiding light from the moment he entered school, I am forever grateful for what you’ve given us.

I find the words of Dylan’s parents to be particularly striking: “We are forever bound together and hope we can support and find solace with each other.”

I hope the rest of us can find that too.

thank you

“As I walk on through this wicked world,
Searching for light in the darkness of insanity,
I ask myself, Is all hope lost?
Is there only pain, and hatred, and misery?

And each time I feel like this inside,
There’s one thing I wanna know,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?

And as I walked on through troubled times,
My spirit gets so downhearted sometimes,
So where are the strong?,
And who are the trusted?,
And where is the harmony?,
Sweet harmony

‘Cause each time I feel it slipping away, just makes me wanna cry,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?

So where are the strong?,
And who are the trusted?,
And where is the harmony?,
Sweet harmony

‘Cause each time I feel it slipping away, just makes me wanna cry,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?” – Elvis Costello

 

Hold My Hand

Dentist appointment today for Howie.

Just the thought sends shivers through me.  Past appointments have gone very well (at this dentist anyway…we won’t talk about our previous dentist who refused to let me in the room with him, even when he was screaming and crying…moving on…) but you just never know, right?

I usually take the kids separately but this time I had Lewis with me too as an observer.

There were a million ways for this to go bad.

After a failed attempt at x-rays (again), the hygienist asked Howie to lie down so she could clean his teeth.

This had never been a problem spot in the past but for some reason today Howie refused.

I went into full alert knowing that at any moment we could be completely done here, which would mean completely done with the dentist for a long time.

“Can you sit him up a bit?  Howie, you need to lie down just a little longer so she can make your teeth sparkle. Want me to hold your hand?”

Howie sat up and looked at Lewis.

“I want Lewis to sit with me and hold my hand.”

And so…

He did.

“Hold my hand
Want you to hold my hand
Hold my hand
Ill take you to a place where you can be
Hold my hand
Anything you wanna be because
I wanna love you the best that, the best that I can.” – Hold My Hand by Hootie and The Blowfish

 

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

 

Rock The Vote for SenseAbility Gym

My friends.

Just when you thought you were all done with voting for a while…

Now I need your vote.

SenseAbility Gym, the sensory gym that we are opening in Massachusetts, is up for a chance at a $25,000 grant from FedEx.  Businesses from all over the country are competing for this money in an online contest.

Here’s what we wrote:

SenseAbility Gym was established in May of 2012 as a sensory gym for special needs kids. As moms of children with autism, we have found that there are a couple occupational therapy centers in the area that occasionally offer public open gym time, but there is nothing in the area that provides the year round open gym services. With the autism rate rising to 1 in 88 children, we knew many special needs families needed a place for their children to play safely and find support and acceptance.

We’re a non-profit relying on donations, grants and fees paid by families who will use our gym. There is no other business like ours in central Massachusetts that provides the services that we will. We believe that children deserve access to the equipment used in their schools and therapy clinics. This will be a place where parents and children can go to socialize with other families with similar challenges. Our community needs this grant to get our doors open for these families and stay open.

The $25,000 grant will go directly into the programming and operation of the gym. We need specific therapeutic equipment for the gym that is expensive (things like therapy swings and safety mats). We are also offering specialized classes for kids in social skills and life skills and the money will go towards offering those at reduced rates. This grant will allow us to use other private donations for direct operating costs, giving us the rest of the money we need to open to the gym for families.

We need your vote today.  And every day until November 24th.

Click HERE to vote directly.

Click HERE to join our Facebook event page for information and reminders to vote.

Click HERE to make a donation to our gym.

On behalf of all the kids in our community who will benefit from this, we thank you.

 

Don’t Speak

I wrote today’s SPD Blogger Network post on three hours sleep.

We play sensory detective a lot in our house.  Last night was no exception.

Come read Don’t Speak over at the SPDBN and let me know what you think is going on in our home.

Here’s a hint.  It has something to do with this:

ah…hunger. Or not.

 

Wordplay

I have a million and one things jumbling around in my head.

I want to write about them all.  But I can’t seem to get them out.  They are stilted fragments of mixed up blog posts stuck in all different parts of my brain.

So I needed something good.  Something short.  Something that made me smile.

Yesterday in Howie’s backpack, this came home:

“I used my fingers”

There are so many things I love about this.  Here’s a few:

1) He answered the question.

2) He answered it very literally.  Because that’s him.  How did you count them?  I used my fingers.  Of course.

3) His teacher did NOT mark it wrong.  Because it’s not wrong.  Was it the answer she expected?  Nope.  Is it right?  Yup.  This is what good teaching is.  His teacher GETS him.  She could have said that wasn’t correct.  Instead, she prompted him with another question about it to help him get to the next level.  It takes me back to my friend Stimey’s post Not Even Wrong.  Good – GREAT – teachers respect how our kids think, give them credit for that, and then work with them to see it from another perspective.

4) I love how he spelled out “yoosd”.  Phonetically it’s perfect.  And another example to me of how tough our language is to learn – especially for literal, rule minded, pattern loving thinkers.  Of which I have three in my house.

5) Howie’s handwriting.  It’s better than my husband’s.  This kid struggled with holding a pencil from the start.  You’ve come a long way, baby.

6) My kid is doing math.  And he’s writing.  And he’s getting the concepts and generalizing them.

Ask me if I thought this would be possible for first grade…on second thought…don’t.

There are so many ups and downs on this parenting rollercoaster.  So many times my heart breaks a little for my kid when I watch how hard he struggles just to be comfortable in his own skin.  So many many sleepless nights for us all.

And then there’s this.  The progress that happens in an environment tailored to celebrate the successes of my child and challenge him to think in different ways.  The willingness to think outside of the box for my kid to help him think outside of the box.

That’s worth celebrating in a blog post today.

“I built a bridge across the stream my consciousness
It always seems to be a flowin’
But I don’t know which way my brain is goin’
Oh the rhymin’ and the timin’
Keeps the melodies inside me
And they’re comin’
Till I’m running out of air
Are you prepared to take a dive into the deep end of my head
Are you listening to a single word I’ve said

Ha La La La La
Listen closer to the words I say
Ha La La La La
I’m stickin’ to the wordplay” – Wordplay by Jason Mraz

 

The Ballad of SenseAbility Gym

Yes, I know that’s not a real song.

But I had no other way to title this.  It’s an original title for a brand new project of mine.

It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.

My very dear friend and I are opening a parent-led sensory gym.  As a non-profit. For kids just like mine.

We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids“.

But first…the back story.

**********

This winter, my friend and I took our sons to an open sensory gym in sponsored by the Autism Alliance of Metrowest.  We watched our boys run around and play and smile.  The equipment was familiar to the boys from their OT sessions at school so they knew just how to use it.  As a bonus, my friend and I got to actually talk to one another.  A few weeks later, we attended another sensory open gym, again sponsored by the Autism Alliance, this time at a private OT clinic.  Again, the boys were in heaven.  Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings.  And again, we got to talk.  Mostly about how we wished there was something like this open near us all year round.

I wrote about our experience there in my blog.  I talked about how welcoming it was.  How one child kept telling everyone it was a leap year and reciting the other years when a leap year had occurred.  How Howie made a new friend there who loved to spin around in the closed up swing as much as he did.  How happy our kids were.  And that no one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not.  It was pure acceptance and love for our kids.

Such a happy face!

My husband Tim read it, saw Howie’s happy face in the pictures, and casually said “You should open a place like that.”

I’m not sure he actually meant it. But I started to cry.  Because I knew we had to open a place like that.

The next night, I went out with a few friends for drinks.  All autism moms. I told them what Tim said.  They said we had to do it.

The next morning, I went for a walk with another friend.  She’s been my friend since our oldest boys were in preschool together. I told her to talk me out of it.  She talked me more into it.  And handed me a book on how to start a non-profit in Massachusetts.

The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.   Not one person told us it was a bad idea.  In fact, they all said we had to do this.

We met with a business consultant to organize our thoughts.  We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work.  We sent out a survey and wrote a business plan.  We asked my cousin to design our website and our incredible logo. We filed with the state as a nonprofit, with the attorney general’s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.

And so SenseAbility Gym, Incorporated was born.

**********

So what are we?  What are we trying to do? And why am I writing about this here?

SenseAbility Gym’s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.  This will be the first of its kind in the Metrowest area of Massachusetts.  We’re modeling our gym after an incredibly successful sensory gym in Brooklyn, NY.

We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.

• Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.
• Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.
• Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.
• Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.

Through this blog, I’ve connected with special needs parents all over the country and the world.  The one common statement that most parents say is “I feel so alone.  My child is the only one that has these extra special needs. I have no one to turn to for support.”

My friend and I know how lucky we are to live where we do.  From the moment that we knew Howie needed extra help, we had people to help us.  Our pediatrician referred us to Early Intervention to get help for his sensory issues from an occupational therapist.  When he entered preschool, he was surrounded by a loving, caring, knowledge group of teachers and support staff who knew before we did what Howie needed.  And when he received his autism diagnosis, we were instantly supported by this team here in town to get him the services he needed.  And through that, he made friends.  And I made friends.  And without that…I don’t like to think about it.

We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.  We see the gym as a place where moms and dads can interact with parents just like them.

As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”

We see it as an another piece of the support team helping families know they are not alone.

**********

I’m going to get numerical here for a moment.  We know that as many as one in six children have sensory processing issues. That is from the SPD Foundation. The CDC reports that 5.4 million children between the ages of 4-17 have been diagnosed at some point in their lives with ADHD in 2007 and that number is rising.  We know that 1 in 88 children – 1 in every 54 boys – are diagnosed as on the autism spectrum.

Taking a small seven mile radius around our town – the distance that people in our survey said they would travel for a service like ours – we know we have the potential of connecting with over 400 families who could use the gym.  We’re guessing that people will travel farther and the actual number will be even higher.

That is over four hundred families that could finally connect and say “Me too.”

**********

And this is where you come in.

I need your help.  As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open.  None of us are taking a salary.  All the money we raise goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.

Our gym will be located in Hopedale, MA.  There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, and tunnels, balancing equipment and a squeeze machine.  We’ll have one quiet “sensory” room with crash pads and low lights and calming activities.  And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children who need that to get their work done. Families will be able to purchase memberships to access open gym times with their children.  In addition, we plan to offer sensory based group activities, and have the gym available for private therapists to use with children and their parent.

We would like to have our grand opening in January 2013.  To do that, we need $38,000 to open our doors.  That includes purchase of all the equipment and furniture for the gym.

We are actively pursuing local and national grants to help get us closer to that number.

I need you to tell people about us.  Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.  Maybe it’s your own family.  Maybe you work for a company that is generous with community giving.  Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.

I need you – my friends and family – to help make this gym a reality.  Not just for my kids or my friend’s kids.

But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.

For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.

For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.

Every dollar donated goes to the gym and those families.

It’s a balancing act

**********

Last night, we held our first fundraiser in our town.  The above is the speech I gave to the packed house that came for food, wine, chocolate, coffee and conversation.  The room was filled with family and friends and strangers who are now friends.  The most amazing part was it was not all people with special needs children.  It was our community. It was teachers, parents, friends, therapists, and business leaders.  They came because they wanted to support something that will benefit everyone.

We had a “sensory table” manned by my son Gerry and his friend.  She’s an amazing young lady who, like my son, understands how much swings and fidgets and weighted blankets and headphones help their siblings “feel better”.

We raised a lot of money last night.  We’re just under 40% of our goal.

But we still need you.

Clicking HERE takes you right to our PayPal donation page.  We are a 501(c)3 organization and your donation is tax-deductible to the extent permitted by law.  Every dollar goes towards get our doors open.

I want to be able to come here in January and post pictures of our grand opening.  I cannot wait to see the smiling faces on the kids that come through.

And their parents.

On behalf of my friend and every family that this will help, thank you for reading.

To read the news story about our fundraiser, click HERE.

To read more about our plans, click HERE.

To make our dream a reality, click HERE.

 

Home at The Oxygen Mask Project

I was away for four days at a blogging conference in New York.

By the time it was over, I was ready to return home to my family.

But what I didn’t realize was how much I wasn’t ready to return to me.

What happens when you’ve had the oxygen mask on…and then you take it off?

I’m at The Oxygen Mask Project today writing about eggs, bacon, and trying to breathe freely.

Click HERE for “Home“

 

New York, New York

So I am stepping WAY WAY WAY out of my comfort zone.

Next week, I’m heading to New York City for the annual BlogHer conference.

It’s a three day conference celebrating all things blogging.  I’m heading down a day early for the pre-conference HealthMinder day, which will have specific special needs panels.

If you don’t know me, you may not know why this is feeling so out of my league.  I’m the one much happier behind a computer screen than in a crowd.  At a party, I’m hanging by the food and drink table or leaning up against a wall in the corner.  I prefer to stay quiet, unnoticed.  I get anxious and nervous at Costco, so giant conferences make me edgy.

But I just had to go to this one.  And I have four reasons why.

Reason #1: In addition to writing here I’m also the managing editor at two other blogging sites.  For over a year now, I’ve been a part of the amazing team at the SPD Blogger Network, a group blog for parents of children with sensory processing disorder.  The site has a special place in my heart.  SPD was Howie’s first diagnosis.  Two years ago, when I started to write my own personal blog here, I connected with Hartley Steiner at her blog.  She encouraged my writing and put my blog on her site.  When she founded the SPDBN, she asked me to be there to help.  And there I’ve stayed.  We’ve created a loving, supportive and understanding community there on the blog site and on our Facebook page.  It’s the place I come to when I’m feeling particularly low or incredibly proud.  Every story is shared with honesty and love.  I understand my son better because of the incredible people who write for us every day.

The SPDBN relies on posts from parents.  Each day we post a new story.  I’m going to BlogHer to meet other parents who share a similar journey and I hope I can convince them to come write for us.

(side note: I’ll be the one with the cute Otto the Octopus.  See photo below.  Made especially for me to take to BlogHer by the incredibly talented SPDBN team Karla from The Itsy Bitsy Spider.  Find Otto, find me.)

She made those other cute guys for my boys. I may snag one of them to take with me as well…

The other site I help manage is The Oxygen Mask Project.  It was started with my friend Shannon as a way for us to reclaim ourselves, reminding us that we need to take care of ourselves if we’re going to take care of our kids.  It started small.  We started tweeting with the #yearoftheoxygenmask, sharing what we had done for ourselves that day.  For me, it was drinking my coffee when it was hot.  And showering.  While to many that sounds stupid, for me just doing that was a challenge.  I was so busy getting people out the door to school/therapy/baseball/piano/therapy that there was never anytime for me.  I hit bottom.  And now we have 880+ Facebook friends and 52 posts from writers from all over the world.  And every day we’re talking about how we’re important too.

There will be a special panel at HealthMinder day called Overcoming Burnout: Replenishing Your Reserves.  I’m going to BlogHer because this is exactly what we’ve been talking about for six months.

Reason #2: Two of my favorite people are being honored at the special Voice of the Year.  I can’t wait to hear my friend Varda as a reader for the “Heart” nominated posts.  I expect there to be very few dry eyes in the house.

And I’m so thrilled that my friend Stimey was nominated as a Voice of the Year for her incredible post Not Even Wrong.  This post changed my life.  That’s not hyperbole.  I read it at a time when we were having tremendous struggles with Howie and school.  Her post about her son Jack changed EVERYTHING about how I viewed Howie’s school life, and made me step back and look at how we needed to teach him.  Because my perspective changed, I was better able to communicate with his team at school and we all turned things around.  I am forever grateful to Stimey for what she wrote.  I’m going to BlogHer to tell her in person.  Again.

Reason #3 goes with Reason #2: I’m going to be with friends.  Including friends I’ve never met.

And, yes, I know that probably only makes sense to the blogging/social media world.

The best example of this is how I met my BlogHer roommate, Kristin.

Last summer, my kids’ school opening was delayed a week due to Hurricane Irene. I was completely stuck for ideas on how to entertain them when they were supposed to be in their classrooms.  I whined about this on my blog’s Facebook page, and this angel named Kristin asked if I wanted to join her and her boys at their swim club.  We had never met, but had a mutual Facebook friend and had become friends that way.  I sent her a message saying simply YES!  We chatted via email and text, and there we were at her swim club for the whole day.  Our boys played and swam – sometimes together, sometimes doing their own thing.  And because we were both autism moms…well the rest is history.

We’ve only seen each other once since that day at the pool.  But when I decided to go to BlogHer, I asked Kristin if she’d go too.  In addition to her amazing blog, she’s also written for the SPDBN and The Oxygen Mask Project.  So now we’re taking the bus together down to the big city, and I’m hoping she’ll help me get out of the corner.

But this is what blogging has done for me.  In addition to the incredible “in real life” friends I had, I’ve connected with a whole group of insanely smart, funny, snarky special needs parents who have taught me so much just through their words.  I’ve been lucky enough to meet some of them before and now count them as my closest friends.

I can’t wait to meet this friend, and this friend, and this friend, and this friend, and this friend.  I’ve been reading their work for so long and now I get to put a face with the words.

And I’m hoping a few other friends will come join me for a drink or two.  Or three..

I’m going to BlogHer to connect with the people who have taught me so much.

Reason #4: I need to get away.

I’m not going to lie.  This has been a long long summer.  I need a little break. In addition to the usual summer things, I’ve started a new project and it’s been a lot of work to get off the ground.  I’m stressed.  And I’m taking it out on the kids.

I need a break to sleep.  And shower.  And pee alone.

I have to get some time to regroup.  To feel better.  To breathe.  I’m going to BlogHer to find myself again.

I’m terrified of the three days away from my family.  I’ve never been gone this long.  But I know Tim and the boys will be fine.  We have an incredible support system around us here who will help if (when?) things get sticky.  I will have a social story ready for the boys so they are prepared too.

And when I come back I will be ready to take it all on again.

I’m stepping out of my comfort zone and going to BlogHer’12.  See you there.

“Start spreading the news,
I’m leaving today.
I want to be a part of it –
New York, New York.” – New York, New York by Frank Sinatra