The Rainbow Connection

Connection

“Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself . . .”” – C.S. Lewis

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Note in Howie’s log book last week from one of his 1:1 aides: “After social group Howie insisted on flapping his arms.  The group was not at all overly stimulating or excitable.  When I talked to (him) about this he said ‘sometimes autistic people have to do that thing.’ I said ‘stimming’? And he said ‘yes I need to stim and flap my arms’…he said sometimes he needs to flap if he’s excited.”

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Howie had his eighth birthday party two weeks ago.  We invited his whole class because, well, because.  I could give you some reason like making sure to include everyone but truthfully there wasn’t anyone he thought he couldn’t invite. He’s been with most of the kids for two years and he really wanted them all at his party. We did one of those indoor trampoline places parties because where else can you go with 28 2nd graders and contain them all?

I was nervous of course.  I don’t get to see how kids interact with Howie except for a few moments here and there.  I get the log book notes and information from teacher meetings, but I never see it with my own eyes.  I watched these kids interact with him – seek him out – not just because it was his birthday but because they care about him.  They told inside jokes on the bench as they waited for their jump turn.  They checked in on him when they were jumping. They jostled for position around him for cake.

When we got home and settled in, Howie opened his presents.  Some cards were on green construction paper (his favorite color).  Some cards had his special “Hero Howie” symbol on them.  All of the cards had special note, poem, story, or picture drawn just for him about him.  Every present was something he wanted that he didn’t already have.  I asked Howie how the kids knew.  “They asked me in school and I told them.” he said matter-of-factly.  Well of course.

That night I sent his teacher some pictures from the party with the note: “All those kids are quite incredible and so so good to Howie. They knew what he liked and how to interact with him.  That is all because of you. Thank you for creating a classroom and a space that allowed my kid to have his real big first friend party. You sure I can’t convince you to teach third grade? :)”

His fabulous teacher wrote back: “They absolutely adore him and are really cheering for him each and every day.  I’m so glad to hear that the party went well!”

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Note in Howie’s log book three weeks ago from his other 1:1 aide (paraphrasing): “Howie seemed to be having a hard time with his shirt.  It was making him uncomfortable all day and he couldn’t focus.  We sat and talked about the things that I am bothered by and he was able to work through it.  It really seems to help him when others connect with him about sensory issues.”

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From my blog post “Born This Way part two“:

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

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For some April is about Autism Awareness.  And that’s fine and good and it’s what works for them.

In our house, though, this month (and every month) is about autism connection.

According to the experts, that’s supposed to be something that my boys can’t do, right? Connect with others.

How wrong could they be?

I see connection every day with my kids – between teacher and student, between classmates and friends, brother to brother, and parent to child.

I see it in the children who come to our sensory gym. When families are given the safe space (physically and emotionally) for their kids to play, relationships and playdates and connections blossom.

For us- for my boys, for me as their parent, this month is about connecting  to find that piece – that tie that binds – to make one feel less alone.  To make one feel part of a community.

And for helping the world understand that community, one conversation at a time.

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From my personal Facebook status on March 31st:

“When Howie is feeling “out of sorts”, he often asks for a “mom squish”. Probably because I am the squishiest of the bunch.

Tonight, I was complaining that my back hurt as I sat down crooked on the couch. He came over to me, looked me right in the eye, and said “do you need a Howie squish?”

It’s the eve of Autism Awareness Month and every day my kids smash and crash their way through every stereotype and every myth. But in our house it’s not about awareness. I want them to know that they are accepted, understood, and loved for who they are.

And those Howie squishes? They make all the aches and pains go away.”

Happy Autism Connection Month.

 

“Why are there so many songs about rainbows
and what’s on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we’ve been told and some choose to believe it.
I know they’re wrong, wait and see.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it’s done so far.
What’s so amazing that keeps us star gazing
and what do we think we might see?
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it’s probably magic.

Have you been half asleep and have you heard voices?
I’ve heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I’ve heard it too many times to ignore it.
It’s something that I’m supposed to be.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me. ” – The Rainbow Connection by Kermit the Frog

A great way to be part of the conversation is to purchase one of these #wearthechange shirts created by my friend Jess.  Through the month of April, the net proceeds from these shirts will be split three ways with the Doug Flutie Jr. Foundation for Autism, The Autistic Self Advocacy Network, and my nonprofit SenseAbility Gym.

Here is Gerry modeling his new shirt (he wanted to remain headless).  Click on the caption to go to the Zazzle Store.

http://www.zazzle.com/togs2gobydiaryofamom

 

Hammer and Nail

(Editor’s Note: I was contacted by Fun and Function with an incredible offer: would you like an equipment donation to your nonprofit sensory gym? No strings attached?  The answer was an ABSOLUTELY YES AND THANK YOU! And, well, when someone does something that amazing for you, of course I’m going to write about it.  I’m a blogger and a business owner.  That’s what I do.)

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

It’s an interesting journey – this special needs parenting gig.

When you get your child’s diagnosis, whatever it might be, initially you can feel quite alone.  You think no one has a kid like mine.  No one will understand the challenges he faces.  No one knows what he’s feeling or what I’m feeling.

And then slowly you find your village.  Maybe it’s in person at the drop off for your child’s special preschool program.  Maybe it’s through a support group.  Maybe it’s online.  At some point, you discover that you are not alone and neither is your child.  There are people out there who “get it” and will do whatever it takes to help you “get it” too.

I’m very lucky to have found my village both in person and online.  I have friends who have helped me when I was lost and friends who understand my children better than I do.  We have a team of support, not just for me but for our whole family.

And it’s because of that support that my friend Tina and I were able to open our sensory gym.  We saw a need and wanted to fill it.  We believed in the fact that all children deserved access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics. We wanted the gym to be a place where parents and children could go to socialize with other families who shared similar challenges. To help them find that village.

As we started the business, we found that there were other businesses out there with a similar goal.

One of these is Fun and Function. It was started by Aviva Weiss, an occupational therapist and a mom of six.  She was frustrated by the lack of fun toys for children with special needs so she began creating her own.  And now she’s on a mission to make “different” play fun.

Just like us.

Her company contacted me recently with this incredible offer: “At Fun and Function we believe that special needs children are awesome, and are always on the prowl to connect with likeminded individuals. We would be honored to make a donation to your SenseAbility Gym and we were wondering if there was something in particular that you might have your eye on.”

Who does that?  Oh right.  Companies started by people who “get it”.

After saying something like “Oh my goodness, thank you!  This is huge and amazing!” I asked if there was a way that I could interview Ms. Weiss for our blog.

I asked her what inspired her to start the business and where the idea came from.  Ms. Weiss answered with a familiar answer – she was inspired right at home, by her daughter.  Her daughter needed the types of equipment for deep pressure and calming, but at the time all she could find were things that were too clinical looking and/or very expensive.  She knew she had to change that and knew that if her daughter needed it, there were other kids out there who would need it as well.

We talked about the challenges she’s faced along the way and what kept her going.  We discussed how hard it is to start your own business, to find the money to do it, to spend your own money to keep things going.  But the mission keeps you going – knowing that you are helping families just like yours.

Every word she said rang true for me.  It was as if she was saying the words in my head – all the reasons why we started SenseAbility Gym were the same, all the challenges were the same, and the driving force is the same.

I asked the question that many people ask us here – is there one thing that could help a child with sensory processing disorder?  If you could recommend one product, what would it be?

She answered with a very familiar answer.  There is no one thing.  Every child is different.  Every child’s needs are different.  And they change.  There is no one sensory “tool” that helps every person.  “I can tell you what our top sellers are.  Things like our weighted compression vests are very popular and have been from the start,” she said.  “But not every child needs every item on this list.  It’s why we created the ‘Find Your Solution‘ filter at the bottom of our website.  Parents, caregivers, teachers and adults can enter in their age, budget and need and we’ll help them find the best products for them at the right price.”

I asked her what those favorite items were and what were best sellers from the website.  She suggested their weighted compression vest, the Soft Saddle Scooter, Sammy the Seal Swing, Social Emotion and Guess How I Feel Games, Squishy Gel Cushions,  Cool Chews and Bite Bands.

Here at SenseAbility Gym, we’re in love with the Air Lite Junior Bolster Swing.  Generously donated to us by Fun and Function.

Ms. Weiss and I talked for about 15 minutes until I asked the question that I ask many parents who have older children.  What advice do you have for families who are just starting out on this journey?

Her answer was the best.  Don’t let anyone tell you how to feel or what your child won’t be able to do. It’s okay to grieve and be angry.  But then it’s time to get back to figuring out with your child what they need and what can help them.  Then anything is possible.

Anything is possible.  And when you believe in your child and yourself there isn’t anything they – and you – can’t do.

Like start your own business.  Or your build own community.

I am so grateful to Aviva Weiss and people like her who have blazed the trail for parents like me.

All it takes is an idea and the will to do it.

She found her will by looking at her daughter.

I found it by looking into these eyes here.

Build it and they will come.

“I had a lot of good intentions
Sit around for fifty years and then collect a pension,
Started seeing the road to hell and just where it starts.
But my life is more than a vision
The sweetest part is acting after making a decision
I started seeing the whole as a sum of its parts.
My life is part of the global life
I’d found myself becoming more immobile
When I’d think a little girl in the world can’t do anything.
A distant nation my community
A street person my responsibility
If I have a care in the world I have a gift to bring.” – Hammer and Nail by Indigo Girls

 

With A Little Help From My Friends

Dear Facebook,

We’ve been together a while, me and you.  A little over five years now at this point.  And you know how I feel about you.  Addicted from the start.  Heck, I wrote about you and it was my first published piece – in The Boston Globe Magazine no less. I’ve tried to quit you but I can’t.  I have too much personally invested in you: time, friends, and relationships.  I can’t walk away.

Professionally, however, you’re making it really hard to stay.

Like many others, I read the article in Ad Age last week and choked a little:

The article states: “If they haven’t already, many marketers will soon see the organic reach of their posts on the social network drop off, and this time Facebook is acknowledging it. In a sales deck obtained by Ad Age that was sent out to partners last month, the company states plainly: “We expect organic distribution of an individual page’s posts to gradually decline over time as we continually work to make sure people have a meaningful experience on the site.””

“A Facebook spokesman confirmed that the overall organic reach of Facebook posts from brands is in slow decline. “We’re getting to a place where because more people are sharing more things, the best way to get your stuff seen if you’re a business is to pay for it,” he said.”

So here’s the thing, Facebook.  I’m a small blogger with a small audience.  I have a fan page with about 700 “likes”.  They are truly mine. I didn’t pay for any of them. These are people who decided that they like what I write about my family and about our journey and they want to read more.  I am incredibly grateful for each and every one of them and they are my online support group and community.  Because of my readers I have learned so much about my children, about autism, about sensory processing disorder, and about being a parent of three boys.  Many of my readers have become my “in real life” friends, without whom I would be lost.  I share my personal blog posts on my blog’s Facebook page for that community.  I also share others’ posts there too – many talented writers who are on the same journey because I love what they have to say and know others would as well.  Not only is it a way to spread awareness, it keeps my personal Facebook page from getting filled with articles that half of my friends don’t care about.

So when I look to see that only 100 of the 707 people who like my page have seen my last post?  I’m at a loss.

Additionally, I’m a small business owner.  Of a small nonprofit.  We serve our local special needs community with our indoor sensory gym.  SenseAbility Gym has a Facebook business page where we have our hours, pictures of our equipment, and a “check-in” feature for families who visit. On that page, we have 872 “fans”.  Many of them are our customers, many of them are also our donors.  We have a very small controlled budget.  We are funded only by donations, grants, and the fees that families pay when they visit us.  We are playing with other people’s money.  We use our Facebook page as it was meant to be : a social media connection to our community.  We share our class offerings and our hours, but also inform people of local sensory friendly movies, plays and activities.  We built this place to connect families in our area.  Because we have little (no) advertising budget, we rely on word of mouth and social media to inform families about us and to stay open.  Additionally, we need that online connection to the local businesses and organizations generous enough to support our mission.

So when I look and see that only 94 people saw our photo about our free yoga classes for kids with special needs and 303 people saw our post thanking families for joining us for our holiday party?  I just don’t get it.

Do photos get more or less visibility?  Do I share a link in the status or the comments?  Do more comments equal more prominence in someone’s newsfeed? Do I write in all caps?

I don’t really know what to do here, Facebook.

I get that you need to make money.  I really do.  You’re a business and you’re not the Facebook of five years ago or even two years ago.  You have investors to answer to.  You have ads to sell.  I get that the point is trying to get us to “boost our posts” by paying for it.

But we’re not Pepsi with 30 million fans.  They have a market they need to target and they have a need to expand their fan base to buy more of their products.  They have the money to do it.  And yes, I get it.  Some bloggers do make money as do some nonprofits.  I know that.

But I use my blog page and our business page in the same way that I use my personal page. Connection.  Community.  Communication.  We’re not looking for inflated fan numbers to spread our brand.  We’re looking to get the information out to the people who chose us and who are truly interested in getting information from us.

I will not pay for my blog posts about my son’s great day at school to be seen by more people.  Additionally, I can’t in good faith use donations and grant money to boost our business’ posts to let people know when we’re closed for a snow day.  I don’t want to pay for our fans’ friends to see our latest piece of equipment when they have no interest in our mission.  I just need to communicate with the people who actively choose to hear from us.  All of the people.

So what do I do, Facebook?  How can I keep using you in the way I need to?  There has to be a way to separate the bloggers from the newspapers, the Wal-Marts from the SenseAbility Gyms.  There has to be a way to categorize us differently.  Share the algorithms for newsfeed visibility so we know what to do. You need to be transparent for your investors.  Be transparent for your users. Help a mom out here, Facebook.

My husband told me the other day that people don’t fear change. They fear the uncertainty that comes with change.

That’s what I have here, Facebook.  I fear losing the community that I worked so hard to build and the business that I have put my heart and soul into creating.  These aren’t just online names to us.  They are our friends.  I need them and they need us.

So what do I do?

Please don’t say Google+.  Please.

In the meantime, I’ll remind people that they can follow me on Twitter at @trydefyinggrav and @SenseAbilityGym.  I’ll let them know about our day or our latest community project in 140 characters or less.

Sincerely,

Alysia

“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

 

The Ballad of SenseAbility Gym Part Two

Yes, once again, I know that’s  not a real song.

A year ago, I wrote The Ballad of SenseAbility Gym.  The post was about a vision.  A dream.  An idea of creating a space where all children and their families are welcomed and accepted.

A year ago, I wrote 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“

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.

And this:

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.

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.

Then I wrote this:

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.

And you came through.  We had support come in from all over the country. People not only wanting to help us financially, but with advice.  People who knew people in our area.  People who wanted to open their own space in their own towns.

Thanks to you, we raised the money we needed to open the doors of SenseAbility Gym in February of this year.

That vision – that dream – for a community where everyone is accepted and welcomed came true.  We may have created the physical space, but the over 200 children and families that we have met since then have made the vision a reality.

I could write and write about this amazing place, but the stories aren’t really mine to tell.  They are theirs:

This place has given me a purpose.  It has connected me with the most incredible business partner and friend.  It has created a space where my kids are welcomed and accepted and known by name.

The families who come in have become my second family.

Thank you to every one of you who has supported us in this journey. Our community is so grateful.

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I’m not very good at asking for money, but I have to.  SenseAbility Gym relies on private and corporate donations and grants to stay open.  No one at the gym takes a salary for working there.  We keep our membership fees low so every family can afford to come.

To do that, we need your support.  Every dollar goes right back into the gym – towards new equipment purchases, our rent and insurance, and programming costs for our free special needs yoga classes, social skills/friendship groups and parent meetings.

Click HERE to donate via PayPal or click HERE to visit our donation page at razoo.com.

 

Tears in Heaven

Instant panic.

That feeling you get when you turn around and your child isn’t there.

I could tell you about the time when we were in a hotel near StoryLand in New Hampshire.  Howie was three.  We were staying in one of those two room suites where you could close off the bedroom from the other part of the room.  I had baby Lewis ready for the shower, and I went into the bedroom part of the suite and handed him into the bathroom to Tim.  Howie and Gerry were in the other room. Gerry was watching a Red Sox game on the TV.

I come out of the bathroom and Howie is gone.

“Howie?  Howie?  Where are you?”

No answer.

I check in the closet.  The drawers.  Behind the table. Is he hiding from me because he doesn’t want a shower?  Playing a game? Both rooms together are about 700 square feet.  He’s nowhere.

“Gerry!  Where is Howie??”

His eyes shift to me from the TV.  “I don’t know.”

“Howie!!  Howie!!”  But I know full well he won’t answer to my screams.

After what seems like a lifetime, I notice that the door to the room is slightly ajar.  I run out into the hallway.

At the end of the hall I see Howie.  In nothing but a pull-up.  I grab him just as a man comes out of his hotel room.

“I looking for you.” he said.

He was trying to find where I was when I went into the bathroom.  The door to the hallway looked like the door to the bedroom in our hotel room.  He opened the wrong one and left.

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I could tell you the statistics.  This from the National Autism Association: “a study released in Pediatrics showed that 49% of children with autism like Mikaela are prone to wandering, a rate four times higher than their unaffected siblings. This indicates that this is not an issue of bad parenting. From 2009 to 2011, 23% of children who died following a wandering incident were in the care of someone other than a parent”

I could tell you that I know I am lucky that my kids aren’t bolters. For the most part they stay with me in unfamiliar and familiar places.  But they lack impulse control.  They don’t answer to their names when called.  And all it would take is that One. Split. Second.

But there are many children who do run.  With no sense of fear or danger.  Kids that will follow a butterfly down to a creek or decide it’s time to leave and get in the car and lock themselves in.  These are  my friends’ stories.  And their friends’ stories.

I could tell you that three little ones lost their lives this week after wandering and drowning.  Three.

But instead…

To honor Mikaela and Owen and Drew I am doing one thing today.

I am printing out the First Responder profile form for my kids and bringing it to our local police and fire departments.  It’s on page 10 of this PDF.

It has questions like: Other Relevant Conditions (other than autism): _ No Sense of Danger   _ Nonverbal    _Attracted to Water    _Seizures

It has a info sheet with tips for searching for an autistic child and how to interact with a child once found.

It has a spot for a recent photo.

It’s one more layer of protection for my boys.

I urge you to do the same for your child too.

My heart is with the Lynch, Black and Howell families today and always.  We are with you.

“Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
Cause I know I don’t belong here in heaven” – Tears in Heaven by Eric Clapton

Many special needs bloggers are joining together today to bring comfort to the families and to shine a light on autism and wandering.  To read them, click HERE for the link up at Adventures in Extreme Parenthood

 

I Got A Name

I watch him carefully as he speeds by me.

His training wheels clank-clank as they hit the uneven pavement in our driveway.

He’s doing laps on a track he made out of chalk.  One big circle.

Around and around and around.

I’m sitting in my winter coat on a beach chair on our lawn.  It’s the first nice day of spring but there’s still a chill in the air. His brothers have gone in for the day but Howie refused.

“I’m not done”, he said.

So neither was I.

Understanding

I think about Autism Awareness Month.  Or Autism Acceptance Month.  Or Autism Awareness/Acceptance Month.

I think about the posts I have written in the past.  What it mean to us to “Light It Up Blue“.  Why I share what I share.

I think about what the words awareness and acceptance really mean.  I mean really really mean. And whose awareness?  Whose acceptance?

Globally? Nationally? In my town?

Awareness

Howie stops for a moment and gets off his bike.  He surveys the track.  I can see it in his eyes that something is missing.  Something about the track is not quite right.

I can’t see it.  To me, it is perfect.  The lines may not be straight, the arrows showing the right path are jagged.

But still…perfect.

His eyes see things I can’t.  His mind works differently than mine.  He can create elaborate pictures and structures in his head and put them together with Hot Wheels Tracks, Legos, blocks and chalk.  I can’t draw anything but a stick figure.  I can sit through a two hour lecture on the history of New York’s geography.  He can’t sit through a five minute lesson on contractions.

I am aware of this.  But is he?

Howie adds one more line to the track and colors it in.  He hops back on his bike and the circles begin again.

Acceptance

I know the statistics.  The 1 in 88 or 1 in 50.  Or in my house…the 2 out of 3.

The answer to the question of whose awareness and whose acceptance is easy for me this year.

It’s Howie.

We’ve started talking about how his brain works differently than others sometimes.  How some things are harder for him at school and somethings are easier.  We’ve talked about sensory overload and calming our engines and using his sensory toolbox to help his body feel better.

But…we’ve never given it a name.

Up to this point, we have been his advocate.  I have piles of papers and notes and spreadsheets and doctors’ reports that speak for him.

It’s time to teach him how to speak for himself.  How to advocate for what he needs and why.  Not to escape the hard work or to use as an excuse.  But to truly understand what makes him successful.  What makes things challenging.

So if a kid makes fun of him for flapping his arms up and down when he’s excited, he can say why he does it.  Or if an adult makes him look at them in the eye he can explain why that’s hard for him. Or when he creates the most incredible stories and drawings he can explain why his brain works the way it does.

Or when he just needs to ride his bike around in circles for an hour before dinner he knows why it makes him feel happy.

His older brother Gerry has accepted it.  Tim and I have too.  We can share our version of Autism Acceptance Month as parents and siblings.

But the understanding/awareness/acceptance needs to come from within too.  From Howie himself.

We will light our house up blue and wear our blue clothes tomorrow.

And slowly…in our way and in our time…Howie will understand that we’re doing it for him and with him and his younger brother.

Awareness and acceptance will begin at home.

And then Howie can be the one to share it with others.

Free

He zips by me again for the 100th time.  The early spring wind is starting to kick up and I start to shiver.

I ask him to pause for a moment so I can take a picture of the first bike ride of 2013.

He stops, smiles, and poses.

“What are you thinking about?” I ask.

“I’m thinking about being me,” he replies.

And he speeds away.  The clank-clank of the training wheels follow behind.

Awareness.  Acceptance. Understanding.

Starting locally.  So he can share globally.

“Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by

And I’m gonna go there free

Like the fool I am and I’ll always be
I’ve got a dream, I’ve got a dream
They can change their minds but they can’t change me
I’ve got a dream, I’ve got a dream
Well, I know I can share it if you want me to
If you’re going my way, I’ll go with you

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by
Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by.” I Got A Name by Jim Croce

 

The Sun Will Come Out…Tomorrow

I have had so much to write about and no time to do it.

But I had to share this.

I took all three boys to see a local production of the play “Annie”.

“when I’m stuck with a day that’s gray and lonely…”

And we were able to go thanks to the incredible accommodations made by the Open Door Theater and the Autism Alliance of Metrowest.  They made it an autism-friendly show.

Which made it a family friendly show for us.

Read my review HERE at the Massmoms.com section of the Worcester Telegram.  And see why this experience meant so much to me.

 

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.

 

Coat Of Many Colors

I took another sip of my wine and I opened the coat closet.

I was spending the evening gathering up blankets, shoes, and sheets to donate to a clothing drive for the victims of Hurricane Sandy.  The Girl Scout troop in our town arranged for a large truck to be at our high school in the morning and I wanted to help fill it.

I found sweaters that were still packed up from our move six years ago.  Crib sheets that were of no use to us anymore.  Winter boots that my kids had outgrown years ago.  All into the box.

The posting came on Facebook that what they really needed were jackets.  The weather was about to get quite chilly and no power means no heat.

So out came another empty box.  And to the coat closet I went.

I moved some winter jackets around and some rain coats.  The ones that still fit my kids went to one side.  The LL Bean pullover fleece that I hadn’t worn in years came out.  As did a button down Gap jacket.

And then there it was.

My dad’s old gray Black Diamond fleece coat.

It’s been hanging in one coat closet or another of mine for almost 14 years now.  One of three articles of clothing that I have of his.

I don’t wear it.  Ever.  It hasn’t been washed since he died.

It just hangs there in the closet.  No matter what season, that coat stays.

I can still see him in that coat even after all this time.  It’s that soft heather gray color with black trim around the collar.  It was an in-between season coat – not quite warm enough for a winter coat but too warm for early fall and late spring.

A “mud season” coat I guess.  Going by Vermont seasons.

He had a gray Black Diamond vest that was just like it and he wore that all the time when he was sick.  When I think back to the memories of him those last months, he’s in that vest.

I don’t know where that vest is now.

And really I never understood the vest anyway.  How does that keep you warm?  I need something that covers me…something that envelopes me.  Something I can feel secure in.  Like a big fleece hug.

The big fleece hug hung there in the closet.

It was begging me to donate it.  It makes sense, right?  After all these years it should go to someone who really needs it. To someone from the hard hit areas of Long Island where my dad grew up.  Or to someone from the city where he first taught.

And considering how much he gave to others in his life and how much he taught us to give back, shouldn’t I give up this coat so that someone else can use it? So that a father can wrap it around his daughter to keep her safe and warm?

I pushed the coat aside and pulled out a 3T sized raincoat.

I closed the coat closet door.

The memories are starting to fade after all these years.  Some days I feel him so close, other days he’s so far away.  I try to remember things but I can’t.

It’s just a coat.  But I still need it.

I take the 3T raincoat and put it on top of the box.  I slip some money into the pocket of the LL Bean pullover fleece, hoping to bring a “Hey! Found money!” smile to whomever wears it next.

Tomorrow I’ll put the boxes in the car and bring them to the high school.

I sit here now in the dark with another glass of wine.

The coat is just on the other side of the wall.

It will stay with me for a while longer.

“And oh I couldn’t understand it, for I felt I was rich
And I told them of the love my mamma sewed in every stitch
And I told them all the story, mamma told me while sewed
And how my coat of many colors, was worth more than all their clothes.

But they didn’t understand it and I tried to make them see
that one is only poor, only if they choose to be
Now I know we had no money, but I was rich as I could be
In my coat of many colors, my mamma made for me
Made just for me.” – Coat of Many Colors by Dolly Parton

Take a moment to donate what you can to relief efforts on the East Coast.  My family and my friends who are like family need your support.  If you can’t donate money, find a drop off location for coats, blankets, shoes, and non-perishable items.

Please.