September 2013


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.

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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.

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(Yes.  I know it’s been a while since I wrote. This summer was…hard.  For many reasons.  I have about 20 blog posts written in my head about, well, just about everything.  But every time I sat down to write, the words just couldn’t come.  Not writer’s block. More like censoring myself. I am now beginning to learn why it was so hard to write what I needed to get out any why I just couldn’t do it. )

This post is about letting it be.  And learning to let go.  Just a little.

Howie.  Every support needed for success in school this year is in place for him.  He was staying with his incredible teacher from last year for second grade this year.  He had two amazing aides assigned to work with him – teachers who have known him since preschool. The summer saw him regressing before our eyes in so many ways and he needed this setup to work for him.

It was the first year I went into school with no anxieties for him.

And because of that, I began to let go on controlling it all.

Instead of the mini bus, I’m driving him to school in the mornings to give him time to eat in the car and relax. Those first mornings I held my breath as he got out of the car and went in alone. Now, he walks into school by himself and waits with a friend (!!!!) in the cafeteria before school starts.  Supervised from afar by his aide, but waiting independently.  .

He’s asked his aides to sit back away from him in the classroom to give him the space to be himself and show what he can do. Like the other kids, he said. He’s learning to ask for breaks appropriately when he needs them.  He’s starting to understand what his body needs and when. He’s making friends.

He takes the bus home and listens to his iPod with Feel This Moment on loop and behaves appropriately.

Homework time is easier.  The calls from school are fewer and far between.

And I am breathing.

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I asked him what he was thinking about here. He told me “I’m just happy.”

Lewis.  Every plan for him last spring was for him to go to pre-K this year half days in the afternoon.  But after an outside evaluation found he needed more, the school proposed the full day pre-K inclusion class with more supports for social skills, speech and more opportunities to get him ready for kindergarten.  Everything I had planned for this school year was turned on its head.  He would be gone 6 hours a day, eating and toileting turned over to the school.

The teacher was Howie’s teacher for preschool.  The best of the best.  Eyes on him all day to help him navigate through all the areas that were still hard for him.

I started to let go. I held my breath and hugged him goodbye on that first day.

After only three weeks, Lewis is fully entrenched in the new routine.  Eating lunch and snack with friends.  Reading.  Singing.  Walking in and out without me.

Six full hours for me.  Alone.

And I am breathing.

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Thumbs up for being a big kid

Gerry. This week he is away with his sixth grade class.  The whole week.  He’s never been away for more than 12 hours even on that rare sleepover.  There’s no contact, no pictures.  He’s been anxious about this trip since 3rd grade.  But he wanted to go with everything he had.

The night before he left, every fear came out.  He begged me not to send him, to come up with an “out” for him.  He told me that he knew deep down that he needed to be there – no, wanted to be there.  But anxiety was winning.

I was that kid.  I was the one begging not to go to summer camp and then begging to come home.  I was the one who hated sleepovers with a passion. I was the one finding my mom on campus my first weekend of college, homesick as hell.

I still am that kid, struggling with my anxieties as I get in the car, or airplane, or even going for a walk.  Dealing with the fear of the unknown.

But I had to let it go.  Let him go.  I took a deep breath and told him he could do this.  That I knew he could win. There may have been a bribe (or three).

He got on that bus Monday with all of his classmates.

He comes home tomorrow.

And I am still breathing.

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I’m so proud of this kid.

With every step they take away from me, I learn how to take those steps alone.

And…

Their independence has become my new life line.

I’m able to work more at my business.

Work more on being a better wife.

And mother.

Work on getting back to me.

My first and last selfie. I straightened my hair - something I've wanted to do since I was three.

My first and last selfie. I straightened my hair – something I’ve wanted to do since I was three.

And with all that, the suffocation of summer is gone.

As is my inability to write here.

By letting it be and allowing them discover who they are, I’m now able to find me again.

Let it be, let it be
Ah let it be, yeah let it be
Whisper words of wisdom, let it be
And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be
I wake up to the sound of music,
Mother Mary comes to me
Speaking words of wisdom, let it be
Yeah let it be, let it be.” – Let It Be by The Beatles