Moms Defying Gravity

If you’ve never met an autism parent before, one thing you need to know about them is this: when they see a need, they work to fill the void.

Two moms filling the void in their neighborhood are Alysia Butler and Tina Perriello. Recently, they created SenseAbility Gym - a non profit parent led sensory gym for special needs kids. 

I've been following Alysia Butler's blog - Try Defying Gravity - every since I started blogging two years. And I had the pleasure of meeting her while at BlogHer12. 

Anyway...I had the opportunity to pick her brain regarding her latest venture.

*** 

AW: You wrote in that starting SenseAbility was something you had to do? Why?

AB: There were two reasons why we felt that we really needed to do this. First was selfish. I have three boys, my youngest two are both on the autism spectrum. It's my middle guy who needs the sensory integration supports. In school, he has a "sensory diet" built into his day - meaning he takes breaks from the classroom when it becomes too loud or overstimulating for him, he'll jump on a trampoline when he's having a hard time sitting, he has a weighted lap pad that he actually sits *on* to help him be comfortable at circle time, and around his chair at his desk he has Therabands to exercise his legs while he does his work. All of these activities help him in the classroom.

At home, we don't have the space or the money to have all the equipment that he uses at school to help him calm his body. When we attended some open sensory gym times at local OT clinics, I could see how much it helped him feel more comfortable in his own skin. And how much happier he was. I wanted to have that smile last forever. By opening our own gym, I could do that.

Stemming from that, at those open sensory gyms we saw how happy all the other kids there were as well. We watched the parents interact with their children in such a warm and accepting way. No one there cared if another child was melting down, or spinning, or making eye contact. We were all there together. There were no stares. Only support. Again, we knew we needed something like that in our area. Even to get to an OT clinic is a far drive. This was something our community was missing and we knew we had to fill that void.


AW: What do you hope SenseAbility will do for your community?

AB: We really believe that SenseAbility Gym can become an area resource and meeting place for families with special needs children. Our goal is to create a community where its members feel welcomed and supported, where parents and children can go to socialize with other families who share similar challenges. The environment will be one that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.

Our area is already incredibly welcoming and inclusive. We have very strong autism resource centers and foundations that support families like mine. This will be another piece of that support system.

AW: Starting a non-profit is no easy task, especially when resources are limited. Any tips on how to make the process easier?

AB: Starting a non-profit is hard, very hard. There were definitely moments along the way when we questioned why we were doing it this way. But we knew we couldn't do this as a for-profit venture because of the very nature of our beliefs and mission. Our goal is to reach as many families as we can who can't afford the type of equipment we will have in the gym.

Our best advice is to find people to help you. My late father used to tell me all the time to "use your resources". He would say that it's called networking, not using. He would remind me that I would help someone else if they asked, so why shouldn't I ask for their help?
 
A lot of times, we don't want to ask someone to help us because we don't want them to feel like we're using them. But people will say no if they don't want to help.
 
No one said no to us. We relied on family, friends and the kindness of strangers to help us. We had people review our materials to make sure they were in order. Neighbors took their personal time out of their evenings to walk us through the steps. We connected with friends who connected with friends. When you believe in your project, people will want to come help you and support you. 

Most importantly, though, is to do your homework. Understand your state's rules and laws around what forms you need to file and when. Make sure you aren't breaking any laws that you didn't know existed. Have a lawyer review your materials a few times.

And breathe when you take that leap of faith that it will all work out. Because in time, it will.

***

Alysia's blog is called Try Defying Gravity after the song in the Broadway musical Wicked. With moms like Alysia and Tina there is no try - they are defying gravity.

For more about Alysia and Tina's amazing fundraiser for SenseAbility, check out my Parents.com - click HERE

To read more about their plans, click HERE.

To make their dream a reality, click HERE.

The Unknown Mami

If you're a blogger, blog writer or blog reader - you have a blog you stalk.  At least I do.  (You know you do too.)  For me, there is one blog writer that I always make time to read and comment.  (And these days - it's tough to keep up.)  

Her name, you ask? She is known as The Unknown Mami.  

Whether the Unknown Mami is writing about motherhood, marriage, milk or the mundane she's always exciting to read.  Over the last few months, the Unknown Mami has made me laugh and cry.  She has inspired me to do stuff like this and this.  Her girls, Put Pie and Luna Pie amaze me.  Unknown Mami's husband - Unknown Papi, he's pretty cool too.  And even when the Unknown Mami is Aiming Low, she's soaring high. 


It's been a pleasure getting to "know" her through her writing and I hope one day our paths will cross. 


And if you haven't discovered the Unknown Mami for yourself, well then...here she is  ~    

Intro in your own words:

Hi, I'm Unknown Mami; otherwise known as The Most Interesting Woman in the World. My cleavage alone has experienced more than a lesser woman’s entire body. My sweat smells like gardenias. I may or may not be prone to exaggeration.

What inpired you to start your blog?

In 2008 at the age of 37, I became a mother. Before that my life had always involved acting in some way or another. All of a sudden I wasn't going out on auditions, or rehearsing for plays. I felt isolated and without a sense of community. I was used to creating on a regular basis and then all of a sudden... nothing. I woke up one day (April 17, 2009 to be exact), my first daughter was 7 months old, and decided to start a blog. I put a paper bag over a picture of myself and Unknown Mami was born.

Dunkin Donuts or Starbucks?  Neither. I live in San Francisco where coffee is abundant and the need to frequent a "chain" is almost non-existent. If I have to choose a chain, then it would be Peet's Coffee.

Describe your ideal day?  I would get to sleep as long as I needed to. That's it. Sleep, that's what I long for.

You're stranded on an unknown island with Unknown Papi, Put Pie and Luna Pie - what 3 items would you want to make your lives easier?  And why.

A lighter for fire, pocket knife for all kinds of things, and a laptop with internet access so that I could blog about the experience and look up tutorials on how to survive on an island.

Where do you see the Unknown Mami in 10 years?

You know what? I'm open to the possibilities. I don't know where Unknown Mami will be in 10 years and I don't want to know. I'm happy just seeing it all unfold.

Through the Looking Glass presents Heather McCracken

If you read yesterday's post, you know that over the long weekend I "met" some wonderful folks via Twitter hashtag #youmightbeanautismparentif.  One of those folks is Heather McCracken, founder and executive director of Friend 2 Friend Social Learning Society.  This is her story ~  

*

Necessity is the Mother of a Child On the Autism Spectrum

I will never forget the moment my son was diagnosed…I started to cry, but not because I was upset that the doctor had agreed with my suspicions. I cried out of relief that someone finally saw what I saw, that someone finally believed me. Up to that point I had been on my own. After eighteen long and torturous months and an incredible twelve different physicians finally, on a rainy day in December, one doctor had the courage to agree with a mother's intuition.

What I did not know was that the events of December 4, 1995 would alter the course of my life. My path from that moment forward was a journey with one goal – to ensure that son Iain would know that he was accepted, understood and loved for who he was within his family, his community and his peer group.

My son, like so many others I know on the autism spectrum, wants the one thing that most individuals his age want - to have friends. All individuals regardless of their unique challenges or gifts have the intrinsic need to play, make friends and be accepted for who they are. Individuals with autism are no different; they just express this need differently.

Fast-forward three years to when Iain started kindergarten. Watching him suffer from this social isolation in the school environment, I felt compelled to do what I could to change this situation, not only for my son, but also for other children who experience these same social difficulties. In 2002, after several years of research I designed the Friend 2 Friend Autism Demystification model and programs and founded Friend 2 Friend Social Learning Society, a non-profit charity based in Vancouver, British Columbia Canada.

The Friend 2 Friend Model works to promote understanding, acceptance, and empathy in an effort to foster mutually rewarding friendships between children with autism spectrum and related social communication disorders and their peers, siblings and classmates. This is done by designing and providing programs using age-appropriate tools such as puppets in the Friend 2 Friend Puppet Program for children ages 3-12, and a sensory Simon Says game as part of the Friend 2 Friend Simulation Game Program for children ages 12 and up. 

Our autism demystification programs work to build a general knowledge of autism by modeling characteristics of autism, labeling those characteristic with their proper names, explaining the purpose of those characteristics and finally -- but most importantly -- normalizing the characteristics, comparing them to conventional characteristics that many people have. The Friend 2 Friend model and programs also teach prosocial communication strategies to all of the children (both on and off the autism spectrum). These strategies work to promote social communication competencies in all children and provide a framework for children to feel confident in social interaction with one another. This well-researched, structured teaching model makes up the Friend 2 Friend model and is the basis for all of the programs we design.

In 2002, Friend 2 Friend began field-testing the model and delivering our first program -- the Friend 2 Friend Puppet Program. That year we (two volunteers and I) provided 35 presentations, seeing approximately 1700 children in schools, preschools and daycares in North Vancouver.  The following school year (2003-2004) we provided 287 Puppet Program presentations seeing over 14,000 children in schools throughout the lower mainland of BC. The demand for the Friend 2 Friend programs increases yearly and now in our 9^th year of operation and fast approaching our 10^th anniversary, Friend 2 Friend Social Learning Society provides a host of programs including our signature Autism Demystification programs, our Friend 2 Friend – Integrated Play Groups program, training seminars and conferences such as our satellite training programs, Can I Play Too? Community Capacity Building Project, and our publications program.

  In 2012 we are working hard to establish the Friend 2 Friend Play Centre, a state-of-the art peer play centre combining a research-based awarding-winning SCERTS®, IPG® and F2F models. 

Since our humble beginnings a decade ago, Friend 2 Friend has delivered our Autism Demystification programs to over 130,000 children and 30,000 adults. We have established two satellite partners in Calgary, AB and Burlington, VT, published three self-use autism demystification packaged programs that are subtitled in the 6 UN languages and sold worldwide, and we have delivered over 75 Integrated Play Groups Programs and 200 seminars.

I have to admit that when I founded Friend 2 Friend Social Learning Society and started designing and implementing the Friend 2 Friend Autism Demystification Programs I never imagined for one moment that I would travel the world helping parents and professionals implement the programs. I also never imaged that I would be sitting at a university waiting for my son Iain to finish classes for the day while I wrote this article.

The road we travel in the world of autism is long and winding but it is an amazing ride filled with the joy of acceptance, understanding, empathy and friendships for our children and for ourselves. It is my hope that the Friend 2 Friend programs have and will continue to help make the road a bit smoother for many individuals on the autism spectrum and their peers.

Check us out on:

Website  http://www.friend2friendsociety.org/,

Facebook  http://www.facebook.com/friend2friendsociety    

Blog http://maeonthemove.tumblr.com/

Twitter @F2FHeather

*

Through the Looking Glass Contributor: Heather McCracken is the founder and executive director of the Friend 2 Friend Social Learning Society. She is the creator of the Friend 2 Friend model and programs and a mother of three (Katie, Iain and Emma); her son Iain is on the autism spectrum. Heather actively designs and delivers social, communication peer play based programs for children ages 3 through 18 in schools and other community settings throughout North America and abroad. She an international speaker and widely published, author of "That's What's Different About Me", "Can I Play Too", "Demystifying Autism", and coauthor "Learners on the Autism Spectrum."