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.

Dear Mom at school pick up today,

“I have been there too.”

I’m not even sure what else to say but that.

I know that feeling.  The one when you don’t just think that all eyes are on you.

You know they are.

How could we not be watching?  The screaming.  The flailing.  The teachers huddled around your child.  And you.

We were all right there the first day.  We stood in the pouring rain as you tried to coax your son out of the school doors. In hushed tones we all chalked it up to first day jitters.  I even joked about it to my friend standing next to me.

“My son used to hate leaving school too.  I’d have to drag him out of here,” I said with a nervous laugh.

But something in me just knew.

And then today as we all left school I glanced back at the playground and saw you there.  He didn’t want to leave.  Kicking, screaming. Our fabulous teachers were sitting with you and him, keeping him safe as he melted down.

You know we’re trying to avert our eyes.  And through the blinked back tears you appreciate it.  You do.

In the car, I let out those tears you were holding in.

I was right there where you are.  Just four short years ago.

That was me.  That was Howie.  Our first year of preschool.

I could hear him through the window as he screamed that he didn’t want to leave.  Every other child came out but mine.  He would be carried out, flailing his arms and legs, yelling that he didn’t want to go home.  I stood there every morning with my eyes burning and a lump in my throat as I struggled to bring him out with one hand, balancing the 20 pound bucket car seat carrying baby Lewis in the other.

I was crushed emotionally and physically.

Those moments, for me, were my worst parenting moments.  I felt like a failure.  I could handle the meltdowns and the behavior issues at home.  I could just let him line up his cars and stay in our house and watch the world go by out the window.

But the public display outside of school put me on display.

Everyone else’s kid cries when they leave their parent for the first days of school.  Not mine.

Everyone else’s kid runs into their parent’s waiting arms when school is over.  Not mine.

I felt like the world was sitting in judgement of me.  Why didn’t he want to be home?  What was she doing to him there?

My only saving grace was that the staff at the school knew me personally.  They knew I wasn’t beating him or abusive in any way.  They worked with me to create transition boards for Howie for school.  I took some pictures of our daily after school activities and every morning I’d let them know three things we were doing when we got home.  Maybe it was lunch, playing with cars, and watching a show.  Maybe it was a trip to Target.  We soon discovered that it wasn’t that he didn’t want to come home, but that he didn’t know that the day would continue on with new activities.  Slowly, we were able to get to a place of a smoother transition out of the classroom.

The staff knew this wasn’t about our home life, but more about Howie’s ability – or inability – to transition from home to school and back to home.

You see…this was all before his life changing – and in many ways our life saving – autism spectrum diagnosis.

So…back to you, Mom at school.

I’m not saying that your son is on the spectrum.  I don’t presume to make those judgements or diagnoses.  Maybe you already know what is going on with him.

Maybe it’s just a phase.  Or maybe it isn’t.

And, if you’re like me, you’re feeling stuck.  The last thing you want is to draw attention to it all but you also want someone to step in.  You want no one to see, yet you need someone to see it too.  Someone to validate that it isn’t just you failing as a parent.

I’m offering myself as that someone to you.

I’m not sure how to approach it, though.  Had someone come up to me out of the blue, especially another parent, I might have rejected it outright.  Said “nope, we’re doing just fine, thank you.”  It took a special teacher to break through to me before I could be the one to reach out.

So, if you’re reading this…next week I’ll hang back a little at drop off and introduce myself.  Just to say hello.  First week of school and all that.  The next morning, I may mention that I have boys too.  I may mention how lucky we were to have this school in our town because they were so good with all three of my boys, especially my middle guy who had some issues leaving school too.

I’ll figure out someway to let you know that you’re not alone.

Some way to let you know “I have been there.”  And some way to let you know it can – and does – get better.

See you on Monday.

Sincerely,

Alysia

At age 3. First day of preschool.

And this year…age six starting first grade

You’re not alone, together we stand
I’ll be by your side, you know I’ll take your hand
When it gets cold and it feels like the end
There’s no place to go, you know I won’t give in
No, I won’t give in

Keep holding on
‘Cause you know we’ll make it through, we’ll make it through
Just stay strong
‘Cause you know I’m here for you, I’m here for you” – Keep Holding On by Avril Lavigne

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

An open letter to the woman who subbed in my son’s classroom…

Dear Substitute-

You caught me off guard today.

I was running late for a meeting when you stopped me on the sidewalk outside of the school.

When you asked me how Howie was doing, I thought it was just small talk at first.

So I replied with my usual “fine, thank you.”  Because it’s true.  For the most part.

But then you went on.  Sharing that you had been in his classroom several times this year, working as an aide.

I knew that, of course.  Small town and all.  And we’ve known each other from the neighborhood for a while so I recognized your name as a sub.

“That Howie,” you said.  “He really is…um…he really is his own person isn’t he?”

Suddenly it wasn’t small talk anymore for me.

You stopped me cold.

In a split second, a thousand thoughts flew threw my brain.  I truly wanted to believe you meant this in a nice way.  I really did.

And I wanted to believe that you know about my son’s challenges, especially in the classroom.  That before you went in as an aide you were told about his autism and sensory issues and what to expect.  I know the school staff would have shared this with you.

But it was the tone of your words that told me this wasn’t a compliment.

I stared at you for a moment.

I wanted to tell you what a hard year this has been for my little boy.  That the transition to kindergarten was not an easy one and he never recovered until just last month.  I wanted to share how his autism presents itself in the classroom and that sometimes things are just so hard for him that he lashes out at whomever is next to him.  I wanted to apologize for anything and everything he might have said or done in your presence.  I wanted you to know that he can’t help it.  He doesn’t mean it.

And then I wanted to scream at you with a what the hell are you talking about? What are you trying to say?  That my son is difficult?  Frustrating?  Hard to work with?  This is my amazing little guy!  You don’t know.  How could you know? Do you see what he goes through every damn day just to sit in that room? You, with your perfect children, sitting in judgement of my child?  How dare you?

I wanted to tell you how proud I am of him for just surviving this year.

But instead

I simply said,

“Yes. He is his own person, isn’t he.  I’m pretty proud of that.”

I turned around.

I walked into the school.

You didn’t see the tears well up in my eyes.

But you did see that I held my head up high.

I will continue to teach my sons – all three of them – that it is okay to “be your own person”.

I hope your daughters are their own people too.

However..

Forgive me if I don’t ever stop for small talk with you again.

Whether I’m right or whether I’m wrong
Whether I find a place in this world or never belong
I gotta be me, I’ve gotta be me
What else can I be but what I am

I want to live, not merely survive
And I won’t give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am.” – I’ve Gotta Be Me by Sammy Davis, Jr.

The internet has been abuzz with “The Mommy Wars” – the notion that mothers are in competition with each other over who has the “better” way of parenting.

But I’m involved in a different kind of “Mommy War”.  It’s not about me comparing myself to the mom down the street or across the country.

I’m at The Oxygen Mask Project today, talking about a war that rages inside my own head.

Not the battle of Am I Mom Enough.

But the battle of Am I A Good Enough Mother?

And I have some special friends to thank over there too.

Click HERE for “What Makes You Beautiful”

And if you haven’t yet, read some of the amazing posts over there.  Truly incredible moms and dads sharing what makes them stronger today.  Next post could be from you.

A friend said to me the other day “You spend an awful lot of time on Facebook and Twitter.  What are you doing on there?”

This is my response:

It was simple at first.  I got an email asking for some advice.  I replied.

And then I got this back:

I am really completely floundering in all this…the bottom line is that I am really just trying to figure this all out on my own. Every time I reach out to our current “team” from Early Education they simply tell me what a wonderful job I’m already doing. Well, that’s nice to hear, but it’s not enough. I KNOW I’m not doing enough. I need someone to give me some tools, some ideas, something that gives us a direction.

We haven’t really established a doctor who understands the issues and is working with us. We have pretty much only taken him when he is ill. We now have a medical card for him, but don’t know how to begin choosing a doctor…I don’t want to have to go through trying a bunch to find the right one. But I know I need to bite the bullet and find someone who can work with us.

I’m rambling now. Sorry. Bottom line is, thanks for replying, and thanks for listening. Sometimes I feel that I should apologize for taking up people’s time because I know what a precious resource that is.

She needed help.

She was on her own.

I know this feeling all too well.

I wrote back:

Keep rambling. Yes, we all have things going on. But that’s why we’re here to support each other.
I know that floundering feeling. Can I help by asking some friends is they know good docs in your area that have worked with kids on the spectrum? I have some good connections.
I know that insurance reform is happening where you live, so hopefully you’ll have some relief there and access to more home help. It sounds like that’s what you need the most right now. Let’s see how we can get you that .
Keep talking to me and others. Please. And please remember to try to take care of you too. Just a few moments for you, with some peace and quiet.
Let me know if it’s okay to ask around. Anonymously of course.

So I did.

I posted it on my blog Facebook page.  I sent out a tweet.  I wrote an e-mail or two (or three or four).

And then it happened.

looking for autism folks in lincoln, nebraska and wichita, kansas for a couple of mamas in need of local connections / guidance. anyone?

And 19 comments followed.  All parents in those areas looking to connect and offer help.

Then I tweeted this:

 @trydefyinggrav Friend looking 4pediatrician in Wichita KS area that works well w kiddos w #autism Family has no help

And got several RTs and people making calls and connections.
Next came this:

@xtremeparnthood  Calling all #autism peeps: Anyone live in the Lincoln, NE or Wichita, KS area? Looking to help some moms make some connections!

Which turned into this:

@will2455  @xtremeparnthood saw this RT…I’m in Wichita, KS…my 2.5 year old son is on the spectrum. I’d be more than happy to help…

@xtremeparnthood  @will2455 Thank you! I’ll let @Diaryofamom know you are in Wichita, KS and would like to help!

@diaryofamom @xtremeparnthood@will2455 TY guys!!! @trydefyinggrav made the connections today while I was at work ;) #lovethiscommunity

In the span of just a few hours, this mom who previously had no help or support now had a doctor to call, a support center to connect with, and the name of a person working on insurance reform in her state to help guide her.

This is what it’s all about.

This brave mother reached out to someone she had never met.  Instead of turning inward and losing hope, she spoke up and said “I can’t do this alone.”

And this incredible community came to her side.

People she had never met.  People I have never met.

When it matters – when a family is in crisis – we joined together. Under the banner of “We Get It”.

**********

That is the power of social media.

Without the connections I’ve made online, I’d still be lost.  Floundering.

I thought there was no one like me.  I thought there wasn’t any child like my child.

Then I started reading blogs and Facebook pages.  I started writing our story.

I joined Twitter.

I know what I know about parenting a special needs child because of the people I have met online.  These friends made me the advocate and parent that I am today.

They gave me hope when I had none.  A virtual hand to hold and shoulder to cry on when I had no one.  At any time, day or night. They gave me the strength to reach out IRL (in real life).

You want to know why I’m on Facebook and Twitter so much?  Because I never feel alone.

**********

I asked my now new friend if I could share her story here.  She agreed and wrote:

When you write your post, I would suggest that you also really encourage people to REACH OUT in those moments when they feel adrift and alone. No matter how silly it feels, no matter what you worry people may think of you…We are all parents of amazing kids who want to create a world in which they can thrive, and we would do anything to help one another reach that shared goal!

On behalf of my friend, I am asking you to get connected.  Whether you are just starting on this journey or have been on this road for a while, reach out.  Join Facebook groups.  Get on Twitter.  Make new friends.

Visit websites like:

My Autism Team: “The social network for parents of children with autism.  Find parents like you.”

Squag: “A curated social space for kids with autism (and other learning differences) to build ideas about themselves. Our goal is to facilitate the opportunity for organic relationships; driven by kids, supported by parents. What could be better?”

National Parent Technical Assistance Center: “A major goal of the ALLIANCE National PTAC is to build the capacity of Parent Centers in order to improve results for children with disabilities ages 0 -26 in rural, urban and suburban areas and from underrepresented and underserved populations.”

You are not alone.  We may not be there in your house but we are out here and we are just like you.

Together, we’ll have hope.

A HUGE thank you to Diary of a Mom and Adventures in Extreme Parenthood and the many who responded, retweeted, and emailed.  What you do every day to helps me feel less alone.

It’s the singer not the song,
That makes the music move along,
I want you to join together with the band,
This is the biggest band you’ll find,
It’s as deep as it is wide,
Come on and join together with the band,
Hey hey hey hey hey hey, well everybody come on.

Come on and join, join together with the band,
We need you to join together, everybody come on,
Hey hey hey, join together with the band.” – Join Together by The Who

Autism Positivity Flash Blog

An e-mail from the amazing writer at Outrunning The Storm:

A few weeks back, I got in one of my Google search term stats “I wish I didn’t have Asperger’s”.  It’s not the first time I’ve gotten something similar sadly. But, this time I haven’t been able to stop thinking about it. I don’t know for sure which post of mine they found but I do know it wasn’t what I want to say to this person. I spent some time talking with some blog friends of mine…and we came up with the idea of all posting a letter to this person with a title that would get Google to pull something positive.

Her e-mail made me sit back in my chair and think.  Those of us who write online know there are all sorts of ways that direct people to our blogs.  One of the top search terms that sends people my way (after several variations of “Try Defying Gravity”) is “Squirrels In My Pants”, thanks to a post I wrote using that song.  I feel terrible for the people looking for Phineas and Ferb who have somehow stumbled upon me and my stories.

But this search term “I wish I didn’t have Asperger’s” is different.  And it made me stop for a moment.

Who wrote this?

Was it a child with Asperger’s who was struggling and in pain?  Was it a parent responding to a statement made by their child?  Was it a teacher?  An adult?  Someone with Asperger’s looking to counsel someone who was not happy?

Who wrote it?

The thoughts swirled in my head, and at first I wasn’t sure I could write anything.  Without knowing the audience, what could I say?

Then I realized it didn’t matter who wrote it.  Someone did.  And whomever it was needed to know that a) it was okay to search for help and support online, and b) when they searched for that support, they needed to find love and acceptance and understanding.

**********

But what to say?

I can only speak as a parent of two children with autism spectrum disorder.

I can tell our google friends how incredible my kids are.  That with every turn they astound me with what they know and what they can do.

And I can tell them that I know that there are days when it is hard.  Very very hard.  I watch my kids struggle with conversations and team sports.  The things that Dr. Stephen Shore calls “The Hidden Curriculum” – the unwritten social interactions that can confuse so many.

But those struggles morph into incredible insights and perspective and success.  I have seen it.

However…

It’s better to hear from the people who know it best.

Listen to Dr. Stephen Shore talk about his life here:

Or click HERE to listen to Dr. Temple Grandin talk about her book Different Not Less, a collection of stories from adults on the spectrum about their lives, their achievements, and their successes.

Or perhaps…just watch this:

To the person who wrote “I Wish I Didn’t Have Asperger’s”…

I hope you’re finding the love, support and hope you need.  You have a whole community here to love and embrace you for who you are.

And hopefully we’ll help change your mind.

Hey, hey
Did you ever think
There might be another way
To just feel better,
Just feel better about today

Oh no
If you never want to have
To turn and go away
You might feel better,
Might feel better if you stay.” – Change Your Mind by Sister Hazel

**********

Check out all the incredible Autism Positivity posts linked up HERE

I had a long week.

But I had my first real shower in 5 days today.  And because all my good ideas come to me in the shower, I came up with The Mary Poppins Game.

I wrote it over at The Oxygen Mask Project blog.

What would you do with 24 hours just for you?

I shared what I would do.  And it was definitely not kite-flying.

Come read the post and leave your answer in the comments for everyone to read.

Perhaps I’m hiding my head in the sand.

I don’t want to debate why the new CDC autism numbers are where they are. I don’t want our community to fracture even more in the discussion of environmental vs genetics vs better diagnosis vs new classification.

I just want my sons’ teachers to understand how their brains work so they can learn better.

I just want my sons and their peers to grow up knowing that autism is not something to fear and that they can be friends.

I want the numbers to stand for more than debate.

I want them to promote change in our school systems and our insurance laws and our mental health services.

The 1 in 88 children. The 1 in 54 boys. My two.

My Facebook newsfeed is full of arguments about the “why”.

I want to see the “now what.”

“What about now?
What about today?
What if you’re making me all that I was meant to be?
What if our love never went away?
What if it’s lost behind words we could never find?
Baby, before it’s too late
What about now?” – What About Now? by Daughtry

I’m departing from my usual song title here.

I have an article today on the MassMoms.com website titled “When You Meet The Parent of an Autistic Child”.  It’s five ways to help other parents understand me and kids like mine.

I’m so grateful to the Worcester Telegram for asking me to write this, especially as we approach April and Autism Awareness Month.

It’s my first article like this ever, so I’d love it if you’d click below and check it out.

Hopefully, the more clicks on the link they get, the more stories they’ll publish about our community.

And they told two friends…and they told two friends…

When You Meet The Parent of an Autistic Child

CLICK <HERE>

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