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

IMG_20130718_175604What 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

(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.

photo(15)

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.

photo(16)

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.

photo(14)

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

So I almost said no.

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

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

This is an event made for my kids.

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

So I sent this email:

Hi! It will just be two of my boys ages 7 and 4. I hope that is okay.
Just a heads up, my two boys are both on the autism spectrum.  They love math and science and all things PBS but they get nervous and a little overwhelmed in large groups and with characters in costume. As long as I can be nearby for them, they should be okay. But please let me know if you are uneasy about having them there.
Thank you!

Alysia

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

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

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

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

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

So off we went.

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

So we talked.

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

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

Their excitement was growing.  My anxiety was almost gone.

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

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

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

I knew we’d be okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I had to drag them out of there.

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

And we did.

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

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

I am so thankful I didn’t say no.

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

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

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

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

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

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

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

Yesterday in Howie’s backpack, this came home:

“I used my fingers”

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

1) He answered the question.

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

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

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

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

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

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

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

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

That’s worth celebrating in a blog post today.

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

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

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

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

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

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

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

Click HERE for “Home

I almost lost my stuffing in the Hot Wheels suite talking about Howie. – a post to some friends on Friday afternoon.

It came up casually in conversation with a new friend I met at the BlogHer conference this week.  Jennifer told me that she was looking forward to checking out the Hot Wheels suite since her boys liked cars.

“Um…Hot Wheels Suite?” I asked, and turned wide-eyed to my friend (and most awesome roommate ever Kristin).

Hot Wheels, or more specifically Mattel, was a big sponsor of the conference.  And they had a full suite on the 42nd floor of the hotel to show off their new products.  There was no way I was missing that.

Friday after lunch, Kristin and I made our way up to the suite.

The marketing people showed off their products, including their new app game.  Dan, the marketing guy for Mattel, demonstrated how a special Hot Wheels car drives on top of the iPad and “races”.  You control the car through the race or you can have a leisurely drive through the city.

I could feel my eyes tear up a little.

I started to tell the marketing guy a little bit about Howie and his four year long obsession with Hot Wheels.  How those cars were our connection to him.  And how it was also our autism “red flag”. And then with the iPad – the device that helps him focus and learn and play without frustration…well, the thought of combining the two was just a little much for me.

We thanked him for his demonstration and turned to leave the suite.  That’s when I saw this and had to take a picture:

Yes. Yes we do.

**********

This afternoon, we were getting ready to go to Target to buy school supplies.  Lewis was holding my phone for me while I packed up some snacks.

“What does this say?”, he asked, pointing to my phone.

I had the “Real Moms Play Cars” sign as the background picture on the phone.  I told him what it said.

An hour later, we found ourselves in the Hot Wheels aisle of Target because…well, we always do.  Lewis was trying to convince me that he needed yet another car because…well, he always does.

I said no.  We had enough.

“It’s for you, Mom.” he said.

“But I don’t need a car.” I replied.

“Yes, you do.  ‘Real moms play cars.’ You need your car.”

How does one say no to that?  To a kid who just one year ago couldn’t speak more than two words at a time?

You don’t.  We came home with a new car for me and one for everyone else.

**********

Before I left the conference, I sent Dan the Mattel marketing guy this e-mail:

Dear Dan,

I think you are the person I met at the Hot Wheels suite at BlogHer12. You showed my friend and me the new iPad game and gave us the demonstration on the remote control car. I told you my two youngest sons were autistic. And you remembered my son liked green.

I have to tell you how Hot Wheels changed our lives. It became the vehicle, if you will, for communicating with my sons. It’s how their dad connected with them, how their older brother plays with them. And I had to learn how to play with them too.

So your “real moms play cars” sign meant so much. It has become my motto. If there’s any way I could get one of those signs , I would appreciate it forever.

**********

“Real Moms Play Cars.”

I get down on the floor. 

That may not mean much to other moms.

Howie chooses a car for me. 

But playing cars is the one way in to communicating with my boys.

Lewis drives his car over to me.

It’s how we connect.

He says “Hi, Mom’s car.”

It’s how we interact.

Howie says “Wanna race?” and whispers to me that he’ll let Lewis win.

It’s how we healed as a family.

Ready…set…go!

Hot Wheels.  Beat that!

Baby you can drive my car
Yes I’m gonna be a star
Baby you can drive my car
And maybe I’ll love you” – Drive My Car by The Beatles

*this is one out of probably two or maybe three BlogHer posts*

**********

If you could, please check out my new project.  We’re opening a sensory gym for special needs children.  To open our doors, we need your help.  Please check out our website at SenseAbility Gym and donate safely through PayPal HERE

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

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

Chip off the old block.

The apple doesn’t fall far from the tree.

and my personal favorite, taught to me by a friend:

Cats don’t have dogs.

Because really, they don’t.

All these expressions mean the same thing – our kids are a lot like us.

I’ve written a lot about all the sensory challenges that my son Howie has.  But my other two have their sensory “things” too.

As do I.

I’m a clear sensory avoider.  I don’t like hugs or being too close to people I don’t know.  I’ll be the one to sit across the room on the chair rather than share a comfy couch.  I can’t stand it when someone sits right next to me in a movie theater, especially when there are still plenty of open seats.  And at a party or gathering, I’ll be the one holding up the wall in the corner, nursing the same drink all night so I don’t lose my spot.  That’s just me.  And really?  Never touch my neck.  Or feet.  Off limits.  I haven’t worn a turtleneck or scarf since I was in grade school, and if I can avoid socks and boots, I’m a happy person.

I have my food issues too.  If something doesn’t smell or look right, I can’t eat it.  While I am a big fan of food in general, I have some serious texture issues.  Like tomatoes.  And olives.  And a banana that is more than a day ripe.  I’m shuddering as I write.

And of course, my fear of failure paralyzes me.  I quit softball because I didn’t want to try out.  I worked my butt off in school because the thought of a bad grade terrified me.  I retreat and read to escape.

My oldest is a lot like that.  He likes his personal space, and he likes it quiet.  He can’t stand it if his shirt is too tight on his neck.  If the house gets too noisy or if someone in his class is clicking their pen, he’s upset. His food needs to look just right or he won’t eat it, and forget about mixing any food together.  He’ll play baseball but gets frustrated quickly with team competitive sports.  He prefers to play the piano and read.  He gets really good grades, but wants more from school than just rote work.  He wants it to mean something.

My youngest needs his socks to fit just right and his pajamas to be loose.  I used to think that his meltdowns over spilled food were a sensory thing, but we discovered quickly that it was because he was missing out on food.

And my husband…well, this is my post not his.  Let’s just say that our two sensory avoiding/perfection seeking trees created some apples that didn’t fall far from us.  Or something like that.

It’s clear that somehow our kids got this from us.

Somewhere in the mix, Howie came along as the lone sensory avoider and seeker.  He’s the only one with an actual sensory processing disorder diagnosis.  And with that also came the autism spectrum diagnosis.

So it was great interest and a knowing smile that I read the essay “Like Mother, Like Son” by Amanda in the book Wit and Wisdom from the Parents of Special Needs Kids (yes, that’s the book I’m in too!).  I’ve been a reader of Amanda’s great blog Confessions From HouseholdSix for a while, and was so glad when she agreed to write a post for the SPD Blogger Network on her son’s sensory issues.  They received their second autism diagnosis in the their family about a month before we got our second one.

In her essay, she writes:

When I dreamed of what my children would be like, I dreamed they would be like me.  They would get good grades in school.  They would like to play sports.  They would be involved in other academic activities after school as they got older.  I never dreamed of the word autism.

Autism has been a funny little word in our house.  My oldest son was diagnosed later at age eight and a half.  By this point I had realized that this child is me, only more intense.  But he is me.  Does that put me on the spectrum too?  This is a question that my son’s diagnosis has made me ponder often.

She goes on to talk about all the sensory issues that she shares with her son, and they were so familiar.  Clothing troubles?  Check.  Food issues?  Check.  Desire for perfection? Check.

Her last paragraph sums it up nicely:

Are these all traits of autism?  It’s hard to say.  Does this mean I’m on the spectrum too?  I don’t know.  I do know that autism or not, I did get a child like mine.

And this is, of course, what swirls around in my head all the time.  Is my oldest on the spectrum too, like his brothers?  Are we?

It’s a question that I’m not sure has an answer, nor perhaps does there need to be one.  We all know that the spectrum is broad and wide, and that everyone – EVERYONE – has some sensory issues.  It’s about how you cope with them.  For Howie, he can’t cope with them right now.  So we’re teaching him.  And in that process, we’re teaching his brothers – and the rest of us – how to cope as well.

I do know that seeing pieces of me in my kids gives me a better understanding of what they are going through, and gives me more patience and tolerance in helping them through the tough moments.

That’s what Amanda’s essay did for me.  Seeing myself in her words helped me be a better parent.  Just another way that I feel a little less alone in this world.

As we go down life’s lonesome highway,
Seems the hardest thing to do,
Is to find a friend or two.
That helping hand, someone who understands.
And when you feel you’ve lost your way,
You’ve got someone there to say, “I’ll show you.”

Ooo-oooo.
Say you, say me, say it for always,
Aw, that’s the way it should be.
Say you, say me, say it together, naturally” – Say You, Say Me by Lionel Richie

Wit and Wisdom of Special Needs Bloggers

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