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

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

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.

We throw the word hero around a lot.

Athletes are “heroic” when they lead their team to victory in the Superbowl.  Actors give “heroic performances” when playing an edgy role on film.

And yes, to many, they are heroes.

But for me, my hero is someone who has stood up against those who fought to tear them down.  Who do things that people say can’t be done, not for their own glory but for the sole purpose of helping another.  A hero, for me, is someone who takes the world on, holds that world on their shoulders, and carries the burden so that the rest of us can move freely.

I met such a person on Saturday.  Her name is Eustacia Cutler.   Temple Grandin’s mother.


“Heading out to hear Eustacia Culter, Temple Grandin’s mother, speak about her life and about raising Temple. I cried three times just reading the prologue of her book “A Thorn in My Pocket”. I am so screwed today #bringingtissues – Try Defying Gravity’s Facebook status Saturday morning

I sat in the room with about a hundred other people.  I settled in to my seat next to my friend Jess.  I balanced my coffee, muffin and notepaper on my lap.

Mrs. Cutler came into the room.  She asked if we minded if she read some of her remarks because the words “cut close to the bone.”

My eyes welled up then and never stopped.

For two hours, this incredible eighty-five year old woman captivated the entire crowd.

I hung on her every word.


I can’t read my notes.  I was scribbling so fast trying to keep up with everything she said that I can’t read my own writing.

I have snippets of phrases like “Autism is a buzz word, but no one knows what the buzz is about”, meaning that the world out there knows the word autism, but they don’t understand how to interact with our children.

I wrote “She keeps saying “our children’.

And then while giving the history of autism she said “Autism is old. Our unease with it is old.”

I have another half sentence of “autism can be soul destroying at first for the parent, you think you are no good as a parent and therefore no good as a person.”

And then these:

“You will come to terms with it, not like you thought you should.”

“There are no answers, only choices. Persistent choices. If it’s not working, change it.”

“You too will be changed.”


I am truly having trouble processing all that she said.

But she did talk about one thing that, for me, “cuts close to the bone”.

Her book is called “A Thorn in My Pocket” for a reason.  She told a story about Robert Frost and how he came late to the lecture circuit.   Here’s the quote from her book:

Theodore Morrison, who knew Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.

“I always carry something in my pocket I can touch when I’m talking”, he told Morrison, “so I’ll remember who I am.  Lately it’s been a thorn.”

The thorn, Mrs. Cutler said, represented identity.  A way of remembering who she is as a person, not just as Temple Grandin’s mother.

She said that “autism helped me learn.  But it was not enough.” She was an actress, a singer, a journalist, and now a highly sought after lecturer.

She rejected every convention at the time and forged her own path, knowing that the only way to help her children become fulfilled was for her to feel full too.

She needed her own identity.  So while her daughter’s autism was woven through the things she did, it wasn’t only about her daughter.  She did research for a local PBS station on autism, but she was the journalist.  She sang for veterans from the Korean War who were permanently injured, trying to pull the smiles back out of them.

She was – is – an autism mom…plus.

I have spent a lot of time recently thinking about what I want to do now.  As in the “you’re-in-this-next-stage-of-your-life-so-what-will-you-do” sort of way.  I had been looking at it as something that had to be separate – something not autism-related.

Up until this moment.

What Mrs. Cutler showed me is that you don’t need to escape the autism to find a piece of yourself.  You can embrace what you’ve learned from your child’s autism and then make it a part of what you do for you.

Like my friend did with her Lego club.  Or like what my friend is doing with her tennis camp.

I can take what I know about autism and sensory processing disorder and create my own passion from it.  It started with my son.  But now it can be about so much more.


When Mrs. Cutler’s talk was over, many of us stood in line to get our books signed by her.

As I waited, I rehearsed in my head what I wanted to say.

I wanted to tell her she was my hero, but not in an overly fawning sort of way. I wanted to tell her about my boys and how amazing they are and how they take care of each other.  And how they make me laugh and cry.

I wanted her to know about The Oxygen Mask Project – that we were trying to help parents find that “thorn” in their pocket.  A way to remind parents that they need to take care of themselves in order to be there for their children.

More than anything, I wanted to keep my composure.  Do not cry.

When it was my turn, I got down on my knee and started gushing.

“Mrs. Cutler, it’s such an honor to meet you.  I know you hear this a lot but you are my true hero.  I have three boys, two on the spectrum.  I can’t tell you how amazing it is to be here with you today.”

(so much for not fawning.  Or sounding like an idiot)

She looked at my name tag so she could spell my name right.  And I continued talking.

“My friend and I started this website to do just what you were talking about.  Helping parents remember that they are more than just their kids’ caretakers.  It’s just like you talk about so much in your book.”

Mrs. Cutler looked right at me.

“It is so important,” she said. “If we don’t have ourselves, we have nothing.”

And with that, the tears started to fall again.


There were people there that day who have written about that morning much more eloquently than I can. So when you can, please read HERE.  And HERE.

I have one more post in me about this life changing day.  I hope I can get the words out.

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive

So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” – Hero by Mariah Carey

I can’t make resolutions because I always fall flat.  They are always bigger than me, bigger than what I can take on.  Eat better.  Join a gym.  Get more sleep.  All lofty and important goals.

All completely unattainable at this point in my life.  If these were my goals, I would fail.

Not quite the outcome I need.

So instead of making a CHANGE, I’m making some changes.

Little “c”.  And plural.

I’m over at The Oxygen Mask Project, talking about matching my socks and taking a shower every day.

Baby steps that make me feel like me.

But it’s also about realizing that I am as worthy as everyone else in my family.  If I match their socks and make sure they shower, don’t I deserve the same?

Come on over.

Click HERE for A Change (Will Do You Good)

If you know someone who needs a reminder to breathe, tell them about The Oxygen Mask Project.  It’s a site for ALL parents – moms and dads – and not just special needs parents.

Come join us.

(part three of the #yearoftheoxygenmask.  It’s a trilogy. I think.)

January 17th, 2012.  10pm

I’m sitting on my bed, waiting for the hair color to set it.

I’m two hours away from turning 40.

I send a message to some friends.  “Quick!  Best thing about being 40. Go.  Before I cry.”

And like the amazing friends that they are, they all jumped in with reasons why their forties have been the best.

And interestingly…their answers were all the same.

Forty was the year that they started really knowing who they were.  They looked in the mirror and saw their true self.  The pretenses were gone.  The need to please everyone was gone.

Forty was the year that they started really focusing on themselves.

One friend said: “You know who you are, what matters and who your friends are.”

And another friend put it, it was the beginning of “me”.

Not in a selfish way, but in a “I’m a person too” kind of way.

I wrote back: “Oh goodness…this is making me happy and teary at the same time. That’s good right? Could also be the hair dye fumes…”


January 18, 2012 10:40am

My Facebook status: “To my incredible amazing friends who got me over the “I’m 40” angst…I thank you. So grateful for all the birthday wishes today. Got my birthday hugs from the boys, and hot coffee and a great present from Tim. Forty is pretty good so far…


January 18, 2012 11pm

I am saying good-bye to my very good friends as they walk out the door.  They are five of the people who know me the best, and they came by for a spur of the moment cheesecake, coffee and chocolate covered strawberry party.  They arrived at 8:30, and we sat at my kitchen table and just talked. And laughed.  A little about autism, a lot about ourselves and our lives.

As I closed the door behind them, I realized this was the first time I had friends over in the evening in almost ten years.  My kids had never slept alone long enough or slept soundly enough to ever have anyone here.

I told Tim a while back that my thirties were about the kids, and my forties were going to be about me.  And him.  Us.

He reminded me that my forties will still be about the kids, Howie in particular.  I know that.  And being their mom is the greatest thing that ever happened to me.

But it won’t be just about them.  It can’t be.

Forty.  I can do this.  This is me.


This is why my friend and I were compelled to start The Oxygen Mask Project.

Once upon a time, a group of special needs moms started talking about their lives.

They talked about how devoted they are to their children and to making sure that their kids’ needs are met.

But somewhere along the way, they had forgotten to take care of themselves.

The Oxygen Mask Project has one mission: to give parents a place to feel supported when they take a moment to catch their breath.  Guilt free.


January 19, 2012 11:30pm

I’m still awake.  The house is finally quiet.  This has been a tough day for Howie in a string of tough days.  He’s stopped eating, only drinking his yogurt smoothies.  His aggressions have increased.  His behavior is difficult.  I can tell he feels out of control of his body. I think he’s fighting off something.  Or maybe it’s the change in weather.  I don’t know what it is and he can’t tell me.

I want to help him but I am exhausted.

And then I remember the logo from The Oxygen Mask Project:

Tomorrow morning, I’m doing something I’ve never done before.  My friend is coming over with her son to watch Lewis.  I am going out.  Not for an IEP meeting, not for a doctor’s appointment.

For a hot stone massage.

A totally guilty 40th birthday pleasure.

The in-her-thirties Alysia would have never said yes to my friend’s offer to watch Lewis.  I would have been wracked with guilt about it.  My pride would have told me to say no.

Now that I’m forty?

I am taking care of myself so I can take care of my kids.  I need a hour just for me so I can give the other 23 hours of the day to my boys and to Tim.

My friend knows that I will pay it forward.

Because that’s how we take care of each other.

This is what we do.


We hope you join us over at The Oxygen Mask Project if you haven’t already.  Visit our Facebook page and cheer on other moms and dads as they take a moment for themselves.  And check out our blog for all the great posts from parents sharing what they are doing to take a moment just for them.

Let’s take that first deep breath together.

Sleep delays my life (get up, get up)
Where does time go? (get up, get up, get up)
I don’t know
Sleep, sleep, sleepy head (get up, get up, get up)
Wake it up…up (get up, get up)
You’ve got all your life (way up ahead) (get up, get up, get up)” – Get Up by REM