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.

Gerry came out of the shower and was scrounging around for his pajamas.

“Mom.  I have an idea for that book we were talking about.”

He was alluding to a discussion that he and I had had a few months ago.  We were talking about his relationship with Howie, and I said maybe we could write a book together about it.

“Shhhh.” I said. “Tell me quietly.  I don’t want your brother to hear.”

Gerry stopped what he was doing and looked right at me.

“When are you going to tell him he’s…different?”

I stood there.  Waiting for what was coming next.

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

“Yes.  He should.  I will ask my friends how and when they told their kids.  And what they said.  You’re a pretty smart cookie.  Now let’s talk about that book.”

So, I’m asking you.  My friends.  When did you tell your kids that they were…different?

“I’m accustomed to a smooth ride
Or maybe I’m a dog who’s lost it’s bite
I don’t expect to be treated like a fool no more
I don’t expect to sleep through the night
Some people say a lie’s a lie’s a lie
But I say why
Why deny the obvious child?
Why deny the obvious child? ” – The Obvious Child by Paul Simon

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

What if someone came to you and said the following things:

Why do we view “disability as a deficit model”?  Meaning, why do we look at what people with learning differences are lacking or without?  Why do we try to remediate those “deficits”?

Why are special education graduate programs geared towards teaching “behavior modification” in the classroom?   Why aren’t schools interested in understanding why kids think and behave the way they do but instead focused on fixing the “deficits” to fit in?

Why do we look at celebrities who have disabilities as achieving IN SPITE of their disability, rather than BECAUSE of it?

Why do some “first responders” like teachers and doctors view disorders like autism as the end of the world for our kids?

Why do we believe that people can not achieve because they have a label?

One twenty-eight minute video.  And all these questions were asked.

I watched Garret Westlake, CEO of Stem Force Technology, talk, and my heart grew.  I had hope for the future.  Not just for my kids on the spectrum, but for any kid who has been labeled with a “disorder” or “disability”.  In his talk “Disability as a Catalyst”, he lays out all these questions.

Garret flipped the world on its head for me.

We’re told as parents that our kids’ disabilities will hold them back.

But what if it’s the very thing that moves them forward?

What if colleges looked at a student’s individual strengths and what they could contribute to their campus community, rather than rejecting them based on a composite test score?  What if employers did the same?

What if  special education teachers were trained to understand the science behind our kids’ brains?  What if they knew how to find that spark that makes them special and bring it out?

What if our kids were made to feel proud of their learning differences?  What if someone told them that their Asperger’s was a strength, not a weakness?

What if the very thing that makes our kids “different” is what makes them more marketable?  More in demand? More incredible?

What if we as parents knew that from the start?

Watch the video.  As my friend Jess said over at a diary of a mom, people like Garret are “…creating a path to full participation, brazenly removing the barriers to success for people with autism – and doing it by standing the entire paradigm on its head.  This is how it begins.”

This is how it begins.  I am a hopeful parent again.

For these guys:

For more on what companies like Stem Force Technology are doing, click HERE. For information on their Asperger’s Leadership Conference, click HERE.

And watch the whole video here:

“Do you know who I am
Do I know who you are
See we one another clearly
Do we know who we are

We are of the spirit
Truly of the spirit
Only can the spirit
Turn the world around” – Turn the World Around by Harry Belafonte

I was sitting in a small restaurant, having lunch with a friend, when everything changed.

It was a rare treat.  A kid free lunch.  My friend lives two hours away and we met in the middle.

She’s an autism mama.  Just like me.

So of course, we talked about our kids.  And how the autism diagnosis has changed our lives.

The things we do now that we never thought we’d do.  And the things we don’t do that we always thought we would.

The big pile of resentment that grows with each year, and the need to just let some things go.

My friend is a tireless advocate for families like mine, and she had recently run for elected office.  I watched her campaign from the sidelines and became emotionally invested in her run, even though I couldn’t actually vote for her.

“I think the reason many of us got so caught up in your campaign was because you were doing something bigger…something more than just about autism.”  The words sounded weird as they came out of my mouth.  Offensive, even.

I tried to clarify.  “I mean, you were talking about the economy, and schools, and taxes and…regular stuff like that.  It was like you had a life outside of all this.”

Those words sounded even harsher.

My friend, being the incredible person that she is, saw through my fumbling words and understood my intent.  She agreed that it was empowering to feel like there was more to her than being her son’s mom.

And then I said it.

“We spend so much time helping the world see past our kids ‘label’.  We want people to see them for who they are and not get stuck on the diagnosis. Right?”

Right.

“Why, then, are we so connected to the label of ‘autism mom’?  If we don’t want our kids to be defined by the label, then why are we so defined by it?”

Silence.  We both just sat there and let those words hang.  And simultaneously, we slumped back in our chairs.

“You’re right,” she said.  “The autism diagnosis has taken over my life completely.  There has to be more than that.”

Our kids need to see us as more than that.

**********

It’s a conversation that I’m still playing back in my head.  I’m a different person since my kids’ spectrum diagnoses.  I had to change.  I had to become a stronger person and better advocate for my kids to get the services they need.  I had to read things I never thought I’d read.  I had to know words that I never knew existed.

My kids needed the autism label to get them the help they needed in school and at home.  It helps describe why they behave the way that they do.  It helps others understand why my boys see the world differently and interact with others in a different way.

The “autism mama” label has introduced me to the most incredible people in the world – people I consider my best friends now.  We share a common bond and life experience.  They understand why I laugh and why I cry.  They are the people I want to be around because they get me.

But there is more to us all.

When Howie is older, I want him to be able to say “Yes, I have autism.  And I’m also a husband, father and I love to fix cars.”

My sons have autism.  It makes them who they are.   It explains them, but doesn’t have to define them.

I am an autism mama.  It explains me.

But it doesn’t have to define me.  I want to say “Yes, my kids have autism.  And I’m also…”

The next step in The Year of the Oxygen Mask is figuring out what that “also” is.

I’m not letting go of the autism mama piece. That’s the most important part of me right now, and probably forever.

But I feel like I’m missing some other parts of my full identity.

“Scars are souvenirs you’ll never lose
The past is never far
Did you lose yourself somewhere out there?
Did you get to be a star?
Don’t it make you sad to know that life
Is more than who we are?” – Name by The Goo Goo Dolls

It was about this time last year.

I couldn’t breathe.

I would feel it wash over me, covering me, suffocating me.

I couldn’t move.  I couldn’t get dressed.  I went through the motions of feeding and clothing the kids. I lost all interest in everything.

I cried. A lot.  And was angry.

I didn’t know what it was.  All I knew was that this wasn’t me.

It would come.  And then it would go.

I would try to describe it to Tim but I couldn’t even find the words.  We agreed that I would talk with my doctor at my annual checkup.

**********

I sat on the table in the doctor’s office, trying to describe what was going on.

“My hair is falling out.  I’m not sleeping.  I’m just feeling…out of sorts.  Maybe it’s my thyroid?  Or hormones out of whack? My youngest is two, maybe my body never bounced back?”

I couldn’t say what I needed to.  I’m completely overwhelmed.  I can’t breathe.  I cry all. the. time.

“We can run all those tests,” she said. “We can rule out a thyroid or hormone level issue.”

Then she looked right at me.

“You’re a mom in your late thirties.  You have three young boys, two of them with extra needs.  You aren’t sleeping, you aren’t exercising.  I bet everyone else’s needs come first.”

I nodded and looked at my feet.

“I bet there are moments when it feels like a wave coming on.  You’re okay one moment, and not the next?”

Again, more nodding and feet looking.

“I can prescribe something for you to take when you start to feel like that.  But you need to start taking care of you.  Exercise.  Even if it’s just running up and down the stairs when the kids are in the shower.  You can’t do it all.  No one expects you to.”

I walked out of there promising to think about the meds.  I promised to start taking care of me.

That was a year ago.

**********

I’ve been able to manage the wave.  So far.

I can feel it coming.  My body tenses, my chest constricts.  I yell more.  I eat more.

Sometimes there are triggers.  A call from school.  A playdate that goes bad.  Or good.  A doctor’s appointment.  A developmental evaluation form.

I know now that it will be short-lived and it will pass.  So far.

**********

But I still haven’t been able to do the things for me.

I have three kids who are as different as day, night, and afternoon.  They all have needs.  They all have doctor’s appointments, therapy appointments.  All need 100% of my time all the time.

I give that to them and more.  And by the end of the day, there’s nothing left.

Tim described it like a raisin.  I start the day like a grape.  And slowly all the juice inside dries up, leaving me like a raisin by bedtime.

I have to get the juices back.

I’m not even talking spa vacation.

I’m talking eating lunch sitting down.  Remembering to shower.  Changing into pajamas before falling asleep.

Reading a book.  Watching a movie with my husband.

A friend of mine proclaimed this the “Year of the Oxygen Mask” for her, meaning that it was time to remember that we need to be able to breathe if we’re going to help our kids stay afloat.

It’s the “Year of the Oxygen Mask” for me too.

Step one: making another appointment with my doctor.

**********

If you are feeling overwhelmed, panicked, paralyzed…remember that you are not alone.  Read this brave post from my friend HERE.  Or this from another incredible friend HERE.  Or this raw, honest post from The Bloggess here.

It’s okay to talk about it.  In fact, it’s necessary.

Reach out. Get help.

Put your oxygen mask on now.

“When I was younger, so much younger than today,
I never needed anybody’s help in anyway.
But now these days are gone, I’m not so self assured,
Now I find I’ve changed my mind, I’ve opened up the doors.

Help me if you can, I’m feeling down
And I do appreciate you being ’round.
Help me get my feet back on the ground,
Won’t you please, please help me?

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like, I’ve never done before.” – Help by The Beatles

Howie: “I like you more than I like myself!”
Lewis: “I so PROUD of you!”

A moment in time during vacation week.

“Oh, but if you feel like loving me
If you got the notion
I second that emotion
So, if you feel like giving me
a lifetime of devotion
I second that emotion” – I Second That Emotion by Smokey Robinson

Dear Mr. President,

Hi! My name is Gerry* and I am nine years old. I have a recommendation of lighting the White House blue at Autism Awareness month next year. The White House is not one of the many famous landmarks that has been lit blue in April. I say this because my brother is autistic,  and it made me feel great to see all those buildings lit blue, because blue is the autism color. I made a model of the White House from a Lego set I got from Hanukkah. I put blue pieces on it to show what it might look like:

The White House...in blue

This was just a recommendation.

Sincerely yours,

Gerry

**********

It’s time to start thinking about this again.  Last year, my friend Jess at Diary of a Mom got a grassroots campaign going to encourage the President to “Light It Up Blue” on Autism Awareness Day in April.  He said no.

We’re saying “wrong answer”.

Mr. President, make this year the year you turn the White House blue.  For my two sons with autism.  For their brother who loves them so much.  For the thousands of families who ride the autism rollercoaster every single day.

One day.  One bulb.

How can you say no to this face?

I can light it blue, can you?

I worked all afternoon on it.

*name changed for the blog, but the letter is in the mail to the President for tomorrow.

Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.

I blurted out, “I wish we could have our own Santa somewhere so your kids could get their pictures with him without worry.”

We were quiet for a moment.  Then a friend said “My sister-in-law has a Santa suit.  We could do it.”

“Someone remember this for next year.” I said.

And somehow…we did.

**********

Five of us started talking, and the plan began to come together in mid-November.  Instead of our monthly support group meeting, we’d have a holiday party for our families instead.  We’d hold it at our local community house for free, have pizza and drinks, and bring in some crafts and toys for the kids to play with.

Low key.  Joyous and simple, my friend said.

And of course, Santa.

I recruited my friend’s husband to play the role of Jolly Saint Nick.  He’s amazing with kids and has known Howie since he was a toddler.  He’s not a special needs dad, but he’s a very special dad.  If anyone could play Santa for our kids, it would be him.

The RSVPs from our support group friends flooded in.  We were expecting 60 people.  Thirty-five kids.

I got a call that morning from one of the moms in our group.  She was coming with her crew – her husband, her 11 year old daughter, and her 7 year old son, who has autism. She thanked us a hundred times for this.  Her son had never seen Santa – it’s always been too hard to get him out to see him at the mall – and her daughter still believes and wants to see him too.

She said we’ve made “Christmas exciting for her family again.”

I almost burst into tears on the phone.

**********

The afternoon of the party came and I was a nervous wreck.  I only had to bring the Hot Wheels cars, the crafts, and make sure Santa was there on time.  For some reason, I felt like so much was riding on this.  We were promising our friends so much – the ability to play and eat and talk to Santa on their own terms.  Could we pull it off?

We could.

**********

Let me tell you something.  Our kids…they are something special.

They walked into that room and somehow they knew it was a safe space.

A place to just “be”.

They sat on the floor and played with cars.  They built with blocks and made snowman crafts.  They played with what they wanted to play with. Ate when and what they wanted to eat.

My friends' kids playing with Hot Wheels Trio Blocks (photo used with their permission)

There were no meltdowns.  No “interfering behaviors”.  No “non-compliance”.

They were themselves.

I made the big announcement that Santa was in the building at 6pm.  You could feel the kids’ excitement as he walked into the room.

We had a special spot for Santa to sit in the back of the room for photos.  Tim set up his camera equipment to get that special shot.  Santa gave the kids “high-fives” and we had a seat next to him for the kids to sit in.  Not on him.

Because…we know.

Santa took his place and the kids made their way over to him in their own way.  Some rushed over and got in line.  Some moseyed their way over, checking out the scene.  Some hung back, going over if they felt like it.

Santa on their own terms.

No one was more excited to see Santa than my own Howie.  My little Jewish boy jumped up and down when Santa walked in.  He pulled me down and whispered in my ear: “Is Santa real or fake?”

“What do you think?” I said, holding my breath.  I didn’t know if he recognized my friend in the suit.

“I think he’s real.” he whispered back.  Good enough for me.

"I would like a green hot wheels car!"

"Is there one in Santa's bag?"

Hurray! It's a Christmas miracle!

We had kids get their pictures taken with Santa who had never been able to be in the same room with him before.

As my friend said: “Community house? Free.  Pizzas? $10 each.  Our kids’ smiles? Priceless.”

(my friend's son, photo used with her permission)

Ringing Santa's bell so wishes come true (my friend's son, photo used with her permission)

First great photo with Santa (my friend's son, photo used with her permission)

First time with Santa (my friend's son, photo used with her permission)

and my personal favorite photo:

My son, giving Santa a high five. Minutes after he told Santa "I celebrate Hanukkah."

I wish I had the words to describe the joy in that room that night.  Let’s just say that the kids were all full of awesome.

That night, a few of us went out for drinks.  One of my friends said she’s never seen her daughter that happy.

“She could just…be.”

Exactly.

There was no stress for our kids to be something else.  They were surrounded by acceptance and understanding and pure unconditional love.

The way the holidays are supposed to be.

**********

I have Santa signed on for next year already.  This Jewish girl saw the magic of Christmas and I will never ever forget it.

“The moon is right
The spirit’s up
We’re here tonight
And that’s enough

Simply having a wonderful Christmas time
Simply having a wonderful Christmas time ” – Wonderful Christmas Time by Paul McCartney

That includes a little sensory work.

Happy Hanukkah!

I Have A Little Dreidel