What Makes You Beautiful

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.

 

Join Together

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.

Diary of a Mom

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

 

Change Your Mind

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

 

Let’s Go Fly A Kite

I had a long week.

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

I wrote it over at The Oxygen Mask Project blog.

What would you do with 24 hours just for you?

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

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

The Mary Poppins Game

 

What About Now?

Perhaps I’m hiding my head in the sand.

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

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

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

I want the numbers to stand for more than debate.

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

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

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

I want to see the “now what.”

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

 

When You Meet The Parent of an Autistic Child

I’m departing from my usual song title here.

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

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

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

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

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

When You Meet The Parent of an Autistic Child

CLICK <HERE>

 

Free To Be You And Me

notes from an Open Sensory Gym afternoon…

The boy sat in the giant red swing.  It was in the center of the room, swaying back and forth on the rope attached to the high ceiling. His mother (grandmother? caregiver?) pushed him back and forth.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

The boy jumped out of the swing and went up to each adult in the room.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

An hour passed.  He went from swing to trampoline to scooter board to crash pad.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

My friend and I answered him each time.  Of course we did.

His mother (grandmother? caregiver?) started to yell at him.  “STOP Adam STOP!” she yelled from across the room. She looked embarrassed.  Or weary.  Or both.

It made me sad.  If there was any place that this would be fine – and understood – it would be in this gym.  He wasn’t bothering anyone.  Why tell him to stop?

Was it out of habit?  Or was she truly worried about what we thought?

I wanted to tell her it was okay.  That he could just “be” here.  But I didn’t. I don’t know why.

**********

After checking out most of the equipment in the gym, Howie gravitated towards a large purple therapy swing that was full of balls.  He climbed right in, zipped himself up and asked me to swing him around.  “Faster! Faster!” he yelled to me.  In a place like this, I could give in to his need to spin, spin, spin.

A little boy came over and helped me push Howie around.  Howie squealed with delight.  The boy introduced himself as Zachary and they ran off to play together.  Really play.  They climbed up on the crash pad and pretended they were jumping out of airplanes.  They sat together in the giant tires and pretended they were in spaceships.  As they ran from thing to thing I struck up a conversation with his dad.

“How old is he?” I asked.

“Five and a half.” he replied

“Oh, Howie is too.  Well, he’ll be six in March.”

The dad paused for a moment, looking intently at Howie.  “He’s not autistic, is he?”

I was totally taken aback.  Isn’t that why we’re all here?  “Yes, yes he is.” I say.

“Oh, wow.  But…he talks so well! I assumed he was here with a sibling, like Zachary is here with his younger brothers.  His twin brothers are four.  They aren’t talking…yet.” His voice trailed off.

I told him Howie had a diagnosis of PDD-NOS.  He looked at me like I had three heads.  “It’s part of the autism spectrum.” I replied.

It struck me that even within our own community not everyone understands that it’s a spectrum.

We talked some more about how tough it is for Zachary to be at home with his brothers.  They come to the sensory gym so that all three boys have a place that’s safe for them to play together.

“It’s so hard for him,” the dad said. “I guess he’ll grow up faster and learn more about life than other kids.”

We watched as the boys ran off together again laughing.

I had assumed that Zachary was on the spectrum.  His dad had assumed the opposite about Howie. 

I wanted to connect with this family of three boys.  I wanted help spread awareness of a different kind.  But I didn’t. I don’t know why.

**********

Someday, I will buy a “squeeze machine”.  So I can see this happy face all. the. time.

**********

I am very grateful to our local Autism Alliance center that opens its hearts and pockets to provide these sensory gyms during the winter months.   This is how we’ve spent our last two Sundays.  The equipment is familiar to my son from school.  But most importantly, he is free to choose what he wants to do and what he needs to do in that moment.  And both weekends, he has made new friends.

Can I say that again?  My five-year-old kid with deficits in social skills and pragmatic language made new friends.  You don’t have to have your degree in special education to understand why.

He’s comfortable.  He’s happy.  He’s safe.  He’s around people who are letting him be.

He’s free to be himself.

If only we adults could learn from that.

“Every boy in this land grows to be his own man
In this land, every girl grows to be her own woman
Take my hand, come with me where the children are free
Come with me, take my hand, and we’ll run

To a land where the river runs free
To a land through the green country
To a land to a shining sea
To a land where the horses run free
To a land where the children are free
And you and me are free to be
And you and me are free to be
And you and me are free to be you and me” – Free To Be You And Me soundtrack

 

Walk Away

Just before Christmas, I was sitting on the bench at my son’s gymnastics class, chatting with my friends.

A mom and dad walked in.  They were holding the hand of their young daughter.  She was tiny and full of energy, her blond hair flying around as she bounced up and down in front of her parents.

I smiled at the little girl and listened while the instructor told the parents about the class.

“Each kid is matched up with a helper to move with them through the class.  We do stretches and then go through the circuit and we end the day in the big foam pit.  Let’s have her join the class and see how it goes.”

The little girl took the instructor’s hand and they walked together to find a spot in the circle.  The mom and dad huddled together, watching their daughter nervously.

I leaned over.  “Just checking out the class today?”, I asked.

They nodded yes.

Instantly I was transported back to January 2010.  That first day when I walked in nervously with my son.  This special needs gymnastics class was the first place we went after Howie’s diagnosis.  I was on edge, only three weeks post-diagnosis.  That class was the first thing I ever publicly wrote about Howie’s autism.  It was picked up the next week by Autism Speaks’ In Your Own Words Blog:

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Howie. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Howie starts to act up.

Two years later.  Here I was.  Asking these parents the same questions asked of me.  Watching them wonder if this was the right class for their daughter.  I wanted to welcome them in the way my now very good friend welcomed me that day.

“It’s a great class,” I said.  “We’ve been coming for two years.  It’s been great for my son.”

Sitting on that bench with my friends, I remembered how hard it was to be there that first day.

This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Howie buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

I remember feeling so alone before that moment.  Now I sit on the bench with the women who are now my lifeline.  Part of a community that understands me and my son.

Howie and I went bouncing hand and hand out of the gym when the class was over.  The dad was getting the details on paying for the class when we were leaving.

“Will we see you next week?” I asked.

“Yes, most definitely.” he replied.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

**********

This Saturday will be the first Saturday in two years that we will not be on the attendance list for the special needs gymnastics class.  Howie’s recent behavior changes have made it difficult for him to participate appropriately in class.  He’s becoming more aggressive and non-compliant.  We’ve had to leave the class early two weeks in a row, the last time because he hit his one-on-one helper.  He needs a break.  I need to figure out what is causing these changes before he or someone else gets hurt.

Howie probably won’t care, since we’ll make sure to see his friends from class in other settings.  I am sad.  Very sad.

It’s not just because it’s the one hour a week I get to talk with my friends while our kids are occupied, although that it a huge part of it.

This was our place.  The very first place we felt accepted.  Our very first community.

That little girl and her parents walked into gymnastics to find a place for them.

We’re walking out of gymnastics having found that place.

We may be leaving the gym, but we’re a part of this community forever.

“And it’s so hard to do
And so easy to say
But sometimes
Sometimes you just have to walk away
Walk away
And head for the door” – Walk Away by Ben Harper

 

Get Up

(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

 

Name

(part two in the Year of the Oxygen Mask series.  I think there may be more coming)

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