(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
January 11, 2012 at 1:51 pm
Wow…this perfectly describes the quandry I’m in right now….here’s to figuring it out in 2012!
January 11, 2012 at 2:00 pm
EXACTLY! I feel the same way! And I feel guilty about it. My life is consumed with all things autism and SPD–therapy and dealing with the schools, doing the LEGO Club, everything. And I feel like i have been blessed so much these last few years–I’ve met amazing people, found my voice as a blogger, and found a cause to support in LEGO Club. Still, there is so much more to me than that, and I really want my kids to see that, as much as small kids understand that sort of thing.
Not long ago, Charlotte told me she wanted to be a mom like me, and while I was so touched, I also cringed a bit. I want her to know that she can be more than that (though I think it’s such an important job). She can be a mom AND an artist or whatever she wants. I want to be a goo example to her about this, and to my boys too. So, I make sure to mention I used to teach school and that now I’m writing for my local newspaper and doing book reviews for a website. Small freelance jobs, but at least it’s something separate from mommyhood.
January 11, 2012 at 2:07 pm
I think I can fill in some of those “also”‘s…
also a writer,
also a great friend,
also a wonderful daughter and sister,
also a great thinker,
also a socially minded person who cares deeply about the needs of many groups of people,
also a person who will make a lasting difference in peoples’ lives as soon as she gets the time!!
January 11, 2012 at 2:49 pm
I’m having one of those days…and while on the train ready to just burst into tears, I kept thinking of your post. I sure could use an oxygen mask.
And this post really hit home for me.
January 11, 2012 at 2:57 pm
So, so much more…
January 11, 2012 at 3:20 pm
parallel lives my friend, just had a similar discussion on the phone with a dear autism mama friend. xo
January 11, 2012 at 3:52 pm
Love this. Thank you.
January 11, 2012 at 3:54 pm
You are both ‘also’ my friends. And I am damn glad about that!
Let’s see what other names we can find this year.
I would love to be like Jersey and add ‘Runner’ to my list of names ;0)
Thanks, A,
It’s really perfect.
Like you.
January 11, 2012 at 5:19 pm
Once again you have touched on something that so many autism parents experience! I went through this, too. Last year was my year for the oxygen mask. I went back to work I did before I had my children. It has been exactly what I needed. My identity, my individuality, my creativity, my passions, my interests, my strengths, my abilities, my path. I reclaimed some of that. I chose to put those aside when I had my first child, I expected to get back to it. But when I had my second child, and as autism joined us, I put EVERYTHING for me on the back burner. The time was right for me to have something for myself. It takes time – to figure out what you want, to find something that fits you, your life and your family’s life. I had to do a lot of work – talking with my psychologist has been a crucial part of my progress.
I am so pleased you feel like this is the place you are in – I know how guilty and unsure this process made me feel – guilty for wanting something just for me and unsure that I could go back to what I used to do more than a decade before. And I wish you all the best in this ‘rediscovery of self’ as I called it.
And as always, thank you for your voice, for sharing and for inspiring! You are such an amazing person, I am so lucky you started this blog.
January 11, 2012 at 6:29 pm
I always truly enjoy your posts as they most often hit so close to home…but, oh, this one…this reached out and shook up a little part of my soul. That little bit of MY soul. That part that seems lost and floundering…it wants a name too. I am (and have been) searching for a voice. Who AM I?
January 11, 2012 at 6:50 pm
yes, sometimes i have to step away from all the books, advocating, fighting, researching, thinking and even blogging about autism. on the rare occassion the husband and i get a date night, we agree ahead of time not to talk about autism. just for a bit… to re-focus and re-charge.
a woman read a book i wrote long before i was a parent and then said to me. “i need to apologize to you. i’ve only always known you in the context of autism mom. i put you in a box. there’s much more to you than that.”
one day i’d love to share french fries with you again, my friend. and get to know some of the other parts that make you you. xo
January 11, 2012 at 7:20 pm
I think we slip into that role so gradually….and before we know it we’re fighting and clamoring to make things right for our kids. And then we forget about ourselves, who we really are, you know, besides an Autism Mom. I don’t mind the title but you’re right, I’d like it to not define me.
January 11, 2012 at 11:05 pm
Discovering that your child has autism, whether by diagnosis or intuition (followed by diagnosis) is like a call to arms – step up mum! Time to pull it together and find a way through this mystery. That kind of keeps you going in those first years – knowing how important early intervention is and how vital it is for your consistency and follow through. But, yes…I’m tired, chronic sleep deprivation, behaviour challenges, language, language, language, stim, stim, stim and slow progress are so wearing to the soul.
Years ago in the early years of running my own business I used to say ‘my financial position does NOT dictate my state on mind’. It was my mantra that got me through the poverty. Now I want to say ‘having a child with autism does not define me’ or something like that. I want the world for him, but I don’t want to restrict my vision and my hopes for my (single parent) family or for myself in order to achieve that. We’ll get there somehow but first, I need a week of sleep…please!
January 12, 2012 at 5:49 am
I am an ADD (ADHD) advocate currently writing an article trying to get our ADD Moms and Dads to step INTO what you all feel trapped in. It’s about BALANCE, of course, and “the grass is always greener” – yada, yada – but our community NEEDS some of what your community’s got.
So many of our kids – and teens – AND adults are floundering — not only without support, but with that particularly nasty brand of “just pull yourself together and stop making excuses for yourself” dismissal that cuts the heart out of any shot at self-esteem.
So let me say, simply, I admire you ALL for fighting like tigers for your kids – *and* for searching for ways to actuate yourSelves without giving up on your kids. I know you know it’s essential to “put on your own oxygen mask first” – and I’m sending white light and every good thought that each of you will figure out HOW to do it – that you will find exactly what you need to be whole and to thrive personally as well as “parentally.”
Madelyn Griffith-Haynie, SCAC, MCC – (blogging at ADDandSoMuchMore and on ADDerWorld – dot com!) “It takes a village to transform a world!”
January 12, 2012 at 7:35 am
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January 13, 2012 at 1:16 pm
you are phenomenal, and have captured in words what my brain can’t. Thank you. PLEASE let us know what ‘also’ ends up. 2012 “Year of the Oxygen Mask”…yes ❤
January 13, 2012 at 11:10 pm
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January 25, 2012 at 9:21 am
Awesome post! I found you from Fi’s Wonderfully Wired blog. This is just loaded with a lot to think about. I too, have 2 boys with autism/adhd, and 2 girls that are NT (so far).
January 25, 2012 at 5:12 pm
You are also a friend to those you see and those you only know via the interwebs. And a talented writer. Please don’t sell yourself short… your gifts may be hard to see while wearing your autism mama skin, but those of us who benefit from your wisdom and humor see so much more!