Finding the Right Word

June 5, 2012 by in Advice, Support with 7 Comments

When I found out I’d be in Nashville TN for a non-special needs related conference last month, the first thing I did was text my friend Jennifer.  She lives near Atlanta, and although Nashville isn’t exactly a block away, I had to ask her to come see me.  Jennifer and I have been friends for years – but I couldn’t tell you when or how we met – well, not exactly.

You see sometime in the last couple years, Jennifer started reading my blog, we became friends on Facebook, and that turned into a friendship.  We’ve emailed, texted, talked on the phone, and found a connection instantly.

As you might guess, Jennifer is a special needs mom.  That connection – that core understanding of another person’s life – goes far beyond your typical friendship building.  And I found myself trying to explain this to numerous people when I would excitedly announce I was going to meet her.  Some people were even concerned that we wouldn’t be as close of friends as we had made up in our minds.  But I wasn’t concerned at all.

It was true, I didn’t really know Jennifer.  I didn’t know where she grew up, if she has siblings, her favorite color, what kind of car she drives, or honestly much of anything practical about her.  Why?  We hadn’t talked about that much.   

When we talk it is always straight to the heart of what really matters in life – our family, our feelings of grief and struggle, and checking in with how we as moms are doing.  Sure we do have a significant number of conversations about shoes, and planning what to wear to dinner on our first meeting was a hot topic leading up to the trip, but I knew that regardless of what we had or didn’t have in common, we would be instant friends.

And we were.

We sat in a crowded Nashville country bar, listened to music, laughed, sang, drank beer, and of course, talked about our kids.  And as we marveled at the families with children inside this bar and grill, we joked at how their kids obviously DIDN’T have Autism or sensory issues, and it was fun.  It was if we’d known each other forever.

The night ended and Jennifer went back to her home in Georgia, and I got on with the conference.

The next night was spent meeting new people, friends of friends, having dinner, and drinks and chatting away.  As the night was coming to an end, one gentleman in our group asked me what I did for a living, and I told him I was a writer/author.   Then I held my breath for the impending next question – which is always an inquiry as to what I write – which leads to a discussion of my children.

But to my surprise, as soon as I said that I write about special needs children, his entire demeanor changed.  He got serious, even emotional, and began to tell me the struggles he and his wife have been through while parenting their oldest daughter who has significant special needs.  Now she doesn’t have Autism or sensory issues, but does have an unfortunately long list of challenges that have baffled doctors for the last decade and resulted in acronyms and diagnoses I have never heard of.

But the journey he had been on was just like mine:  One of questions and struggle, of worry and fear, of doctors and appointments, hospital visits and unexplained problems.  And just like my meeting with Jennifer, he and I had an instant connection.  One that went beyond the surface conversations, deeper than any other thing we could possibly have in common, and allowed us to be honest about some of the most painful and difficult parts of our lives.  As two complete strangers.

The next day I found myself trying to explain why the connection is so automatic between special needs parents, but like when I tried to explain why Jennifer and I were friends, I couldn’t find the word.

When I got on the plane to fly home, I was tired and honestly missed my boys.  I got on board, went to store my bag in the overhead compartment and realized it was full.  I walked a few rows back and placed my bag of souvenirs for the boys in the overhead compartment.  When I got back to my row, I must’ve looked annoyed, because the gentleman sitting by the window looked at me and said, “They really should save the overhead compartment for those sitting in the row below it, huh?”  I laughed a little, agreed, and took my seat on the aisle.

We struck up your typical airplane conversation – Why were you in Nashville?  Where do you live?  And then of course, what do you do for work?

Again, I stated I was a writer/author, and the impending next question came as expected:  What do you write?

“The formal term would be Autobiographical Non-Fiction, which is just a fancy way of saying I write about my life.”  I say with a smile, and then add without waiting for him to ask, “I have three special needs children, so I write about their challenges – mostly parenting advice.”

The man smiled and the connection was instant.  He too has three children with special needs.

Over the next two and a half hours we discussed our lives, our kids, our families, our struggles and of course our children’s acronyms like old friends who were just reunited after too long apart.

We laughed at each other’s chaos, reveled in our victories, exchanged book suggestions and behavior tactics for home.  We talked about serious things, us two strangers in a plane, like how hard it is to maintain your marriage and find time for respite to take care of yourself.  How finding a school that fits is nearly impossible, and how we as parents often feel like failures; misunderstood and judged.  We shared pictures and watched home videos on our iPhones and enjoyed our new found friendship for the duration of the flight.

As the flight ended, we decided to exchange contact information; that’s when he surprised me.

You see this random stranger on the plane, a man who was open and honest, shared about his wife, his children and his life, gave me his name.  And his wife’s name.

Turns out they’re both celebrities.  And his wife is a pretty darn famous one at that, with a name and face that people know – instantly.

Now I wasn’t impressed because of the name, nor was I star-struck exactly, but I was taken aback.  Why?  Because he didn’t have to show his cards.  But he did.

And in that moment I finally had the word to explain why I would fly across the country to meet a woman I’d never met, stay up late at night talking about kids with a man I’d just met, and how a 3 hour plane ride turned a celebrity into my friend:  TRUST.

This special needs parenting thing is not just the basis for real connection, but it is a bond – a pact between two people – a secret handshake of sorts that tell us we can trust each other.  And not just any trust, but a rare kind of trust that says “I see you”, “I know your pain”, “I don’t judge you”, “I don’t judge your child(ren)”, and more importantly,

“You are not alone.”

Landing in Seattle I finally had the word to explain why our bond as special needs parents was unlike any other, and more importantly I felt incredibly lucky to be so trusted by all of you.

Thank you.

 

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About Hartley Steiner

Hartley Steiner lives in the Seattle area with her three sons. She is the award winning author of the SPD Children’s book This is Gabriel Making Sense of School with a 2nd Edition to be released April 2012, and Sensational Journeys (available now at www.fhautism.com) as well as the founder of the SPD Blogger Network (www.spdbloggernetwork.com). She is a contributing writer for the SPD Foundation's blog, S.I. Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs. You can find her chronicling the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys (www.hartleysboys.com) and on Twitter as @ParentingSPD. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.

    Comments

  • Beth C.


    Beautifully written! I have also noticed the instant bond that occurs when you find another parent of a special needs kid. There is an I stand bond, and your word is right. There is instant trust.
    Thank you for sharing.

    • Hartley Steiner


      Thank you Beth! :-)

  • Susan S.


    Beautiful, Hartley. Simply beautiful.

    I bonded at a local park with a mom, whose son had disabilities that were not invisible; but her son and mine both deal with SPD. As she saw my son playing in the ocean, she was surprised to know that he has SPD. I mentioned that his ability to handle the ice cold ocean water was because of his SPD. Then we bonded over the strategy of leaving fallen rice on the floor around the dinner table until the next morning, because it’s so much easier to sweep up when it’s dry. Something we had both figured out and had a good laugh about.

    Yes, the bond can be instant and is very special.

    • Hartley Steiner


      Thank you Susan! I think it is so important to realize that we bond as special needs parents no matter what our children’s challenges are! And SO TRUE about the rice! lol

  • Sybil


    I agree completely! I have only been a part of this network a short time and have already made so many personal connections, because these people know, they just get it!!

    • Hartley Steiner


      Hi Sybil – welcome to our community! I’m glad to hear you have made connections already, having people in your life that ‘get it’ is so important!

  • Jenny From the Block


    That was very moving to me, almost made me cry. I am new to parenting a child with SPD and special needs (well new to labeling/ralizing it anyhow), and already your words ring so very true. No one quite understands unless they have been down a simialr past, even your very best friends or closest family. My Mom comes pretty close, though…she is reading resources (including this blog!) almost as much as I am!

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