Meet Rachel

pink [Jump Around by House of Pain]

Where I Come From

I grew up the last of five children in a typical Irish Catholic family that turned out to be not-so-typical.  Born and raised in Connecticut, my father was an actuary with an enormous sense of humor and the best taste in music and movies, while my mother was a kick-ass stay-at-home-super-mom who could sing a lullaby then throw up a built-in cabinet in the dining room.

Some Places I Wandered Around For a While

I spent my early 20′s simultaneously traveling along several different paths.  While pursuing music business and singing in New York, I worked for Time Warner/Sony Sound Exchange on Long Island.

In 1996, I returned to Connecticut and tried on a few new hats.  While working at The Hartford Courant newspaper in advertising and finance, I took on a side gig as a security supervisor for several venues in the Hartford/New Haven area.  I survived the Dave Matthews riots of 1999 and a year later shook hands with the man himself after escorting him to his bus at another venue.  There were some amazing experiences that I will never forget even though I may have been in more than my share of fistfights with drunken patrons. In 2000, I chose to leave the entertainment and business world behind and move on to service in public safety.

I Was Kidnapped by the Military and Motherhood

The Sergeant Major (SGM) and I met in 2001.  I soon went back to college focused in Health Sciences and joined Phi Theta Kappa Honor Society.  I continued to attend school part-time while being a full-time mother to my teenage stepdaughter – later having The Boy in 2003 and RM in 2006.

I am an aunt to seven beautiful children and was fortunate to spend quite a lot of time with them as babies.  They now range in ages from eleven to twenty-one.  I am always amazed at how fast the time flies.  I have one nephew on the spectrum.  He is doing fabulously after intensive early intervention.  It was because of my nephew that SGM and I chose to teach our son sign language when he was an infant.  It would prove quite handy when RM was born with 4q Deletion.

Autism and My Laptop Coup d’é·tat of TRICARE

During my husband’s most recent deployment to Afghanistan in 2010, RM was diagnosed with autism.  It didn’t take long to discover that TRICARE military healthcare did not provide dependents with the treatments they needed.  This made me more than a little upset.  Especially when I learned that it meant more than 23,000 military families were being denied treatments. In spring 2011, I had the honor of writing a letter to President Obama as part of the Light The White House Blue Campaign to highlight the unique struggles autism presents to military families.  I also shared our family’s story with Congressman John Larson (D-CT) as well as the stories of many other military families who serve our country while also caring for their dependents with autism.  Congressman Larson was moved by our stories and the Caring for Military Kids with Autism Act (CMKAA) was born in 2011.  (I still think it’s pretty cool that I got to name a freaking bill!)  The bill wasn’t getting much attention or traction and was stuck in Committee for several months.  It was annoying and well, I was pissed.  So I decided that it was time to mount up, because the cavalry wasn’t coming.  I started a social media campaign from my laptop.  Facebook, Twitter, and Change.org.  I murdered a perfectly good Christmas classic at one point, too.  But then I created a powerful video using footage from my husband’s deployment and our daughter’s school that really made the point clear:

Soon we had more than 70 cosponsors in the House of Representatives.  The Senate voted 66-29 in favor.  The bill eventually passed as an amendment to the FY2013 National Defense Authorization Act.  Along the way, I spoke at a Congressional briefing at The United States Capitol, appeared on MSNBC as a guest of Andrea Mitchell, and even made it to The White House to meet with (now former) Deputy Assistant to President Obama, Mike Strautmanis, and (now former) Executive Director of Joining Forces, Brad Cooper.  (You really have to wonder if they got booted for letting me in the door.)

2012 was a good year for advocacy.  Our little family was invited to meet with some cool cats at the USS Intrepid and talk some autism there, too.  The next day on World Autism Awareness Day (WAAD) we were asked to light the Empire State Building blue in 2012 along with Tommy Hilfiger and his lovely wife.  We also joined the Autism Speaks (AS) gang down at the New York Stock Exchange for the Ringing of the Bell on WAAD.  After lunch with my friend Karen Driscoll from AS, we bumped into the filming of Person of Interest and took this snapshot with a couple of new friends we made there:

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TRICARE remains a villainous changeling that turned our legislation into the largest denial of treatment to date.  A second piece of legislation has passed the House as part of the FY2014 NDAA and is awaiting Senate passage to attempt to close the loopholes that TRICARE has created for themselves – which apparently are many and endless.  But I am confident that the brave and mighty will prevail.  Or the bitchy military wives with laptops.  Either way.  TRICARE had better pack some clean underwear for where they are headed.

(Props to the military Dads that are kicking some TRICARE ass, too.)

Twice the Autism Means Twice the AWESOMENESS

It’s a packaged deal here.  Last winter I was diagnosed with Aspergers.  What was most amazing is that it was the most natural explosion of holy-shit-ness EVER.  So imagine being doused with gasoline and set on fire, yet it oddly feels like you have been waiting all of your life for this one moment of combustion because you know, YOU JUST KNOW, deep down inside that when the flames die out you will be free. New. Ready. Unburdened.

It may have taken a few years to come to terms with my daughter’s autism and what that means for her and her life.  But oh, OH, the joy to know now that she cannot possibly suffer the same fate as I have because she will have the confidence of knowing that her autism is exactly who she is and exactly why she is so amazing. Oh how I wish I had known 30 years ago that all of the things that made no sense to me could have if someone had given me the lamplight and said, “Well, it looks a little sketchier to me down that path there, but I’m sure you will find your way if that is where you are meant to go.”

I lost some friends since learning that I am an Aspie, but I have made new connections to old friends and deeper connections to my family.  My marriage fell apart but I know now that had nothing to do with autism.  Beautifully, all of the new friendships I have found on the spectrum keep me hopeful.  I have been given the greatest gift of looking back throughout my life with a new lens, a much more forgiving one.  Being an Aspie suits me just fine.

The Homestead

Being married for nearly 12 years to an active duty infantry soldier meant that I was the Household Six much of those years. This is why I feel blessed that I can fix a toilet, change the oil in my car, kill spiders – all without breaking a fingernail.  The Boy is an avid Legomaniac and Clone Wars addict, and RM loves all things Muppets and is an amazing builder.  I don’t have a whole lot of free time but I do love kayaking and golf – I am a true tomboy at heart.  I used to drive a big ol’ pickup truck and I love Top Gear (the British version).  I also like to revisit my beloved television series like LOST and The West Wing and 24 totally rocked my world.  I have also spent just a tiny amount of time playing Scramble with Friends on my tablet. (Just a little bit.)  Because at the end of the day, I am a total nerd and now I don’t have to hide it.

A Bit of a Hiatus from Harassment

I continue to advocate for people living with autism, but on a much smaller scale.  I don’t know which of us is more afraid of me getting back into it with Congress – me, or Congress.  So right now I am more focused on my family as The Boy is heading into middle school (holy crap) and RM (8) is now riding a bicycle and I think she just might be scheming to build a treehouse out of my good furniture using power tools. (Lots of Bob the Builder lately.)

Not only does the science of autism fascinate me, but I am increasingly amazed by the gifts of autism – inspirational folks I meet along this journey.  I adamantly believe that the autism community can and MUST come together and respectfully share experiences, advocate for each other and push for unity.

Divorce, or as I like to call it – Independence

SGM ran out of here one morning in October 2013 and seems to not have looked back.  I’m starting to get used to using my maiden name again (Leslie) and I hope you all get used to it as well. It’s been more liberating than devastating going through the process of a divorce.  At the end of each day I am with my kids whom I love more than anything in this world and that is such a blessing that nothing else will ever matter.

Thanks so much for joining me on this journey and I do hope that we get to know each other.

“We’re all a little weird. And life is a little weird. And when we find someone whose weirdness is compatible with ours, we join up with them and fall into mutually satisfying weirdness—and call it love—true love.”
Robert Fulghum, True Love

I love you.

 


10 responses to “Meet Rachel

  • Carrie Millsaps

    Nice getting to know u better

  • Frederica McLean

    I love this blog and want to promote it as a supportive resource to my families. Can I put you on my BlogRoll? I don’t know how to do it but believe that your blog would be so helpful to others! My blog is: http://livingabovedisorder.org/blog/ and is called Living Above Daily.

    Frederica
    Founder of Living Above Disorder
    http://www.livingabovedisorder.org

  • Jennie K. Diller-Daniels

    i absolutely LOVE the nekkie picture of your boy watching his daddy. it’s too priceless!! lila LOVES ‘cars’ too!! we swear we can recite mater’s tall tales word for word when we’re watching it!!! hahahaha. hope everything is going as good as it can be with RM!

  • a rant, a book and a plea for help « a diary of a mom

    [...] see, my friend, Rachel has something to say. And it’s important – really important – that we hear it. [...]

  • Shelly Huhtanen

    Hello Rachel,
    Well, you made my night. What a great blog! My husband is an Infantry Officer in the CAV and just got back from Iraq. We have a son with autism, who is 5 years old. I read the letter your husband sent to the Special Education Director. Ha!! My husband and I loved it!!! My husband is very involved in our son’s care and it’s great to hear about other Dads who fight for their kids alongside their wives. What great support to have!!

    Karen Driscoll is very popular!! I met her in D.C. to do some work with her on fighting for our kids with autism. She’s one awesome lady. I also noticed your link for ACT Today for MIlitary Familes. We are a big supporter of ACT today. Awesome organization. We will be traveling to California again to run in their 5/10K in April. For the past few years, I have been a columnist with EP magazine and do a little bit of writing. It’s great therapy and it’s nice to spread the word about ways to help our kids. It’s great see blogs like yours that share your experience.

    I just wanted to give you a shout out from one Army Infantry wife to another. You go girl!!! Keep doing what your doing!! You rock. :) Shelly Huhtanen

  • Karen Rabinowitz

    Hi, Rachel! I just wanted to stop by to say thanks for all that you do!!!! I know you are super busy but I nominated you for the Versatile Blogger Award, anyway! ;-)

    http://chameleoninthespectrum.wordpress.com/2012/04/13/versatile-blogger-award-who-me/

  • Lily Rose

    Hi Rachel, I’m Lily and I’ve been reading some of your posts. I just started blogging a few months ago about autism creativity and military life. We have soon to be 4 year old twins, and a six and a half year old son that lives with autism. My husband Alex also blogs about autism (Capt Dad) here on AMFAS too. It’s nice to meet you!!

  • Someone's Mother

    I just want to say thank you for doing what you do. I believe we live in the same suburb. Also, I am working so hard at not letting cowardice move into my life with the fortress of education as I like to call it. I’ve only just begun. Please feel free to contact me if you have the time and energy resources to do so. Thank you again for paving the road ahead of so many of us!

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