In Which We Talk About Autism… Again

I think it’s been a couple of years since we played the “One Month in the Life of Autism with Alex, Paige, and Tim” game. And April is World Autism Awareness month so this seems to be as good a time as any. So grab a drink, hug your kids, and settle in while we discuss life with Alex… after which you will understand *one* kid with Autism. (Aaaaaand you’ll probably need another drink. HA!)

This is Alex. He’s 24. He is funny and quirky and sneaky smart and so sweet. He loves fire trucks (duh), trains, airplanes, military movies, Santa, Scooby Doo, and Bob the Builder. He is diagnosed with Autism, Periventricular Leukomalacia, intermittent explosive disorder, low muscle tone, and a few other things that doctors threw out while trying to diagnose a pre-pubescent, nonverbal, hormone ridden moving target. Long story short Alex has nonverbal Autism and a developmental delay. He has about 30 words, mostly not clear, and communicates through signing, gesturing, and grunting at us when he lacks the word. His brain operates on about the level of a 4 year old and he is completely dependent upon his people to care for him. Over the next month Tim, Alex, and I will open a window to our world in the hopes that the next time you see our 3 man comedy show tromping through the grocery store you will have a bit more understanding of what the hell is going on there.

Please feel free to ask us questions or leave us a comment. This is our favorite community outreach project of the entire year. 💙

Hi. My Name is Paige and I’m a Recovering Social Worker

Today is April 1, 2019 and it’s been just over 8 years since I last wrote. It’s been a really rough 8 years. I had a job that not only took over my life and changed my relationships, it changed the trajectory of my life and it negatively affected those who love me. However. Three months ago yesterday I resigned my position as a supervisor in my state’s child welfare agency and vowed to only let the positive into my circle from here on out. While the trauma I incurred sneaks out of me and into my present life every once in a while I can finally state, without hesitation, that I’m well along on the road to recovery. Watch out World, Fierce Paige is back!

Happy Lives Here

Sometimes Life grabs a hold of me and shakes me around like a dog with rag doll.  And when he finally drops me and I lift my neck to get my bearings and my head stops spinning and I, covered in dog-like Life slobber, look around to see where I have landed, I am shocked to see that the world has moseyed on around me despite my singularly desperate attempt to orchestrate my existence.

In layman’s terms:  I had a hysterectomy on January 7th and during my 3rd week of medical leave, I decided we needed to Move! Now! and “Everybody get up and pack some of this shit up!  The house goes on the market in a week!”  And so they did, and we did, and now Baby Blue, standing fast since 1901,  …

… is for sale to the highest bidder.

It makes us very, very sad to consider moving.  This house is where our relationship started.  It’s where we combined our households and all 4 kids.  We smooshed ourselves into this tiny little bungalow like an extended family at a lake house – with a kid tucked into every corner.  This is where we decided we needed a bigger table for the constant parade of family and classmates and girlfriends.  This is where we took a cute little house and made it our Home.

The list is long and vast, all of the reasons we should find a new home… bigger, newer, something that is Ours; a less busy street, more baby-friendly, room to “get away.”  But no house we find with the practical features that we need will have the character of this little place.  New windows would be nice, but drafty, century-old windows are beautiful.  Shiny new hardwoods are pretty, but worn old planks have a story to tell.  A big master suite is what every couple dreams of, but our little 12×10 bedroom with no closet and a full-size bed is cozy.

The decision to move and thus lose the Quaint was hard to come to terms with and it has taken us a full year to realize that no matter what house we choose to live in, our energy and our style will quickly turn it into a Home.

Happy lives here.

But Happy can also move on to a more fitting abode and still be Happy.

The 16 Years of Mackenzie

Dear Mackenzie,

I can’t believe I’ve had the pleasure of being your mother for the past 16 years.  Believe me when I say it’s gone entirely too quickly.  Given the chance, I’d do it over and over again.  Every minute of it…

1995 – A year of waddling and heartburn and anticipation.  Until January 16th, that is, when you came into this world with a 2-hour notice and then announced your arrival with a hearty wail.  Nothing was ever the same forever after.  Laughter pealed brighter.  Flowers grew more vivid. Tiaras became more sparkly.  …and the world was eternally changed.  We lived in San Diego and passed our time driving Dillon to and from kindergarten, taking long walks, splashing in the pool, and having play dates with friends.  You took your first airplane trip to Indiana, and your first trip to Disneyland.

1996 – Your dad was deployed most of this year and you, Dillon and I spent it at the San Diego Zoo, Sea World, and running around with Scientist Lisa and Kirsten. Dillon adored you and helped out wherever he could. We still lived in the apartment and took long walks around the neighborhood, frequently ending at the mall.  The ladies at The Gap knew us well.

1997 –  This year passed almost exactly like the 2 previous years.  We took trips home to Indiana each summer, and attended Auntie’s wedding (this is your dress!); we walked, read books, and played at the beach.

1998 -We bought our first house.  Your room was stamped with flowers and filled with books. Dillon went to school while you and I spent our days reading, cooking and digging in the garden.  And every time I turned around you were naked.  It was an awkward year for anyone who rang our doorbell uninvited. …and we evidently went home for Christmas this year.

1999 – In ’99, we learned that we would be moving to Japan within the year.  We spent weeks in preparation for this event.  We visited family.  We made the most of our idyllic life in San Diego – for change, it was a’comin’!

2000 – We vacationed in Hawaii before moving to Japan and after living in the Navy Lodge on base for 2 months, we moved into a townhouse and you started Kindergarten where you met Torrey and I met Rachelle and 2 mother-daughter friendships to last a lifetime were formed.  We went to Kyoto this year and you hand fed a deer.

2001 – You started first grade at Shirley Lanham Elementary School. We took a trip to cold, cold Sapporo. Wago and Papa made the trip to Japan to visit us. You refused to hold a guinea pig at the Sagamihara Zoo.  We came home and took a super-fun trip to Chicago with Wago and Papa that summer.  This is your first day of first grade:

2002 – This is the year of our epic Australia/New Zealand trip.  It was the vacation of a lifetime and one I hope you will never forget.  Wago came to Japan again and we rode the bullet train to Kyoto – you, me, Wago, and Dillon. This is when you still carried Cubby everywhere.

2003 – We spent a fabulous year in Japan, taking tours and hanging out with new friends like Hiroko.  Dillon played “Pete” in the Disney Light Parade at Disney Tokyo.

2004 – This was the year that you were in Sadao Watanabe’s International Chorus and recorded “Share the World” (track #12).  We went to Disney Sea in Tokyo with Torrey and Rachelle, and you learned to ski in Nagano.  In August, we moved back to the US and stayed with Wago and Papa for 4 months while we waited for your dad to join us.  You were in 4th grade and attended Mayflower Mill for one semester.  It was not your favorite time and luckily for everyone, it passed quickly.

2005 -In January, we moved into the townhouse in DC.  I finally saw the return of that happy girl that we left in Japan.  You quickly made friends with a great group of girls and this is where you started to swim and dive on the community swim team.

2006 – This year was the hardest.  Just getting through it took all of the energy that you, Dillon, and I could muster and the last 2 days ended with the announcement that your dad and I would be divorcing.  I still remember how devastated you were and how my heart broke that I couldn’t fix it.  Slowly we restored your “Rory” to my “Lorelai” and the world returned to a New Normal.

2007 – You finished out the school year with your friends and Dillon graduated, then in June we packed up and moved Home to Indiana.  Wago and Papa took us in and healed us with day trips, and cookouts, and gardening; books, and fireplace fires, and family parties.  In November of this year we moved into the house we named “Baby Blue” and created a cocoon around ourselves.  One of your great dreams was realized – you got to pick out your own cat:  Oliver, later renamed Bigcat by popular opinion.

2008 – A year of BIG changes.  I began to date and then married Tim.  Though you were a little resistant at first, you eventually came around and now you would agree that Our Boys changed our life for the better.  You decided since Alex was non-verbal that you needed to learn American Sign Language.  And then you made it happen.

2009 – This was the year you started high school.  I can’t wrap my mind around how quickly we arrived at this point.  All of a sudden, my baby girl, my mini-me, my shadow, the little girl who for years followed me around, jabbering all the while, became autonomous and I became even more proud.  I could almost see the woman you would become someday – you had poise, integrity, intelligence, humor, beauty, maturity – and I could not have been more content with the path you were on.

2010 – You took driver’s ed and gave Tim several new gray hairs. You got your first job (swim teacher, of course).  You rocked your grades and finished 18th in your class of 500.  You dominated the breast stroke and dropped your times (a lot!).  You took the PSAT’s and showed them who’s boss. You joined Best Buddies and you make a difference in a child’s life.  Your school has recognized, in less than 3 semesters that you’re a person who has something to offer.

2011 – I believe that 2011 will be a year of Happy.  There’s a car in your future (which equals happy for you, terror for me), you’ll start your junior year and begin The Great College Search.  You will drop your times in the pool, and continue to be the conscientious student that you are.  You will foster your civic-mindedness and generate Change for the better.  I will stand back and watch you grow, marveling at the beautiful and strong woman you’re becoming, and enjoy every minute of the ride.

Have a wonderful 16th year, Mackenzie.

I love you to the moon and back,

Mama

In Which Paige Channels WW

Hey!  You know what would have been a great idea?  To jumpstart the blogging process when I wasn’t medically ordered into slothfulness.  Because, seriously? I live in a rogue recliner in living room right now, talking to myself and yelling at the dogs to Shut. Up!  IT’S JUST THE MAILMAN!  HE COMES EVERYDAY!  Nothing remotely blogworthy is currently happening from my little corner of the casa but now I’ve started this blogging revolution and I feel an obligation to see it through despite how insipid the next several posts are sure to be.

And while I’ve got nothing to say, it won’t stop me from sharing what I’ve been thinking:

• Jeez, my back really hurts.  Is this normal?
• I wonder what will happen if I do the dishes.
• Is Babycat in?  Or out?
• Do I really have to pee yet or would that just be a wasted trip out of this chair?
• Shower now……………or later?
• Tyke’s new haircut looks nice.
• What did I take last?  Vicodin?  or Motrin?
• Where’s the damn phone!
• I don’t really think soda’s a great idea.
• I haven’t worn make up or done my hair in a week.  Score!

I sit in this chair, and just like my grandpa when he got old, I look outside whenever a car drives down the street and eat four tiny meals instead of two big ones. I’ve played games on the computer, watched the entire first season of Rescue Me, and created a new blog on an unfamiliar site; I spent Monday with my sister, updated Alex’s Sign List, and scheduled three appointments and an in-home lunch date for today. I have watched “Twister” three times (compliments of Autism), changed the background on my phone twice, and shamelessly stalked Facebook, all from my chair. It’s been almost a week and I have yet to pick up a book.  I’ve just been too busy.

If I start drinking generic beer out of jelly jars, DVRing “The People’s Court,” saving those styrofoam plates that your steaks come on, and telling my visitors that I can work them in next Monday around 3 after my bath, please call my mom for an intervention.  It’s beginning to look a lot like Grandpa around here.

2010 – The Year of Surreal

Well.  Since we last talked, Life has taken a turn for the weird.  Following is the year in Bullet Points:

• We took a spring break family vacation to Florida & Savannah – never take the Autistic to Disney.  It is counterproductive to their stability.
• Tim and I lost 10 pounds. Each.
• I received two aquatic frogs for Valentine’s Day.
• Mackenzie took Driver’s Ed and gave Tim several new gray hairs.
• Tim dropped hot McDonald’s coffee on his foot, giving himself 2nd degree burns.  We did not sue.
• Tim and I took a fabulous vacation (ALONE!) to Estes Park, Colorado and relished every second of it.
• Joe went off to IU where he got into the Jacobs School of Music.
• Tim and I gained 13 pounds.  Each.
• Dillon’s ex-girlfriend had a baby.  That’s going as well as you can imagine.
• Dillon started dating a wonderful new girl.
• Dillon rolled his truck in a near-fatal accident on October 26th.  He survived, is walking, and will make a full recovery.  His truck and his L1 vertebrae were not so fortunate.
• Dillon’s new girlfriend is pregnant.
• We coined the last quarter of 2010: “Dillon!  Whatthehell!”

So far in 2011:

• Joe began recording his own album.  There are currently 2 songs recorded and they are both fabulous.
• Tim and I lost 5 pounds.  Each.
• Tim and I killed several hundred tadpoles.
• Mackenzie swims a personal best nearly every time she gets in the pool.
• Tim was promoted to Lieutenant.  No surprise there.
• Dillon received his EMT Certification.  Finally.
• Alex added another word to his vocabulary – “hair.”
• I had a hysterectomy.  I am counting on my waist being smaller now.  It’s only logical.

…and that pretty much brings you up to speed.

I plan to be more creative and less stressed in 2011.  I plan to make more jewelry and cards. I will knit more. I plan to take more pictures and write more frequently. I will eat more family dinners. I will attend more case conferences, doctor’s appointments, and swim meets.

I plan to take things one day at a time and slow down enough to enjoy the Present because every time I stop to find my bearings, it’s a shadowy memory fading away in the distant past.

To Thine Own Self Be True

Where does one start after not blogging for a year and barely blogging for two before that?

I’ve been thinking about starting up again for a while, and even made myself one promise after another:

“I’ll write on nights when Tim is at the station.”

“I’ll start again after my birthday.”

“I’ll do a recap after XYZ event.”

But none of those things ever happened and I’ve been balking on picking it back up.  Then last week Mackenzie asked me, “Mama, why don’t you blog or read anymore?”  I know why I don’t read much – by the time I get home at night and finish my daily routine, my eyes are too tired to see clearly.  Even with my glasses I can only read for about 15 minutes before my old, tired, eyes shut on the page.

But when I tried to answer why I don’t blog anymore, I stuttered around for an answer and never found one.  I’ve been pondering this for 2 years.  Part of the reason is that I felt like I needed to censor myself and what would be the point in writing a public blog if I had to censor what I had to say?  Part of me felt that adding my new life to my old blog would somehow stain my new existence.

So I didn’t write and part of me died.

I have trepidations about starting this all up again.  I fear repercussions.  But what I do know is that to live, one must be true to herself.   And my true self writes.  It’s what I do.