Posted in The Early Years

The Potty Predicament

When Evan was younger…potty trained but not yet verbal enough to explain his fears and concerns…public outings and trips were nightmarish. Evan was terrified of public bathrooms, especially ones with automatic flushing potties and hand dryers.  Back then he couldn’t express his fears…he would just meltdown if I dragged him into a public bathroom.  How was I to know the sensory overload generated by an autoflush toilet? Later, he told me that a hand dryer looks like a scary open mouth that might bite him or swallow him.  Grateful that he could express his anxiety, yet I felt guilty for the many instances that I forced him into a restroom. When I understood his fears, public toilets were no longer a viable option.

Long car trips presented extra challenges since poor Evan couldn’t tolerate rest area bathrooms or bathrooms in most public places.  It was much later that we discovered that Cracker Barrels had regular flushes and no hand dryers, but by then, Evan wasn’t going into any public restroom for any reason. Period.

Ed used to say that if Evan needed to go badly enough, he’d suck it up and endure the hand dryers and the auto flush toilets.  I knew better.  It was torture for him. So when we traveled, I used to take Evan off to a distant tree and let him pee there.  If he needed to poop, I’d support him under his arms while he pooped under the tree.  I brought tissues so he can wipe his little butt.  Ed almost died of embarrassment each time this happened, worried what other people would think. 

Did I like that Evan was pooping behind a tree in a rest area?  Negative.  But I liked less the thought of my baby, terrified to go into a public restroom, trying to hold his pee and poop for 8 or 9 hours.  His well-being comes before my embarrassment.  I do whatever is necessary to take care of my boys, whether conventional or kooky.  Ed is solidly in the “traditional” camp.  Being unconventional is solidly in my wheelhouse.  “Normal” is overrated and boring.

Through the years, and through many school experiences, I would repeatedly and successfully advocate for Evan’s potty needs.  In one elementary school, they had a plumber come out and change an automatic flushing toilet in a quiet admin area back to a regular flush, just for Evan.  In high school, Evan was excused from having to enter the locker rooms for P.E. (hand dryers), and was authorized to use the private, regular flush restroom in the nurse’s office. 

As a new autism mom, I didn’t realize how much advocacy would be involved in raising my kids on the spectrum.  Over the years, I would learn that almost anything within reason, can be arranged as far as accommodations within the academic setting, including suitable restroom facilities.

Posted in The Early Years

The Diagnoses (September 2001)

By 18 months old, Evan lost most of his verbal and fine motor skills, and withdrew into the world of autism.

My boys’ autism diagnosis is inextricably tied to 9/11.   I guess all of us remember where we were and what we were doing on September 11th, 2001.  That same week, I received the diagnosis, the official report, stating that both of my boys have autism.  I already knew what it would say – I had been prepared.  Still the confirmation hit me hard.  And with Ed in Washington D.C. for a training class, he was not only “not here” to be with me, worse, he was “there” in D.C.  When American Airlines Flight 77 hit the Pentagon, Ed took photos from his hotel room, right across the Potomac, of the smoke rising from where the plane struck.

The kids and I had been watching Barney.  The “kids” are Brian, Evan and the three siblings I was nannying in order to bring in some cash, and provide social stimulation for the boys.  Knowing Ed was in D.C., one of his sisters interrupted the dancing dinosaur with a phone call, frantic to find out if Ed was okay.  That’s how I learned about the Twin Towers and Pentagon terrorist attacks.  During an episode of Barney.

Later that week, when I received the report, I was prepared for the diagnoses because I’d already done my homework.  Ever since my sister, Annie, made “the comment”, I’d researched my heart out.  Annie’s remark came after she and her family joined us for the July 4th holiday.  As they packed up to leave, and we said our farewells, I picked up my two-year old, and said “Evan, say bye to Aunt Annie and Uncle Jay”.  Annie’s comment (that I remember vividly to this day):  “Cindy, I don’t think he’s known we’ve been here the whole week”.

My first thought was:  WHAT THE HELL?  Followed shortly after by:  “Oh crap, is she right?”  The more I thought about it, the more light bulbs went off.  He didn’t look at them, didn’t make eye contact, didn’t interact or play with his cousins, he lined things up, and repetitively made strange movements that I later learned were call “stims”.  I frantically thumbed through my copy of “What to Expect When You’re Expecting”, which included about six paragraphs (in the Childhood Illness section) on autism.  I recognized it immediately.  And cried.

I hit the internet with a single-minded determination to learn more.  I took a deeper dive into all things autism, trying to understand my baby and how to help him.  As I read, I had an epiphany.  One aha moment after the next, and by then I was 100% convinced that not only did Evan have autism, 4-year-old Brian, clearly had Asperger’s syndrome.  It became crystal clear.  He had significant speech delays, was hypontonic, had multiple and severe sensory issues, was obsessed with trains, read at age 4 and was generally too “smart” for his age.

Even though I knew the diagnoses in my heart, there’s something about seeing it confirmed on paper.  The developmental pediatrician had been thorough in testing both boys, and I knew her assessment was accurate. 

Looking way back to my own childhood, I recall being assaulted by overwhelming smells, sounds and sights.  Trips to the mall hurt my ears because the buzzing of the fluorescent lights was crazy-loud.  I was the quintessential “princess and the pea”, and a lump or bump in my mattress would screw up my sleep in a heartbeat.  Still it would be a while after the boys’ diagnoses before I became sufficiently self-aware to recognize my own Asperger’s. 

I recently read an article about females on the spectrum, and the differences in how we present.  Our symptoms and behaviors may not be as readily apparent or appear “autistic”.  I discovered that my lifelong battle with anxiety, depression and PMDD is not unusual for female Aspies.   Matter of fact when I read Samantha Craft’s “Female and Asperger’s:  A Checklist”, I found myself check, check, checking along.  Her list hit the nail on the head.

I had answers to why I’ve always felt out-of-step, weird and like I don’t belong.  The question became…would that knowledge and insight translate into a system or program that would benefit my boys?

I would quickly discover that yes… my own quirkiness and unique way of viewing the world was immeasurably helpful in raising my boys.  Having all four of us (counting my husband) on the spectrum has been exhausting, exasperating, entertaining, and still…quite the growth experience for us all.  If I had a magic wand and could go back in time, there would be a few things I would change for sure.  But not many. Overall, I’m pretty content with the present.  And the present is a gift, much appreciated after living through the intense and often overwhelming experiences of our past.