Hitting the Open Road

“I take to the open road – healthy, free, the world before me.”
~ Walt Whitman

Christian, a 21YO autistic adult, hits the road after we purchased his first car this past weekend.

I was sitting at the Penn Hills PennDOT Center, praying with my eyes closed, but peeking constantly to glance at the time on my phone. Chris and Mike, the nice-enough road test administrator who looked like a cross between Rob Zombie and Jesus, had been out for almost 20 minutes. They left around 3:20pm, as Mike was running a few minutes behind schedule. He called us to his desk a few minutes prior and asked us for our paperwork.

He then asked Chris, “you ready to hit the road, kid?”

Chris nervously nodded and said, “yes, sir.”

Away they went with Snowflake (for those who don’t know by now, that is the name of my Jeep – a 2018 Renegade, and she’s a girl, thank you) and there I was sitting and waiting not so patiently.

It took Chris a year and a half to pass the written permit test. I believe it took six tries, hell maybe it was seven, I don’t recall. What I can tell you is that after Chris’s sixteenth birthday is when we first obtained a copy of the written manual. He studied the book off and on for years. He always had the desire to drive, but wasn’t sure about the actual driving part. Loving everything from Thomas the Tank Engine to traffic lights and telephone poles to Google Maps, from a young age Chris was simply a human GPS. I never had any doubt that if he ever obtained his license, he would be able to navigate his way around our area and beyond – and far better than I!

After several failed attempts at the written test, Chris decided he needed a break to study more, truly understand the material and move past his test anxiety. He kept missing the same questions over and over – so frustrating!

He downloaded the app for the PA Practice Drivers Test and began to use that to memorize the answers to the exam questions. In a small planner given to us by our neighbor, he started making written reminders as well as reminders in his Google Calendar to study each and every day so he had frequent visuals that also helped make him accountable for his studying. We had to return to the doctor’s office to renew his physical because so much time had passed.

Two more attempts were made, and those same nagging questions were missed.

We finally reached the day where he went into the center, bound and determined to pass. And by golly, he took double the time for the exam and he did it. He passed!

It was a Sunday afternoon around 3pm when we first drove to the local school parking lot and we switched seats. He was quite nervous, but slowly (at about five miles an hour) started circling the lot. Braking definitely needed work. And when I say work, no offense to my boy whatsoever but I felt like my stomach was at the other end of the lot!

Over the next few weeks, we kept driving around the school lots, and one day he had the courage to drive home from the school (which is only a two minute trip).

He had money saved, and he asked me about paying for professional lessons. I did what I typically do (mama bear powers, activate!), and that was to ask around and research driving instructors in our area. Recommended to us was A1 Driving School in North Huntingdon. I asked Chris if he wanted me to call to set up his first lesson and he told me no. He asked for the number and said he would do it himself. At the time, he was in between jobs and just starting his volunteer gig at Kane Regional. He definitely had time to make the call and time to take lessons. He believed he could, and so he did.

He was taking lessons and also driving with me either to drop himself off for volunteering (and later to work once Kane hired him in March), or to the store, or to appointments. Now, it took a while before he tackled major highways or the parkway due to his fear of lane changes, but in time even that came to him.

Truly, time was our biggest solution – time accompanied by great patience.

The more he practiced and the more he faced his fears head on, the more he learned that he was capable and in control. He had moments where someone would cut him off or come a bit too close with a turn, but I reminded him that this could happen to ANY driver diagnosis or not. I told him that had nothing to do with having autism. Some people just should not be on the road, I would tell him.

He started focusing more on parking, especially parallel parking which is his mama’s nemesis (even today after driving for almost 25 years). I admittedly failed not once, not twice, but three times as a teen because I just couldn’t get it right. I still think that to this day I only passed my test because I was wearing a cute purple leather mini and looked like a pinup girl, impressing the younger instructor. Whatev.

He downloaded an app from State Farm, called Steer Clear (which is available on iTunes and GooglePlay) to complete their courses, obtain driving tips and more. It also qualified him for a future discount on our policy.

Chris had a lesson on the Fourth of July, when he happened to be off and Todd happened to have his morning free. They practiced for an hour at the center, using the barrels for parking and running the road test course a few times. They came home sooner than I thought. Todd got out of his car and said to me, “you know, I don’t quite understand his diagnosis but I do understand his personality and recognize he gets anxious. But he knows what he is doing, and he is ready for the test. The only one that will hold him back, is him.”

I blinked back tears when I went back in the house. What Todd was saying to me was exactly what every teacher and therapist said to me over the years – that the one holding Chris back was Chris himself. It was that lack of self-confidence and fear of being different and/or not enough that was at times quite crippling.

Chris asked me, “can we log on and schedule my test?” And so, we did.

It was almost 3:45pm and my nerves were s-h-o-t. I saw Mike walk in to take the next person waiting to test, but I didn’t see Chris. Soon, I saw him come through the doors, red-eyed and white-faced.

“Noooooo!” I thought. He tried SO hard, and he wants this so much! This can’t be happening.

He came up to me, and I slowly turned towards him. “Did you …. ?” I trailed off.

He nodded, looking almost shocked, tears in his eyes. “I passed, Mom.”

I jumped up and hugged him, probably scaring him out of a decade of life. As of recent years, he is not super affectionate with me which I am used to. He went over to have his photo taken – a photo that shows him smiling from ear to ear. I called Mama Betty, bawling and not caring who saw me. I said “this is for everyone with a disability who thinks they can’t do something.” The woman who was sitting next to me smiled when I was off of the phone, winked at me and said “congrats, mom!” I don’t know if she quite understood the magnitude of what happened, but I was grateful just the same.

The photo I shared across my platforms and groups went viral – in fact, it is still being shared and we continue to get comments and private messages. What meant to the most to me was that teens and adults with autism and/or their caregivers were responding that his story was ultimately giving them hope.

Isn’t that why we share our stories to begin with? It makes my heart full.

Over the next few days, Chris began asking to make trips, first to a Bible study at his new church (a group of gents from 20-70 years of age), then to Subway, then to GNC to pick up vitamins, and then Giant Eagle in Monroeville (twice the size of ours with a Nature’s Basket) to buy groceries. The one evening we had a terrible downpour, and he knew enough to pull over, text me from where he was (ONCE PARKED), not drive through flooding and wait it out. I was so proud of his responsibility!

I had seen a Jeep Liberty on the lot (actually, two) at Jim Shorkey via their website that seemed affordable enough, so I made an appointment to visit after Chris was done at work for the day. Rather than look at the two older vehicles with higher miles, our salesman named Brian asked if we would consider a Patriot. We test drove a 2013 with 85K miles, but it seemed like the transmission was going so that was a no-go. |

Brian said to us, “you know, I have a fantastic 2016 with only 45K miles and all the bells and whistles.” We went outside again, and lo and behold, with the exception of being a High Altitude vs. a Latitude (which means very little difference in features and opti0ns) it was like my Smoky (the Jeep I traded in exactly one year prior)! I laughed out loud. Brian asked “is something wrong?” I could barely get out words because I was laughing so hard “it’s like we’d be buying my old car back, only this is in far better shape because I beat mine into the ground.” We went for a spin and Chris was very happy with how it handled and rode (which I had no doubts about).

I winced when we returned to the dealership. “Brian, I’ve got excellent credit but I just bought my new vehicle last year. I’m not sure even with Chris’s income added that I’ll get approved. And these payments … I’m not sure that he can do something this new or this nice for his first car.” Learning Chris’s story and background as he and other staff had seen the now popular photo on the Facebook group “Across Westmoreland,” he said, “you let me and my manager worry about that. He has worked hard and he really deserves this. Let’s make this happen.”

With very little bargaining, we were able to get the payments to a reasonable monthly amount for him and we were approved in two hours.

What a great day, indeed! Thanks, Brian!

The look on Mama Betty’s face when we came home with two vehicles was priceless. Within an hour after eating dinner, he drove to Best Buy to look for a backup camera to install and also a phone charger. He also set up his Bluetooth so he could safely use his phone on the road if needed.

We have never been a two-vehicle household. This is brand new territory! I have immense joy for Chris and his newfound freedom – admittedly, along with the relief that I no longer have to worry about my own schedule adjustments and that I have an extra person who can get to my mother in an emergency if I am out of town.

Let’s get back to that freedom thing though, shall we? I am asked so often about what Chris does for socialization outside of work or what I want to see for him.

It’s not about me – it’s about him and his desires and what makes HIS heart happy. I don’t and will never push for him to be with “peers his own age.” I haven’t done this since his childhood. He was who taught me at a young age (his first ever IEP meeting) that forcing him into social groups with young men who only shared a common diagnosis was wrong. I had to let him choose his hobbies and interests. Yes, he did spend a lot of time alone and yes, sometimes that depressed him. He spoke about that often with his therapist. However, both she and I found as he grew older that same lesson rang true – he needed to make his own choices and learn from them. He knew that obtaining his license would give him more opportunities. Now that he fought to achieve this goal, he now has the opportunity to spend time with others OR be alone. Isn’t that what we ALL do, diagnosis or not?

In the past few days, he has driven to a friend’s house to have dinner with his family, went running at a local trail, shopped for new shoes, and swam laps at a local pool. I am so happy for him.

Tonight, he’s off to the mens’ group at church while I enjoy dinner with Dave during my “staycation” from work. On Friday, Chris returns to work and may be discussing a different schedule that may finally lead to full-time status and health benefits. All of my limbs are crossed, that is for sure. If you don’t mind, keep a good thought for him!

As I have shared before, it is Chris who was quoted in the final school newsletter of his senior year “never let a diagnosis or disability hold you back.” He’s definitely staying true to his own words of advice.

We could all learn from his … roadmap.






Saving Light

Last night was hard. More like gut-wrenching.

Our community lost an amazing man yesterday, and I learned of this loss when I got home from my typical Friday night grocery jaunt with my crew. He (I’ll call him Trevor for anonymity’s sake) had so many talents – the arts, music, photography, not to mention being a kick-ass clinician and teacher by day and passionate advocate.

He was also a devoted husband to an incredible woman and loving father of beautiful young children.

I had to read the post in our private Facebook group a few times before reality set in. Moments later came the hand over my mouth, tears welling in my eyes, and then …

“Why didn’t I say something?”

Weeks ago, I happened to come across one of Trevor’s posts in my feed, and what he shared was deeply personal. What followed for days afterwards was fairly dark and he soon removed that jarring post revealing something that I believe under typical circumstances he would not have written for public display and also referring to himself as “a joke,” as “unworthy” and truly lesser than others in this world.

I had a dream last week that I was at a gathering with both Trevor and his wife present (probably an upcoming event when we would have all run into each other), and that we were enjoying a conversation about the work we were doing and about our kids. I woke up peaceful. Looking back I wonder if it was because in that dream, so lucid and so real, we were speaking face to face and I had made a connection with the two of them.

Why didn’t I reach out like I did in my dream, when my instincts kept nagging at me and saying “something isn’t right?”

Why did I assume that someone else spoke up already?

Why did I feel as if it were not my place to practice kindness and express humanity, even if just to send a message to ask “hey, is everything ok? You seem pretty upset lately.”

Why didn’t I follow my heart?

Why didn’t I advocate for his well-being, so that his wife and children would not be in mourning today?

I wish I had. I wish. But dammit, wishing isn’t going to bring this man back.

Death by means of succumbing to mental illness is devastating, and just passes ones pain to others. However, this world needs to “get woke” and recognize that suicide just isn’t a choice that someone who is emotionally well would choose. It is the way out for someone who has suffered for far too long without relief, feeling as if they just don’t have another viable option.

Depression is an evil beast, a dark reaper that takes over one’s mind and soul, and sometimes, our human selves are unable to fight any longer.

It has almost ripped away many friends and even friends’ adolescent children from my circle. So many faces and stories right now are flashing through my mind.

I’m thinking about my mother’s cousin’s ex-husband Bill, whom my cousin found after just days without typical contact. Though the marriage did not last, she kept tabs on him as she knew that no one else was. He had a diagnosis of bipolar disorder, and it was severe. Without his medication and without maintaining his therapy sessions, he was a ticking time bomb. After days of “disappearance,” the time bomb went off. She sensed something was wrong, and she went to his apartment. She said to my mother and I, “I will never unsee that for the rest of my life.” I can imagine that witnessing such a scene is like a video stuck on repeat.

Growing up, I was aware of this danger being the daughter of someone with bipolar disorder myself. As I have shared openly, mental illness runs rampant in my family on both sides. As a child, somewhere between the ages of 8 and 10, my father was hospitalized not just for one of his usual cyclic episodes, but because he was 302’d. If you aren’t familiar with this term, it means you are committed to a psychological setting or hospital because you have made a threat against someone’s life or your own. July 14th will mark ten years since I last looked in those big steel blue eyes. I’m so glad that he wasn’t ultimately victim of his diagnosis (no, just everything else under the sun it seems), and count myself fortunate that I had him in my life for as long as I did. We were blessed.

Also in my mind’s eye is my college dean, who also lost his life to depression when I was in my 20’s. I could not stop crying for days when I learned that he was gone. If it wasn’t for him – named John, like my Daddy – I would not have finished my two year degree. I walked – no wait, I wobbled – into his office when I was about seven months pregnant with Christian. I said, “I’m here to withdraw and I apparently need your signature to do it.” Rather than taking the form and pen I tried to hand to him, he pushed both back into my hand and asked me to sit down.

He asked how I was feeling, how my classes were going, and if leaving school was really what I wanted. Not only had I just switched my major from education to journalism, I was active with the student paper as the Editor-in-Chief, I was involved with student government, and I was a campus ambassador who gave tours to prospective freshmen. I said, “Well, no, Dean Beatty this isn’t at all what I want but I don’t know that I have any choice right now. And besides, why would you want me as a Lion Ambassador? I’m PREGNANT. I’m a poor role model and I let everyone down including you.” I put the form on his desk. “Go ahead, sign it.”

He stood up, handed it back to me, and gave me a hug. “No, Cathy. No. You are a role model. You are a good student. You’re a good person. You are going to make something of yourself for you and that baby and I will NOT sign that form. Not now, not ever.” Fast forward to the summer of 1998, I enrolled in a summer class and started working towards a letters, arts and sciences degree. In May 1999, my mother, my father and my son in his stroller accompanied me to my graduation ceremony. I would not have donned that cap and gown if it weren’t for that man – a man who like Trevor and like Bill simply could not overcome the demonic cloud of mental illness.

These memories have been haunting me since last night, like what cousin Gerry describes as the scenes that won’t stop replaying.

When I realized that it was five years ago this month that I was in that same dark place myself, I let loose and let Mama Betty comfort me while I sobbed hysterically. I said, “Mom, do you know that could have been me that people were dropping their jaws over?” In July 2014, I almost faced that same fate. I thank God, my loved ones and treasured friends for ensuring that I accessed the treatment that I needed to recover, to restore, and to realize that I am indeed worthy and that I am indeed enough, right now. They saved my life.

I’ve been so busy these past few months with many exciting happenings while watching my son strive to grasp abundance in his life, too. We had a rough go of it for a while, but I’ve clawed my way up out of the rabbit hole. I’m involved with several writing projects, both collaborations and solo pieces, and no they aren’t just focused on autism. That’s what I’m most well known for, but as I told a friend who will be interviewing me next month for her podcast, I don’t narrow myself to one bucket. I have so much to share.

I have said yes not just to authoring works, but to multiple interviews and presentations – from teaching healthy relationships and self-care for people with disabilities to stressing the critical importance of providing Applied Behavior Analysis to persons living with autism to my experience as a survivor of sexual assault.

I am going to keep saying yes, and I am going to keep openly sharing each and every painful moment. Recovery has amplified my voice more than ever before. I refuse to be a highlight-only reel on my platforms.

I am no longer afraid.

I am imprisoned no more.

I owe the world my stories. Someone, maybe many someones, need to hear them. Maybe next time, my story will save a life and stop someone’s light from fading away.

Who cares if one more light goes out?

Well, I do.