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.

 

 

 

 

 

In the Driver’s Seat

In the driver’s seat means that one is in a position to take control.
Oh, son, how you have placed yourself in the driver’s seat in more ways than one.

What a year this is turning out to be for me and for Christian. Those who follow my work and my social media platforms closely see that I have quite a lot of excitement going on. More about that at the end, because this post is not meant to be focused on me.

It’s about Chris and his massive success.

As you can see here, as part of finding his way in this world, Chris is focused on becoming a licensed driver. He has come a long way in the past five months from the first Sunday afternoon when we drove around the school parking lot together. I legitimately thought I was going to go through the windshield when he applied the brakes at his first stop sign.

Poor Snowflake (for those who don’t know, that is my Jeep daughter’s name. My Jeeps are girls. Don’t judge me).

Well, goodness knows during my first lessons, I was a hot mess express and nearly drove my boyfriend’s father’s big black Ford F150 (with an extended cab, mind you) into the telephone pole in front of my house.

Being the Google Map guru that he is, navigating his way is not an issue whatsoever. As I expected, he’s fabulous with shortcuts especially in unfamiliar territory. And I have to tell you, it’s AUsome (to my tribe, you see what I did there) to have another driver in the house. It gives me a much needed break – sometimes to catch up on texts and messages while he takes the wheel, and other times to close my eyes for ten seconds and breathe. Note, I only close my eyes for about ten seconds, because he *is* still learning and I need to be another set of eyes and ears as he grows more comfortable with being on the road and increases his techniques.

I was really worried after many failed attempts at the written test as to whether or not this dream of his would become a reality. I wondered if the failures were due to test anxiety, or the fact that deep down, maybe he wanted to drive, but he didn’t want to drive if you know what I mean. I was jumping and crying (tried to hold back the tears … NOPE, couldn’t) at the driver’s license center the morning he passed in November. After struggling just weeks before with a terrible end to a short lived job, I wanted this so damn badly for him. He once again defied the odds and overcame what had become a barrier to independence. Nevertheless … HE persisted (he earned the right to borrow this line in this particular case).

Speaking of the short lived gig as a chef, Chris and I met with his job coach and OVR counselor that same month at … ummmm, where else? Dunkin’! (Convenient, of course). We discussed the whole “where to go from here” concept and it became pretty heated. Chris actually got up from the table for several minutes and nearly had a meltdown.

Chris could have easily returned to Dollar General and yes, we did push that a bit because we didn’t want him, well, to be broke! We told him he could work and earn some money part time while pursuing his goals in food service. After some frustrating moments, he said to us, “I really like helping people. I don’t want to work in a store. Some days I hated it.” After another half hour of discussion, we honed in on the idea of volunteering at local nursing facilities where he could evaluate a variety of job possibilities that would help him to actualize goals.

He went home that morning and made a list of places he could call or apply while I rushed off to my little ATS home away from home (my mini apartment as I call it). He spent that day, and the next few weeks emailing, calling, and visiting multiple places with his job coach. He did keep other part time work under consideration, but ultimately decided “that isn’t what I want.”

After many visits and conversations with his job coach, Chris followed his heart, and applied to be a volunteer at Kane Regional Center in McKeesport. For those who know us better than others, you know that Kane is where our dear friend Frankie resides due to complications from a TBI stemming from a horrible accident that thankfully did not take his life. Kane is also where my dad passed away ten years ago after complicated illness. Kane, being a county managed Medicaid facility, has a reputation for perhaps not always being the most ideal placement. However, due to our own personal experiences, we know that there are so many good people who work there who truly care about the residents and treat them like family.

Chris, even at age 11, enjoyed caring for and entertaining Dad’s roommate and “neighbors” on 3B. He would assist with feeding, tidy up messy rooms, wheel people up and down the hallways, play board games and even belt out a tune now and then.

Chris’s spark to follow his gift (as Steve Harvey says, his GIFT, not his PASSION) has led him down a road that has landed him in a place of pure abundance.

For months, he volunteered three or four days a week, assisting with bingo, coffee socials, transporting residents to and from therapies on busy days, accompanying groups on trips (like the Festival of Trees and Rivers Casino), delivering and gathering trays, and transporting residents to and from church services on Thursdays and Sundays.

Chris was clearly not only finding his place, but he found something even more powerful that I too needed to rediscover this past year. He found his faith in Him. A little over two months ago, he was invited by Pastor Dennis and Pastor Marie to give his testimony in front of a small and close-knit group. He disclosed and explained his diagnosis of autism, his struggles, and his triumphs. Together, everyone prayed for and with him as they knew he was applying for a part-time food service and hospitality position with decent starting pay and benefits.

Prayer works, y’all. My boy VOLUNTEERED. HIMSELF. INTO. A. JOB. He was offered a position in February, completed his onboarding and has been working – HAPPILY – for a few weeks now.

Chris did what he set out to do. He tried out different areas in a “helping place” and learned new skills while he was at it. He cultivated new interests while building a bit on his passion. He discovered the church. He found his own tribe – not a tribe that either his grandmother or his therapist or I encouraged. He learned that there is life after high school and you aren’t necessarily meant to be with those people all of your life. He found a way to provide food service while helping others all at the same time. And, he gets to see our buddy several days a week and make him smile (especially when he beats Chris at Chess or Connect Four on the iPad).

A few weeks ago, Pastor Dennis and Pastor Spike invited us to service at Calvary Baptist in West Mifflin. They said they would love to have Chris as a member and thought he’d be an asset to their Sunday School, would make contributions to their incredible congregation, and find more camaraderie. We attended Sunday service, and I was amazed at how welcoming and laid back everyone was. We felt so much love and we felt the Spirit the minute we walked in the door.

But nothing prepared me for what I would witness during sermon.

As Pastor Dennis preached, Chris would hear others saying “yes” or “amen” in agreement with testimony. But at one point, he was visibly moved, and he said aloud, for all to hear, “He died for my sins and saved me. I WILL praise him!”

No matter what or who you believe in, the POWER and FAITH in his declaration was evident. I was in tears then and I’m in tears now. Chris has found confidence, he has found purpose, and he is moving forward in his life amidst other struggles he faces on the daily.

He has followed his GIFT – giving to others – while still exercising his passion, which is food service. This is person-centered planning, people. If you don’t know the term, get thee to Google University.

Person-centered planning was the focus of my last C2P2 (Competence and Confidence: Partners in Policymaking) session with my fellow female warriors (yes, we all happen to be ladies in this group). Yes, we need to be voices for others in our world, including and especially our loved ones. We need to speak up when they cannot, until the day that they can and will use their own voice. Never, ever stop believing that they can. And, if they are unable, please put yourself in their shoes and think, “what might I want if this were me? What is most humane? What promotes self-sufficiency? What promotes inclusion in our world?”

I have a homework assignment due in a week, and I refuse to do it alone (well ok, I kind of refuse to do it in general if I’m transparent. I can only add comments, share my thoughts on his vision and encourage his plans). We were asked to create a life plan with goals for our children and share in group during class. Well, I clearly learned my lesson that Friday and Saturday, because I spoke up and said “sorry, I can’t and won’t do this alone. His life plan isn’t up to me at this point. This is for him to determine. He has a voice and uses it.”

I’ll leave the worksheet for him Monday morning and see what he comes up with that I can add to. However, I don’t think he needs much of my help, just some gentle nudging and reminders.

He has taken the wheel, he controls the gears, and he is the one accelerating forward. And it’s going to be … *aulright.

~*~*~*~*~*~

*For decades, many family stories have been shared about autism’s impact and influence on our world. You haven’t heard ours.

Our story is now not only being shared through blogs and social media, but with the entire WORLD.

You can read an excerpt of our journey – and of a dozen triumphant women – in “It’s Going to Be AUlright – Testimonies from Ausome Women Raising Ausome People.” The eBook is available NOW for Pre-Order on Amazon (print version in April 2019, date TBD) and became a best seller in less than 6 hours ranking in the top 10 in several categories and even #1 on multiple lists including Rachel Hollis and Michelle Obama! I am so proud to serve as a contributing author and lead editor in this project with an incredible tribe. Little did I know that this would be the FIRST international publication I would be a part of, and that Imprisoned No More (a longer and fuller account of our story) was meant to come later.

Pre-Order Your Copy Now!

Please stay tuned to The Caffeinated Advocate and my social media platforms (my personal page on Facebook, my Facebook TCA page, LinkedIn, Instagram) for information about our Virtual eBook Release Party on World Autism Awareness Day, 4/2/19, book signings, an official launch party in Pittsburgh and more. You can also watch my Amazon Author Page.