What does it mean to be The Caffeinated Advocate? I’m going to tell you! Lean in and listen to my latest podcast interview with the AUmazing Mai Ling Chan of Xceptional ED on the Xceptional Leaders Podcast! I think our time together was pretty doggone “xceptional” but I’ll let you be the judge!
Listen to the full episode here: http://bit.ly/2LVJT4x
“I take to the open road – healthy, free, the world before me.”
~ Walt Whitman
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.
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.
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.
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.
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.
Everyone’s favorite (I think?!) Caffeinated Advocate (ummmmm, MEEEE!) is going to be “Keeping it Moving” by chatting with Maryland autism supermom and podcaster April Green and her hubby Vondell tomorrow night on “Keeping It Moving with April and Vondell!”
Voices of Hope – Coffee and Consent
Autism Personal Coach – Autism Stories
Abundant love … and WARMTH … to you all on this polar vortex evening in the ‘Burgh!
This totally isn’t a way I would describe myself on the day to day, even though it’s how others often view me. I do refer to myself as a “gladiator” (thanks, chief) for surviving more than the average 40YO has had to endure in their lifetime to date. But I don’t at all look in the mirror and say “that girl in there, she is always strong.”
Maybe I should. Maybe … I … should?
In my last blog, you could see that I needed a break from the hustle. Though 2018 was filled with more changes and much self-discovery with my family, my relationships, and my career calling, I couldn’t keep going at the rate that I was. Conversations filled by both laughter and tears with trusted friends reminded me that I don’t need to prove anything to anyone but myself, that I am running my own race, and that is ok to take the time I need to recover. After a rocky end to 2018 and realizing I wasn’t going to meet all the goals I set for myself, I decided on the word “restore” to center me in 2019.
I follow, read and absorb the work of Shellie Hipsky, Donna Anne Pace, Kristie Knights, Kristine Irwin, Jordan Corcoran, Mary Lee Gannon, Lisa Nichols, Dr. Ali Griffith, Rachel Hollis, Jen Sincero, Valorie Burton, David Allen, Steve Harvey, Ashley Stahl, Jenni Schafer, Crystal Paine, and Brene Brown to name … ok more than a few. I share these names so perhaps you can draw inspiration from these folks as well as you move through your own self-discovery and restoration. Oxygen mask … self … first. Google them. Follow them on social media and check out what they’ve done. Discover some awesomeness.
At the end of 2018, after returning to a role I hold so dear, I threw myself into about a million and one things and set so many goals for myself, that I completely set myself up for failure. I wanted to drink more water, workout between the gym and walking at least 5 days a week, excel at my job, support my family, hold down a relationship, read 20 books before the end of the year, blog once a week, write half of my draft for Imprisoned No More, participate in podcasts, write guest blogs when approached, get my finances in better order, do more home repairs, and and and and and and … ARE YOU TIRED YET? I’m tired from typing it.
When you have too many goals, you cannot help but stumble a bit and you end up half-assing everything. And you are SO. DAMN. TIRED. We are human beings living a human experience, and I need to remember that.
And going back to that for a second, I hate half-assing things. I like to whole ass them, thanks.
Anyways, I can tell you this … I have learned, processed, and comprehended important life lessons and found so much strength in my ability to cope, to move forward, to let go of what doesn’t serve me, and to be more gentle with myself.
In a recent text exchange with my boss about another of my son’s public vents on social media (frustrating, but certainly his right), he said to me “you have the resolve of a super hero, thank goodness.”
Deep down … we ALL have the ability to be superheroes. And we need to believe it.
To my readers who love, care for, educate and support someone who impacted in some way by a diagnosis …
I SEE YOU.
I see you, I watch you, I hear you, and I love you, no question. Being a caretaker, being an advocate, and this whole adulting thing to boot? It’s not a simple road.
But … we can keep our cars on this road. I swear to you … you can, you will, survive. If you are reading this, you’ve survived every single day up until now, and I certainly pray tomorrow is no different!
You may not have all of the answers, and you may grow tired seeking them. You grow tired of “what school?” “what therapist?” “what diet?” “what medication?” “what social group?” “what toys?” “what app?” “”what program?” “what job?” “what nurse?” or just … “WHAT NOW?”
I had a lot of “what now?”s this year with Christian. He had many ups and downs between medication and nutritional management, finding stable work, trying to find a place for himself socially, keeping his moods in check (and some of those moments for us were quite dark and frightening, out of respect I will stop there), and in general, navigating the adult world. It is hard for ANY 20-something, but add autism and a dash of mental health afflictions to the mix, it’s much more complicated no matter where the person falls on the spectrum.
The end of 2018 brought him some new adventures however, in that he obtained his learner’s permit after a year and a half of study and he’s learned new skills while volunteering at Kane Regional Center in McKeesport. Digging deep meeting with his OVR counselor and job coach, he said “I like food service, but I really want to help people. Maybe that’s what I should try instead of working at stores.” He was fixated more on Kane because that was where my father spent his final days, and that is where a friend of mine is a resident at the age of 38. Both as a child and today as a young adult, Christian has thrived on connection and caretaking. He enjoys supporting the activities, running the coffee socials, attending field trips, transporting residents to and from therapy and church services. Staff and the clergymen and women at the center have approached me many times, hugged me and said “We just love our Christian!” He is still hoping to land a position there, but so far, no dice. He had an interview that was “so-so” as he described it, and he hasn’t heard back yet. He’s working with his coach once or twice a week putting in applications and hustling, so I’m hoping for the best. But look at what he’s done – he is volunteering his time – 8 hour days – so he can learn a new trade. Pretty doggone cool, isn’t it?
Yes, I am letting him drive Snowflake (if you aren’t aware, that’s what I named my beloved 2018 white Jeep Renegade which is the vehicle I’ve wanted for years). If that isn’t love, I don’t know what is! He isn’t doing half bad, in fact, if I’m honest I think he picked up road skills more quickly than I did. Of course, he has yet to parallel park and he says that judging the distances for parking is hard for him. The apple does NOT fall far from the tree here, folks!
As for me, my work keeps me busy, but is rewarding even on my longest days. I’ve been doing a lot of self-reflecting and am taking steps towards becoming my best self. I’ve been around for forty years, and I plan to stick around for twice as long … maybe I’ll outlive Betty White (she can NEVER DIE), who knows?! This year is including an abundant load of personal and professional development to truly help me map out what I want to do during my blessed time on God’s green Earth. I was just accepted into a course on advocacy and policymaking, I’m going to be coached by an international mastermind (a once tenured professor who also worked in special ed, so she understands my heart), I’m going to be … PUBLISHED! … in the spring as part of a collaborative book project, will be participating in more podcasts, will be featured in an international magazine (more info on that soon!) and I am determined to finish my book come hell or high water now that I have a better idea of the direction I need to take with it.
But all that being said … I know that I have to recognize when I’m approaching my line in the sand. I may need to take moments – days even – to restore myself. As long as I don’t unpack there for an extended stay, it’s all good.
Always strong … I need to keep reminding myself of this. Even when I … we … don’t feel like we can go on, we can, and we will. I don’t like the alternative, so, I’ll keep … “keeping it moving.” Right, April? I said, am I right?!
I think I have found the phrase for the second tattoo I have wanted for years (if I get over my needle fear). Thanks, Jennifer and Hilary – xoxo.
Until next time, readers … good night and sweet dreams, my well wishes sent with abundant love. I won’t be a stranger. Pinky swear.
Why has Cathy been quiet?
I’m struggling. I’m done pretending I’m not. The Caffeinated Advocate is waving a white flag stained with salted caramel coffee spots (try it – Aldi’s K-Cups are actually pretty bomb-diggity).
I haven’t blogged in months, despite my spiffy new logo (thanks again a billion times over to Eric Buczynski of Digi-Detox Computer Services and my dear friend). I haven’t written a chapter in weeks … a month, maybe? I don’t know, it’s probably been longer than that. I thought that my latest reads and follows (David Allen’s “Getting Things Done”, Jen Sincero’s “You Are A Badass,” and Rachel Hollis’s “Girl, Wash Your Face” to name a few recent faves) would have perked me up more and propelled me forward. Well, sure they helped me push towards my goal of reading 5 books over the next year, set for myself because all I have done the past two years is skim social media or flip through Mama’s Betty’s celeb mags.
Nope. I’m tired.
I’m. so. damn. tired.
My self care has SUCKED. I can’t sugarcoat that – sucked, sucked, and suuuuuuuuuuuuucked. I take small moments here and there, but those moments are few and far between and extremely inconsistent. And that means I’m in poor condition to serve others effectively.
I’ve been in this place before, and I’ll pull out again. That’s what I do. That’s what everyone is used to seeing from me – a gladiator that rises from the ashes and reignites the whole damn fire. And maybe that’s why people are inspired by my words and my example. I am one of those people that isn’t afraid to be real, has learned to be completely vulnerable, and doesn’t need to take 1578 photos of my grabbing my tousled hair and spend an hour creating a faux pretty caption with cursive font at a cheap attempt to depict my non-existent perfect life. Anyone see my before pic napping under my leopard throw yesterday? HOT. MESS. EXPRESS.
As another year slowly winds to a close, I know that it is up to me to make more change – lifestyle changes – before the year is out. Anyone who knows me well, knows that I don’t wait for 12/31 and I abhor resolutions. I am one of those “start here, start now” folks. It was truly my mantra for 2017, it spilled over into 2018, and I made a number of changes in my life. They were terrifying yet transforming. I quit many things, including jobs and toxic relationships.
Walking away without explanation, clarity or closure from what turned out to be another toxic relationship hit me harder than I thought it would, especially at a time when I’m in the midst of throwing myself into my work (but is this something new?), supporting my son through transition
and self-discovery, and as usual, trying to be everything to everyone and then some.
I am thankful … so, so thankful to the people who have shown the hell up and shown me immense love over the past few months. Whether you have gifted me with your words, your time, and/or treasured and thoughtful material objects, I couldn’t possibly be more thankful. My family (Mama Betty and Chris), my furballs, my honey, my team – which includes all of my ATS kindred spirits (in particular, my core team of Rick, Gina, Janice, Brittany and Kim and then an abundant crew of field staff), and a few friends very worthy of mention (Christina, Diane, Hilary, Meredith, Heidi, Tanya, along with comments and posts from “Prue,” Jenny, Deanna, Tim, Patti, Cheryl and Carrie to name just a very few popping in my head) have truly pulled me through thus far.
I have a lot of work to do, and a lot of catch up to make to meet my goals. But as Diane reminded me in our call a few weeks ago, I need to repair myself first. I cannot function at the warp speed I’ve been pushing myself to maintain and I can’t do that just because some book or website or blog or Instagram tells me I need to #hustle. My wellness has suffered and I know what happens when I allow that. And it’s not pretty and certainly not social media “worthy.”
My struggle bus is chugging along, fueled by caffeine. First on my to do list … has to be me. Your regularly scheduled #caffeinatedadvocate will be back in action in due time. Pinky swear.
Abundant love to all.
Maybe I need to speak up for those in back of the room or those who, with all due respect to my fellow badasses, truly believe autism awareness is a fruitless effort.
Someone hand me a megaphone. Please.
A really big, obnoxious one that magnifies my voice for miles upon miles, from mountain top to mountain top, from sea to shining sea.
We are not … I repeat, for the 103,572,968th time since 2001, we are NOT. AWARE. ENOUGH. We are most certainly not aware enough and not demonstrating enough respect, empathy, or compassion to youth in transition and to adults. And we aren’t exercising a shred of common sense (and in some cases, common decency).
Why yes, I am bitter af today. Here’s the deal: you mess with my son, you’re messing with me, you’re messing with my global autism tribe of activists, advocates and their loved ones and I almost feel sorry for you.
Actually, I don’t.
It’s nearly the end of 2018, and in the past year and half, my family – specifically Christian – has experienced three (!) traumatizing incidents that quite frankly were:
Dear 40,
Hey, how YOU doin’?! You know, I wasn’t sure I was quite ready to meet you. Most days I still feel like I’m still the young single mama flailing in my 20’s trying to figure out this whole life thing out. Then again, there’s other days that I feel and look like I’m approaching 50 (you know, like this morning … no pics needed, this not so fresh face wouldn’t be pretty). Eh, whatev. Here I am, and here you are, and here we are, and, here we go.
Being 40 in 2018 isn’t easy. I shared a picture on Facebook yesterday that ignited this post that has been brewing in my head for weeks now upon entering this new decade and entering into “Self-Care September.” Brene Brown, a favorite author and speaker of mine posted a picture that said, “it takes courage to rest and play in a culture where exhaustion is seen as a status symbol.”
It sure does. Because in 2018, you’re not supposed to actually to rest and act upon self-care, right?! But boy oh boy, are you supposed to promote it! You talk about it on your Facebook page with hundreds of thousands of likes, on your 450K followed Instagram feed with a picture of you running in a field of flowers, grabbing your perfectly coiffed hair and laughing as you wear a wispy shirt that gently drapes your shoulders with your collarbone protruding (you know, because you run a 5K at least twice a month so, hashtag fitmom hashtag badassrunner hashtag girlpower). You’re supposed to show off pictures throughout the day of your hustle and 20 hour a day grind, because you’re a “CEO of My Life and 6 Businesses/President of 3 Organizations/Mompreneur/Owner of 10 Groups/Author of 27 Books” etc. etc. etc. But then you post a photo on the weekend of your feet in cozy socks, holding a cup of coffee in an antique blue and white china cup in front of an HGTV worthy fireplace and talk about your (short-lived) self-care (because tomorrow the grind starts once again). Right? I said am I right? Isn’t that how life is done in 2018?
I haven’t blogged recently. I haven’t blogged much at all this year. I haven’t written another damn word for the book that lives in my head. I haven’t picked a logo for my little “brand.” I don’t have a side business at the moment nor do I know that I’d ever care to. And I know now, that it is ok. I’m allowed to be tired and I don’t have to smile and pose with my DD all the time (of course, now and then is totally adorbs).
But 40, finding you was a gift in and of itself. Already, you have allowed me to reflect on what has taken place during the first four decades of my life. There have been countless blessings (way too many to name), and there has also been great devastation, fear and loss. Those, too, were blessings that I am comfortable drawing attention to – including the loss of those closest to me, surviving divorce, triumphing over being sexually attacked as a teen, finally overcoming disordered eating, coping with mental illness within myself and my family, navigating the often confusing world of autism (launched into it head first after being falsely accused and arrested), struggling financially, and even pulling myself out of a deep dark place and ultimately deciding that my presence on this Earth was worth fighting for. These are all blessings, They have built me. They have grounded me. They have taken me on a journey that … has no destination.
There is no destination.
That, dear 40, is what you are showing me. Life is but a journey where you sometimes follow a path, you sometimes walk it with others, and sometimes you blaze your own trail.
But you don’t stop. There is NO … STOP. You pause, but you keep going. The destination doesn’t exist on this Earth. That comes much later, after our souls have departed.
I’ve seen the quote “life is a journey and not a destination” time and time again. I understand it now. I get it. I hear it. I see it. I feel it. I believe it.
I’m abundantly grateful for what is happening in my life right now – being asked back to the leadership team at Achieving True Self to take charge of support, engagement and development; Christian landing a new job with a caterer which places him in the field he wanted to be a part of; Mama Betty trying her best to make herself healthier; a boyfriend of almost 8 years who loves me for who I am at my core; home repairs and a new vehicle; being a part of community efforts including incredibly worthy fundraisers and speaking gigs (podcasts and presentations); and more. I’m truly grateful for who is still here in my most intimate circle which has dwindled over the years and thank those who are not for what they taught me (see Jay Shetty’s video about “who your true friends are” to learn the difference between your leaves, your branches and your roots … you can thank me later). I am just as grateful for my larger circle of overwhelming kind acquaintances who somehow still cheer me on and cheer me up along the way.
Please don’t get me wrong and misread what I’ve shared as jealousy or envy – because it by no means is. My point is that we need to do what is right for ourselves, not get caught up in the web of the comparison game, and never, ever compromise self-care and wellness. I’ll never do that again. It almost killed me in more ways than one. If you’re reading this and seeing me as a bitter aging Xennial … you don’t know me and you are welcome to exit stage left. I’m unapologetically, hands-down, just me and only me and, TDB (too damn bad … I’ll refrain from f-bombing) if you’re not ok with it. I am. That’s what matters.
There is no destination … only the journey. I hope that my readers hear this obnoxiously loud and clear.
There’s a bucket list in my head – maybe one day it’ll be a blog, a social media post, or even part of that book (a living, breathing story with excerpts currently share during personal interactions in my daily work which I am thriving on at the present time) – but for now, there it shall stay.
40, and Self-Care September, here I am. There is no destination, 40 – you are right. We shall just keep sprinting and jumping, with plenty of self-care pauses as we travel. Let’s go, baby. Xoxo.
Your once-reluctant, but now enthusiastic partner-in-crime,
Cathy
Overdue. Way overdue. Yes, I know.
I’ve seen a quite a few friends and acquaintances whose blogs I follow take somewhat of a hiatus for a few months. I fell into that category, too. However, I’m unapologetically me and I know that I have nothing to say I’m sorry for. I’m far from perfect. I’m not so perfectly imperfect, and I’m grateful for being so.
***
As many of you have seen from my social media posts over the last two weeks, I’m in the midst of another professional transition. I’ve shed tears, I’ve had many laughs, and my heart is bursting with gratitude for what lies ahead as I honestly and wholeheartedly “achieve my truest self.” More on that another day and another time. That’s not the purpose of this blog.
I’ve taken on a lot (a loooooooooooooot) this past month, maybe a little much, but these are callings I have chosen to answer just the same.
If you follow or have friended me on Facebook, you’ll see that I have made several posts about a family in Fayette County that has been enduring heartbreaking circumstances for quite some time. Over the course of a few months, I watched the posts increase for this mother’s 10+ MLM companies (sales have not been terribly successful in any of them), and for requests of $10-20 each day to cover costs for food for her children or for transportation to appointments.
(*The following information is being shared with permission and blessing.)
I have witnessed a hell of a lot of cyberbullying as people privately (which she has occasionally shared) and sadly publicly questioned the validity of her family’s situation, ranging from terrible accusations of drug use to childish name calling to even suggesting that maybe she go stand on the corner and strip if she’s so desperate.
This woman has a name, and I’m proud to call her a friend – a fellow warrior in the autism community. She’s not a user, a stripper, or a liar. Her name is Lisa Armstrong.
She has a husband, Keith, and three children, James (19 today), Kevin (13) and Jayla (12). All of them … I repeat, all of them … have a disabling condition.
Keith was injured on the job a while back and cannot work. The family has been fighting for disability payments for him … and for SSI payments their three children. Lisa has her own health issues and because she is so busy trying to care for everyone else, she struggles to take care of her own troubles. You see, all of the Armstrong children … I repeat … all of them, fall along the autism spectrum. Two of them are non-verbal and not toilet-trained.
They don’t have transportation aside from what the Medical Assistance Transportation Program (MATP) will take care of – and that only goes so far. That doesn’t take them to food banks, grocery stores, government offices, etc. They have no money for a vehicle or even bus passes. Bills are months behind, including an outstanding water bill.
How did it get this way, many have wondered? And how did they survive for so long? Their savior and rock, Lisa’s father-in-law was who took care of them all – provided money and advocacy until his sudden passing last September. No longer helping them along a difficult road, Lisa and Keith have had to try to fend for themselves, and have clearly struggled to do so. One thing that have not lost along the way however is the love and devotion to somehow surviving and finding footing to thrive for their children. They make it by the skin of their teeth – but this is not a way to live.
The items they have asked for are simply to give their children food, clean clothes, safe places to sleep and a clean home. The washer and rug scrubber are needed because the children have daily toileting accidents. What does Lisa do now, you might be asking yourself? She stands on swollen purple legs and feet and washes their sheets and blankets and clothes by hand in her kitchen sink. Furniture, toys and devices are needed because couches, chairs, iPads, tablets, toys and beds have been broken due to meltdowns and tantrumming behaviors. Originally asking me to list out just a few things to get by, I insisted that Lisa give me the whole story and list of what her family truly needs to find some sense of normalcy and stability.
I have created a public Google Document to track and edit donations for everything they are in need of, which you will find here. To make a monetary donation, Lisa has a PayPal account (which is her account linked to the MLM companies she is joined with).
The family also needs a lot of help when it comes to advocating for services and supports. Any resources, places and people are appreciated. So much work needs done, but I believe, I have hope, that they will find their way.
I have received an overwhelming number of messages regarding the Armstrong family – some genuinely wanting to know the back story, some asking how they can help, some who have asked “why you?” and why all of this effort, and others who sadly have called me a f*cking sucker because they believe I am being taken advantage of.
Let me stop “yinz” right there in your tracks.
Why me?
Because I know what it’s like to struggle.
I did not grow up in a rich home, and neither did my parents. My father and his siblings grew up extremely poor in a tiny house in Clairton, often wore torn used clothing and often went hungry. My mother, though better off than he was, was the only child to a secretary for the Office of the Blind and a painter for a manufacturing company. They didn’t take lavish vacations, drive flashy vehicles or live in a fancy house.
Growing up, my parents blessed me in every possible way with what they had, which was not much. Mama Betty (that’s what everyone calls her) gave up her teaching career to raise me while Dad took a job at the post office to make more money than he would teaching. They often had to beg my grandparents for help with bills, grocery money, or my back to school clothes (because I had Guess taste on a Walmart budget). We never took a vacation – EVER – as a family. We went to Kennywood, Conneaut Lake or Sandcastle with either money gifted from my grandparents or from Dad’s “found money” savings. If you saw my Facebook post a few weeks about coins on the ground, you have already seen me talk about “found money” a bit.
Dad was the king of “found money.” He would spend time after work – yes, after carrying mail all day long in all elements and then after stopping at the store – pacing sidewalks and parking lots looking for change on the ground. What he found, he would save. Oh how excited I would get when he found dollar bills or a handful of change in a payphone! Some of his change would be given to me on a piece of paper in the mornings after he left for work next to a piggy bank gifted to me from my Godfather and his wife. “Piggy Poems” – the antics of Miss Piggy and Merry Mouse, her imaginary woodsy friend – were the start to my day. They made me happy. I recently found some of those old poems cleaning out the garage. I cried happy tears, because they took me back to a humbling time that have shaped who I am today.
Because I know how important it is to give endlessly and without question.
My parents and my grandparents instilled gratitude in me, and they also instilled the importance of giving. I have been taught to give to others before giving to myself, perhaps to a fault (ok, definitely to a fault as self-care has been a physical and emotional struggle throughout my life). Heaven knows we’ve given to people who don’t appreciate what we’ve done, or maybe some who others would say didn’t deserve our help. We have also given to many deserving people who need us because no one else stepped up. We’ve given things as simple as crackers and a can of “pop” to furniture and money. We’ve given the shirts off of our backs (figuratively and literally).
Why us? Why NOT us?!
I’m the Caffeinated Advocate, that’s why.
I don’t need to explain myself. I am who I am, and I am proud of the gladiator I have chosen to become, and continue to be. I have fought for my recovery from many demons, I have fought for my son, I have fought for my family, and I have fought for communities I love. I fight for people. People matter, after all. Even if I found out tomorrow I was being taken advantage of, I would know that I my actions were made out of love and kindness.
If you have items you are tossing aside, or want to give to the Armstrong family in some way, please view the Google Document I linked to above, or make a donation.
Feeling inspired and generous? Continue to pay it forward. Give a water bottle to the mailman on a hot day. Give your sandwich to the homeless man who hasn’t showered in weeks you pass at lunch walking back to your air conditioned office. Buy coffee for the person behind you at Dunkin’ Donuts. Pay for the pencils and paper that a teacher is buying for children in her classroom because she doesn’t have a supply budget. Cut the grass for the elderly man up the street who is paying someone probably way too much out of his retirement check to do it.
Go. Just … go. Go do something. Anything. Do it now. Don’t question it – do it. We were put on this planet to bless others. At least, that’s how I was raised and I am so grateful that I was.
Give. Give. Give some more.
I’ll say this again (and if you’re sick of hearing me say it on social media, well that’s just too damn bad): I am nothing and no one special in the words of Bill Stillman, an autistic adult who is an author, advocate, medium and true giver. I am simply a crazy overly caffeinated woman who advocates to make this world a better place before she leaves it than when she came into it.
I’m just me.
I’m just a mailman’s daughter.
Catherine Hughes 