From Behind Bars to Behind Communities – Our Beginning

Tomorrow is “the anniversary.” Seventeen years have passed.

To this day, I still remember each every moment that occurred on April 19, 2001 (and the entire weekend that followed). I remember wearing an orange polo shirt, khakis, brown suede boots and a matching jacket from Wilsons Leather where at the time, I worked as an assistant manager. I was due to report to my Century III store at 5pm that evening after Christian’s appointment with his endocrinologist and grabbing a quick bite to eat before dropping everyone off and heading to my shift.

This day by no means played out as it was “supposed to.” At the appointment, I was told that my son “wasn’t normal” and that something was “wrong … very wrong.”

The day didn’t go as it was “supposed to.”

Or … did it?

As promised, for the first time on The Caffeinated Advocate, I am sharing the excerpts from my 2008 speech delivered at a walk kickoff luncheon at Heinz Field in front of over 700 people.


Ralph Waldo Emerson tells us, “The definition of success — to laugh much; to win respect of intelligent persons and the affections of children; to earn the approbation of honest critics and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give one’s self; to leave the world a little better, whether by a healthy child, a garden patch, or a redeemed social condition; to have played and laughed with enthusiasm, and sung with exultation; to know even one life has breathed easier because you have lived — this is to have succeeded.”

Winning the affections of children, redeeming a social condition, finding the best in others, knowing one life breathed easier because we have lived. These are just some of the many successes of parents to children on the autism spectrum. We are warriors, drafted into an army for a fight for which we were not prepared. I was, and still am, one of those warriors – an “autism mom” as we in the autism community call ourselves. We have achieved great success in our personal journey amidst the autism spectrum, but it certainly did not come without a price.

In 2001, I, like many of you sitting in front of me, knew something wasn’t right with my child. He screamed for 14-16 hours a day, banged his head uncontrollably, did not play with other children (in fact, he ran in fear of them), inappropriately played with toys, wouldn’t eat more than five different foods, wore only certain clothes, and tantrummed worse than any child I had ever encountered.

“Call the CDU, no matter what your pediatrician says,” our endocrinologist told us at a checkup on April 19, 2001. “You have no time to waste. This isn’t ADHD. Something is wrong with this boy – very wrong.”

I never made it home that afternoon to place the phone call.

“Something is wrong.” Oh, how that dreaded phrase that so many of us have heard echoed in my head as we traveled to a local establishment to attempt to eat a meal. Christian was throwing himself onto the floor, screaming, crying, throwing utensils and kicking the high chair. Dinner was no use, I thought, so I attempted to pick Christian up to take him to the car. I didn’t want to disturb the other patrons, plus I was obviously frustrated and embarrassed by my son’s wild display. As I tried to carry him, he fell through my arms while shrieking and biting me.

As I placed him in the car, the manager of the restaurant ran outside after me.

“CHILD ABUSER!” she screamed.

“Excuse me? I’m trying to calm my son and not disturb your guests. She continued to scream at me – “You don’t deserve that child! You are a terrible mother!” I was in tears at this point and begged her to leave me alone.

Exhausted and saddened, I sat in the car while I played Christian’s Mickey Mouse tape for the umpteenth time. All of a sudden, the sounds of “This Old Man” were interrupted by a loud noise.

They were sirens.

The sirens came from three police cars who suddenly surrounded my vehicle. “Step out of the car and put your hands behind your back. Let’s GO!”

Before I could blink an eye, I was in handcuffs and my child was taken from my arms.

I was shoved into a jail cell and I wasn’t even given my rights. My parents pleaded my case, showing the officers that there was not a physical mark on Christian. Their pleas fell on deaf ears, as I was charged with terroristic threats (for raising my voice), endangering the welfare of a minor, and simple assault on my own son. I screamed for my son, hoping he could hear my voice and find comfort. They slammed the heavy steel door of the cell, and that was the last I heard my little boy’s cries.

A caseworker from Children, Youth and Families came in to inform me that I no longer had custody of my son. I begged them to send Christian home with my parents. They said no, since if I was released, I could return home to “hurt him.”

I was told I was a “threat to my son and a threat to society.”

Later than evening, I was transported to the county prison, where I was placed in a holding cell with drug abusers, prostitutes, and other like offenders. I curled up in a fetal position on the floor for hours, laying on a dirty, cold floor in a heap of tears. I was denied bail, and transferred to another cell.

Fast forward four days, I was released. Thanks to my family and friends, we discovered an incredible lawyer who, though expensive, got results quickly. She was extremely compassionate and worked wonders for our case.

At the very first child and family court hearing, I was told what I had prayed to hear:

“You are not the problem, Catherine. Your doctor has clearly not supported you. Something is wrong, very wrong, with your son. He has some sort of delay, I am sure. I hereby order a psychological evaluation two weeks from today.”

Thankfully, I discovered a psychologist who took us in for an appointment within one week. He and his colleague listened to our story, and were dumbfounded.

Within one hour of observation, Dr. Newman led me back to the room, and he and his caseworker both took me by each hand and said, “You are NOT the cause of your child’s problems. I am so sorry to tell you this, but your child has Pervasive Developmental Disorder.” “What?” I asked. “He’s going to be ok though, right? He’ll come out of this?”

Dr. Newman said gently, “Cathy, your son has a form of autism.”


This is where it all began.

Both Christian and I have accomplished feats that, seventeen years ago, I would have never imagined. At that time, I had little hope for either of us and I feared the future.

Since that day, we have continued to move mountains, we have defied odds, and though there have been many dips in our story there have also been moments of blinding bright light.

My son, who at one time could not speak beyond a babble of unintelligible speech, left a legacy at his school prior to graduation in 2016 when he said: “I want to be remembered as the kid who had autism, because no one knows how hard I fought to get here. Don’t ever let a disability hold you back. I want to give back to my community and continue to help others.” Though currently moving through more hurdles, he hasn’t given up. He never has. He is a self-advocate, and for that, my pride is simply immeasurable.

I have spent 15 years both personally and professionally supporting communities. I am humbled by each and every story shared with me by individuals and their families, as well as their educators, clinicians and supporters and my colleagues. I, in turn, will always be grounded knowing that because I share pieces of our story, others may pull strength and feel less alone. I don’t EVER want ANYONE to feel ALONE.

I am proud to give back what has so graciously been given to us. We are abundantly grateful. We can never, ever thank our beloved “village” nearly enough for the parts they have played along the way and for contributions we couldn’t possibly ever repay. We love you all more than words are able to adequately express.

Someday, Imprisoned No More will be released and a full history shall be told. Until then, we are a living, breathing book in progress.

As KDKA’s Larry Richert said following my speech a decade ago, “World, you had better watch out for this jailbird mom. She’s clearly not done yet.”

Not by a long shot, Larry. Not a chance.

I’m Exhaustipated

Have any of you seen that meme on social media yet? Apparently, it’s the term that was created to indicate that you’re “too tired to give a shit.”  It gave me a good laugh, and it kind of speaks to how I’ve felt these past several weeks.

Ok, so maybe I don’t completely not give a shit, but I would say I’m giving less of a shit out of sheer exhaustion. I haven’t done much with my book outline, I never picked a logo for a future web home for this blog (and whatever else may come down the pipeline), and I just haven’t felt like blogging.

Blogging for likes and loves and follows and numbers after ending your post with 70 hashtags isn’t healthy, isn’t productive, and honestly … I would challenge that many people DON’T give a shit about posts like that. You blog when you have something to say that is of value to an audience or provides you with some sort of release. Tonight’s post I’m pretty sure will serve both purposes, because I know I’m not at all alone with my exhaustipatedness (ok, that’s not a word … and I’m too tired to give a shit about that, either).

My work and my personal life, though there have certainly been bright spots, have taken a lot out of me for a few months. And as usual, I enter my superhero / warrior / gladiator /caffeinated badass advocate mode complete with my DD beverage of choice, because #cathyrunsondunkin. Suck it up buttercup, just keep swimming and smile while you’re doing it because eventually, you make it after you fake it. My friends, it’s pushing through tough moments that will propel you, and you can then look back and say “hmph, I/we made it through this/that, I’ve/we’ve made it through MUCH worse, and I’ll/we’ll do it all again tomorrow.” I’m speaking from an overloaded nutshell of VAST experience.

So, where do I go from here? Welp, I need to do a few things – and maybe some (many) of you floating in cyberspace will relate and find a teaspoonful of comfort in my musings …

1) As Gary John Bishop says, I simply need to unf*ck myself. Say what?! …

In other words, I need to stay out of my own way and not let self-doubt, anxiety, or negative thoughts hold me back. The only person who can pull me out of any doldrums is the woman looking back at me in the bathroom mirror. And sometimes, you need to tell your inner voice to pipe down. The haunting “am I good enough?” question pops into my head more frequently that I truly care to admit, and I allowed that to destroy me for decades in so many ways.

2) I need to continue to let go of things I cannot (and should not) control. To give a strong recent example …

As I shared on social media and in my previous blog, my son with autism is no longer employed. That was a hard pill to swallow even though I can understand the “how” and the “why.” A silver lining was that he actually was not fired, and thus had the opportunity to put in a resignation instead alongside his job coach. Christian has been so unbelievably proactive that it’s mind blowing. He’s met with his job coach three times and has a fourth appointment next week to take his updated resume to a few employers from a massive list he researched and created. He saw his OVR counselor on Friday. He’s eating better, staying hydrated, and working out with the neighbors almost 5 days a week. He sees his therapist regularly. He saw his psychiatrist and made an informed decision about his current regime. He’s … he’s adulting. And diagnosis or not, that’s tough for me sometimes, just like it is for ANY parent. We want to swoop in and fix things that are hard for our children. Mama Betty wants to swoop in and take away my pain too sometimes, and I’m about to enter … (gulp) my forties this summer. There’s a significant difference between being there to provide love and support and trying to control things that are just not controllable, easily fixable, or that just aren’t mine to control.

3) Self-care, self-care, self-care.

Anyone (even warrior parents) enduring their worst struggles who says to me “self-care is impossible” is instantly met with a “nope! It doesn’t work that way. The mask goes on YOU first or you are no good to one other person.” Now … do I practice what I preach? Sometimes. I’ve certainly made progress, but when stressors creep in, I’m at risk for falling off the wagon. A multitude of struggles since childhood have put me into a 24/7/365 caretaker mode and that is not an easy persona to set aside. It’s all I know. It’s also been my career since 2003.

I help my family. I help my friends. I help other parents. I help my team. I help individuals like my son. I help I help I help … oh … wait a sec while I grab a mirror. Oh, hi there self. You look like shit today, by the way.

Sound familiar? I know that when I take poor care of myself, those around me can tell not too long thereafter.

Self-care is not just “the sexy thing to do in 2018,” folks. It is essential to functioning. Don’t tell me you can’t do it, and you know what? I’ll do the same. Though I had some errand running and cleaning to catch up on, I took an hour to myself this afternoon to walk on a local trail listening to a relaxing Pandora station to catch some rays and self-reflect. This morning, I put my curtains into the washer after vacuuming and then went to have my nails refilled. Some days it’s hard to find two hours. Some days it feels like I can’t find two minutes. I know for many of you reading this, you’ll tell me that you don’t have any options. Maybe your options are limited. But I urge you – truly I beg you – find the time. Do SOMETHING for yourself each day. You need it, and you deserve it.

So all that being said, we’re hanging in there and surviving, folks. It’s what we Tomko’s do, as my relatives would say. We’ve been through so much worse, and we’ve survived all of those bad days and are here to tell about them.

Speaking of worse, I’ve been asked (as I am every year many times) if and when I’ll be sharing the excerpt of “our story” during the month of April. That annual request humbles me to no end. I am forever comforted knowing that by sharing our story, some will find it grounding, others will pull strength, and other people will feel less alone. The answer is a resounding yes. I will be sharing the excerpt of my speech delivered in 2008 (ten years ago … wow) on or around April 19th, which is the anniversary of the horrifying incident that changed our lives forever.

For now, I’m going to bring this post to a close (as I think you get the gist of what I’m saying) so I can … yup, you guessed it, practice some self-care and actually get some much needed rest. There may or may not be a game of Candy Crush or Wordscapes in my future. Don’t judge.

Wishing you all much love, peace, and relaxation 💓

No, We Are Not Aware Enough, and I’m Not Sorry to Say It

I have many friends, acquaintances, colleagues who will agree with people whom I’ve never met or will ever meet, that say “we don’t need autism awareness for April, we need action! We need acceptance! Stop the awareness!”

Hmph. Mmm-kay.

Stop what you’re doing. Stop talking. Pull up a chair, grab some coffee (and if you would be so kind, share some with me because I need plenty more after the next dip in our roller coaster), and just … LISTEN. Oh, and bring me some cream and sugar, because I don’t take mine black.

Awareness, by definition, is “the state or condition of being aware; having knowledge; consciousness.” For hundreds of thousands of people, their awareness of conditions and causes ends with being in a state of consciousness.


Just stop. I will confidently, completely and unapologetically call bullshit.

Our world and its communities are NOT fully aware. They do not understand the full spectrum and the ups and downs of individuals, of their families, and of those who educate, support or care for them. One cannot just read articles, blogs, a few memes, watch a couple of episodes of The Good Doctor or even know one or two stories to “get it.” Even parents and caregivers, educators, and professionals across the field (even me) cannot fully grasp the whole picture. That picture is always changing and evolving every minute of every day. Opportunities forever exist to learn and grow, and we need to hear more stories and more journeys. More importantly, we need to listen to them. Not just hear them, but to listen to them, to process them, and then take action.

It starts with ongoing awareness that can never stop. We cannot accept and act upon what we don’t understand and cannot expect others to do the same. People don’t know what they don’t know.

Here’s what I know in this moment:

This week, my son with autism lost his job. Specifics and nitty-gritty details are not of importance and honestly, it is simply not my story to tell. That is my son’s and I will only share an overview with his permission out of respect for him. He worked there for almost ten months, and had many struggles along the way. He had a conflict with another employee in another area of his store that went unresolved to his satisfaction. However, he accepted a different position and chose to move forward with the support of a great job coach and management. He continued to work in a checkout line, occasionally placed in the express lane which increased anxiety as he felt pressured to move faster. There were also a few “bad apples” in the bunch who were consistently rude and short with him during his shifts. Though sadly commonplace and something he’s going to have to learn to cope with as we all do, it’s harder for him to brush the dirt off his shoulder and just keep going. Mistakes were made and feelings were triggered, which manifested behaviors and verbalizations that were hard to control. A few simple accommodations and a little extra kindness from others would have went a long way. Had that been the case, he’d be at work right now while I’m typing and he wouldn’t be home making his lunch and still struggling through the feelings of “what now? Will anyone ever want to hire me again? Am I a bad person? What is wrong with me?” As he worked for a popular disability employer in Pittsburgh, I’m so disappointed. My son is not blameless, but I could not be prouder of his accountability and his resilience. He may write a letter to the union so that next time (if and when there is a next time) that this location hires someone with autism or some sort of disability or difference that they will be … a little more AWARE … of what perhaps can be done even ever so slightly different to promote success.

So yes, we’re facing yet another hurdle which we need to – and will – find strength in and we will move through in our own way with our village. What blows my mind is the amount of hope he has finally found! He has HOPE! He posted on Facebook a few hours after he was let go, and he talked about of course being depressed, but how he can take this situation and make himself a better person. He talked about what he CAN do – find new work that makes him happy, focus on his health and use some extra time for exercise, and to better control himself in order to become the best version of himself that he can be. He is looking forward to what and who he can become rather than dwell on what he can’t change. He called his job coach within two hours. He called his therapist right after to make an appointment that evening.

That was the immediate action that my son with autism took after getting fired. For the love of all that is holy, how many of us without autism would have done the same thing?

I know what I did one year ago when I felt compelled to pack my shit and walk away from what at one point I referred to as my “dream job.” I drove to the closest coffee shop in the pouring rain after hysterically crying “see you later” to my now former colleague (but thankfully still dear friend) so I could wait for my son to finish his program that afternoon. I walked upstairs to a private room and cried for about three and a half hours into a peanut butter flavored latte (don’t knock it until you try it, yo). I called and texted a few people, sure, but I otherwise just sat and cried and grieved what at the time was a huge loss for me. Despite those horrible wrong doings that I faced as an employee and as personally as a mother and advocate activist, I couldn’t help but feel like I let my community and myself down. When I accepted that position, I lost friends and the respect of some who couldn’t believe I went to work for the organization. But for those who believed in me and knew what I wished to accomplish from the local chapter and upwards, a part of me was still mad at myself. I wondered if I should have fought even harder to be a change agent and make waves. So, I cried some more. A loooooot more.

But as I left that day to pick up Christian and then head home to finally start to piece together my “what next,” as cliche and corny as this sounds I saw the sun come out. I heard birds chirping. I felt a peace come over me and I was even more at ease with my decision. I knew I had many feelings to sort through but that I’d also have to hustle hard and quickly being the breadwinner for my household.

Don’t get me wrong, Christian cried too – oh believe me, he has cried. We both have. But, the show must go on. And he acted more swiftly than I.

This is just another excerpt of our story. How many is that now, 792?!

Sometimes, I wonder if this is where my writer’s block comes from in finally pulling that best-seller out of my head and putting it on paper. Imprisoned No More is an ever moving target and new chapters will emerge. But some chapters from our past are locked in my head and I just can’t seem to get them out.

But our story is important. Every story is important. And that’s why I need to find a way to finally tell it, and in its entirety. And I need to read and hear the stories of others to make ME more aware of what others experience. Don’t ever think your story doesn’t matter. Your story and experience with autism (with anything, really!) isn’t just “another autism parent story.” Christian’s story isn’t just “another autism story.” Only you can tell your story, just like only I can tell mine. Our stories can bless others. Our stories create ripples and waves. Our stories can change the world.

Our stories make people AWARE. When they are aware, they can understand. When they understand, they can take action.

This month, I pledge to continue to do my part – as I am committed to doing the other 11 months of the year – to raise awareness, to educate others, to increase empathy, and to create positive change. I won’t have it any other way.

For those who have messaged me as they do every year asking “will you be posting your speech again from 2008? Will you tell your story again?” Without a doubt, you better believe it. This year is the 17th anniversary of the incident that forever altered our lives, and the 10th anniversary of delivering that speech to over 700 people at Heinz Field. I just commented on a parent post today where yet another mother was judged, the authorities called, and a child traumatized. Why the $%*& is this still happening in 2018?!

Because … we still need to raise awareness.

No, we are not aware enough. I’m not sorry to say it. Please join me in the mission to raise awareness, to educate others, to increase empathy, and to create positive change.

Take my hand. 

Are you with me?

Preparing for When the Bus Stops Coming

I am so grateful to the Autism Connection of Pennsylvania for including “Preparing for When the Bus Stops Coming” in their Spring 2018 Newsletter! A full and unedited version of this article, including some personal content that shares a touch more of more of my “why” (along with a powerful photo) and a bit more about the curriculum I promote in my role at Wesley Family Services is being shared this evening on my blog. I am truly blessed to serve in a role that allows me to continue to contribute to creating and encouraging positive change in our community to transform lives. 

There is incredible content throughout the newsletter, including the importance of donating locally and not jumping to national charities (and if you know me well, you know exactly who I am referring to and why) without doing your homework. Don’t miss your chance to read about their exciting happenings. The women at Autism Connection of PA never cease to motivate and inspire me. Read their news, drop them a line … and hey, a few well-deserved dollars if you are so inclined. Their work needs to continue. 

Without further adieu, I give to you …

Preparing for When the Bus Stops Coming:
A Need for Curriculum for Teaching Hygiene, Sexuality and Healthy Social Relationships to Individuals with Autism

As a mother to a 20 year old on the autism spectrum and a professional blessed to support this community for over 15 years, I am anxious to share knowledge, advice and a valuable curriculum that can empower caregivers, educators, clinicians and self-advocates. The picture shared above is a photo snapped the day my son graduated from high school. Ecstatic that he achieved high honors and was preparing for a post-secondary program, I was also petrified that he wasn’t ready in every way for what was to come.

After all, though in the evening ahead he would walk in his cap and gown, this was also the day that the bus stopped coming.

After attending both a community college campus for a shortened semester and vocational program last spring that didn’t meet his needs nor his preferences, my son now works part time as a cashier. He still struggles with valuing self-care, understanding the changes his body has moved through during adolescence, and effective social interaction. These are struggles commonly faced by people with autism. We can overcome them, together.

Wesley K-8 and High Schools (part of Wesley Family Services) in collaboration with Dr. Lawrence Sutton, a Pittsburgh psychologist who has focused decades of practice developing social, vocational, and relationship supports for individuals with autism, intellectual disabilities and emotional disturbance developed a curriculum in 2015 to address these critical issues.

The Healthy Relationships Curriculum engages students and young adults through 37 lessons accompanied by over 35 videos (soon to be over 50 thanks to recent grant funding awarded to our team) across three units. Progress is measured by pre and post testing, and visual aids along with home supplements for families accompany the lesson binder for facilitators and its video portal.

By preparing adolescents and young adults with disabilities to practice effective hygiene and self-care, understand the human body’s physical and emotional changes during their transition years and initiate and maintain healthy social relationships across multiple domains to promote generalization, we can set them up for success in post-secondary learning institutions, vocational environments, and ultimately independent living settings.

There is deep value in introducing such lessons at an early age to build upon skills each year. It is essential for truly any young adult to be armed with information to pursue and sustain healthy – and safe – relationships to thrive in adulthood, but individuals with autism especially so in order to grow into strong self-advocates. Individuals like my son need – and deserve – to absorb and use this information to promote autonomy but also to prevent victimization and/or crime.

Each member of our team has first-hand experience or knowledge that has led to the creation, implementation, and expansion of the Healthy Relationships Curriculum. To request a packet with sample lessons, ask a general question or schedule a meeting with our team, visit and click “Contact” in the upper right corner.

I’m a Writer. Daddy Said So.

It’s time.

I don’t know how I’m going to make it happen, I don’t know how I’m going to finish it, but … it’s time.

A little over a month ago, I finally launched The Caffeinated Advocate after saying for many years, “you know, I should run a blog.”

Years ago, I announced in front of over 700 people at the kickoff luncheon at Heinz Field for what was then known Pittsburgh’s “Walk Now for Autism” that I would be writing a book “someday” that shared our story. Thousands across the community know pieces of our story, including the devastating incident that led to Christian receiving his diagnosis of autism. I started writing a few chapters years ago. When I reached my seventh chapter, a few things happened:

1) I froze, because I reached the point where I had to relive April 2001, pouring buckets of salt into old and deep wounds that were very slow to heal.

2) A week later, I lost everything I had spent months writing because my portable drive was damaged and I had failed to backup the files to a hard drive (at the time, cloud computing wasn’t as much of “a thing”).

3) I decided that it wasn’t my time to write and publish a book, not only because I wasn’t ready to face the pain of 2001 but also because I felt like there was much more story to unfold.

Well, point three was certainly correct. So much has happened in the past ten years, and I’m glad I didn’t move forward at that time with sharing and publishing our story. Both Christian and I have evolved and are light years from where we were back then. I believe my book can and will have much more substance given where we both stand in 2018.


Some of my views have changed over the years since that powerful speech was delivered. We have both blossomed in extraordinary ways despite many unbelievable struggles.

Back then …I guess it wasn’t time.

In early 2009, my father was slowly (very slowly and very painfully) dying of many ailments. Don’t bother asking me what he died from, because there are at least six illnesses on his death certificate and who knows what else was running rampant in that poor body at the time of his passing. I remember a conversation with him one March evening where he asked me how my book was coming along. I told him “I can’t even get past Chapter Two!” I told him it was hard to make time to write, and that I wasn’t sure that I was qualified or ready to create a book. I did promise him though that someday, it would happen.

“You’re a writer, Kissie.”

(Yes, my childhood nickname was Kissie. Don’t ask and don’t judge.)

I remembered those words when I delivered Dad’s eulogy on July 18, 2009. I said that my Daddy told me I was writer, and I prayed that day that I didn’t disappoint as a speaker in front of a rather large group of people who gathered to mourn our loss.

Daddy said I’m a writer, and fathers don’t lie to their little girls. Well, they shouldn’t, anyhow.

In my heart, I’ve always been a writer. I’ve been told countless times that I am a good writer, a passionate writer, and a powerful writer. I come by the bug naturally having two parents who taught college level English classes (and one of whom enjoyed writing poetry, my sweet Daddy).

It’s time.

In my thirties, I set a few general goals for myself in terms of both deep personal recovery and strong professional growth. One of those goals was to write our story before my 40th birthday. Ok, so that might not happen. It’s March 13th, and August 23rd isn’t terribly far off. But goals can be adjusted and steps can be taken to propel forward. I just need to take that first step again.

Begin anywhere.

I do still have a chapter list, old speeches, and community presentations saved that can help me start to piece something together. The finished product may not be ready by August 2018. Oh hell, it might not be out by August 2019. But the only way to make progress is to … go. Always go – that’s what an old friend used to tell me.

It’s time.

Imprisoned No More – A Mother and Son’s Story of Recovery and Resilience

To be continued. I don’t lie to my Daddy.

Yes, We Do Need Inclusive and Exclusive Events – CHOICE MATTERS

The following article making its round through social media has me puzzled and quite frankly frustrated “#asf”:

Nope, nope, and nope. It’s a nope from me, folks. 👎👎

I’ve been commenting left and right on this article, so … what do you know, it inspired a post. Funny how that happens, eh? (Or not.)

Forcing an individual and/or family to choose any sort of placement, provider or environment is not and has never been acceptable to me. Quite frankly, I find it ironic when advocates push for one means or the other and justify such by saying “it is in their best interests.” But, is it always?

No. It doesn’t work that way. We don’t know everyone’s story. We shouldn’t make up other people’s minds before they have the opportunity to decide what is the best fit. It is unacceptable to limit choice. When you limit choice, you in turn immediately disrespect someone’s opportunity to MAKE a choice, even though you may have the very best of intentions! 

Limiting and forcing choice is not being respectful to my son, not giving him the space to tell the world where he wants to be at any given time, and not giving him the chance to use his voice. He has worked damn hard since his diagnosis of PDDNOS at three years old to discover words and how to use them to convey his feelings, his wants and his needs. 

Let me share a shining example. At age 13, Christian was transitioning from junior high to the Freshman Academy in our district. He was enrolled at the time in their social skills group, because … well, HELLO!?!?! My district was willing to host a social skills group and I didn’t have to produce a rabbit’s foot, the hair off of a witch’s chin and $2 million dollars to have it written in to his IEP! DUH. Of course I told him to attend! 

Before the end of the school year, we of course held our annual IEP meeting to make revisions. For the first time ever, Christian asked to attend the meeting. Prior to that academic year, having a meeting with so many administrators and teachers present would make him anxious and therefore he was not present. This year was different. He said he wanted to talk about his goals and plans for the next year, including the group.“I don’t want to attend anymore, Ms. P.” he said. Said school psychologist, LEA and I widened our eyes. Mama Bear Cathy, the know it all bad ass look out for me with my Wrights Law binder warrior extraordinaire, was dying inside. What was he saying?!?! What was he thinking?!?! 

“I don’t like the group. I don’t have anything in common with the four kids besides having autism. And Joey (*name changed), well, I don’t like him PERIOD! I like being with all the other kids, and I like being with kids who just have autism like me – but just not these kids. I would like to withdraw, please.

Our eyes were opened, albeit with tears stinging. All of us learned a valuable lesson that day, and it’s a day and a lesson I’ve never forgotten. That day was the first time he strongly advocated for a desired outcome.

Throughout his high school experience, he attended both inclusive and exclusive events. He attended support groups and social outings just for people with autism so he could meet other young guys and gals who understood the ups and downs of the spectrum, as well as worked part-time hours in a restaurant and went to his junior and senior proms (with two gorgeous and sweet young ladies!). And, if I may brag for a moment, he graduated with high honors, two scholarships, and multiple outstanding student awards. Choices he has made have brought him to where he is today – not without struggle, but he is living his life the way he wants to and I count myself fortunate to be a part of guiding him while not making choices for him as he moves into adulthood.

In my eyes, full inclusion and being an advocate activist means that my now 20YO son gets to choose, himself, where he’s comfortable and use his voice to announce that choice and take action. He may choose inclusive opportunities, he may choose exclusive opportunities so he can meet others who share a commonality with him, or he may choose to attend a mix of events to bring joy and fulfillment to his life. And he has proudly made choices in both regards. He’s had great experiences, from autism meet ups to attending two inclusive high school proms. Inclusive and exclusive opportunities allow him to learn, to grow and make his own memories from places HE CHOOSES to go.

Am I an advocate for inclusive opportunities? Oh, you better believe it. People with disabilities, diagnoses and differences have fought hard for decades for opportunities in schools, workplace settings and our community. Do NOT twist my words. However, to take away the choice and the opportunity (which for some, is the only opportunity they may feel they have) because we think these events aren’t needed simply because they have “the right to inclusion” is just wrong. They have the RIGHT. They also have the RIGHT to make a CHOICE.

Presume. Competence.

What gives you the right to make choices for everyone else? What gives me the right to choose? Why are we limiting opportunities?

I’ve seen the smiles and heard the laughs from individuals with disabilities who clearly enjoy events like “A Night to Shine.” They are happy. Isn’t that what we want – for our loved ones to be happy? I know I for one, absolutely do.

People matter. And so does choice. It isn’t our right to take choice away. Both inclusive and exclusive opportunities are needed. We have room for both.


What Would Cathy Do?

Well, that depends on the day of the week, the hour, maybe in the moment that you ask. If you look closely at my now makeup-free face, I’m a little red in the cheeks and eyes. I didn’t have time to hit Planet Fitness tonight since Chris needed picked up at 8pm, so I took a brisk walk outside instead. To be honest, walking and losing myself in music, lyrics, and my surroundings has always been healing for me so this evening, it was the better option. Tonight’s chilly air and darkness numbed me and lessened other distractions, and it allowed me time to process what I’m feeling, and feeling so deeply.

Two conversations today truly grounded me today, and I needed it as my day became increasingly difficult as it continued on. I shared one of them across social media, with a screenshot of the message I received. It was from a former colleague who shared that she needed to have one of “those talks” with a family. It’s the talk that many folks already immersed in the autism community often fear having with a close friend or family member. She said that her mantra today was “What would Cathy do?” and she thanked me for being an inspiration. What you don’t know is that this same woman who works in the field (and tirelessly) to enhance the lives of young people with a diagnosis also has a little boy and an infant girl who has spent the first months of her premature existence fighting to stay alive. I remember her being one of so, so, (SOOOOOOOOOOOOOOO many) who have said to me, “I just don’t know how you did it / do it.” If I posed that question to her, I think she would say, “I … just do.” I remember hearing that same simple statement years ago in a support group I co-facilitated, where the guest speaker was an author and mother of 7 … that’s right, 1-2-3-4-5-6-7 children all diagnosed on the spectrum. And I remember thinking to myself, “what the HELL kind of answer is that?”

We just … do.

The other conversation today came to me from a mother – who has 6 children along the spectrum – and identifies as being on the spectrum herself. She messaged me and shared a deeply moving article about well-intentioned parents and caregivers who sometimes do more harm than good in trying to change or shape behaviors that are occurring for a reason. It is a strong reminder of why treatment (most notably ABA) needs delivered in a manner that is solution-focused, passions and strengths-based, and grounded in actualizing potential across environments. Most importantly, we must always (ALWAYS) assume and presume competence.

This admittedly was difficult for me when we first entered treatment. I lost count of how many times I talked about Christian right in front of him, and was determined to change each and every behavior that I thought was “wrong” without always considering the antecedents. Over time, learning from team members and soon colleagues, I learned valuable lessons. I took those lessons with me into support groups, workshops, staff trainings, truly throughout my work so that I could not just be a “parent advocate” but truly an “autism advocate activist.”

“We aren’t broken,” she shared in her message to me this afternoon. I’m so grateful to be working within an organization today where my boss (whom I refer to as a leader, and if you know me well, you know I don’t use that term lightly) who is a strong proponent for this philosophy.

No, my son isn’t broken and he doesn’t need fixing. But even to this day, at 20YO and living as a young adult finding his place in this world, there are often situations that he encounters where I am chomping at the bit to jump in and fix them. In the past year, he’s struggled with two post-secondary programs (he’s out of both), passing his permit test (failed four times missing the same questions each time even though he passes the practice tests with 100% accuracy), improving his physical and mental health (we’ve been up and down the nutrition and psychotropic medication roller coaster), moving through a trauma that had to do with my swift departure from a job and organization that once meant the world to me, and sustaining part-time employment with a disability friendly employer. I’ve been there for him of course, but it is very difficult for me to wait for him to tell me how to support him and not to just jump in and send emails, make phone calls, fire off frantic texts and/or post on social media.

Read what I just said again, please: … it is difficult for me to wait from him to tell me how to support him. But, I need to. I owe him the respect he has earned.

Not everyone who has a diagnosis in the spectrum is able to advocate for themselves effectively, but my son to a far extent, is blessed to be able to do so. It has not been easy watching him being the primary actor on his own behalf, because he doesn’t always make the choice that seems most logical, most ideal, or that makes the most sense.

But … isn’t that what we ALL do? Don’t we all act in the moment the best way we know how, using the tools in our toolbox?

I have to respect his choices. They are his choices to make, and if he makes mistakes, they need to be his mistakes. They need to be his stepping stones to allow him to cross a fast-moving stream. Of course, I won’t ever let him go over the waterfall, but I have to let him try to cross on his own. I owe him that respect. I have to presume competence and allow him the space to grow.

A few years ago, I presented at the annual PA transition conference with my “bully free zone” office roomie. We delivered content entitled “Passing the Torch – Transferring the Advocacy Role.” She spoke as a clinician and educator, whereas I used my voice as someone who spent years supporting other families but also ironically as someone who was walking this path right alongside other students and families. I spoke firmly and passionately about the need for parents and caregivers to find the strength, and to allow their children, to the very best of their ability, to carry their own torch.

Tonight, as that cold air hit my face, tears ran down my cheek and stung my eyes. Some days, some nights, I just want that f*cking torch back. It’s my job as a gladiator mother to protect the cherub faced boy I gave birth to, isn’t it?

Chris is having a hell of a time trying to hold down his job, and it’s sure not for lack of trying. He’s given this his all and I’m so proud of his efforts. Ultimately, this may not be the right fit and of course that’s ok – something else will be. I sure as hell learned that last year, loud and abundantly clear.

But he’s hurting. He’s hurting, he’s anxious and making himself sick. I answered frantic texts from him off and on all day long while I tried to move through tasks and meetings, all with a smile on my face, and hearty laughs spewing from my caffeinated soul. Inside, I was hysterical and just wanted to give Chris a hug and tell him everything would be ok.

I cried for an hour. Oh hell, I’m crying now.

As I’m typing through tears and turning red again, I heard Chris on the phone in his room. He called his job coach to confirm that he would be coming tomorrow during his shift to help him sort all of this out. Together, they will determine whether he gives his current position another shot, or if it is simply time to move on and find something else.

He made that call. I didn’t. And what he is experiencing is fairly typical of any young adult trying to piece together their “what next,” isn’t it?

I’m not in gladiator mode 24/7/365. Not by a long shot. Sometimes, I need to put down my sword and cry, and process, and try to self-preserve in some way before figuring out where to head next. But I don’t take too long before I pick up the sword and use my own “tools” – tools that hundreds thousands of “Cathy’s” before me have instilled in me – to problem solve and find solutions. I identify resources, people and places that can help me and/or my family to propel forward even during a storm. But I’ve learned to show my problems that I *am* the storm and that I am in control. But every storm even with control has highs and lows, bringing both light rains and loud thunder with intense lightning. It’s all part of being raw and authentic. That’s how I roll – transparent and true. I will do anything for those dearest to me, and a community I love. I would lay down my life for my son.

I am weakly smiling as tonight’s thoughts ramble towards a close, just like I did in the photo taken about an hour ago. I have to keep going. That’s just what I do. That’s all I’ve ever known. I can’t, don’t and won’t give up or in. I’m not ok tonight, but I will be tomorrow. I’ve been through worse (oh, so much worse, we all have) and I’ll keep moving forward and so will Chris. Everything will fall into place, and in a year from now, I know I’ll look back on this night and realize the “why.”

Sob … or ugly cry.
Get back up.
Keep going.
Smile amongst the chaos.
Drink coffee (ok, maybe that wouldn’t be such a good idea at 9:30pm … )

That’s honestly what Cathy would do  – in that order, at least, tonight. I’m truly humbled that people find strength in both my vulnerability and our journey, and I am honored to serve others.

To The Cashier at Register 14

Hi there, cashier at Register 14. I don’t know you, but I’ve heard of you.

Yesterday, a parent who has walked alongside me through what has been quite a journey shared a Facebook post with me, and it was about you. A woman who is married to a successful medical professional, who runs his offices, made a comment about her experience in your checkout line. She was turned off by what I will assume was an intelligent conversation you were carrying on … by yourself. And she summed up her commentary at the end of her post with, “eek.”

Eek. Well, yeah … eek. Eek is right. She nailed it. That we agree on. That is where our commonality in this regard ends.

“Eek” was my first thought about a woman who has been exposed to children, teens and adults in her husband’s practice who have faced many challenges medically, physically, emotionally, mentally and spiritually to be so quick to judge someone else who behaves differently than she.

I don’t know you at all. I don’t know if you were muttering a thought or two to yourself, not knowing someone was listening. I don’t know if you needed to verbalize what was in your head because you had a need for the words to come out right at that moment and avoid panic. I don’t know if you were using self-talk as a coping mechanism to relieve anxiety during your busy day at the checkout. I don’t know if you were repeating the steps of a customer transaction to ensure that you don’t miss a beat and ensure stellar service that your customers deserve.

I don’t know you. And she doesn’t either. We don’t know your story.

Let me tell you mine. I’m the mother of a 20 year old with autism, and we have fought HARD, damn hard to reach the milestones that we have. Once a cherub faced little boy with less than 20 words in his vocabulary, self injurious behaviors, sensory dysfunction, limited social skills, and a slew of biomedical afflictions, my son proved the world wrong. He moved through several years of intensive interventions with a team of unstoppable teachers therapists doctors angels that changed his life. He became a self-advocate – an activist if you will – and graduated with high honors and two scholarships. He told his senior class he wanted to be remembered as the boy with autism who was bullied but overcame many obstacles, saying “none of you understand what I’ve been through.”

College and vocational training was too much for him at this stage of his life, so he’s currently working at Giant Eagle as a cashier – just like you. I have been told by his managers and other customers and friends that he is one of the most polite employees working in the front of the store! He is as thorough as can be, and makes every effort not to miss a detail. He often recites the steps to a transaction to make sure he processes payments correctly – oh, how he struggles with rainchecks and WIC checks! Sometimes, he gets really overwhelmed, and then he’s carrying on a full blown script as a means of calming his nerves. He’s been “scripting” since he acquired expressive language as a child. You know, admittedly sometimes I still get confused and often say “huh?!” or “what?!” when I hear him speaking aloud in his room or from our downstairs. I have to check myself and learn to wait until he says “Mom” or addresses me in some way so that I am not making him uncomfortable or interrupting his processing. He taught me that. My God, he has taught me so much.

Talking to yourself, to me, is not only a sign of intelligence, but is also pretty doggone common! I made a screenshot of the original post and shared my views on my personal Facebook page last night. After I read a string of replies complete with emojis of laughing faces and rolling eyes, I needed to speak out. The replies to me were from parents of children or their adult children who engage in self-talk (and I mean BOTH the children AND their parents) and one individual with Aspergers herself who runs her own successful medical practice said that she and her son on the spectrum talk to themselves frequently. I don’t know what medical needs you have, dear friend (may I call you a friend?) from Register 14, but I hope that when you’re in need of a caring physician, that you have the pleasure of being treated by this woman or someone as caring and accepting as she is to her patients.

I don’t know you, friend. I have no idea why you were talking to yourself. I don’t know your story and I likely never will. What I do know, is you deserve better than a callous, judgmental comment from a professional, wife and mother who identifies as a Christian that passes judgment on your actions. That’s middle school bullying behavior and it’s just unacceptable to me. Rather than have an adult conversation with me and discuss how we can all contribute to positive change in our world, spread love, and heighten awareness, she chose to block me. I can only pray that she thinks about what I said, and thinks twice before making a hurtful and offending comment like that on social media and reacting like a 7th grader. We can all do our part to practice compassion and empathy. Accept more, judge less, and be accountable for your choices. I’ve been “her” before, and have been called out on the carpet. I’ve learned a valuable lesson. I hope she does, too.

I don’t know you, but if I’m ever in your hometown and need to grab a loaf of bread and a roll of paper towels and some O.J., that I have the opportunity to choose Register 14 as my checkout line. You can talk to me if you want to. I’d love to know how your day is going, what your favorite food is, why you like your job – just a quick conversation between two human beings existing in this crazy world. And if you don’t want to talk, that’s ok too. I hope your self-chat helps you to complete my purchase, stay calm, or make you happy. Most of all, I want you to be happy.

I wish you peace, love, and abundant happiness.

Your friend,
The Caffeinated Advocate

Demystifying and Defining "Wraparound" and ABA

Tonight’s post is one of the many that are floating brewing (get it?! ok, I’ll see myself out for a moment) in my head. As an employee of a human service provider in Western Pennsylvania and as a veteran parent who’s been around the block and back a few times in the “system,” I see, and I am asked, the following questions quite frequently:

“What is wraparound?”

“What is BHRS?”

“What is ABA?”

“What is a BSC? Is that a BCBA?”

“Aren’t ABA and wraparound the same thing?”

Well, the Caffeinated Advocate is here to answer those questions for you and hopefully alleviate confusion that so many parents and caregivers newer to this process experience. I found myself in those shoes in mid 2001 when Christian received his diagnosis of autism (and that’s a story for a future unbelievably powerful and raw blog). I was given handouts and stapled catalogs with the mish mosh of ABCs of our new autism world, this ABA stuff and some kind of wraparound mumbo jumbo. And I hadnt a daggone clue what any of it meant.

I am eternally grateful for Jody, who was a social worker at UPMC Mercy who partnered alongside Dr. Newman, the psychologist who diagnosed Christian with PDDNOS. I called her the day after I went home with my stack of books and papers. I cried – and it was an ugly cry, an EARNED ugly cry – and begged her to explain this new process to me. I remember saying “I feel like I have to be a secretary and a scientist and a researcher and a teacher and a therapist and a case manager and a chaffeur and a warrior and and and … (activate ugly cry once again) I CAN’T DO ALL THIS!”

Praise God, I had her to hold my hand (and hand me tissues when in her presence) through the initial stages of accessing care for Christian. She helped me with making those calls to initiate all of the services that Christian needed to begin his treatment. She assisted me with calling Mon Valley Supports Coordination to obtain a case manager (and if you’re lucky enough to get Val Tkocs, you were sent an angel from the heavens), calling the AIU to schedule an evaluation for Project DART, scheduling an appointment with Dr. Scott Faber to evaluate genetic history and biomedical needs (now with Children’s Institute – and many of my readers are likely current clients or on his never-ending waiting list) … and securing this “wraparound thing.” You know what I’m talking about … I mean the TSS BSC MT BHRS ABA thing. Yeah, that.

As I accepted my new hats as described above, I became an internet night owl. I would eat, sleep and breathe webpages and forums and chat rooms. I felt like it was the only way to bring my son into our world. I knew there was a brilliant boy beyond those gorgeous eyes just waiting to pop out and show everyone what he was made of. Though he wasn’t toilet trained, ate maybe five foods, couldn’t speak in coherent sentences, lined up his toys, flickered ceiling lights and faucet handles, engaged in self injurious behaviors and so much more, he knew his ABCs, his 123s up to 100, every single shape known to man, scripted phrases and jingles from songs and shows and could direct any driver home from any location or direction (and to this day, he is still my human GPS / Google Map Ninja).

I made the call to our first of many providers and said “I need wraparound therapy for my son – you know, ABA.”

Fast forward to our first appointment, I was given a wealth of information, including a clear explanation of what wraparound was, and what ABA was. I learned that there was a definite distinction, and that wraparound is NOT a “therapy.” Say what?! After a few years of intensive services with many angels who became part of our family, I was compelled to give back some of what was so graciously given to me. I applied for my first job in the human services field. I became a parent liaison for a local BHRS (“wraparound” – yes, I’m getting to the meat and potatoes, stay with me!) provider and also provided them with some technical support. I was finally in a position where I could be the “Jody” on the other end of the line to provide a caring ear and to have the chance to clarify a process with loads of red tape and lots of frustration.

Allow me now to demystify these terms for you, and simply:

Wraparound is a process – not a program, not a therapy, not a modality. Wraparound is a process that unites a team of people who essentially “wrap around” the child. This often includes, and is not limited to:

   * parents or caregivers

   * siblings or other immediate family members involved with raising the child enrolled in care (which are some of those individuas referred to as “natural supports”)

   * clinicians from a service provider – including a masters level lead therapist who writes the treatment plan and program, and one or more bachelors level therapists to deliver the one on one therapy defined in the plan (I’m getting to that too)

   * a case manager (which in PA could be a resource coordinator or an administrative case manager)

   * early intervention staff (depending on the age at the time of service entry)

   * teachers

   * paraprofessionals

   * other agency personnel

Speaking of service providers, let’s move onto BHRS. BHRS stands for Behavioral Health Rehabilitation Services. These services are provided to children and teens from birth to 21. BHRS has often been nicknamed “the wraparound program,” as BHRS staff are often seen as leaders of the wraparound team. BHRS is a time-limited service, which at first, sounds scary to parents! I remember being told from the get-go that our staff wouldn’t be around forever. Back in those days, I was petrified and shuddered at the thought. I learned, and thus was able to teach in my “Supporting Families and Siblings” co-facilitated training for clinicians and agency leadership down the road in my next role as a director of family support services, that if the same BHRS staff were in my home for several years without a fade plan in place or without a plan to move onto different (lesser, where possible) levels of care, that my team was doing our family a disservice. The goal of any child’s BHRS team is to fade to natural community supports as soon as he or she is ready to do so. I often hear the argument that some children “may never be ready” for that fade. To that, my reply is that BHRS may not be the right service for them. BHRS was originally designed to address emotional or mental health issues. It was not designed to support individuals with autism. However, over time, the system evolved and it was recognized that co-morbidity in children with autism was common and needed addressed along with skill deficits, social communication barriers and neurological differences that prevented typical development. In the late 90’s as this system truly took off, there was also no “place” for children and teens with a spectrum diagnosis. Therefore, they flew around and around and landed on the BHRS pad regardless of co-morbidity. To this day, autism in many states, including PA, is still supported by BHRS and the wraparound process.

What is ABA, and where does it fall into this crazy downtown Yinzburgh like map? I’m going to keep this simple, even though I could go on for hours (no really, HOURS!). I truly want readers, especially who are parents and newer to all of this mass chaos, to have simple explanations that pave the way for basic understanding in order to move forward. I want to be your “Jody.”

ABA stands for Applied Behavior Analysis, which is a treatment modality (or type of therapeutic approach) often used for not only individuals with autism, but other developmental challenges and behavioral health diagnoses. If you attend Google University, you will likely still find some pages, articles, and blogs that accuse ABA of being the therapy that turns children into robots. It is important to understand – simply put – that ABA is a treatment modality that permits us to study behavior patterns and to then change and shape behaviors of social significance. ABA allows us to address such areas as:

   * social skills
   * communication
   * self help skills or activities of daily living (ADLs, like dressing, toileting, eating, hygiene)
   * fine motor skills
   * gross motor skills
   * reading and some pre-academics

A generic, broad goal of ABA is to achieve generalization across environments. This means a child or teen demonstrates mastery of skills in the home, school, daycare, community setting, or vocational setting. The practice of ABA uses data collected to assess progress and regression.

In PA, a BSC, or Behavior Specialist Consultant is who writes the initial and ongoing treatment plans for the consumer and serves as a team lead. It is now mandated in the state that those BSCs hold a degree in human services and log at least 1000 hours of service in the field before they can treat someone with autism. This credential is known in PA as LBA, or Licensed Behavior Analyst.

A BCBA is not the same thing, though a BSC with their LBA might also be a BCBA. Are you confused yet? Bear with me! A BCBA is a Board Certified Behavior Analyst, which is a masters level clinician who has taken extra college coursework, sat through a (painful – ask anyone who’s been through it) exam, and is held to extensive supervision and continuing education standards set forth by the BACB (ready for your bowl of alphabet soup yet?). The BACB is the Behavior Analyst Certification Board.

There are many other terms and abbreviations I could address, and of course I am happy to if asked through comments and messages. But my main goal this evening was to ultimately answer whether or not ABA and wraparound were one in the same, and throw in a few extra tidbits to give a somewhat clearer picture of a daunting and overwhelming process.

Jody, wherever you are, I hope I made and continue to make you proud in my work calling.


Who has heard that catchy new tune from Alice Merton, called “No Roots?” If you haven’t, and you decide to YouTube her video and thus end up getting the song stuck in your head, I apologize. 

Sort of. 

Music is so cathartic yet joyful for me. I am one of those people who finds deep inspiration in lyrics and quotes. I am fascinated hearing other’s people’s “why,” about their journey, learning their story and/or listening to their message. Music is powerful, isn’t it?

“I like digging holes and hiding things inside them,
When I grow old I hope I won’t forget to find them.”

Both in my personal journey and in fulfilling my professional career calling, something that has always been important to me is to never, ever for a moment forget where I came from. I won’t forget the people who have touched me, or whom I have touched in some way, no matter how big or small. 

As I scrolled through my Facebook photos this evening searching for an image I wanted to share on tonight’s post, I took a brief stroll down memory lane (well, not so brief … I mean, thouuuuuusands of photos, people, THOUSANDS!) – through many tough family moments,  through the ups and downs in the world of autism, through the gain and loss of relationships, friendships, and loved ones, through my recovery, through my profession, and through my own path towards learning who … LOVING WHO … I truly am. None of those, as one can imagine, have been easy. Loving yourself, as Brene Brown says, is sometimes one of the hardest things you’ll ever do.

This photo was the image I remembered posting years ago from my office – the “bully free zone” as my old Service Center team will no doubt recall (the “safe space” before safe spaces were a “thing”). I dropped my beat up 1996 Penn State McKeesport leather folder that day from my desk. The folder  contained a pile of notecards, letters and trinkets sent to me from people who told me how much my support meant to them. Many were mothers of children and teens with autism, but there were a few who were self-advocates (er, activists) or other community connections. Handwritten notes are a sign that you touched someone’s mind, heart in soul so much that you were worth a few extra minutes of gratitude. This picture documents a small sampling of the lives I have been privileged to touch by not only providing information and resources, but by exuding transparency, repetitively opening old scars, and being as real as I can be through sharing my story. It is true when it is said that it is truly selfish to keep our story to ourselves.

Sometimes, our stories are the key to unlocking someone’s dungeon. 

Sometimes, our stories help others to feel comfortable enough to come forward and ask for help.

Sometimes, our stories provide companionship to those who feel alone in whatever battles they are fighting.

And sometimes, showing our appreciation to someone else may be a game changer for them – for their day, their week, their month, or a really bad year.

Each and every one of these notes will stay with me forever, in my folder, in my mind, and in my heart. I may not still be in touch with every note’s author, but I’ll never forget who wrote them. It is I who is so very lucky to have such reminders to ground me … to root me.

I encourage anyone who is reading this to take time this week – hell, make it a weekly ritual – to demonstrate your gratitude to someone. Handwritten notes make incredible mementos, but if you don’t have handy stationery and must send an email or even tag a friend on social media, just do it. Even better, call someone to catch up, or invite them to lunch or dinner so you can tell them in person! I had a wonderful call with another “autism warrior mama” last night, and I have a lunch meeting scheduled tomorrow with another gladiator who I once stormed our nation’s capital with (and would board that bus again in a HEARTBEAT).

Let someone (or many someones!) know how important you are to them. Give thanks. Remind someone that they matter, and that this world is so much better with them in it. I promise, you will be so glad that you did. Relish in gratitude. It changes everything.

I’ll end my thoughts tonight with some photos of a necklace given to me by my ride or die sister from another mister. It sums up what I’m trying to say so beautifully and simplistically, reminding us we are all connected.

“Like branches on a tree, we grow in different directions … yet our roots remain as one.”