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.

There is SO. MUCH. MORE. STORY. TO. TELL.

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”: 

https://tonic.vice.com/en_us/article/7x7myx/prom-for-disabled-people-perpetuates-stigma?utm_source=tonicfbus

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.

WWCD?

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.
 

Rooted

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.”


Autism Didn’t Load the AR-15

I remember vividly when I was asked to be a voice for our local community and provide my thoughts as both the parent of someone with autism and a professional resource about the Sandy Hook massacre of December 2012. In particular, I was asked if I would be comfortable addressing the connection between Adam Lanza’s diagnosis of Asperger’s Syndrome and premeditated violence. Without hesitation, I welcomed Paul Van Osdol and a cameraman from WTAE into my home. I had done plenty of media interviews in the past, but this interview was different.

I felt like I had to defend my son’s honor, and the honor of each and every individual diagnosed on the spectrum. I refused to let Adam Lanza become the new face of the autism community. And tonight, I refuse to let Nikolas Cruz take that spot, either.

As the cameraman was setting up equipment in my dining room, Christian arrived home from school. He was expecting the news crew as I had prepared him the night before, so he wasn’t nervous. He acted perfectly natural as he came in our front door. I asked him how his school day was as he set down his backpack, took off his coat, and grabbed his newspaper bag. He shook hands with Paul and the cameraman, and then went to his room to change into more comfortable clothes before delivering his papers.

Christian quickly came to the front of the house, loaded his bag after counting his papers, excused himself kindly, then went out the door. The cameraman filmed him delivering to a few of our neighbors’ houses.

“He appears to be a kind young gentleman. How do you feel about the connection between violence and autism upon learning that Adam Lanza was diagnosed with Asperger’s Syndrome?” Paul asked me on camera.

I remember exactly what I said, and I will stand by this until I take my last breath: “Someone with autism …. someone with Asperger’s … they are not capable of premeditating a crime of this magnitude.”

I also recall speaking to another parent earlier that afternoon, whose child was bullied at school by other children who knew he had autism.

They called him a murderer. A little boy with autism … an innocent boy who so desperately tries to be a part of our world … was labelled as a murderer. Let that sink in.

I shared this story as well during my interview. “I don’t want these terrible accusations resulting in the bullying of even one more individual,” I cried.

There is a difference between autism and mental illness. There is what is called “co-morbidity,” and this is where the boat is being missed. It is certainly possible that criminals with mental illness have a diagnosis of autism. However, in such cases, it is abundantly clear that these individuals have a higher IQ and cognitive functioning than someone who is significantly impacted. Someone who meets every criterion for an autistic disorder is not someone you will find planning a mass murder.

In my new role at Wesley Family Services, I am blessed to serve as an account manager for the Healthy Relationships Curriculum. Something our team is evaluating *right now* is how our lessons  specifically address the needs of juvenile and young adult offenders with autism. Many times, what we see in the criminal justice system are young people who end up being taunted into breaking the law, lack coping skills to effectively deal with rejection, lack knowledge of private vs. public behavior, and lack of understanding of what laws are or even why they exist. Something we also need to remain cognizant of – highly cognizant of – is that even though many young people with autism fall into the perpetrator category (either by mistake or because their comorbidity contributed to the crime), the majority will end up as … VICTIMS. They are victims of bullying, sexual assault, and/or battery.

There are many things that contribute to mass killings in schools:

     ⇒ easy access to semi-automatic weapons
     ⇒ lack of mental health support but a whoooooole lot of stigma still present
     ⇒ incessant bullying that occurs 24/7/365 thanks to social media and smartphones
     ⇒ parents not being accountable and not being fully “in the know” with their children
     ⇒ schools without locks, metal detectors and/or proper safety procedures
     ⇒ autism – yes, please take this OFF of your list.

Until we stop the fingerpointing and realize that this issue has many deep layers, we will continue to get nowhere. We certainly won’t get anywhere blaming a population of innocent individuals with a neurological difference.

Stop. Blaming. Autism.

There’s so much work to be done in these dark times, and each and every one of us, though we can’t do everything, can do something. Enough Tweets of thoughts and prayers, enough viral candle posts on Instagram, enough  Facebook profile frames with hashtags. Break the cycle and do something that will create a better tomorrow. Do something so that parents no longer fear sending their children to school and not seeing them come through the front door in the afternoon. AMERICA, WE HAVE TO DO BETTER.

I urge you to please be a voice and educate your children, your loved ones, your friends, the lady you see weekly at church sitting in the pew behind you, the old man buying the perfect apple in the produce aisle at Giant Eagle, even perfect strangers about what really triggers massacres – hate and mental illness.

Autism didn’t load the AR-15.

The Caffeinated … Activist?

I had a FASCINATING conversation with another “gladiator parent” (whom I will call “Maddie”) on Thursday evening that challenged me on so many levels. This conversation has stuck with me, and it’s no surprise that this dialogue sparked tonight’s blog.

My initial gut reaction to her Facebook post, “Another thing to stop calling yourself and others in 2018 – self-advocates,” was shock and disappointment. I just couldn’t picture someone being disturbed by this term which has fueled my fire for years both personally as a mother and professonally as someone who provides community outreach and promotes programs that will encourage success. No matter how much an individual seems impacted or impaired by their diagnosis, I believe with my entire being that everyone has something to offer this world. I believe that no matter what one’s expressive or receptive delay may appear to be, that a person understands and is capable of so much more than we often acknowledge. I believe that everyone is able to advocate for themselves on some level, and that such advocacy should be encouraged and facilitated.

And … what is wrong with that, I thought? Isn’t this what we want? Isn’t this what parents like myself give our blood, sweat and tears for to ensure optimal independence and civil rights?

Maddie challenged me to think beyond what someone in the disability and neurodiverse community see as an ableist term. “Self advocacy” can be used to describe, for example, a non-verbal adolescent with autism who has difficulty expressing themselves effectively to ask for a drink of water or to use the restroom. They advocated for their needs. Therefore, they “self-advocated.”

As Maddie continued to share her views and explain her stance, I was led to thinking about a phrase I personally cannot stand, which is “children with special needs” or worse yet “special needs children (where we put a label before the child and make their struggles their identity).” Think about the example I just gave. Is drinking a glass of water a “special need?” Is using the restroom a “special need?” Those are essentials. Let’s dig further … is going to school to receive an education a “special need?” Is dressing oneself and knowing how to take a proper shower a “special need?” Is being able to initiate or sustain a friendship a “special need?”

What happens when people – no matter their abilities – self-advocate but also demand that their needs be met, demands that their rights be given, and demand the respect they deserve and should not have had to work to earn?

Maddie pointed out to me that they undoubtedly become … activists.

What is an activist?

They scream, they shout, they cry, they fiercely and unapologetically demand that we take notice of their radical action. They put in, as Maddie shared, “emotional labor” into making this world take notice of their accomplishments, abilities, talents and equal rights. They then take the extra step in showing that others deserve the same without question.

To further support this position, let’s look at MLK Jr. Mother Teresa. Harriet Tubman. Gandhi. Temple Grandin (perhaps the most famous of all adults so beautifully representing the spectrum). Would we call them advocates … or activists? Of course, they are known as activists. These are people who self-advocated for their own rights, and then continued to scream and shout from the mountaintops to command positive change in our world. Activists certainly need the self-advocacy “toolbox” as Maddie agreed. But to suggest that a self-advocate can only want what is best for themelves and not set (or WANT to set) an example for others who face the same struggles and barriers faced can indeed be dismissive. I was reminded of one of the powerful phrases ever engrained in my soul by an autistic activist and change agent, William Stillman – presume competence.

Maddie humbled me so greatly when she said that my work, and my son’s fight to become who he wants to be are both blazing a trail to make the world a better place as her children grow. I hope I never become jaded or numb to the immense gratitude I feel for someone who believes that even the smallest step I have taken has touched their heart.

Our discussion continued for a few more exchanges, and I opened up to her a bit (as I have again in many instances in recent weeks) about what I’ve referred to as one of the most professionally challenging years of my life, 2017. What I am referring to specifically, of course, was being backed into a corner with no reasonable option other than to pack my office and vacate a position that supported my livelihood and put my family at significant risk. I had no “Plan B.” I had no savings. I had no other job secured. I walked away.

But what I took with me – my dignity, my values, my beliefs, my ethics, my vision, my conviction, my courage – were and will always be priceless. I have no regrets, and never will.

During that difficult time, my son who was directly impacted by the situation that triggered my decision, wrote a letter to the person who hurt him so deeply with their discriminatory words. I remember thinking … “wow, he truly is an amazing self-advocate.”

And … he is. Christian is an amazing self-advocate, and a powerful one. That letter, though, isn’t just about him. It’s about each and every person that this organization claims to stand for. He truly has stepped beyond self-advocate, and is an activist.

You don’t need to change seats on the bus or march with signs on giant sticks to change the world, Maddie reminded me. You simply need to use your voice to create a ripple effect that goes beyond yourself and touches others.

Thank you, Maddie, for the brilliant discussion and allowing me to open my eyes and heart even further. I hope this post and this perspective does the same for others.

Signing off for the night, wishing everyone much peace and love,
Your Caffeinated Advocate Activist ✌

The Latest Forecast …

is a 100% chance of a full blown cyclone of intention, showers of radical action, and a brisk declaration here and now that it’s high time I moved forward with The Caffeinated Advocate.

I created a Facebook page in 2015 with an intention to create a social media page to align with a blog to “brand myself” and my work. Children and teens, do you remember the 90’s remember the album “Everyone Else Is Doing It, So Why Can’t We?” (RWG, Dolores O’Riordan). Well, yeah. Why can’t I brand myself, too? Why haven’t I shared more of my story, my beliefs and my thoughts beyond posts with inspiring picture quotes or coffee selfies (#cathyrunsondunkin, baby) on Facebook? Why haven’t I moved forward until now?

If you know me, you know I thrive on and enjoy writing, as I find peace and rejuvenation through written expression. If you have known me for a relatively a long time (and know me well), you know that I started writing a book years ago to document my journey to date through the autism spectrum with Christian. When my portable drive crashed years ago and I lost several chapters I had written, I lost my energy and my nerve. I remember I had stopped at the part where I share the devastating incident that led to receiving my son’s diagnosis of autism. I completely froze! I think there was a part of me that was relieved that I had lost the work, as much as I had put into what I had done to date. I didn’t have to rehash – and *FEEL – every painful moment I experienced from that time period.

Shortly thereafter, I began to struggle with my own demons as I tried to cope with the death of my father, supporting my mother, raising a boy with challenging needs and working (well beyond) full time hours. All of those – and so much more – will be touched upon in future posts, that you can count on.

Back to the word *FEEL … I have finally reached a point where physically, emotionally, and spiritually, I fully embrace how I feel. I am transparent with others about 95% of the time (a gigantic step for me) regarding how I feel. I am confident with how I feel. I am honest with how I feel. I am not afraid to feel and I am not afraid to say how I feel. More than ever, I believe I have found my voice.

You’re going to hear much more of that voice. When I’m silent, I encourage my friends, family, and future readers to nudge me when I’m quiet. Hold me accountable. Ask me questions. Remind me I am a gladiator, even when I feel like I cannot pick up my sword.

As motivational speaker, author, blogger and social media ninja Lisa Nichols (one of my biggest inspirations from 2017) declared long ago to her fans, “your story is NOT your story. Your story is meant to bless others.”

It’s time to open myself up further to this world – this entire world – and show everyone who I truly am … especially now that I have finally learned who I am as a woman. It took almost 40 years to find her, to know her … to … love her.

Hi, I’m Catherine Hughes. I’m The Caffeinated Advocate, and I’m so glad you’re here.