a pre-pre-Introduction

“Country roads, take me home // to the place where I belong”. I’m currently sitting in a bar across the street from my new apartment in Brooklyn. It’s also across the street from my co-worker with whom I stayed many times before moving here myself so this is a bar I’ve had my eye on for a while and just now have finally carved out the time and space to get in here.

Because that’s where I go when I have work to do that requires my full focus. I go to a bar. In Portland, ME I always went to Ruski’s. A self-described “dive bar” that serves the best breakfast and the best company. It has always been a place where I can go where everyone is just there. You know how when you’re thinking about which bar to go to and you have to think about what context of your life you’ll be living in by going; what clothes to wear, how many friends, which friends, what’s okay to talk about, what’s the reason for going? You don’t have to do any of that at Ruski’s. I’d go alone, sometimes meet some new momentary friends and talk about anything from politics to phone apps, often just keep to myself and write.

But now, I’ve been sitting at Midwood Flats, not certain if I can do the same thing here, but staring at a blank computer screen still unable to find the first word, the first letter even, to type as I finally dig into the story of my ridiculous road trip. That cross-country-and-back road trip I began 6-months ago, completed 2-months ago, and have hardly dared to face. And here I’ve been sitting, with the space and the time—finally—and I can’t find the words to say.

Then, “Take Me Home, Country Roads” came on over the speakers. A song that was a staple at music group in the developmental disorders unit at the locked-down psychiatric hospital I worked at for nearly 4-years. A song that reminds me of Frank, the 60-something year old from Detroit who has more stories to tell than anyone I’ve ever met. One of those guys who is known for being able to do “whatever the fuck he wants” (his nickname on the unit was “Obama”) and everyone is okay with it. He’s just one of the many people from my work at that place who has deeply impacted my life and the song by John Denver is just one that vividly brings back memories of certain kids and deep feelings and wonderings and hopes about where they might be now. This song in particular reminds me of one specific patient, the first kid to ever punch me in the face, a kid I miss dearly and wonder often how he’s doing.

It only takes a song sometimes to bring up so much memory, to bring someone from a blank brain and a blank screen to the 5th paragraph of writing. This is a commonly understood and very deep emotion that translates across demographics. Yet, we still live in a world that is more full of people who still say “I just don’t know how to talk to them” when asked if they’ve ever befriended, or even interacted with a person with autism. The way in which something so simple can evoke such massive emotion is so common yet the way in which an autistic person reacts so visibly to a sound or a touch makes people afraid. The way an autistic person might crave expectations or consistency or honesty makes other people nervous and self-described as “unqualified” to interact with them. The way in which autistic people might honestly, and fully, and emotionally respond to a stimulus around them makes those of us with more controlled cognitive and sensory systems terrified, for they represent the emotions we try so hard to never show, the worries we tried so hard to never admit, the truth we try so hard to hide.

We’re not unqualified. We’re not afraid of hurting them. We’re not afraid of how different they seem. We’re afraid of ourselves. If there’s anything that I’ve learned from working with and being with people with autism it’s that we are way too curated in our lives. You may have resonated before with how I described the way we approach going to different bars—how we consider things from the clothes we wear to the types of people we’ll invite to be with us—and you may have laughed because of your own examples that you yourself have in your memories. But that ridiculousness, that ability to make so complex the mere event of going out for a good time, is so deeply a privilege in ways that so many of us will never read about in the newspapers or Facebook feeds.

We’re not afraid of how honest or impacted people with autism are. We’re afraid of how real and how present and how connected they make us become when we have them in our lives. And while I live and breathe as a person every trying to get away from “us and them” ways of speaking I intentionally do so here because my life with autism in it and my life without is so dramatically different that I think autistic people and those who support them deserve to be labeled as “us” while the rest of the world, for once, can be called “them” for the absurd ways and excuses they sometimes make for not being more widely inclusive of the ambitious endeavors they set out to have. My privilege, here, is how I get to exist in both worlds. My shadow, here, is also how I get to exist in both worlds.

It’s Not a Choice

I couldn’t have counted how many times I said this phrase when I worked in that psych hospital: “It’s not a choice”. With kids residing in the program, admitted with co-occurences of developmental disorders and psychiatric diagnoses, those of us who provided the direct care would reserve this phrase for the most desperate of times. That’s not to mean that it was used sparingly; desperate times were very frequent.

Even though we’ve technically closed institutions, these kids were behaviorally-institutionalized having grown up during a time when big-data prescribes the words that we use, when every diagnoses as a “best practices” approach, when autism is viewed as a specimen rather than a way of being human, where we trust text books and evidence rather than the human experience. Some of these kids had spent nearly their entire lives in group homes while others lived in a life bouncing from hospital to hospital. What these kids live and breathe are therapeutic interventions so much so that real moments of the human experience- such as a regular conversation, having an unscheduled period of time, being allowed to fail- can feel completely foreign.

But the way our systems and institutions are currently set up we risk our jobs by replacing “best practices” with human experiences. Saying “it’s not a choice” is one small drop of human experience we could give. When we were backed into corners, when the potential for violence was greater than the opportunity to use approved behavioral supports, when you needed to survive the 16-second elevator ride, when ketchup isn’t available: saying “it’s not a choice” was just enough anti-therapeutic practice to wake them out of their institutionalized daze and connect. And more often than not, it actually worked. It didn’t mean the kid felt good about it, but it meant a whole lot more.

This is not any different from how our country is operating right now. We are on spinning wheels of excuses, best-practices, data, and news articles. We have built ourselves little containers of safety where we have so much evidence to support our separation and beliefs. We’ve let systems and institutions lead us to believe that this is what we should do. We’re being way too patient waiting for a therapeutic development to supportively guide us into participating in change. We shouldn’t have to wait until we’re backed into a metaphorical corner to get involved in something.

This was always the struggle for me when I worked at the hospital. We all showed up to work every single day not knowing what would happen. If every kid was perfectly well behaved that day or if every kid went into crisis and we left with bruises, concussions, bite marks, and stitches, we had no choice. Yet the community response to this work is “oh it must be so rewarding”. My ideas around why people say this is because we understand our lives according to our roles, our policies, and our places. “That role you’re in must come with rewards” is what I hear. Nobody knows what else to say because nobody understand what’s really going on. But those kids never went into crisis because the data said so or because their diagnoses caused it. The experiences that come with being a human moves us in and out of crisis. For the kids I used to work with, the lack of sharing in their human experience limits their lives to only the people, protocols, and institutions instructed to do so.

I thought I was going to get fired once when the occupational health nurse criticized me for getting bit due to “not wearing my PPE correctly” and I asked “well have you ever worked with any of our kids before?” and when she said “no” I said “then you don’t really know what you’re talking about”. Revisiting this topic has me feeling quite angry and I begin to feel a tension in my body that I lived with every single day of the nearly 4-years I worked at that institution. This is not an anger that I need anyone to justify. It’s not an anger that I need anyone to help me find the source of. It’s not a tension that one massage therapist or friend can help ease.

We have a terrible nation-wide habit of witnessing human experiences and falling back on blame, policies, evidence-based practices, and roles to offer a response. I’m sure no one in Flint cares about your suggestions about how the Governor should have handled it differently. I’m certain no anger on the street will be tempered by your talking about how protests should be handled differently. We are running out of open space to store our containers of safety. Are you going to wait to be backed into a corner to say “it’s not a choice”?

It’s scary to speak up or to sign up to get involved in something. But I don’t think the fear comes from the unknown nor from the idea of change. I think it comes from the isolation that comes with daring to step in. Energy cannot be created nor destroyed. Where there is suffering and pain, our suggestions and thoughts and prayers do nothing but restrict the container in which the suffering and pain resides. So if the actions around politics and social change today make you feel uncomfortable, realize that not getting involved actually contributes to the intensity of anger, frustration, chaos, crisis, and other happenings that make you uncomfortable. These energies can only be eased if they are shared. The more we dare to step in the less isolation becomes a part of being a part of change.

If this sounds overwhelming consider this: it’s not a matter of all in or all out. Maybe you can fully step in and become an organizer who facilitates people and marches in the streets and testifies in congress. Or maybe you simply sign and share a petition. Maybe this year you march and next year all you can do is vote. Maybe you dare to have a political conversation with a friend. Perhaps you start to listen to podcasts and read the newspaper. Maybe you stop complaining about a policy at work and start researching how to change it. Maybe you simply sit and listen to the experience of someone who has experienced pain, then listen more. It’s not a matter of all in or all out. It’s a matter of completely ignoring humanity or leaning in, even just a little bit.

I’m making a bold suggestion now. Your place of employment is not going to facilitate you toward the best way to participate in politics. No evidence or graph will be revealed to suggest the “best social change activity for you”. No chant or prayer or space held will radiate out in love and light and peace to your fellow humans. Your playing small by surrounding yourself with others who play small makes the issues and crisis of others grow exponentially. And the discomfort you feel and use as justification for staying uninvolved is nothing compared to the discomfort felt by people who don’t have a choice.

Do something. Don’t wait until you feel justified or fully supported. Don’t think that your differences from the people who are currently taking action means that you shouldn’t say something or show up. What will it take wake ourselves from our institutionalized daze and dare to be a part of the messy, chaotic, and necessary human experience.

It’s not a choice.

 

How Can Your Client Not Get “Attached”?

I’m 28-years old and single, but when I’m at work, I often feel like a mother of a 4th grader. My client Tanya is a ward of the state but she lives with her mom and grandmother. Her father is absent and mom spends time in and out of prison. From the stories Tanya tells me, it doesn’t sound like responsible adults are consistently around. With as many times as Tanya has threatened to run away from school, she never has. She doesn’t have anywhere she wants to run to.

I spend approximately 6 hours a day in school with Tanya. We work primarily in a one-to-on ratio. I’m trained to maintain a professional, therapeutic relationship with Tanya. I’m not supposed to let her get attached to me; she needs to learn to generalize her communication and social skills to other people. However, Tanya doesn’t appear to trust anyone. She even accuses my iPhone timer of cheating the clock. But Tanya has to learn to trust teachers, administrators and the educational system before she can acclimate to a mainstream classroom.

My job is to teach Tanya how to follow the expectations in a traditional classroom. In order to even attempt that, I have to demonstrate to Tanya that it’s worth it to try. She has been so traumatized that her default response to everyone and everything is variations of aggressive defiance. I needed to build a relationship before I could tackle any academic tasks. After 3 months of working with Tanya, she will barely tolerate a 1-minute conversation, and that’s an improvement.

While my clinician, my supervisors and my training continue to preach the adage “don’t let clients get too attached,” I ask, with what does it even mean to get attached? Do we really want to teach kids that they should feel a personal connection to their professional but not too much because they are just going to leave you? Important, influential and memorable people come in and out of everyone’s lives. It’s natural and normal. Why not teach that life lesson instead of ignoring the inevitable?

For a kid that feels abandoned, its crucial to teach them about these transitions as no professional will be in their life forever. Teaching Tanya how to transition between different types of relationships is in her best interest. No matter what happens, eventually she and I will part ways. When that happens, I want Tanya to understand that while it was my job to support her academically, I care about her as a human being who was a part of my life. I want her to know it’s not bad a thing we won’t be working together anymore. I am not leaving because of a bad reason.

Clients like Tanya need these experiences framed as a normal part of life rather than another act of betrayal they can add to the memory bank. As professionals, we do our clients and ourselves a disservice when we ignore the likely outcome of children forming strong personal attachments beyond the therapeutic relationship.   We are missing a teachable moment.

 

 

Got Hugs?

Section 28 clients have developmental delays and Section 65 clients have a behavioral diagnosis. But professionals working in Section 28 can hug their clients. I can’t because I work in Section 65.  When my 9-year-old client gives me a hug goodbye at the end of the day, I have to teach Charlotte to give me a fist bump, high five, or side hug instead. When she asks why she can’t hug me, I struggle to answer.  I follow company policy, but I don’t understand or agree with it.  It’s uncomfortable to withhold appropriate affection towards a child.

“But behavior kids are dangerous!”   If you, or someone you know works with children with developmental delays, you might be chuckling. Kids with developmental delays can be just as unsafe and unpredictable as kids with behavioral concerns! The actual risk depends on the individual, not whether they are in Section 28 or 65. The perceived risk of working with behavioral challenges is deceptive.

Working in Section 28, there was a decent chance my client Michael, who was nonverbal and did not use sign language, would try to bite me on a daily basis. I am trained to avoid physical harm, but Michael’s aggression was often quicker than my training. His wants and needs were extremely difficult to understand. Charlotte is my current client in Section 65. She is physically aggressive, but her aggression is more manageable. If Charlotte threatens to stab me with a fork, I remove my body from harm’s way and call for backup. Charlotte never exhibits dangerous behavior without a physical or verbal warning. If you give her space, she leaves you alone.

Charlotte has never made a true attempt to follow through on her threats. Michael, however, sank his teeth into me on more than one occasion. The actual risk of injury is significantly less working with Charlotte than Michael because her physical aggression is predictable and avoidable.  Now, consider the risk management involved from a client’s perspective.

Michael can’t tell someone to stop touching him if it makes him uncomfortable. But healthcare professionals may hug him without specific guidelines. Conversely, Charlotte is fully capable of telling people to leave her alone. Yet Charlotte is the client I have specific directions regarding physical contact. It makes no sense that the client who cannot speak for himself can have his personal space violated more easily.

But hugging isn’t the focal point. The question is, what kind of physical contact is most beneficial to the client? Physical interventions should not blanketed statements applied to each department.  Instead, we should look at the role of physical contact in the client’s life.  We should assess what kind of boundaries would best support the child, and then decide what kind of physical contact is appropriate.

Michael lives in a loving home; positive attention and human interaction are a common occurrence. Charlotte’s life is full of trauma. She needs healthy affection far more than Michael, but she is the client I have to push away or redirect to a side hug.   The bottom line: we should avoid a one-size-fits-all mentality and do our best to meet the individual needs of clients.

A High Five Amidst A Crisis

It’s 11:00 am. Tanya, my client, has alternated between running and hiding for over an hour. I’ve tried every strategy or behavior trick I can think of.  Surrounding teachers and students stare. I can’t tell if they think I’m a saint for my patience or a lunatic for not calling the principal. I wonder how much longer this behavior will last and what I can do to redirect Tanya from her compulsion to escape. I’m rounding the corner of the hallway to keep eyes on Tanya when I see my coworker, Danielle, head toward us.

Danielle used to work with Tanya but has since switched from behavioral challenges to developmental delays. She now works with Katie who is primarily nonverbal and has autism. Whenever I see them in the hallway, I always say hello. These exchanges help Katie practice appropriate social interactions. Every once in a while Katie will wave or whisper a barely audible “hi” but mostly she continues smiling silently as she glides down the halls.

As Katie and Danielle approach Tanya (who was marching 15ft. in front of me) I wonder if I can distract Tanya. Maybe engaging Tanya in conversation with Katie would give her chance to slow down and reset her thinking. I will try just about anything to keep Tanya from continuing to run around the school. I am slightly desperate. I prompt Tanya to say hello to Katie, even though I know Katie might not respond. I know Tanya understands I say hello to Katie to help her learn to speak. Tanya remains silent, but she does stop walking away.

When Katie crosses my path, Danielle prompts her to stop and say hello. I kneel down and go through my normal routine greeting. I see Tanya looking over. I casually tell her to come over and say hi. Tanya shuffles over, her eyes averted. She mutters “hi” while studying her shoes. Katie doesn’t respond. I tell Tanya that Katie probably didn’t hear her and she could try again.

Shockingly, Tanya pops her head up, smiles, looks into Katie’s eyes and cheerfully says “hello!” She also holds up her hand to offer Katie a high-five. Katie responds with a smile, a quiet hello, and soft clap of her hand to Tanya’s. I’m having trouble processing what I’m seeing. Tanya has not listened or followed any instruction I’ve given for the last hour yet here she is, nonchalantly exchanging pleasantries with a peer who most people never take the time to communicate with.

Tanya didn’t magically stop running away after seeing Katie. But I wish I knew exactly how Katie captivated Tanya’s attention long enough to stop running away for five minutes. I wish I knew how she inspires Tanya to pause and be kind to a fellow student. However, despite my lack of understanding, I continue searching for opportunities to facilitate these interactions.   It was a small moment in time, but it was magical to see Tanya, the queen of verbal insults and defiance, genuinely take interest in another human being. Especially since Katie does not meet Tanya’s usual standards for normal.

 

 

Supermarket Run-in

This week I talked to a quite a few people who work in different grocery stores. I asked them about their experiences weather at work or outside of work with people who have a developmental disability. Everyone I talked to seemed very willing to have a conversation with me and seemed excited and interested to answer my questions.


 

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A man stocking onions at Trader Joe’s said, “I don’t have a lot of experiences personally working or being around people with a disability, but I have a really great friend who uses horses in her work with people having some disability weather physical or cognitive.  I get along great with customers who have a disability and I always become there friends and have some great interactions.

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A young girl working the demo section at Trader Joe’s responded with, “I work with young adults who have emotional or developmental disabilities. It’s really rewarding and I get along well with them.  But it’s really important to pay attention to what you say and how you say it. They have a hard time picking up on sarcasm or jokes so it’s really important to be clear and to the point when communicating.”IMG_0371.jpeg
An employee at Hannafords supermarket said, “there are a couple of people employed here that have a disability. I get along with them great. They seem to really enjoy working here. Hannafords I think treats them really well.”


It was interesting talking to people at different grocery stores and seeing how each person had some connection to the world of developmental disability and how each person’s experiences was very different.  Some people interacted on a daily basis with a person who had a disability. Others it was just at work or very rarely.  It was an excellent wake up call to remember that the world is a huge place.

Back to Back School

Photo Credit: Artist Mom with a Twist
Photo Credit: Artist Mom with a Twist

Our daughter doesn’t have a classic summer school vacation she goes to school year round, so the month of September isn’t a back to school month for this special needs family. This past August she did transition to a special-needs middle school, which was a delightful time for us and went very smoothly for her. Unfortunately, with every success she has as a student, we also deeply struggle with the uncertainty of her out-of-district placement’s stability. Holding her placement in a school that fulfills her learning and social needs is our family challenge. We struggle daily advocating for our low functioning daughter, I think special needs families are always under pressure with a loaded agenda of issues they face in advocating for their child, which very few people are aware of. I know it’s a shame that special needs families have two sharp edges to endure, raising a child with a disability and advocating for what is just. “Back to school…” is forever bitter sweet for this special-needs family.

Photo Credit: Allison Johnston
Photo Credit: Allison Johnston

Swinging has been important to our autistic daughter and us. She finds enjoyment moving this way and it helps her discharge energy and re-regulate. Sometimes she looses interest in it, but has always come back to it and it still benefits her. She likes to say “go fast” when she begins swinging and we enjoy watching her smile.

-By guest contributor, Artist Mom with a Twist

Redefining Ability

Going back to school means a bittersweet return to a land of structured learning.  Going back to school also means daily evaluations of individual abilities.  Grades and numeric scores are assigned to demonstrate students’ comprehension. Children are grouped in classes according intellectual abilities.  Physical abilities are evaluated in settings such as gym class or organized sports.  Overall, when children are participating in academic events, they are more often than not being evaluated on their individual abilities.

But what defines an individual ability?  Does a skill need to be measurable to be considered an individual ability?  What kinds of abilities do academics actually recognize?  The more I study educational pedagogy the more I find myself questioning traditional academic principles.  For instance I believe understanding simple math is as (if not slightly less) important as learning to resolve conflict with peers.  My view may be unpopular or controversial, but from my real world experience, my ability to work well with challenging colleagues or supervisors has been exponentially more beneficial and influential than my skills in mathematics.

The definition of ability becomes more complex when you look at children and adults with developmental disabilities.  My first reaction is to be politically correct and use the term differently abled, but honestly I don’t think it explains the situation fully.  Yes, people with developmental disabilities are capable humans with just as much to offer as the next person.  It’s also true that their physical, mental and emotional world is inherently more challenging.  I truly hope not offend anyone with my statements, but I think you need to understand my opinion to understand my story.  My goal is to generate thinking, not to persuade you to agree with me.

I broadened my perception and understanding of individual abilities when I started the school year working at a specialized school for children with social, emotional and behavioral challenges.  Some of the children experience developmental delays and others come from traumatic backgrounds.  My title is Behavioral Health Professional (BHP) and my job is to help students with traumatic backgrounds work towards goals on their treatment plans.

Tanya is the most memorable student I’ve encountered.  She is easily the most defiant and angry child I’ve ever met.  However there continues to be one exception to Tanya’s unpredictable and aggressive mood swings.  Whenever she is in the presence of children with severe developmental delays, Tanya shows up as the best version of herself.  She speaks with confidence and respect.  Her body remains neutral and calm.  She shows genuine interest and concern for the condition of her fellow students.

I first recognized this phenomenon during one of Tanya’s frequent violent outbursts.   She and I were in a vacant room near the main office.  I was trying every technique I learned in training to help Tanya deescalate so we could return to her normal schedule.  However no matter what I tried, Tanya’s eyes glared at me from across the table where we sat.  Her fists clenched on the table, her feet shuffled restlessly and she occasionally muttered curses at me under her breath.  I prompted Tanya to use coping strategies to calm her mind and body. No response and no change in behavior. Eyes remained in slits, feet shuffled under her chair, fists remained clenched on the table, and she sporadically whispered curses or threats.

Unexpectedly another student named Gillian and her physical therapist Laurie walked into the room.  Gillian took cautious unsteady steps while Laurie held her upright.  She couldn’t walk without support. Gillian wore a bandage over her throat to cover a tube that enabled her to eat.  Gillian could not swallow food.  Gillian was nonverbal and Laurie helped her move her hands to communicate using sign language.  Gillian could not speak for herself. Gillian couldn’t do many daily tasks the average person takes for granted.   But Gillian could do something I have yet to see anyone come close to achieving.

As Tanya became aware of Gillian’s presence her mood began to shift. Tanya sat up straight; her hands relaxed and curse words were replaced with a slight smile. Curiosity and wonder appeared to replace fear and rage.

The social exchange itself was rather simple.  Laurie introduced us and showed Tanya how to sign “hello” to Gillian.  Laurie explained they were on a walk to visit people around the front office and I thanked them for stopping by to see us.  I prompted Tanya to say thank you.  She politely thanked them and wished them a good day.   After Gillian and Laurie left the room, Tanya remained in a relaxed state.  The anger that was palpable moments before somehow dissipated.  Tanya silently fidgeted in her chair for a moment and then asked me if we could go back to her assigned activity. We worked on a few coping strategies then safely met up her peers.

I continue to observe these exchanges between Tanya and children with visible developmental delays; no matter how severe or how different they appear.  Every time Tanya and I cross paths with these students, she is polite and moves to the side to let them pass rather than curse or intentionally bump them as she does with other students. What is happening between Tanya and the students with developmental delays? How can their mere presence evoke such drastic and consistently positive reactions from Tanya?

I don’t have an answer.  But I witness so many positive changes in Tanya’s behavior that I can’t help but conclude there is something yet to be discovered from these interactions.  Students like Gillian ease Tanya’s anxiety and fear, not forever but long enough to give her a chance to regroup and make a healthy choice for herself.  That in and of itself is such a gift and I daresay an ability.

However, Gillian didn’t get an A for her efforts.  And while some might argue she didn’t actually do anything, I counter with the fact that she woke up that morning and showed up.  With significant support, Gillian attends her individualized daily schedule like every other student.  She leads by example.  And perhaps that is the reason her presence can have such an impact.  Recognizing that another person who faces the same human daily needs and challenges, who is far less capable of managing them independently, but continues to put one foot in front of the other almost forces you to pause and reflect.

These moments invite you to step back.  Step back from your own perspective and become fully present to the truth of someone else’s reality. Appreciating someone else’s experience inherently helps you appreciate your own.  While I am still uncertain as to exactly what makes these moments and interactions so powerful, I’ve experienced their effect on countless occasions.

Just to clarify, Gillian didn’t magically cure Tanya of violent outburst and unsafe behavior.  I am not arguing that all interactions with people with developmental disabilities automatically result in significant social exchanges.  But I will say being in the presence of someone who is less able to meet his or her individual needs always provides you with an opportunity to pause, reflect and appreciate.  Once again, the ability to evoke personal reflection is something I call a gift.

It brings you back to reality when your mind is racing, puts your own challenges into perspective as well as enhance empathy and appreciation for yourself and others.   Personal changes won’t necessarily be immediate or last forever, but I hypothesize that over time, if you continue to embrace opportunities to pause and appreciate, your own challenges will be less potent and more manageable.  At least that’s my current prediction.  It’s also my hope that I have given you an opportunity to pause, reflect and appreciate your individual abilities.   I encourage you to use these gifts wherever you are, school, home and every space in between.

Rebecca Platz

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Rebecca Platz

Cumberland, ME

Student: University of Southern Maine

Behavioral Health Professional: Portland Public Schools


Rebecca will be working with Piece by Peace this fall as a part of a community relations project for her Graduate work in Adult and Higher Education. It didn’t take long for us to “click” and I couldn’t be more excited to welcome her to the team. From writing to curating to helping coordinate projects, Rebecca’s many skills were certainly be invaluable to Piece by Peace. I have a feeling our connection will extend beyond her fall semester community relations project!

PxP: You have worked in two of Maine’s most diverse schools as a BHP. How do you see this as different from working in homes and the community as a BHP?

Rebecca: Now that I am working in an extremely diverse school I have become much more aware of the cultural differences that exist in Maine as well as a greater appreciation for the view the next generation has one the world.  When I am teaching healthy social behaviors, I have to take into account more than just the cultural norms I am accustomed to.  I intentionally learn about the variety of cultural norms in the school so I can better teach my client how to appropriately interact with peers and school staff.   When I worked in homes, the influencing cultural factors were primarily from the family’s individual values.

PxP: If any, what was your relationship to special education growing up? (How were you exposed to it in schools, involvement, understanding, stigma, etc.) And does this influence or give you a certain perspective to the work you do now?

Rebecca: I didn’t even know what Special Education was until I attended public school in 8th grade.  I was new to the school and new to public education social norms.  I didn’t know there was a social stigma to special education.  This issue was the forefront of my first day.  I was so shy and terrified to make a wrong move.  I didn’t know the social rules but I could tell they existed.  The first person to talk to me was a girl name Jamie.  She introduced me to her friends, showed me around and invited me to sit at her table for lunch.  Now this next part is something I extremely ashamed of.  I sat with Jamie and her friends for the beginning of lunch.  I sat with them until a girl I perceived as cooler told me that I couldn’t sit with the special ed. kids and I should come sit with her.  The moment of deliberation was paralyzing.  I simultaneously knew that if I sat there the rest of my lunch I might be committing 8th grade social suicide but if I moved I would be giving into the social pressures of everything I stood against.  With a very heavy heart I must say I moved tables and was forever too embarrassed to look Jamie and her friends in the eye. I never directly made fun of her or other special education students directly, but the social isolation I participated in was equally as destructive.  This story is one of many motivators for working to create a society where differences are not only celebrated but simply accepted as part of life.

PxP: What are you currently studying in your graduate program at USM? Do you intend to relate these studies in anyway to the work you do now?

Rebecca: I am currently working towards a Masters degree in Adult and Higher Education.  While the program is aimed at teaching leadership and organizational skills to typically developing adults, the principles are often universal.  One of the most practical ways I might use my studies is through research.  While I don’t agree that all funding should be research driven, it is the manner in which things are currently done.  Applying multiple types of research that can better capture the subjective nature of certain developmental delays could help people gain funding for needed services.

PxP: In section 65 services you work in short-term, behaviorally focused, programs with kids. What has been challenging about this? What do you wish communities understood or were more engaged in?

Rebecca: The most challenging part of my job is communication.  I am lucky to be part of a large team of individuals working to help my client; however ensuring that everyone stays up to date on all information can be difficult.  The positive side of having so many people is that there are lots of ideas and general support however it also means that meeting necessary in-person meetings are delayed.  Delayed communication can cause me and the client more stress as we both have to wait for a decision that has lasting implications.

I wish in general there was a greater awareness of what BHPs and Ed Techs work to accomplish.  There is often confusion between the two positions and while they overlap significantly, there are important differences.  For example I am prohibited from teaching new material in a modified setting but Ed Techs can.  I think schools as a whole could function more effectively and staff would have more positive interactions if everyone was clear about the guidelines and responsibilities for each role.

PxP: How do you take care of yourself (or wish that you could) in order to sustain yourself in this position?

Rebecca: I am constantly reaching out for support from my supervisors or personal friends and family.  When it has been a particularly challenging day I need to verbally vent my feelings.  My supervisor encourages my coworkers and me to use him and each other as a resource.  I am also blessed that I have a very supportive family who is very excited and encouraging about my work.

I wish I had more time to socialize. It can be easy to take work home with me and not truly leave work at work.  Spending time with people outside this field is crucial for maintaining a healthy perspective! But I made the decision to work full time and go to school for the next 8 months and down time was something I knew would be scarce.  Simply reminding myself of this fact when life piles up is important to maintain my mental health!

PxP: What other aspects of your life- your favorite activities, hobbies, passions, etc.- influence your work or are influenced by your work and how?

Rebecca: It was a hobby that actually inspired me to start working in the field of behavioral health.  I began volunteering at program called Spurwink on the Slopes. I was matched with a child with a developmental delay and I taught him/her how to downhill ski in a lesson with typically developing students and another instructor.   I realized I was looking forward to my volunteer work more than my paying job.  Shortly after this realization I found a job as a BHP and have been working in the field since.

My overall view of life is constantly influenced by my work experiences.  After working with children on the autism spectrum I have become much more aware of everything that makes up my physical surroundings, gained a constant appreciation for being able-bodied and a humility to know I can’t, won’t and don’t need or want to know everything.  There is very little room for ego in my job and I love that.  I can’t get too attached to any strategy I employ as every day is different and clients are constantly changing! This one my favorite and most challenging aspects of working as a BHP.

A Four-Legged Friend

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“Horses, Okay!”  a young girl exclaims, and her face instantly lights up with a smile. The place smells of hay and horses. There are all sorts of different people hanging around including BHP’s and DSP’s, parents, instructors, volunteers and of course the students who will be riding. The students range from mild developmental disabilities to more severe; some students can form full sentences, whereas other individuals have a hard time saying a few words. The most beautiful thing is that the horses don’t care what you say or look like. They simply want to be your friends; friends with no judgments, friends who need nothing in return but affection and respect.

Therapeutic horseback riding is the use of horses to assist in therapy and completing goals. Horses can enhance physical, emotional, social, cognitive, behavioral, and educational skills for people who have developmental disabilities. The movement of a horse is very unique to any other form of therapy. It has the ability to stimulate a variety of muscles, nerves and balance points. It also helps to give these individuals a feeling of confidence, appreciation, responsibly and emotional understanding. Horses provide neuromuscular stimulation when being ridden, through their rhythmic motion which mimics the human movement of walking. The horses’ stride, either at the walk, trot or canter, moves the rider’s pelvis in a side-to-side motion, which is very similar to what happens when a person walks. Because the horse has different speeds, it constantly makes the rider think about adjusting the pace at which their horse is walking, which in turn helps the rider to think about their balance and flexibility. The rider has to be aware of each part of their body so that they can stay balanced and in rhythm with the horse. This helps to create core strength, balance, coordination, flexibility, attention to the situation, and helps build a sense of confidence. Unlike some therapies that simply focus on one muscle group at a time, riding makes the student use their entire body all the time. To steer, control, and adjust balance and rhythm, it requires not only physical skills but also cognitive skills for achievement and reaching goals.  Riding also creates a strong sense of always wanting to learn more, the pleasure and excitement from the horses helps the rider to work through pain and discomfort, so that the plateau that is sometimes reached in other therapies is not as easily reached in riding.

Another great thing about Equine Therapy is that it is not only about the actual riding, but the process that happens before mounting, which can be extremely therapeutic. Most lessons start off with the rider going out to the paddock with their volunteer and helping to lead the horse into the barn, finding the horses grooming tools, tacking the horse up, and then getting on.  This multi-step process is helpful with an individual who has a developmental disability, as it helps give very specific steps to what needs to happen. The process of grooming works on an individual’s range of motion and strength. Having to work with their volunteer creates a feeling of team work and respect. Last (but in no way least) is the ability for the rider to connect to their horse on a very personal level so that a feeling of trust is created between horse and rider. This creates teamwork.  Some individuals will have group lessons and this dynamic creates the need for each student to communicate between each other on the ground and on horseback. It helps to strengthen social interactions and gives the rider a feeling of being listened to and understood. Each lesson will focus on specific goals for each individual, and the instructor will gear the activities that happen during the lesson towards reaching, maintaining and working on new goals.  At the end of the ride the student is then expected to take care of their horse. This means leading the horse back into the barn, taking off the equipment that was used, and leading the horse back to the paddock and at the same time communicating with their volunteers. This helps to create a full circle effect from beginning to end of a lesson. It builds responsibility and accountability for each rider along with creating confidence in completing an activity.

Therapeutic horseback riding touches so many people on many levels. You might be a parent who is watching their child succeed in riding independently, watching their child’s confidence grow and seeing the smiles on their faces. Or maybe you’re one of the program’s volunteers. Most of these programs would not be possible without the support of volunteers who act as horse leaders or side walkers. Not only are volunteers crucial for the program, but the relationship that is formed between student and volunteer is incredible (for the student and volunteer alike), and can be a teaching tool for social interaction, friendship, and boundaries. The process of riding builds skills that can be taken off the horse and used in each individual everyday life, not only physical, but cognitive and emotional.

Therapeutic horseback riding has been utilized as a therapy since the ancient Greeks used horses for people who had incurable illnesses. Therapeutic riding can be dated back to the 17th century to help with neurological disorders and low morale. Lisa Hartel, an award-winning dressage rider from Denmark, really kick-started therapeutic riding in Europe. It spread like wildfire to North America, and the first two professional therapeutic riding centers were formed: the Community Association of Riding for the Disabled founded by J.J Bauer and DR. R.E. Renaud in Toronto, Ontario, as well as the Cheff Center for the Handicapped founded by Lida McCowan in Michigan. On November 2, 1969,  a group of forward-thinking individuals who recognized the need for an organization for therapeutic horseback riding came together. Out of this meeting, the North American Riding for the Handicapped Association was created. Today, the organization that oversees most of the accredited programs is called The Professional Association of Therapeutic Horsemanship International (PATH Intl.).  PATH Intl’s vision is “a global authority, resource and advocate for equine-assisted activities and therapies and the equines in this work that inspire and enrich the human spirit” (PATH). PATH Intl. has been growing ever since it was first founded as NARHA. It now represents people all over the world, has more than 850 centers, and supports over 54,000 men, women and children with special needs each year.  PATH was built on the foundation of improving the lives of individuals with developmental disabilities through the healing power of horses.

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I started volunteering in high school at Riding to the Top, a therapeutic riding center in Windham Maine. In 2007, I took the long and intensive training to become a PATH certified instructor and I have remained active off and on over the years. Riding to the Top is a PATH-accredited riding center, has an amazing facility, wonderful school horses, and a well-rounded, educated and kind staff. It is a place that would make any individual feel welcomed and accommodated.  As an instructor I would deal with treatment plans, helping to write goals, which would then lead to putting together a lesson program in which the goals of the individual(s) would be best met.  Other responsibilities as an instructor include organizing horses and volunteers for each rider and making sure each rider had a well-rounded and working team. The lessons consist of activities that will best help each student depending on the goals they were trying to meet. Some goals were more about working on physical barriers, some emotional, and many times it was a combination of both. For example, we could work on steering through obstacle courses, or maybe work on riding off lead, or perhaps it was about trying to remember everyone’s name in the lesson. No matter what the goals may be, it is important to keep the lessons fun, exciting and educational. “I love doing obstacle courses, the horse i ride really likes them too,” said a young girl who has ridden at Riding to the Top for a few years. I have seen many individuals and their families lives become changed through the healing power of horses. It’s an incredibly rewarding experience to be able to see not only the physical change but the emotional change that horses can have on these individuals who have to face the challenge of having a developmental disability everyday. “ He’s my best friend, and i love to hug him every time i see him”.

Sources:

PATH International. 2015 NARHA. 9/8/2015 <http://www.pathintl.org>