“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.
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.
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.
Each week you’ll find a feature that highlights stories found on the web or social media. But we don’t want to send you filtering through the same stories you find on your Facebook feed. Piece by Peace is committed to highlighting stories that shift perspective and expose authentic realities. This will always be intended to give you quick access to potent and real stories.
[heading]Check out what we found this week![/heading]
[tabbed_section][tab title=”The Real Tragedy” tab_id=”1440512485034-1″]
TheMighty.com is another great website posting empowering stories. Of the many- this one stands out: My Child’s Disability is Not a Tragedy. Our “cog” this month, Caroline, told us about the issue she takes with people viewing her brother as a tragedy. “He’s my brother”, she says. The mother who writes this story takes that a bit deeper, describing a scene she was a part of in her local Walmart with her walker-assisted-mischevious daughter and a misinformed employee.
“The tragedy is found in how people perceive disability, and on some pretty inaccurate stereotypes and old ways of thinking”
Take from this a great story, an amazing mother, and tools for having dialogue with other people so that we can transform the social narrative from “tragedy” to unconditional love and “awesome”.
[/tab][tab title=”The Next Big Thing” tab_id=”1440512485194-6″]
Often when we’re shown pictures of a person with a disability it’s to highlight some story that surrounds their disability. It’s powerful to see a person in a wheelchair doing pull-ups. It’s inspirational to watch a kid with CP cross the finish line. Many of us shed many tears watching the student with autism score the winning shot in basketball. These stories shouldn’t go away- but the subjects of these stories shouldn’t be restricted to depictions of overcoming adversity and “tragedy”.
Have you ever heard of Jillian Mercado? She’s changing the game. Recently signed with major modeling company IMG in New York, Jillian (instagram @jilly_peppa), is proving that there’s more to an image than what is overcome to get there. It’s all people. It’s human. It’s right now. Diagnosed with spastic muscular dystrophy, Jillian shows in her modeling that a wheelchair isn’t what makes her different- it’s a part of her way of showing up to the world.
Read this article about some of her background and follow her on instagram. We’ll be sure to follow up with her!
We are right around the corner from fall. Fall brings the start of school, the drive towards election day, the reminder of constant change, and the pressure to exchange your watermelon for pumpkin spice. That’s a lot of stress.
Thankfully, there’s a free and accessible way to get some calm in your life. Every week, CTZNWELL hosts #MindfulMondays, a 20-minute meditation led by some of the best. All you have to do is call in.
So whether you’re re-evaluating IEP’s, researching how your local candidates view disabilities, or just trying to put your pants on the right direction, #MindfulMondays (and CTZNWELL) has got your back.
If you’ve been following Piece by Peace from the beginning, you’ll notice that it looks a lot different than initially planned (you can read more about it in August’s newsletter!). Now, with an emphasis on story, the organization is evolving into collective where’ll find original articles written by contributors (maybe you?), a curation of relevant pieces from other sites, and links to organizations we recommend as like-minded change makers in the world. Because we are committed to not letting perspective be sorted by expected labels, our site is set up a little differently. You won’t find one section for education, another for autism, or one for legislation. Instead, you’ll find a mix of stories that communicate a truth from the writer in a way that connects to various perspectives.
As you browse, you’ll notice some odd terms like “machine”, “cogs”, and “mechanics” to describe features of the site. Gears are kind of a thing with Piece by Peace. The gear as a symbol represents movement that’s dynamic, evolving, revolving, and interconnected. The mechanics include the people working behind the scenes- although it doesn’t yet represent all of the beings who have been a part of creating this endeavor. Your name could be here, too, as we plan to include regular and featured contributors. Our cogs page is like a wall of fame. Each month we’ll be featuring people from the community who are living Piece by Peace. These are people who by nature of their lives are making the world a better place for people with developmental disabilities. Finally, the Machine is the big deal. Each week, headlining and featured stories are curated here to give you nuggets of inspiration, a challenge to the status-quo, and connections to relevant resources. The latest content is gathered on the sub-item “The Latest”. You can find stories in the other sub-items of The Machine and can also sort content by topics (check the tags in the sidebar).
This is just the beginning. For now, new headlining stories and features will be posted weekly (Tuesday) and a summary, editor’s note, and a new cog will be highlighted each month. Be sure to follow our social media for daily short-stories, original photos, shares, and re-tweets of what we think represent game-changers for the developmental disabilities community. Of course, this project exists because of a commitment to learning. It’s encouraged to dialogue, reach out, and speak up. If you see something you like, something you don’t, or if you feel inspired to contribute a story- let us know!
The photos on the wall were of children bundled in snowsuits getting ready to take the slopes of Loon Mountain, but the air was a mix of blistering temperatures, humidity, and eagerness. Several therapists, volunteers of different ages, interns, and administrators were having their first meeting to receive an introduction to Adam’s Camp and the work they had gotten themselves into for this one summer week. “If you take what you’re getting paid and break it down hourly for the work you will be doing….actually just don’t do that”. This is what Outreach Director Bob Horney said with a compassionate laugh as he began talking about the story behind this one-of-a-kind community. “The changes, the progress you’ll see this week, the stories, that’s what it’s all about.” In a room full of people ranging from first-year staff to people with decades of commitment to the unique program, who had traveled many miles to be on the mountain, it didn’t take any more explanation to prove that this truly was about the community.
Adam’s Camp is an organization that offers week-long programs to families who have children with various developmental disabilities. It began in Colorado where it continues to operate several programs throughout the year. Today, it has opportunities not only for families but also an Adventure Camp for young adults with disabilities where they get to experience overnight summer camp- a taste of independence often reserved for kids without the label “special needs”. Outreach family programs began in 2008 in Nantucket and have since added camp weeks in Alaska and New Hampshire. The essence of Adam’s Camp is the connection that develops- seemingly in an instant when participants show up.
Concerns these families face when planning a vacation are as diverse as they are numerous. For much of the year, they’re supporting their children in special education settings, various therapies, and may even be dealing with medical and legal issues- reminders of which go up on the refrigerator as normally as a grocery list. At the same time they seek getting away as a source for calm, they also consider the consequences of leaving behind professional and natural supports. For a child who may be non-verbal, behaviorally defensive, or limited in mobility, vacation may take on a much more stressful definition than most people understand. Adam’s Camp makes it possible for families to not have to choose between a family get-away and positive supports for their children.
The framework of Adam’s Camp is already a very unique set up. Where there exists in society support groups for parents, clubs for siblings, and specialized opportunities for people with disabilities, the setting for whole family involvement is rare. This is backed by the non-profit’s values that include teamwork, integrity, and family-oriented innovation. Now, it might sound obvious that a group of people working with children with disabilities would have values such as these. For anyone who has been in “the field” for any amount of time they know it’s an unfortunate reality that this isn’t always the case. Data, results, and red tape often take seats away from compassion, social opportunity, and love. The organization’s website declares a mission making it clear that they are a commitment to the potential of all people:
“The mission of Adam’s Camp is to maximize the strengths and potential of children and young adults with special needs by bringing together dedicated families with outstanding professionals and volunteers to provide specialized therapy programs, family support and recreational camps.”
Throughout each camper’s day a team of music, occupational, speech, and physical therapists collaborate with a team of volunteers to game-plan ways to help each child work in their potential. Rather than separate music from speech and motor planning from muscle development, the entire team pulls their skills and knowledge base together. This teamwork is what makes each kid the center of attention rather than the pawn being passed between one perspective and the next (often the case in school settings). These observations may come across as speculative or biased. The actual anecdotes from participants, staff, and parents reveal just how powerful this unique dynamic is.
Adam’s Camp is named for the son of Bob and Karel Horney who was born with cerebral palsy. “Our weeks were routinized- Monday: OT, Wednesday: PT, Friday: Speech. It’s a routine so many families with kids with special needs know.” But at 5-years old, Adam had yet to take his first steps. Bob and Karel accepted a recommendation and spent a week on a mountain where a physical therapist devoted entire days to Adam’s progress. Upon return, an idea struck the family. Bob explained “we thought- what if we get the different therapists to do work together and take this 5-days thing and make it happen at home?”. An idea became one week of “camp” for families the following summer. “On the last day of camp we were all sitting at this long table- therapists, families, siblings- it didn’t matter what their role was, we were just all there.” Bob continued to describe the scene in which he witnessed his son, with the assistance of a walker and no prompt beyond his own determination, stand up and took his first steps to see his friend at the other end of the table.
While Bob claims that a having a board of directors, founding a non-profit, or even continuing this camp beyond Adam’s youth was never their goal, it seems that all of it was inevitable. Throughout the week I heard stories of kids who had never eaten food outside of the beige color scheme trying strawberries, children who never made eye-contact interactively playing with others, and siblings who had always been “socially awkward” making plans to keep in touch with their new friends. The camp staff spent countless hours preparing documentation, completing reports, and creating visual presentations so families went home with new ideas and practical documentation to bring to their home-based schools and therapists. “I think I’ve slept a total of 10 hours this week.” said a volunteer, Simone, as she laughed and played with a camper. She gave as much attention and joy- if not more- toward this camper as she did on day one.
Adam’s Camp began in 1986 and has since outgrown its capacity in Colorado. Outreach programs began to address the fact that families were flying in from all over the country to be a part of the community each summer. Other locations develop thanks to inspired families who collaborate with the organization to duplicate its framework. Last year at the Nantucket camp the first international family attended, inspiring a potential development for outreach in another country. The energy created at these camps is an obvious inspiration for families to continue attending. A practical reason is that many of these families just don’t have the services needed to improve care for their children where they live.
During the week of this 2015 program in New Hampshire there were many highlights of camper experiences. One young camper arrived with very few activities that motivated her. Some toys brought in by various staff changed this for her- supporting her behavioral and social development. On Wednesday, two groups of campers had a sleepover where therapists and volunteers were truly put to work. For many kids who might be on meds, aren’t able to independently bathe or use the bathroom, or who have behaviors unexpected to some people, the typical experience of a sleepover is quite a gift. “I think we forget sometimes that they’re still kids, or teens, or young adults. We so often are looking at their living skills and behavior development. Sometimes we need to step back and realize- ‘hey, this is actually typical for a teenage boy’ (for example)” describes camp volunteer, Kathleen. The morning after the sleepover, the oldest group of campers hosted a breakfast for the administration and board of Adam’s Camp. As a group they created invitations, menus, cooked the meal, and shared roles of hosting and serving. One board member reported “It was the best meal I’ve ever had”. Diagnoses, verbal skills, nor mobility restricted any camper from being a part of creating and hosting that meal.
While the camp is place where families get the rare experience of feeling connected, validated, and supported, it also provides a place for intensive work, vulnerability, and heart-deep developments in their lives. For this, many of the stories, names, and images remain protected by both Adam’s Camp and this writer. An intern named Caroline explains:
“You just have to see it, witness this. It’s hard to describe how life changing [this] is without seeing it.”
I got to spend the week coordinating programs for the siblings group. Stories of dramatic changes or unbelievable feats accomplished by kids with disabilities are common. The more daily aspects and experiences of caring for someone with a very involved disability is far less realized. Siblings are the resources for these stories and for demonstrations of patience, inspiration, and empathy unlike anything else. For the siblings, Adam’s Camp is a place to meet other kids who have unique experiences. Laughing about how much food their sibling can sneak, talking about the most recent hair-pull they received from their brother, celebrating their 8-year-old sister learning to use the toilet, or navigating the start of middle school while listening to their parents stress over IEP’s are all experiences generally reserved for these siblings. For some, Adam’s Camp is the first place they dare speak that they wish they got to spend time with their parents without their sibling- a thought often covered in guilt, or find hilarity in events specific to their sibling. It might be the first time they even realize that their feelings and thoughts are ones held by other kids, too. Because many siblings grow up thinking their family lives are unique to their family alone, making friends is a natural struggle. Additionally, the amount of maturity, empathy, and care for the world around them make these siblings outstanding among their peer-groups.
While much of the week for the siblings was spent on the mountain or in the pool, I snuck in a few activities to support the process of connecting through their perceived differences. One day the 6 older siblings from the group were asked to participate in a common team-building activity called the “see and be seen circle”. The kids were asked things like, “step into the circle if you like ice cream” and “step into the circle if you’re ‘special sib’ wakes up up at night”. Through statements ranging from completely for-fun to a little bit more serious, the kids got to see the many ways they were alike and some ways they were different. The game quickly turned into one of those stories Bob describes as the little moments that reveal the major impact being made in the week. “Step into the circle if you feel like you have friends who understand what it’s like for you to have a sibling with a disability.” I said. A few kids stepped in. Others stayed back quietly mumbling about how most kids just don’t get it. Then Marvell spoke up. “Shouldn’t we all step into the circle? Because we’re all friends now.” It was far beyond a 9-year-old stating that the group had become friends. He clarified for everyone that while many kids don’t get it, there do exist people who are committed to being there for each other. The entire group, for at least the week at Adam’s Camp, was just that.
Part of supporting the complex lives of people with developmental disabilities and the people who support them comes through first in understanding. Adam’s Camp is a non-profit and donations support costs of providing high-quality services to their participants as well as scholarships for families. They hold fundraisers throughout the year and more informations about these events and donating can be found on their website. As has been repeated throughout this article, a major contribution to this mission comes from being a part of it. There are many ways to volunteer with Adam’s Camp (also found on the website). This is an excellent opportunity
for students, therapy interns, and siblings of kids with special needs. Growth of Adam’s Camp seems to be much larger in need than in practical ability. It takes a lot to make sure that each program is done responsibly, effectively and with a focus on fun. Demonstrated by this organization is intelligence in making sure things are done in the right way for the framework, for the families, for the staff, and for the kids. This is a universal challenge for growing projects when inspirational energy can distract development away from purpose. There is no doubt in this writer’s mind that Adam’s Camp is surpassing that challenge and bridging the powers of love, quality, innovation, professionalism, and teamwork for a successful organization that hasn’t come close to its peak yet.
“Kids are tiring…Are we going to do this again next year? I hope so.” -two year New Hampshire volunteer, Patrick Spain.
Each week you’ll find a feature that highlights stories found on the web or social media. But we don’t want to send you filtering through the same stories you find on your Facebook feed. Piece by Peace is committed to highlighting stories that shift perspective and expose authentic realities. This will always be intended to give you quick access to potent and real stories.
[heading]Check out what we found this week![/heading][tabbed_section][tab title=”A Book” tab_id=”1439871700834-1″ id=”1439873680703-7″]
Check out this book that was just featured in the New York Times. Journalist Jennifer Senior gives an excellent review that gives both insight and some reservations. I haven’t read it yet but the review and synopsis on amazon.com show that it’s both informational and anecdotal, intelligent and relational.
The autism pandemic, in other words, is an optical illusion, one brought about by an original sin of diagnostic parsimony. The implications here are staggering: Had the definition included Asperger’s original, expansive vision, it’s quite possible we wouldn’t have been hunting for environmental causes or pointing our fingers at anxious parents.
This is, without a doubt, a provocative argument that Silberman is making, one sure to draw plenty of pushback and anger. But he traces his history with scrupulous precision, and along the way he treats us to charming, pointillist portraits of historical figures who are presumed to have had Asperger’s
Much of her criticism is on the content- too much background on some characters, not enough content on important topics (the false vaccine link, for example). However, she does outline the ways in which Silberman’s writing is a welcomed challenge- calling out, you might say- to the way society currently views autism. It seems that the book has no fault deep enough to encourage anyone to shy away and plenty of necessary originality to keep the reader turning pages.
The most moving chapter, one that had me fitfully weeping throughout, is the penultimate one, which chronicles that miraculous moment 20 or so years ago when autistic adults finally began to find their own tribe after lifetimes of misdiagnoses and alienation.
All quotations -Jennifer Senior, New York Times, August 17, 2015
Blogger, Liz Jackson, eloquently summarizes a recent dialogue that happened among a couple MLB commentators about the padded hats being warn by baseball pitchers. Liz not only maintains respect for the people she’s talking about, but also calls upon them (and readers) to consider the deeper message being felt and told when supportive/protective gear is criticized.
Her writing is potent, informative, historical, and original. Although this post is from last year, it’s a timeless read that will provoke your mind in just a couple of minutes.
[/tab][tab title=”A Sex Party” tab_id=”1439872349463-3″ id=”1439873959610-8″]
When it comes to disabilities- whether they are physical, developmental, intellectual, or all of the above- our focus often goes to all of the topics that are closely connected to the difference and not much else. Medical care. Behavioral challenges. Legislation and rights. Don’t forget that when we push the truth that people with disabilities deserve equal rights, we are pushing the fact that we are all equal participants in the human experience.
And as much as the human experience includes being able to access public spaces and receiving adequate supports- it also means touring the internet, having goals and dreams, and having sex. For many people with disabilities learning and trying new things is totally compartmentalized. The opportunity to experiment, engage, or even consider new ideas can get buried in accessibility limitations, social stigma, and lack of being educated like an equal human rather than a person with “special needs”.
I highly encourage you to check out this article on VICE about a club in Toronto that recently held a “sex party for the disabled”. There are so many ways that the able-bodied and minded community shields provocative experiences from people with disabilities. Whether this story makes you uncomfortable or not- the message is in the reality that all people have a right to determine their own comfort level.
I met Caroline a few weeks ago while working at an Adam’s Camp outreach program in Lincoln, NH. She was there as an intern and working as the administrative assistant. With hardly a week to pull together an intensive, complex, and amazing week for the attending families, I had limited time to get to know her but needed not a lot to realize her contributions to creating a more understanding and supportive world for people with developmental disabilities.
PxP: How did you get involved with Adam’s Camp? (Read more about Adam’s Camp here)
CR: I started as a sib attending camp with my family. Probably when I was 8 years old- I don’t really remember. My sister began volunteering and when I was 14 I did too. She eventually stopped but I’ve been doing it every year since then. I’m lucky to have found a program that I really believe in.
PxP: So your first perspective into the world of developmental disabilities is as a sibling?
CR: Yes, my brother doesn’t have an actual diagnosis, which has sometimes been a challenging thing to explain. There’s nothing to just say so people know what is going on. But it also means I don’t have a label to use to describe him. He’s in a wheelchair and is deaf-blind and non-verbal. He’s my brother.
PxP: Do you ever face challenges talking with people about disability?
CR: There are definitely people who want to say the right thing but sometimes what that sounds like is “I feel so bad” or “that’s so tragic, I’m sorry”. It’s not tragic. It’s who he is. Parents of children with disabilities often talk of grieving the healthy child that never was–I haven’t experienced that as a sibling. He’s just my brother, When I’m describing him to a new person I’ve realized it’s usually through his disability- what his challenges are. I’m working on talking about him through who he is as a person- what he likes to do, how I feel about him, what makes him laugh. That’s how I know him.
PxP: I think it’s really common to talk about people with developmental challenges by talking about what makes them different. What’s your take on that?
CR: There’s definitely a sense of wanting understanding. It’s hard to get people who don’t “get it” to understand something if you don’t talk about the realities and challenges of disability. I wonder sometimes what it would be like to not mention his disability at all when I talk to other people. Is that truly focusing on him/talking about him as person-first or is that leaving out a valid aspect of his story? It’s not a simple answer.
PxP: That is a really strong point. It also seems like a kind of thinking that is unique to siblings. I know from Adam’s Camp that the viewpoint from siblings, including you, contributes to creating a better understanding. Are you planning on, or currently, doing other work that is related to developmental disabilities and siblings?
CR: My thesis that I’m working on for my degree is actually about the positive outcomes that can result from being a sibling of a person with developmental disabilities. The vast majority of research on siblings is negative–siblings are “forgotten” in light of their brother or sister’s needs, they carry a lot of stress, they are expected to be caregivers and potentially to care for their sibling when their parents are no longer able to. There is a lot of evidence for negative psychological impact. From personal experience and my interactions with the sibling campers at Adam’s Camp, however, I really believe that there are a lot of positive things that can come from being a sibling of someone with developmental disabilities. Siblings are resilient, empathic, loving, more likely to choose helping professions. I have no doubt that growing up with my brother has made me a better person, and I know I’m not the only one–so that’s what I’m writing my thesis about.
I go to a really small school, and it can be hard to study and talk about disability topics because it’s not even something that’s really included in the curriculum and few people have the experience I do. Autism is barely mentioned in my psychology classes, let alone other disabilities. I try to incorporate my experience in the best ways I can—I took a class on the psychology of prejudice and did a project on ableism, or wrote a paper on theory of mind in autism research in developmental psychology. I noticed especially through the process of selecting my thesis topic that it’s really not something that people talk or learn about, at least at my school. I had a hard time finding a professor to advise me on the project because none of them had any experience that was remotely related. It’s a wake-up call, because disability has been such an integral part of my life.
PxP: What would you say to someone who doesn’t have any involvement to describe what it has been like to work with people who have developmental challenges?
CR: You have to see it. Especially at Adam’s Camp, the progression we get to see in a week is amazing. I worked with a camper who was mostly non-verbal except for the occasional word, then, on the last day of camp, she said a full sentence: “I want swing.” I worked with another camper who had severely palsied arms–at archery, he shot the bow and arrow with his feet. It blows my mind. At the Nantucket camp this year a camper ate a strawberry. That doesn’t seem like a big deal, but it really was. It’s hard to describe how life changing that is without seeing it and understanding where the camper came from and how far they’ve come.
I am student at the University of Southern Maine majoring in Elementary Education. After graduating I plan on getting my masters in Speech Pathology.
What is your relationship with neuro-diversity?
I have witnessed more love and beauty with children who are neurologically diverse in my life, than I thought I ever would. From having a neighbor with autism, to becoming very close with a girl with Down syndrome who was in a school production with me. They have taught me many different outlooks on life and showed me the true beauty in life. Each student that I have worked with that are neurologically diverse are no longer people I am helping, but my friends.
How has your life been impacted by your friends and being involved with special needs communities?
My friends have taught me more about myself than anyone else has. Being involved in the Special Olympics, at the state and local level, has also taught me a lot. When I see kids and young adults running their hearts out or jumping as far as the can, it always puts a smile on my face. For them it isn’t about the color ribbon that gets placed around their neck, it is about being able to have a ribbon and stand on the podium, and every single competitor gets to do that. It shows me that it isn’t about what place you come in, but more about how much fun you are having in your life.
There is one special girl who has never ceased to amaze me. It was Annie’s first year at Windham High School. This year, I was in our schools production of A Funny Thing Happened on the Way to the Forum and worked with Annie through the entire show. One time that really stuck out to me with Annie was the time that she really started to come out of her shell. She was sitting backstage by herself, and I was looking all over for her thinking she had not come to rehearsal today. I walked backstage just in case she was sitting back there and she was. I sat down next to her and started to talk to her about everything and anything that had come to my mind. She would give me short answers at first, but then the longer we kept talking, she would tell me these stories about her favorite holidays and what she had done in school that day. Every day we would talk more and more and more about a bunch of different things that happened in school with her or at home. She would always put a huge smile on my face and would make me laugh so much that it hurt. She taught me, not in words, but her happiness that everything in this world is beautiful and that no matter how different something or someone may look that they are special and bring joy to many people. I never realized how much of an impact that I was having on Annie until, one night after our chorus concert I had people coming up to me saying how they have never seen someone be able to work so well with a girl with a disability and have the largest smile on my face that anyone could ever see. Every time someone came up to me to say how much joy we brought to them when they saw us smiling and laughing at each other I would get tears in my eyes, because I wasn’t being with Annie as a helper, I was standing with Annie as her friend. For me, being able to work with children and teenagers with neurological disabilities, is one of the greatest things that I have been blessed with being able to do. Whenever I am with a child or teenager they never fail to brighten my day and put a huge smile on my face. These children and teens brighten my life and everyone’s life around them. No matter how hard times may get for them, they are always smiling and ready to succeed.
As a student, you clearly had a huge impact in creating a positive space for neuro-diversity and in inspiring others to do the same. What advice or wisdom do you have for kids in high school in terms of becoming more engaged, understanding, and friends regardless of neurological/cognitive ability ?
There isn’t a special way or a certain way to talk to children with neurological/cognitive abilities. Talk to them about things that you know they like, or ask them questions to be able to get the conversation going. Once, you have talked with them a couple times, they usually come running up to you to talk to you about something that happened or something that they did. My advice to high school students is too look at them as if they were one of your friends. They want friends too, they don’t enjoy sitting by themselves or having no one to talk too in school. They are the nicest kids in the entire world and no matter how hard or bad of a day you are having they will always brighten it and make you laugh.
Head boys lacrosse coach at Scarborough High School
Ed Tech at Spring Harbor Academy of Spring Harbor Hospital
How did you get involved in the community supporting kids with autism?
We had a boy with autism play lacrosse in our middle school program and with the help of some great people involved with our program he had a great experience. Then one day when I was leaving a meeting I was introduced to another parent who had a boy with autism and we encouraged him to have his son come out for the team. So we have had 2 boys playing in our program for 6 years now.
What is a favorite story or message you have of the positive influence of neuro-diversity in your role as coach or ed tech?
One of our players who graduated this year had been a huge part of our varsity team since his sophomore year. And while he never played in a varsity game, he cared more about the team and his friends than any kid I have ever met. This season did not end the way we had hoped, as we lost in the western Maine final after winning the state championship the previous 4 years. Teddy took the loss hard and needed a little time to himself but before we left the locker room after the game, he came in and gave the most heartfelt speech I have ever heard. He told the team that he was proud to be on the same team with them, that he was proud of their effort everyday and that most importantly as his friends. Teddy was a kid who his freshman year kept to himself and by his senior year was the coolest kid to sit with in the cafeteria at lunch.
What message do you have to other coaches or athletes who hope to be more inclusive of players with disabilities?
The biggest thing I would say to any coach or athlete is that these kids, while they may require some different strategies for practice and games, coaching them is not any harder. The thing that I have found is they give back so much more than they would ever require. My players learned about themselves and what was really important to them from playing with these boys. There is nothing I have done as a coach that I am more proud of, no win, no game and no state championship than seeing these boys become teammates and most importantly friends with their peers.