TOPS has had the privilege of creating a partnership with SHARE (Sexual Health and Reproductive Education) to teach students comprehensive sexual education.
For more information about SHARE, check out their website with the following link.
Autism Acceptance Month
April is Autism Acceptance Month! In celebration, we would like to highlight our community partner OCALI and the many resources offered on their website. Check out this page for current “Staff Picks” of resources developed and/or curated by OCALI staff. Included are podcast episodes, local event suggestions, featured articles, and a host of online training modules.
Additionally, this month OCALI reminds us that A + B = C, or
Access + Belonging = Community.
According to OCALI, “The concepts of access and belonging are central to everything we do.” So, what exactly do we mean by access and belonging?
When something is accessible, it means that it is easy to find and use and understand. For example, websites are accessible when they are easy to navigate and offer multiple ways for users to take in the information. Buildings are accessible when everyone can not only enter the front door but use all parts of the space. Conversations are accessible when we use clear language, avoid (or define) acronyms and jargon, and vary the style of our questions. When we think about the diversity of needs among humans and then design projects, products and spaces to embrace that diversity, we can create more welcoming and inclusive environments for all.
Belonging is a human need. In fact, some argue that belonging is a human right. In some way, shape, or form, each of us needs to feel like we belong. We need to feel that we are welcomed and accepted for who we are. This can happen in our families, friend groups, classrooms, places of worship, places of employment, or another social group. However, we don’t have a space where we feel like we belong – when there is nowhere we feel welcomed, supported, or included – it often has significant negative impacts on our quality of life.
One important distinction highlighted by popular researcher, author, and social worker Dr. Brene Brown is the difference between belonging and fitting in. When trying to fit in, we must often change parts of ourselves to be more like the group. On the other hand, Dr. Brown explains, “True belonging never asks us to change who we are. True belonging requires us to be who we are.” For autistic people who often strive to mask autistic traits, the opportunity to belong, “to be who [they] are” can provide tremendous relief.
It is well established that the quality of our relationships is strongly linked to our overall wellbeing. This is true for people of all abilities, temperaments, and preferences. We all need communities that are easy to reach and supportive of our true selves, whether or wherever we may find ourselves on the autism spectrum. For autistic people and their families, such communities can provide a lifeline of validation and social support. We invite you to join us and our colleagues at OCALI in ensuring access, nurturing belonging, and fostering inclusive communities for all.
Welcome New Staff Members!
Happy April everyone!
TOPS hired two new staff within the past six months and we wanted to introduce you to them!
1st off, welcome our new Academic Success and Enrichment Specialist, Sydney Rondeau!
If you need to get ahold of her, your best bet is through email at: sydney.rondeau@osumc.edu. She has been working within the field of disability for seven years and has been with TOPS for about six months. Sydney strives to, “coordinate inclusive academic experiences for TOPS students”, and when asked what the best part about working with TOPS is, she said, “The students!” She likes to read in her free time, and her current favorite food is falafel.
Next, is our new Career Services Coordinator, Taylor Breehl-Yugovich!
If you need to reach her, please email her at: taylor.breehl@osumc.edu. She has only been working in the field of disability for a little over a year and has been with TOPS for about three months. Taylor said that when she is not working with students, she does “a little bit of everything”, but is mainly at a job site assisting a student to meet the expectations of that work environment. She wants her students, “to feel independent and confident in themselves to accomplish the work before them.” She also agrees with Sydney that the best part about working with TOPS is getting to know the students. Taylor also likes to read in her free time, as well as hangout with friends, including her husband, explore different coffee shops, nap, and go hiking!
Finding Your Voice
As someone who’s gone through most of their life not having a voice, I cannot possibly say loud enough how essential it is for young people on the neurodivergent spectrum to learn as soon as possible to BE ASSERTIVE.
I have noticed in many situations, the neurodiverse/disabled one is more or less expected to be the “good/sweet/nice” one (VERY particularly when said individual is female.) I can indeed vouch for what it like to like to get scolded and reprimanded for raising your voice, having an opinion, and/or saying what you feel. Meanwhile, [neurotypical] NT/abled peers are always allowed to act worse and get a free pass. Not only that, in many cases, you’re actually praised for not standing up for yourself!
Why is that? Does it go along with the generalization that disabled/ND individuals are perpetual children, with no true grasp on the larger world, who need to be sheltered because they apparently will never be able to conceptualize society?
I believe in many cases the “grooming” to always be the “nice, good, docile” one in all situations starts the very instant that a child (very particularly if it’s a girl) begins to show the slightest signs of a disability…even before an official diagnosis is made.
Realizing that you have a voice and *must* be able to use it in this world we live in (and that’s not always a “physical” voice” – it can be a hypothetical voice such as a communication device, letterboards, sign language, cards, etc.) can be overwhelming at first. And I’ll say something: if you spent most of your life being the good, sweet, meek one, there are people, tons of them actually, that are very much going to attempt to discourage you once you find your voice. They’re going to try everything in their power to bring back the “you” they were comfortable with, and that’s because they benefited from your passivity and meekness. People are going to guilt trip you, and make you feel as though you’re flawed. You’ll hear it all the time. Don’t let them get to you. They benefitted from the sweet, weak-willed you. They used you for their own gain. But, there *will* be a few that will respect and encourage you once you *do* start speaking up.
I’ll give an example: at my old camp in North Carolina, we were in the camp van, and someone sitting next to me was doing something that was bothering me. Instead of going, “um…hee…hee…” like I would do in such a situation (and remembering the one or two times, back at my old school when I, trembling meekly, attempted to stand up for myself, the “teacher” (not a licensed teacher) would say, “oh Giggles (note: my name was ‘Giggles’ because you know what they say…if you don’t laugh, you’ll cry) you can’t be mean like those guys. You’re so sweet and nice. They’re mean, so it’s okay for them to do those things to you),” I took a deep breath, and said, in my tiny, trembling, timid voice, “ummm…please stop…I don’t like that.”
I instantly braced myself for the explosion to happen. And it happened. But not in the way that I was expected. Instead of the van launching into “You can’t be mean to people like that! You’re too nice! That’s not like you,” one counselor, Addie, exploded into cheers, spun around and high-fived me, and whooped, “Kerry! You GO, tough girl!” And I could see faces all around the van, with huge eyes, their jaws on the floor, shocked, and in a state of disbelief. I heard a voice coming from another camper, “wow…Kerry NEVER tells them!”
And you know who was in the biggest state of shock in the van, out of all those people? Myself. Did I actually just stand up for myself…and not get into trouble? Moreover, was I actually *praised* for standing up for myself?
So, suffice it to say: I’ve realized that contrary to what I have been told most of my life, anger and passion are indeed good emotions to have to a moderate extent. It’s good to have an outlet to channel your anger, your rage, your passion, and use it to change the world. And a good part of this is learning self-advocacy, and advocacy for the disabled/neurodiverse communities in general.
Edited from original work of Kerry Perdy
Rate & Review Books with NCBC
Welcome back to Rate & Review Books with NCBC!
This month, we hear from a Next Chapter Book Club (NCBC) that includes members who have been participating for almost 16 years!
Book or series of books: The BFG
Author: Roald Dahl
Please tell our readers a little about your book club.
“Well, Ashley and Suzanne have been here the longest,” says Carol, club co-facilitator and owner of The Alternative Center, a day program attended by most of the members in this club. Suzanne and Ashley have been participating in this Monday night NCBC since it began in 2008. While membership in the club changed slightly over the years, it changed significantly with COVID.
“We were determined to keep this going,” says Bonnie, co-facilitator and parent of club member Sara. “We really enjoy it,” she says. Bonnie and Sara first participated in a Next Chapter Book Club in the Chicago area. When they moved to Columbus in 2017, they were happy to find out that they could join a book club in the city where NCBC began.
Newer member Jaime shares that she was excited to join the book club. She and David started around the same time, in spring 2023. Until that point, all the members in this club had been women. “Then David fixed that!” says Suzanne, and the group laughs.
This NCBC meets in a bookstore, where Suzanne and her service dog Alfred join the club each week. Suzanne shares with the group what it used to be like to go to public places in her wheelchair. “There were jobs I couldn’t take after high school because I literally couldn’t get into the building,” she says. “Now buildings have to be accessible.” (Learn more about the Americans with Disabilities Act here.)
Front row, left to right: Sara, Carol, Suzanne, Jaime, David, Bonnie, Caroline. Back row: Elizabeth, Ashley. Not pictured: Alfred the service dog.
What is this book about? What happens in this book?
“The BFG [Big Friendly Giant] would blow a trumpet into the boys’ and girls’ rooms at night, and they would have happy dreams,” Elizabeth shares.
One night, after a girl named Sophie sees the BFG, he kidnaps her. “But he would never hurt her,” says David. The BFG takes Sophie so she won’t tell anyone about him.
Unlike the other giants, the BFG is friendly and refuses to eat children. The group begins to laugh about some of the wild and gross names of the other giants. “The Bonecruncher, the Gizzardgulper, the Fleshlumpeater…” Bonnie recalls and shivers with disgust.
Ashley adds, “They creep me out. I can’t.” Ashley and a few others are clearly grossed out by the giants and their eating habits.
How easy was this book to understand?
“Some of the words in this book were hard to understand,” shares Carol. Made-up words like “snozzcumber” and “whizzpopping” made The BFG both a funny and sometimes challenging book for this group of readers.
“We liked how the giants said, ‘human beans’ instead of ‘human beings’,” Bonnie says with a smile. “We could still follow the plot of the story, even with the made-up words.”
What did you like about the book?
Members of the club enjoyed the unlikely friendship between Sophie and the BFG. “As we read, we could see the friendship forming,” says Carol.
“He protected her from the other giants and kept her safe,” Suzanne adds.
Toward the end of The BFG, the Queen of England makes an appearance, and Sara shares that this was her favorite part.
Were there any parts you didn’t like? If so, what were they?
Co-facilitator Caroline says, “We did not like the descriptions of what different people taste like.” To that, everyone strongly agreed.
If another Next Chapter Book Club was thinking about reading this book, what would you tell them?
Club members said that they would suggest other NCBCs read The BFG. Added Carol, “We did laugh a lot.”
Please rate this book on a scale from 1 to 5 stars.
This club gave The BFG 4.1 out of 5 stars.
IPSE Day!
What is it? IPSE, Inclusive Postsecondary Education Day, is a day when we encourage anyone who has any connection to a higher education for students with intellectual disability to speak up about their experience. We want more people to understand the benefits of college for students with intellectual disability.
When is it? May 1st, 2024
What can I do? You can do a lot! Such as…
- Tell a friend, neighbor, or family member about IPSE
- Post pictures or videos on social media with the hashtag #IPSEday2024
- Talk to educators and inform them that college is an option for students with intellectual disability
- Reach out to your elected officials and share with them the value of IPSE
Want more information? Go to #IPSEDay Webpage
Rate & Review Books with NCBC
Welcome back to Rate & Review Books with NCBC!
This month, we hear from a Next Chapter Book Club that has been gathering on Sunday afternoons for nearly 14 years!
Book or series of books: New Love, Spilt Milk, and Potbellied Pigs
Author: Tom Fish and Jillian Ober
New Love, Spilt Milk, and Potbellied Pigs is a book of nine short stories, three plays, and three poems inspired by NCBC members who said they want to read about real life in clear language. Readers explore what it is like to move to another place, how gossip can hurt a friendship, what it means to be in love, and yes, what it might be like to have a potbellied pig. The book includes color photos and discussion questions at the end of each story.
Please tell our readers a little about your book club.
“We like mysteries!” shares one book club member. Recently, this Sunday afternoon club has enjoyed reading Nancy Drew and Hardy Boys mysteries. Over the past 14 years, these friends have read many books together. Other favorites include adapted classics, such as The Secret Garden, and The Adventures of Robin Hood, and books written by Beverly Cleary.
“I like coming to book club to talk about books,” says Sara, who is one of five members in the club. “I’m a bookworm,” she proudly shares.
“We also like to catch up and share what we’ve done over the past week,” says Becky, who joined her friend Tammy in 2010 to start this book club.
From left to right: Matthew, Adam, Tammy, Becky, Sara, Aly, Stephanie. Missing from photo: Madison.
Right now, your club is reading a book of short stories, plays, and poems. What do you like about this book?
“We like the way it is written,” says Tammy. The club likes the larger font, extra white space, and color photos. They also like that the stories are short and you never have to turn the page to finish a sentence.
Aside from a poem written by a chocolate cake, there are no other fantasy element in the book, which is a positive for this club. As Sara says, “We like stories about real life.”
Do you have any favorite stories?
“I liked A Hug in a Mug,” Stephanie shares with a smile. In A Hug in a Mug, two customers of a coffee shop become friends and share the ups and downs of life. Using the discussion questions at the end of the story, the group was able to have a valuable conversation about such things as the death of a loved one, moving away from home, and the importance of friendship.
Another club member, Aly, spots herself in photos for the story Friends Across the Hall. Authors of New Love, Spilt Milk, and Potbellied Pigs called on longtime NCBC members like Aly to serve as photo models for the book.
Are there any parts of the book that you don’t like? If so, what are they?
Members of this book club have found the plays to be more challenging because some characters have many lines while others only have a few. Although, with sports fan Adam in the group, they may decide to give Boomtown Bulldogs, a play about a Special Olympics basketball team, a shot!
Would you recommend this book to another Next Chapter Book Club?
Matthew says, “Yes,” with a thumbs up, and his fellow book club members agree.
Please rate this book on a scale from 1 to 5 stars.
This club gives New Love, Spilt Milk, and Potbellied Pigs 5 out of 5 stars!
5 Relationship Thoughts for Everyone
Valentine’s Day. A day dedicated to love and appreciation. Some celebrate the day with their significant other, friends, families, pets, themselves, or they don’t celebrate it.
Regardless, Valentine’s Day is about relationships, and relationships are challenging to navigate whether one is neurodivergent or not. They are confusing, complicated, and hard. Yet, they can also be fulfilling, inspiring, and meaningful. I happen to be an individual with autism, and I believe there is an added complexity regarding understanding, creating, and maintaining relationships for most people with Autism.
Consider dating. Does one give out their phone number after a great first date? The answer might be clear for some. However, for others, me included, the answer is not clear. My husband reminds me of this jokingly. “You didn’t give me your phone number after our first date. I wasn’t sure if you wanted to see me again.” To which I reply, “I didn’t know that was a standard thing. Well, I think we can conclude now, I wanted to see you again.”
Texting and social media add additional challenges to relationships. I am not even going to pretend I know how to navigate relationships on those platforms.
However, based on my life experiences, I will share considerations a young person or anybody for that matter might want to think about when they think about relationships (whether with family, friends, significant other, or self). Although these considerations are not solely about romantic relationships, these other relationships are important, and lessons learned can be applied to romantic relationships as well.
Please note though, I am just suggesting giving these items a thought. I am not a professional.
What qualities do you look for in a person you want to be friends with or date? I encourage the reader to pause and jot down a few before reading further.
Okay, have a few written down? Great! Couldn’t think of any? I understand. It’s hard to think of something abstract.
I provided five examples below (For these examples, I use the term friend):
- Communication.
- How does your friend communicate with you? Do they respect your desire to be quiet at times? Do they have patience if you are struggling to get your words out? Or do they tease you if you stutter and become impatient? Do they understand that you might talk a long time about something you care deeply about?
- Respect.
- Let’s say you are sensitive to certain fabrics, so you wear cotton T-shirts and jeans every day to school. Does your friend make fun of you for this? Do they say, “Your clothes are lame. Did you get them from a garbage dump?” Or do they support you. Do they say, “I was at this store the other day, and I saw this cotton shirt, and I thought of you. Let me show you it. I think you would like it.”
- If you are experiencing a meltdown and can’t meet up with them. Do they show concern for your well-being, or do they tease you?
- Trust.
- You’re in high school, and you get rides to school from your friend. They promise to take you to school every Friday. Do they follow through with what they promised? Or do they break their promises and provide no explanation. Do they say, “yeah, sorry, I didn’t feel like it today.” Or do they say, “I am so sorry. My little brother had a dentist appointment, and my mom got called into work last minute, so she asked me to take him. I totally forgot to text you with all the excitement. Let me make it up to you this weekend. I will take you out to lunch.” This person has been picking you up regularly and has texted you in the past when they couldn’t make it. You are frustrated but you feel this was genuinely an accident.
- Responsibility.
- You are in 7th grade, and you and your friend are working on a project together. Does your friend do their part of the project, or do they put it all on you?
- If you share your prized comic book, will your friend take care of it, or will you find it with food stains all over it? Similarly, do they take responsibility? If they did get stains on the book, do they accept what they did or do they blame something or someone else?
- Commonalities.
- Do you have things in common with this person?
- Do you both like sports, music, theater, comics or reading?
- How do you both feel about last-minute plans? Do you both like surprises? This can help when it comes to planning to watch a movie together or going out to eat. If one person likes to decide on something suddenly and the other doesn’t that could create conflicts. If there is a conflict, are you both open to a compromise?
- Humor. Do you and your friend share a sense of humor? Is humor important to you?
These are just some examples of how communication, trust, respect, responsibility, and sharing something in common can factor into all types of relationships. So much more could be written, but there is not enough time. So, for today I will conclude with the following:
Relationships are hard, and relationships in the teen years are especially hard. One might want others to think of them as “cool” or perhaps they really want to date. There is peer pressure and bullying (which sadly doesn’t end in adulthood). However, there can also be friendships that last a lifetime or a significant other who you really bond with and are happy to share your life.
This isn’t a how to guide to have successful relationships. People are complex. Yet, it is my hope that the people you are able to surround yourself with (sometimes you don’t have a choice) are people who enrich your life, who respect you, and treat you well. Most importantly, I hope you respect yourself and treat yourself well. It is important to be your own Valentine too.
Happy Valentine’s Day!
Provided below are additional resources regarding Autism and relationships:
Autism and Relationships: Benefits and Challenges (psychcentral.com)
What My Autism Has Taught Me About Dating and Relationships – Autism Spectrum News
Understanding Neurodiverse Relationships – AANE
Autism and Expressing Love: Relationships on the Spectrum – Autism Parenting Magazine
Rate & Review Books with NCBC
Welcome to the Next Chapter Book Club’s new Rate & Review series!
Each month, we will bring you one club’s thoughts and opinions about a book they read together. This month, we hear from a Thursday evening book club that meets in the Hilliard area.
Book or series of books: The Underland Chronicles (series of 5 books)
Author: Suzanne Collins
Please tell our readers a little about your book club.
“We eat, we read, we celebrate”, the group agrees. This close-knit group loves to celebrate together, whether for a birthday, holiday, or the finishing of a book. Sometimes, members meet at a theater to watch the movie version of a book they have read or plan to read.
Kevin joined the club in 2009. He shares, “It was a very different group at the time. We were meeting at Tim Horton’s in Dublin. When Nichele came along, it became our permanent group.”
Nichele began co-facilitating the club over 10 years ago. As Kevin said, membership in the group has changed very little since then. These NCBC members and facilitators know about each other’s lives and keep track of each other’s whereabouts. Clearly, they have all become true friends.
From left to right: Kevin, Nichele, Zach, Nadia, Bob, Taylor, and Jason (aka Jay-Dog). Missing from photo: Bec
Nichele also notes, “Our group likes dystopian novels.” Over the years, this club has read many books about dark, imaginary worlds, such as the Divergent series, The Maze Runner series, and The Hunger Games series. The latest series of books the club will soon finish is The Underland Chronicles.
What are The Underland Chronicles about?
“The Underland Chronicles revolve around a young disadvantaged boy who discovers that he is the center of a series of prophecies in the Underland where the “humans”, or Underlanders, are in constant war with the Gnawers,” Kevin said.
It should be noted that “Gnawers” are giant rats! Located below New York City, the Underland is home to humans who have adapted to live in harmony with some of the oversized creatures, while they battle with others. The main character, Gregor, is a human from “the Overland” who becomes the Underlander’s best hope for peace.
How easy is this series of books to understand?
Taylor states that the books are not easy or hard to understand, but “somewhat in the middle.” Some members nod their heads in agreement. Others say the books are easy, especially compared to other books by this author, such as The Hunger Games.
When Nadia began co-facilitating, the club was already reading the fourth book in the series. She adds, “I had to catch up on the vocabulary!”
What do you like about the series?
Speaking of vocabulary, club members agree that the names and sizes of the animals and insects in the Underland are unusual, to say the least. With 13-foot-tall “Gnawers” (rats), 5-foot-long “Cutters” (ants), and enormous “Fliers” (bats) that carry humans, the Underland is a dark and strange world full of giant, often quirky, creatures.
One of the gnawers, Ripred, is a favorite among club members. Kevin notes that he is “a likable jerk.”
Taylor and Jason “Jay-Dog” like that this story takes place in a separate world, like the arena in The Hunger Games.
Nichele says, “I like that each book keeps us coming back. They end on a cliffhanger, so you need to keep going.”
Are there any parts of the book that you don’t like? If so, what are they?
While some members say they are not bothered by the violence in these books, Taylor and Nadia point out that there are some very gory parts. Kevin notes that he disliked one scene in particular with a volcano and many of the “Nibblers” (mice).
If another Next Chapter Book Club was thinking about reading this book, what would you tell them?
Jay-Dog says that other book clubs should be ready for “action and fighting!”
Bob shares, “I’d definitely recommend it. It’s interesting to see how the technology is different in the different climates [Underland vs. Overland], how the humans, or “Regalians”, in the Underland interact with all the creatures, how alliances change, and how some of the groups of animals have such peculiar personalities.”
Please rate this book on a scale from 1 to 5 stars.
This Next Chapter Book Club gives The Underland Chronicles 4.25 out of 5 stars.
Autism: At Rest and In Motion
“An object at rest remains at rest, and an object in motion remains in motion at constant speed and in a straight line unless acted on by an unbalanced force,” (NASA Glenn Research Center, 2023).
Sir Issac Newton laws of motion are used to help people understand physics. However, can features of this law also help us to understand the relationship between structure/routine and individuals with Autism, (NASA Glenn Research Center, 2023)?
When I was younger, school provided structure and a set plan for the day. Certain things happened at certain times. For example, I woke up at a certain time, had lunch, had specific classes at certain times, and was dismissed at a certain time. Once the school day was over, I had a snack, did my homework, and on certain days, I had hockey practice. I also watched tv, showered, and went to bed: around roughly the same time. I didn’t know it at the time, but I was in a state of flow or motion. On some weekends, evenings, and breaks from school, I had more free time, and I was in a relative state of rest.
I felt comfortable when I had routine. I knew what to expect, and I could plan things out. I didn’t feel anxious. However, life being life, I experienced outside and unbalanced forces acting upon me.
Just what were these outside forces? These outside forces came in various shapes and sizes. For example, moving to a new place, moving to the next grade, starting new quarters in college, winter, spring, and summer vacation, transitioning to new jobs, someone sitting at my spot at the lunch table, a restaurant or grocery store not having something I wanted, the holidays, changes in weather, someone being late, and changes in relationships.
When these outside forces occurred, I felt anxious, sad, anger and confused. Things didn’t make sense. I also looked to others, such as my parents, for guidance and instruction.
As an adult today, I still try to establish routine and create structure. However, I am better able to respond to these outside forces and changes to my routine because of the skills and tools I learned.
As each individual with autism is different, one thing may work for one person and something else for another. I’d like to share some tools and resources that have helped me in the hopes that it might be able to help others too.
Some strategies include:
- Coping ahead. For example, if I need to go to a new place, I try to learn as much about the area ahead of time. (I know this is not always possible).
- Learning and understanding emotions. Ex: I learned about how my body reacts to emotions. For example, how does my body react when I am angry or sad? This has allowed me to better understand my emotions. Then, I know I need to change what I am doing to help my mood. These behaviors can include exercise, a hobby, or rest. When I was younger, having a relative set routine helped me even if it varied from time to time. Talking about the changes (new school year or holiday plans) ahead with family also helped.
- Deep breathing and time. Ex: When something unexpected happens, I sometimes feel upset. I close my eyes, take a deep breath, and give myself a little time to process what is happening. I notice that sometimes I feel better, and I can then address the sudden change better.
Life is unbalanced and acts upon us all the time. This disrupts our flow: our state of rest or action. However, hopefully with education for individuals with autism, family members, and community members we can develop awareness and knowledge on how we can all manage these unbalanced forces better.
Provided below are additional tools one may find helpful.
Transition Resources for Autism – Toolkits and Guides | IACC (hhs.gov)
Smoother Transitions for Children on the Autism Spectrum | Psychology Today
Sources: