• Stephen’s Place provides Positive Living Solutions and Community

    Jul 12 • Local Resources, Newsroom • 483 Views

    Stephen’s Place – Family, Community, Home

    A genuine community to call home in Vancouver, Washington

    By John Krejcha

    Stephen's PlaceWhen first entering through the double doors at Stephen’s Place, visitors are met with an inviting reception area, a high vaulted ceiling with open beams and a view of a stunning living area complete with a brick fireplace. With spacious rooms, wide hallways and tall ceilings, it’s a warm, vibrant and inviting atmosphere for guests, staff, and the residents who call Stephen’s Place their home.

     

    Stephen’s Place is a supportive, not-for-profit Independent Apartment Community (IAC) in Vancouver, Washington, specifically designed to provide positive living solutions for adults with complex language, learning, and cognitive disabilities so they may live life with meaning and dignity to the fullest extent possible.

     

    The two-story building and campus has 41 units and currently houses 11 residents, including five women and six men between ages 22 and 62. Apartments are different sizes depending on each resident’s need. There are studios and one bedroom apartments with small to full kitchens. Each apartment has its own restroom with accessible shower and a 24/7 monitoring system for independence and enhanced safety.

     

    Stephen’s Place is completely private pay. The rent residents pay is based on apartment size and also includes meals, utilities, programs and caring staff.

     

    Residents enjoy homemade daily meal services cooked by professional chefs who specialize in creating healthy delicious meals for those with dietary restrictions. Other amenities include a beautiful community dining area, a media and gaming room, gym, library, a private courtyard with screened-in porch and a custom-made greenhouse where residents participate in gardening and growing their own food.

     

    covered patio

     

    The first vision for this community residence happened over a decade ago, in 2005, when Wayne and Joan Kuni, founders of Kuni Automotive were considering semi-independent living options for their adult son with a developmental disability.  They wanted their son to have community, independence and friends in a safe and supportive environment where he could live happily and age in place with support.

     

    Their nationwide search brought them to an IAC called Casa De Amma in San Juan Capistrano, Calif. Although the living space was impressive, the community was already filled to capacity with a long waiting list. The idea of creating this type of community residence closer to their home in the Pacific Northwest seemed like a huge undertaking, but the Kuni’s knew that it would be life changing and transforming for families seeking a better life for their sons and daughters with developmental disabilities.

     

    In November 2005, the Kuni’s established the Wayne D. Kuni and Joan E. Kuni Foundation. The mission of this private foundation is twofold: to support medical research, especially for the diagnosis and treatment of cancer, and to support and enhance the lives of adults with developmental disabilities. Finding a safe, easily accessible, friendly neighborhood location convenient to Portland and downtown Vancouver took some time, but it was worth the wait. Their vision came true when the doors for Stephen’s Place opened in February 2015. The community is named after one of the Kuni family sons, who passed away as a young adult. Their other son is living there today and has the honor of being the first founding resident.

     

    Ribbon Cutting at Stephen's Place

     

    Heather Stenberg, Executive Director of Stephen’s Place, talks about the Independent Apartment Community (IAC) model. “An IAC is just as it sounds; a program that supports independence as much as possible. We have apartments where residents have privacy in their bedrooms and bathrooms and offer a community where residents aren’t isolated or alone. Each resident has a unique set of goals and a schedule which includes a wide range of activities as well as jobs and volunteering.”

     

    Stephen’s Place has 24-hour support including medical and is designed intentionally for residents to be able to age in place if they choose. Heather explains, “Our vision for Stephen’s Place is that each resident can live with us through the end of life. We understand there may be some instances where that goal is not realistic, but hope that our vision and goals for the growth of Stephen’s Place after we are full can provide solutions where Stephen’s Place still fully supports those residents.”

     

    Heather was asked about some of the differences between other assisted living options and Stephen’s Place. She explained, “Many options provided to those in the Intellectual/Developmental Disabilities (I/DD) community are not as specific to the individual and don’t offer privacy in the living setting (e.g. sharing a bedroom or bathroom, no doors on rooms, etc.)”

     

    “What is many times considered the ideal for the I/DD population is to live in an apartment community among those who don’t have I/DD. In reality, this can be isolating and lonely for many. At Stephen’s Place, community represents having a peer group, social opportunities that provide the ability to naturally grow friendships, and support that can often be overlooked in the greater community. Our goal is to provide a home and individualized support to assist each resident to live their fullest life, and we believe in relationship-based care because this gives us a deeper understanding of each of our resident’s needs.”

     

    residents dining at Stephen's PlaceThis is a feeling that the residents share as well. Ellen, a long-time resident, shares, “I like living at Stephen’s Place. My parents took good care of me, and now the staff does as well. I like playing cards with my friends here and all of the activities I can do.”

     

    Another resident, Sandy shares, “I like to walk around and talk to my friends who live here. I like to do the gardening. I like it when people come and visit.”

     

    For both residents and staff, Stephen’s Place is more than just a housing option. Meal time is like sitting down with family.

     

    Liz expresses, “I feel so loved! I have friends, and it’s safe.” She is good friends with Michael, another long-time resident who adds, “I am happier than I was at my own home. This is a great place to live if you want to be independent.”

     

    Stephen’s Place provides very intentional programming for their residents which allows them to experience independence in a dynamic way.  Each resident goes through a person-centered planning process which includes personalized plans for Fitness & Movement, Music & Creative, Life Skills, Job Coaching and Volunteer Opportunities.

     

    Stephen’s Place also has a comprehensive, full-day program available for residents and non-resident guests to attend each Monday and Thursday. The day program was started originally for the residents but has been opened up for other local adults with developmental disabilities to attend for a nominal fee.

     

    residents enjoying Stephen's PlaceHeather explains, “We want to provide adults with developmental disabilities in our community the opportunity for additional friendships, peer relationships and access to community activities. This also gives families access to respite time while their loved ones participate in physical, social and creative activities. The people who take part in the day program can build off things that interest them, explore new opportunities and many times discover a new passion.”

     

    That also includes special events and gatherings hosted by local nonprofits and community groups. Heather shares, “Stephen’s Place was a gift to the community from the Kuni family, and it would be a shame not to share it with the whole community. We are all family here, and family opens up their home to other family members.”

     

    In December 2016, the Autism Serves Kids Care Club, a youth volunteerism program of local Vancouver-based nonprofit, Autism Empowerment (AE), participated in holiday caroling. In April 2017, Stephen’s Place became the new home for AE’s monthly support group for adults on the autism spectrum, and in May, AE’s Autism “Rocks” group hosted a community-wide rock painting party for residents and guests.

     

    Autism Serves Kids Care Club Caroling in December 2016 at Stephen's Place

    Other groups use their conference room for meetings and on June 3rd, 2017, a Vancouver-based support group, Special Celebrations rolled out the red carpet with a fancy all-abilities prom for teens and adults.

     

    “At the end of the day, the favorite programs for most of our residents are social opportunities to hang out with their peers, to talk about their days, and to enjoy each other’s company. It is comforting to see that the relationships that have developed grow and are not forced due to proximity.”

     

    There are many plans for the future as well. Heather shares, “We have lots of ideas but nothing written in stone yet. We have talked about building a trail on the property, maybe independent cottages for even greater independence or a separate activities building. As our community grows, we will see what their needs are and try to match those needs.”

     

    The sense of home is something that can be seen and felt when you first walk through the doors. It doesn’t matter if you are a resident, staff member, day program participant or an organization partner, one thing is for sure, you are family.

     

    Stephen’s Place is currently accepting new resident applications and welcomes prospective families to take a tour. Regarding growth, Heather explains, “The intention is to add residents slowly. We know when you add somebody new, it will change the dynamics of the group. By adding people slowly, we can help each of the current residents with that transition. We want each person to be part of the community and part of the Stephen’s Place family.”

     

    Please note that for the privacy of Stephen’s Place residents, some names have been changed. This article first appeared in the Summer 2017 print edition of Spectrums Magazine which can also be read online at this website or through Issuu.

     

    To learn more about Stephen’s Place and/or to schedule a tour:

    Please visit us online at: www.StephensPlace.org

    Visit us in-person: 501 SE Ellsworth Road, Vancouver, WA 98684

    Call us: (360) 984-3600

    No Comments on Stephen’s Place provides Positive Living Solutions and Community

    Read More
  • fort vancouver library card

    That Great New Library Card Smell

    Jul 12 • Newsroom • 199 Views

    That Great New Library Card Smell!

    By Kay Richardson

     

    Is there anything like that smell?

    colorful train - courtesy punit-sharma pixabayIt was library day for grandson Hunter and me. We try to (and usually do) go to the library every other Wednesday. Our outstanding central library building is simply a wonderment of design, information and imagination. We look forward to our library visits for different reasons, but none less important than the time we spend together in appreciation of those attributes.

     

    His first intent always is to visit the DVD section to see if there are any new train videos he hasn’t seen yet. (Hey, whoever is producing those, keep it up!)

     

    I decided it was time for Hunter to have his own library card. All these years we’ve been doing this, I’ve been checking out his materials with my card, which is okay, but I wanted him to have his own card. I’m not sure what kind of reaction I expected from this. But the process was exciting to me.

     

    The librarian was nearly as excited as I was when I made the request. As I filled out the necessary paperwork, she told me she wanted to give him the usual schtick she gives all kids receiving their library card. Ok, I told her, but he has a bit of autism going on, and I can’t guarantee you’ll get any eye contact or reassurance he knows what you’re talking about. He probably will get it, but you, yourself, just might not know that for sure.

     

    So I corralled him from the DVD section for the orientation.

     

    library cardThe young woman behind the desk could scarcely hide her exuberance. It took about 28 seconds:

     

    “Hi, Hunter! This is your very OWN library card! Now, it’s important you keep it in a safe place and always bring it with you when you come to the library because if you want to check out books, you can’t if you don’t have it. So, now, would you sign the back?”

     

    What Hunter probably heard:

     

    “Hi, Hunter! This is your ……..blah blah blah………..sign the back.”

     

    He eagerly signed the card because it was a really cool Sharpie pen, but needed help spelling his last name. Then as quickly as he came, he was trotting toward the stairway to heaven, er, the children’s floor where all the cool hands-on stuff (meant for 0-5-year-olds) is. I collected the card, smiled and thanked the librarian and her misty-eyed assistants standing nearby.

     

    Kay RichardsonKay Richardson is a Clark County native and proud grandmother of five. You can often see her with her grandson, Hunter at Autism Empowerment-sponsored activities, as well as Special Celebrations. She works in the newsroom at The Columbian and in her spare time enjoys sewing, hiking and gardening.

     

    This article was originally published on page 24 of the Summer 2017 print issue of Spectrums Magazine. You can read the online version of the entire magazine at this link: Spectrums Magazine

     

    No Comments on That Great New Library Card Smell

    Read More
  • John Elder Robison

    Division in the Autism Community – What’s Next for Us?

    Jul 7 • Local Resources, Newsroom • 378 Views

    Division in the Autism Community – What’s Next for Us?

    By John Elder Robison

     

    One of the greatest divisions in the autism community is between seekers of a cure, and opponents.  Someone new to the autism community could easily be forgiven for asking how this might be. Autism is, after all, a disability.  Why would anyone be opposed to curing it?

     

    Autism is not a disease.  It’s a developmental difference that is part of us for life.  In that way, autism might be compared to congenital blindness, deafness, or a missing limb.  Those are other disabilities people generally live with for the rest of their lives.

     

    In the broader disability community, there are significant differences of opinion when it comes to assistive technologies.  For example, some deaf people embrace cochlear implants while others reject the idea just as firmly.  If there is one area of broad agreement, it is that the people with the disabilities should have the right to choose assistance or not.  Nothing should be forced upon us. The past few years have seen widespread acceptance of the idea of self-determination which is a very good thing.

     

    That brings us to the autism controversy.  Autism is – at its heart – a communication disorder.  Autistics may have a different view of autism, but that is the centerpiece of the current definition. Some autistic people may be strong communicators and gifted thinkers, and their ability to chart their own course is beyond doubt.  What about autistic people who are not able to communicate very successfully?  There are some people in our community whose cognitive disabilities preclude effective communication and prevent self-advocacy.

     

    Autistic people with such severe disability are generally identified in early childhood.  The response of parents has typically been to ask for help with their children.  When faced with an autistic child many parents have reacted with distress, calling for a cure for autism and eradication of what they see as a terrible disability.

     

    Public awareness of autism has increased sharply in the past 20 years.  We now have a generation of young adults who have grown to adulthood after being children those parents wanted so much to cure.  Some are grateful for their parents’ advocacy, but many are angry. They reject what they see as harmful interventions forced on them by misguided parents, and they reject the concept that they needed to be cured.

     

    Those young adults have led the move to position autism as a civil rights issue.  They believe most of our presumed disability is actually a mismatch between how we are and the expectations of modern western society.  They have done a great service by identifying instances of discrimination and marginalization.

     

    Alongside those advocates, there is a group of autistic people who take a very different position.  They see autism as a disability, and they wish they could be rid of it.

     

    Finally, there are parents of autistic kids with very severe disability.  As those kids grow to adulthood, the parents face hard choices – who will take care of my child when we are gone?  They debate housing and support issues and often find themselves in conflict with autistic advocates with sharply opposing views.

     

    It’s very hard for members of the three groups to find common ground.  People tend to see autism through the lens of personal experience.  An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non-verbal, cognitively disabled, and self-injurious.

     

    The autistic lawyer or engineer who can say “I am autistic and proud to be different” is likely exhibiting a very different set of feelings from a more disabled autistic person who has never been able to hold a job or form satisfying relationships.  It’s important to be mindful that both sets of feelings exist in the community.

     

    It’s as if people are seeing totally different conditions, and indeed some say the spectrum is too diverse for that reason.  Yet the science shows that similar biological differences lie at the foundation of both forms of autism.  While there is no one “autism gene,” many of the genes we have associated with autism tend to affect people at all points on the spectrum.  Other genes – like those associated with Fragile X syndrome – tend to be associated with both autism and intellectual disability.

     

    Here’s where we stand with autism today:

     

    Parents have led the fight to get autism services into preschools and schools. Thanks to their advocacy most states cover some level of autism service.  The range of services is still very limited, but the landscape is a far cry from the one I faced as a kid in the 1960s.

     

    Some parents opened a Pandora’s box when they asked where autism came from.  When autism was first recognized in the 1930s, it was seen as idiopathic; in other words, there was no known cause.  Parents had a hard time accepting that uncertainty; some began making associations between life events and the observed onset of autistic symptoms.  That led to some parents blaming vaccines for causing autism.

     

    Today I see the vaccine issue as symbolic of a breakdown in trust in our public health authorities.  The fact is, people need something to believe in.  When medical science cannot provide good answers. pseudo-science and superstition take hold, with potentially disastrous results.  Advocates call that out today, even as the science community has yet to provide satisfactory answers the public can understand.

     

    Science tells us that toxic metals can make people appear autistic.  Injuries and disease can have similar effects.  Do those causes account for most cases of autism?  Most science says no, and the underlying cause for the rest remains unexplained except to say that autism appears to have been woven into the human genome for a very long time.

     

    For a number of years I have taken the position that it does not matter how we came to be autistic.  What matters is what we do with our lives now.  We can push for social accommodations, and we can encourage research to solve our medical problems.  We can look for places to work and live that will be most comfortable.

     

    Advocates have made a powerful case for the employment and accommodation of autistic people.  The emergent neurodiversity movement has made great strides in getting schools and employers to see the unique contributions autistic people make to society and the workplace.

     

    Self-advocates and parents are both active in calling out and fighting discrimination against autistic people.  This is hugely important.   Self-advocates, in particular, are speaking out against abuse of autistic people by caregivers.  In some cases, those caregivers are hired help; help; other times they are family.

     

    We’ve seen conflict with parents who believe they are the best advocates and caregivers for their children. The fact is, severely disabled people are most likely to be abused by family members.  That said, most family members are not abusers.  Parents may see themselves as unfairly indicted while self-advocates point to the statistics and their undeniable truth.  We should be mindful of the reality that statistics won’t tell us what happens in any particular home even as they advise us to be cautious.

     

    Advocates have pushed hard for self-determination.  To that end, they have opposed guardianship and institutionalization of autistic people in group homes.  They rightly say both lead to abuse.  Parents respond that some children cannot make choices for themselves and that leads to a discussion of whether that’s true, or whether the issue is parenting or communication failure, or simply imposing the parent’s will on the disabled person.  Needless to say, emotions run high.

     

    Shame remains a huge problem in the autism community.  Parents may be unable to accept the reality of their autistic child, and they may spend a lifetime in denial or misguided efforts to cure.  Studies and life stories have shown us how destructive that can be yet the problem remains.  Autistic people are harmed by growing up with the stigma of being broken or less than other children.  Feelings of inferiority and poor self-image follow many of us well into adulthood.

     

    We’ve seen the emergence of a social model of autism that paints many of our challenges as a mismatch between ourselves and society.  Some people now see autism as primarily a social issue, but social solutions are not all that’s needed for the more challenged members of our community.

     

    For those individuals the medical complications associated with autism are paramount.  Recent studies have shown sharply reduced life expectancies for autistic adults. We live with a wide variety of real and challenging medical conditions like epilepsy, anxiety, and intestinal distress.  For all the money we’ve spent on autism research this past decade, we’ve made precious little tangible progress on those fronts.

     

    In some discussions I see autistic advocates present the evolving social model of autism as “the correct understanding,” when in fact it complements but does not replace the medical model that has existed since the 1930s.  The same is true for embracing the idea of neurodiversity.  We mustn’t confuse the reality of disability for many of us with the fact that some of us have rare gifts too.  Said another way, we should embrace our exceptionality but not deny that the suffering and challenges many of us feel are also very real.

     

    For a wide variety of reasons, it’s hard for individuals at various points on the autism spectrum to see and appreciate the positions of others in the community.  Yet we must accomplish this if we wish to form a coherent group that can use the power of our numbers.  The way we are today, outsiders see us advocating for so many disparate things that it’s hard to figure out what we – as a community – want.  If we speak in one voice, we can ask for a range of things, and get them all.  Individual voices, speaking alone, will continue to accomplish little.

     

    Rather than attack each other, our energies will be better spent building community and pushing legislators, insurance companies, and researchers to actually help solve our problems.

     

    John Elder RobisonBIO:  John Elder Robison is an autistic adult and advocate for people with neurological differences.  He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Department of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (a school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Va., and a visiting professor of practice at Bay Path University in Longmeadow, Mass. You can reach John through his website at www.johnrobison.com

    This article was published in the Summer 2017 issue of Spectrums Magazine. It was republished with permission from John Elder Robison and was originally published at www.jerobison.blogspot.com.

    No Comments on Division in the Autism Community – What’s Next for Us?

    Read More
  • Passion Projects

    Jul 5 • Local Resources, Newsroom • 317 Views

    Passion Projects – How to Engage Your Child This Summer

    By Aaron Blackwelder

     

    A Passion for PokemonAs school begins to wind down, my wife and I (like many parents) scramble to figure out how to keep our boys engaged in learning over summer rather than allow them to zone out in front of screens all day. Granted, our boys will spend an exorbitant amount of time gazing into the mesmerizing, soft glow of computer, Nintendo DS, iPod, and television screens, but we do what we can to foster learning, engagement, and responsibility during the summer months.

    Passion Projects

    A movement that began in software companies like Google has recently leaked into the classroom. However, this trend does not have to be limited to the classroom or workplace. Something this powerful can be easily incorporated into the home.

    A Passion Project is an activity that caters to the individual’s interests. It involves research, planning, and creating. It can be anything so long as it draws from personal interest. In his book Drive: The Surprising Truth About What Motivates Us, Daniel Pink suggests people are driven by three key components:

    • * Autonomy – The ability to govern oneself.
    • * Mastery – The path to get better at something.
    • * Purpose – To develop a transcendent meaning to something.

    When all three are satisfied, people feel empowered to be creative (2009).

    In her book, SHIFT THIS!, Joy Kirr describes them as “authentic, student-driven, and inquiry-driven… (and) helps cultivate lifelong learners.” (2017) Passion Projects can help your child learn how to learn and potentially pave the path to an exciting career or long-term hobby.

    Passion Projects can help your child learn how to learn and potentially pave the path to an exciting career or long-term hobby.

    Based on this idea, Passion Projects are taking center stage in work and school. This year, I introduced Passion Projects to my students, and they have quickly become an addition my students love. This summer, I plan to have our family engage in our own Passion Projects.

    Current Passion Projects some of my students are developing are:

    • * A website with student-written articles highlighting our school’s sports teams.
    • * YouTube channel on favorite books.
    • * Writing a personal blog on the student’s perspective of current events.
    • * Creating a board game on a favorite book, movie, video game, etc.
    • * Developing a new series of characters for a favorite show, game, or movie.

    Find out your children’s interests. Encourage them to develop those ideas. Challenge them to take risks and make mistakes. This project should be about getting in touch with personal interests and creating something to share with others. It is about growth and learning. It can be shared with family and close friends or it can be shared globally via the internet.

    My oldest son recently completed a Passion Project for school (his teacher called it a Genius Hour Project) on the history of Pokémon. He had so much fun and it never turned into fights to get him to work. This summer, he plans to take his love for Pokémon and create his own YouTube channel where he can share his love and knowledge of Pokémon.

    Aidan and LolaAs for my youngest, my wife and I are planning to get him a puppy. We are going to set up a blog space so he can journal his summer. We want to see him share how he learns to take responsibility for a dog. We plan to share his blog with family and friends.

    Ultimately, the purpose is to create something personal and meaningful while learning something new. It doesn’t have to be done online. It can be done at home in posters, projects, or crafts. It can be a lemonade stand. The sky is the limit.

    I recommend adults, parents and extended family members join the fun and create their own Passion Projects. Share them with your children or peers, talk about them over meals, and encourage one another along the way. Discuss where you are in the process and talk about setbacks, challenges, and accomplishments. I plan to take the time to become a Google Certified Teacher. My wife is looking forward to some gardening. Making it a family endeavor models the importance of Passion Projects and can give families something to talk about.

    Summer activities don’t have to cost a lot of money. A little creativity and scheduling can make the time worthwhile for everyone.

    If you want more information or ideas on Passion Projects visit the following websites:

    Finally, we are excited to see and hear about the Passion Projects you and your family have worked on this summer.

    Please share your projects with us at spectrums@autismempowerment.org

    or www.facebook.com/spectrumsmagazine

    and we may feature your project on our website or in a future issue of Spectrums. If we get enough response, we’d like to share Passion Projects each issue!

    Works cited:

    Kirr, Joy, SHIFT THIS!: How to Implement Gradual Changes for Massive Impact in Your Classroom, San Diego: Dave Burgess Consulting, Inc. 2017. Print

    Pink, Daniel H. Drive the Surprising Truth about What Motivates Us. New York: Riverhead, 2009. Print.

    Aaron BlackwelderAaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He is married and the father of two boys with Autism who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog “Thinking 101” where he shares his ideas about education.

    Visit: mrblackwelder.wordpress.com

    This article originally appeared in print in the Summer 2017 issue of Spectrums Magazine published by Autism Empowerment. It was the cover feature for the magazine.

    No Comments on Passion Projects

    Read More
  • Chase Severin

    We Know Who We Are by Chase Severin

    Jul 4 • Newsroom • 450 Views

    Chase SeverinWe Know Who We Are.

    by Chase Severin

     

    We hear the whispers.

    We know the jokes are about us.

    We know people think we are stupid.

    We know who we are.

    We are smart, nice and we matter.

    We are angry.

    We know who we are.

    Our Autism does not make us different.

    We know who we are.

     

    Chase Severin is 14 years old and wrote this poem as a project for his 8th grade Humanities class. Chase lives in Vancouver, WA with his older brother, Robert Jr., younger sister Tricia, and parents, Robert and Rhiannon. He enjoys video games, Dungeons & Dragons and making friends at Autism Empowerment’s Teen & Tween Social Club (which he looks forward to every month). He has a 1st Degree Black Belt in Taekwondo and wants to be a video game designer. 

    This poem was originally published in the Summer 2017 issue of Spectrums Magazine from Autism Empowerment. Each issue features at least one piece in a series called “Stories from the Spectrum – Autism from an Autistic Perspective”.

    No Comments on We Know Who We Are by Chase Severin

    Read More
  • trapped

    Human Trafficking – Protecting our Most Vulnerable

    Jul 1 • Local Resources, Newsroom • 759 Views

    Human Trafficking – Protecting our Most Vulnerable from the Unfathomable

    by Tara O’Gorman, MSW

    Michael is a 15-year old teenager in southwest Washington.  He loves reading, anime, and online gaming, typical of many teenagers.  Michael also has Asperger’s Syndrome and an anxiety disorder, so his parents were thrilled when he finally showed interest in interacting with friends online.  He has always struggled with friendships, so his parents thought this was a great way to begin to interact safely and comfortably for him without the heavy expectation of social interaction that had always been difficult for Michael.  He is just happy his parents are finally giving him some space and not always harassing him about going places and meeting new people.   His online friends understand what a drag parents can be.  One of them, Jason, even offered to let him move in so he could get away from his overbearing mom and dad.  It’s totally cool, he said.  My parents said you could stay in our extra room.

    Sarah, from a Portland suburb, met David in a chat room through an app on her phone.  She is a 14-year old girl with some developmental disabilities and has always imagined she would grow up to be a princess, swept away by her loving prince.  Her parents are very protective and have talked to her about stranger danger and safe touch.  But David is not a stranger.  He has told her all about himself, and they have been chatting online for almost three months.  He is older… 16… but he loves her and wants them to be together.  He even asked her to send photos of herself.  She was a little uncomfortable with the idea, but no guy has ever even looked at her as a girlfriend before, so she’s sure David is just being romantic.  He really is her prince.  They are planning to meet in person at the mall this weekend.  She knows her parents will not allow her to date, so she is telling them she is going to the mall with her best friend.

    What Sarah and Michael, and their parents, do not know is neither of these teenagers is interacting with safe friends online.  Both have been drawn in by human traffickers and are being groomed for a terrifying, and potentially deadly, venture into a dangerous world they are neither prepared for, nor will they be allowed to leave voluntarily.

    Human Trafficking Blue CampaignWhat is Human Trafficking? 

    According to the National Human Trafficking Hotline, “human trafficking is a crime involving the exploitation of someone for the purposes of compelled labor or a commercial sex act through the use of force, fraud, or coercion [which] affects individuals across the world, including here in the United States… [and] affects every community… across age, gender, ethnicity, and socio-economic backgrounds.”(2017). The practice has been called modern-day slavery, and January has now been dubbed Human Trafficking Awareness Month in the United States.

    There are two primary types of human trafficking.  Labor trafficking and sex trafficking.  Stop Child Abuse Now (SCAN) of Northern Virginia explains child trafficking as “the enslavement of children by force, fraud, or coercion for the purpose of commercial sexual or labor exploitation.  Children are tracked for use in sex industries such as prostitution, pornography, sex tourism and forced marriage. They are also used for domestic work, sweatshop work, migrant farming, begging and armed services.” The National Center for Missing and Exploited Children (NCMEC) receives 10,000 reports of child sex trafficking each year.

    While many believe the myth that the trafficking of humans only involves citizens of foreign countries, “Portland [Oregon] has earned a reputation for being a hub of human trafficking, in part due to its prime location along I-5.  Some have called Portland the largest hub for juvenile trafficking in the country, but a lack of reporting makes it hard to quantify the exact number of victims in Portland and other major trafficking cities across the country.” (SCAN, 2017)

    Statistics

    According to the Polaris Project website, there have been nearly 21 million victims of human trafficking, globally, with more than 25% of those victims being children.  More than ¾ of those documented child traffic victims are homeless, runaway, or ‘throwaway’ youth, and the average age for initial involvement in trafficking of children is 12-14 years old, and, “in 2016, an estimated 1 out of 6 endangered runaways reported to the National Center for Missing and Exploited Children were likely child sex trafficking victims.  Of those, 86% were in the care of social services or foster care when they ran.” Recent statistics show males to be victims of approximately 40% of trafficking situations.  

    At-Risk Groups 

    While men, women, and children of all ages and backgrounds are victims, there are groups considered to be at higher risk for trafficking.  Children in the foster care system, runaways, drug abusers, abuse or neglect victims, persons with low self-esteem, and children of addicts are all considered at-risk for trafficking.

    Mental and physical disabilities are also considered risk factors for potential trafficking victims.   Specifically, risk factors for those with disabilities include vulnerability to authority figures who would take advantage of those with social and communication skill deficits, lack of protective resources, and a diminished capacity for understanding personal safety and the motivations of other people. 

    Traffickers groom potential victims early – gaining trust, making false promises, and otherwise manipulating individuals into believing lies about love, protection, a better life for families, and financial gain.  These promises and lies often eventually evolve into isolation, threats, and violence that keep victims from contacting authorities or fleeing trafficking situations if they are physically able.

    There is little research on specific trafficking dangers to those with Autism Spectrum Disorders (ASD).  The connection is easier to make when sexual abuse statistics are examined.  In one Canadian study, 95 adults with ASD were interviewed regarding sexual abuse.  An astounding 78% of those interviewed admitted to being involved in sexual scenarios under coercion or pressure. (Medical Daily, 2014)

    Dr. Gloria Arroyo-Grubbs, a Chiropractic Physician in Vancouver, WA adds, “With over 20 years of healthcare experience, specifically with individuals with special needs, I frequently discuss sex education topics to parents and young adults. In the past four years, I have seen more information on an increase in sexual abuse towards children with special needs, specifically due to parents not teaching the difference between appropriate or inappropriate touching, appropriate relationships, and sex education. This is not parents being naive but thinking that the children and teens would understand the information they receive from school, TV and peers, as most do, thus leaving them more vulnerable for sexual victimization. As a physician that works closely with children and adults on the spectrum, it is often a topic that I discuss with parents on a weekly basis.”

    Warning Signs 

    Parents, educators, and the law enforcement and medical community are often in the best position to recognize the warning signs that a person may be groomed for or already involved in human trafficking.  Some warning signs include habitual running away, chronic fear and anxiety, an inability or an unwillingness to explain where the person has been, having older boyfriends or older friends or seeing a drastic change in types of friends.

    Unexplained money or expensive gifts, keys to unknown locations or hotel rooms, tattoos or brands, STDs or unexplained bruises or broken bones are all warning signs that should be explored by authority figures concerned about a child or vulnerable adult’s well-being.  

    Human TraffickingWays to Protect and Discuss Danger

    In Ben Wolford’s article, Sex Abuse Risk Higher for People with Autism, Prompting Calls for Better Sex Education, Dr. Shana Nichols shares, “Explicit instruction on appropriate sexual behavior is more crucial for people with autism ‘due to difficulties recognizing red flags and interpreting thoughts, feelings and behaviors of others’.”  (Medical Daily, 2014)

    Sarah Attwood, in her book Making Sense of Sex: A Forthright Guide to Puberty, Sex, and Relationships for People with Asperger’s Syndrome, (2008) mentions “studies carried out in different countries have shown time and time again that it is most often those young people who have scant information who become involved in early sexual experiences, often making mistakes they later regret.  Those who are well-informed tend to delay their first sexual encounters, and when they do become sexually active, they have the confidence to negotiate effectively with a partner, and use protection.  To put it simply, whatever the age of our children, sexual ignorance is not bliss.” 

    It is important to teach children about healthy relationships and boundaries.  Good touch vs. bad touch conversations can be uncomfortable but necessary.  Children and adults with ASD are often very trusting of ‘friendly’ people and cannot always sense danger or motivations.  Talk to them about human trafficking, what it means, and who to trust if they feel pressured or threatened in any way. 

    Protecting children from trafficking means protecting them from predators who attempt to lure victims through online access, chat rooms, and social media.  Know which social media accounts your child is using, insist on access to accounts and passwords for safety reasons, be ‘friends’ with your child on social media in order to understand what they may be seeing and doing online, set up guidelines for online access and safety, and use Internet filters to prevent access to pornographic or other harmful websites.

    Brenda Huffstutler, LMSW, a Crime Victim Advocate and Mental Health Clinician with Lutheran Community Services in Vancouver, Washington suggests, “As parents, the best way we can prevent victimization is to talk to our kids. Know where they are going, find out who their friends are, and check up on them.  If they aren’t comfortable talking to you, have another adult/mentor available for them to connect with. It is also crucial to know what your child is doing on the Internet at all ages and to limit this accessibility. There are so many apps, ways to hide history, create dummy accounts, and have access at all hours. If the Internet settings are confusing to you, take them to an electronic/phone store and have them assist you in setting parameters you are comfortable with.”

    If a child has been a victim, parents should be sure police, prosecutors, attorneys, doctors, and therapists are aware of and trained to understand the specific needs of disabled/special-needs persons.   There are specific trafficking organizations in most areas that can guide families to resources. 

    Points to Consider

    Observers often ask: why not just leave? Fears of “being hurt or killed or family being hurt or killed, shame, guilt, fear of exposure, extortion through photos, nowhere else to go, isolation, and Stockholm Syndrome (identifying with captors/pimps and having conflicting feelings for them)” often keep victims in trafficking situations that may seem like a choice to some.  Victims may be financially dependent on traffickers or simply have nowhere else to go. (Domestic Minor Sex Trafficking, n.d.)

    For parents of children with ASD or other disabilities, hyper-vigilance is a part of our life.  We constantly worry about our children’s day-to-day interactions, their emotional stability, and their future.  We are self-described ‘helicopter parents’ and are always looking to protect our vulnerable children from bullies, inadequate access to the education system, and a world that is not always designed for their special needs.  Human trafficking is a very real danger for our children, whether they are minors or legal adults, and we must face the danger as we have any other obstacle in their paths.  Education and vigilance are already on our side.

    Some of the simple, yet powerful, steps discussed above could literally save the lives of our most vulnerable.

    If you have been a victim of trafficking or suspect that someone you know is in danger or needs help, contact the National Human Trafficking Resource Center at 1-888-373-7888 or Text INFO or HELP to BeFree (233733) for advice and access to resources in your area.  Local police, shelters, and developmental disability agencies are also excellent resources for advice on how to escape human trafficking and how to seek justice for victims.

    Resources for Parents and Caregivers: 

    • I Am Jane Doe. Documentary film about young girls rescued from sex trafficking, and their parents’ fight to sue the website on which their children were sold.  http://www.iamjanedoefilm.com
    • Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger’s Syndrome’ by Sarah Attwood
    • Girls Like Us: Fighting for a World Where Girls Are Not for Sale by Rachel Lloyd
    • Sold by Patricia McCormick
    • Human Trafficking: Man’s Inhumanities by Thom Winckelmann
    • Feirie: Fit for the Journey, Mitzy Danae Leeper, (360) 772-1740 or mitzy@iamfeirie.com, offering massage, bodywork, trauma touch therapy, and a variety of services for victims of trafficking, sexual abuse, PTSD and more
    • “At Planned Parenthood Columbia Willamette we screen patients for intimate partner violence during their visit, including asking them if they have been forced to have sexual activity or have been sexually coerced by another person. If someone discloses partner violence or sexual coercion we offer specific resources to help them get the support they need and deserve.” -Austin Lea, Community Education and Outreach Coordinator, Austin.Lea@ppcw.org

    Citations: 

    A Parent’s Guide to Human Trafficking (2013). SCAN. Retrieved from https://www.scanva.org/wp-content/uploads/2013/06/HumanTrafficking_English.pdf

    Attwood, S. (2008). Making sense of sex: a forthright guide to puberty, sex and relationships for people with Aspergers syndrome. London: Jessica Kingsley.

    Domestic Minor Sex Trafficking (n.d.). Retrieved from https://www.clark.wa.gov/sites/default/files/CommercialSexualExploitationofChildren.pdf

    Human Trafficking Hotline (2017). Retrieved from https://humantraffickinghotline.org/type-trafficking/human-trafficking

    Human Trafficking of Individuals with Disabilities Fact Sheet (2014). Retrieved from http://dodd.ohio.gov/HealthandSafety/Documents/Human%20Trafficking%20Fact%20Sheet%2010%2017%2014.pdf

    I  Am Jane Doe (2017). Retrieved from http://www.iamjanedoefilm.com/

    Polaris – The Facts (n.d.). Retrieved from https://polarisproject.org/facts

    Wells, D. (2017). On the Track: Sexual Exploitation along the I-5 Corridor. The Gate. Retrieved from http://uchicagogate.com/2017/01/09/on-the-track-sexual-exploitation-along-the-i-5-corridor/

    Wolford, B. (2014). Why People With Autism Are At Higher Risk For Sexual Abuse. Medical Daily. Retrieved from http://www.medicaldaily.com/sex-abuse-risk-higher-people-autism-prompting-calls-better-sex-education-298430

    This featured story about Human Trafficking was originally published in the Summer 2017 issue of Spectrums Magazine published by Autism Empowerment.

    Tara O'Gorman HeadshotTara O’Gorman, MSW, joined Autism Empowerment’s Board of Directors in 2016. She is an independent consultant and advocate with SpectrAbilities, dedicated to working with individuals and families living with Autism Spectrum Disorders (ASD) and consulting for organizations within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is the proud mom of two sons, including an Asperger’s teenager.

     

    1 Comment on Human Trafficking – Protecting our Most Vulnerable

    Read More
  • school bus

    Transportation and Special Education Students

    Jun 30 • Newsroom • 203 Views

    Transportation and Special Education Students  

    What rights do students have? 

    By Diane Wiscarson, Attorney at Law 

    Transportation for Special Education StudentsSchool transportation is frequently a source of confusion, and even frustration, for students with Individual Education Programs (IEPs) and their families. When does the district have to provide transportation? Who decides how and when transportation occurs? Is transportation on my child’s IEP? How do I know what my rights are for my child’s transportation? Can my child have an aide on the bus? These are a few questions that come up every year before school starts, and for summer services.  

    Under the Individual with Disabilities Education Act (IDEA) transportation “as may be required to assist a child with a disability to benefit from special education” is a related service to be discussed at an IEP meeting. Transportation includes travel to/from school, travel between schools, and travel in and around school buildings. This article focuses on travel to/from school, and your child’s right to transportation.  

    Transportation decisions are made at IEP meetings on an individual basis. If a student with an IEP cannot get to/from school the same way as non-disabled students for a disability-related reason, then the district must provide transportation for the student. This generally means door-to-door transportation, both ways, between home and school. If the student needs transportation to benefit from education, the district supplies that transportation.   

    Types of Transportation 

    Once the decision has been made by an IEP team that the child needs transportation, school districts choose the type of vehicle to transport the student. There are a variety of vehicles that a district could use – school buses, whether long or short, taxi cabs, mini-buses, vans, or in a rare circumstance, even a privately-owned car.  

    Districts can contract with an outside provider for a student’s transportation, but that does not transfer the transportation obligation to the contracting agency. The responsibility for transportation remains with the district. Although the district must consider any parent input related to a child’s transportation, there is no requirement that a district transport a child via the parent’s preferred method. 

    Reimbursement in Lieu 

    The district does not get to choose the parent’s car as the student’s transportation. Parents sometimes prefer to provide transportation for their child. In that case, mileage reimbursement is a great option. Districts use the GSA federal transportation rate, which is set yearly and is currently $0.535 per mile. Most districts have a specific mileage reimbursement form for parents to use, and the reimbursement covers round trips to/from school. 

    Least Restrictive Environment (LRE)  

    The concept of LRE refers to a child’s access to the general education curriculum and general education peers. LRE applies to transportation too! If a child can be successful on a general education bus, even if needed supports have to be provided, then the child need not ride to/from school on a special education bus.  

    Aides or Other Adults on the Bus 

    Aides are often needed to support students during transportation. An aide may be needed to facilitate communication, monitor medical conditions, ensure safety, manage disruptive behaviors, or help teach or practice a new skill a student is learning related to transportation to/from school. Also, if a child has the support of a nurse while at school, then a nurse is likely also needed during transport.   

    These decisions must be made by an IEP team. If an adult will accompany a student on the bus or other form of transportation, then the additional support must be listed specifically on the child’s IEP. 

    Equipment Needed  

    When a child needs additional equipment or accommodations for transportation, those items or adjustments must also be provided by the district.  Accommodations could include specific temperature requirements or alternate bus routes. Equipment might be a harness, a lift, restraints, a seat-belt, a car seat, phones or walkie-talkies, or a ramp.  

    Districts must provide whatever is required to safely transport a student to/from school, even if inconvenient or expensive.  

    Extracurricular Activities  

    When a district offers transportation for extracurricular activities for general education students, the district must offer transportation to the same activities for special education students. This is true even if the transportation will require the district to use a special education bus, or employ another method of transportation such as a taxi cab or provide mileage reimbursement to parents if the parents choose to drive the child to the activity. 

    Again, transportation must be listed on the child’s IEP as an accommodation. Then, that accommodation should extend to all school activities requiring transportation. This would include outings like field trips, sports events, outdoor school, work or internship opportunities, and community activities or service.  

    Not my Neighborhood School 

    Not all special education services are available at all schools, so districts sometimes “regionalize” services and programs. This means that children with specific needs not served at their neighborhood schools might be bused to a different school, outside of their neighborhood, to receive required special education services.  

    When a child will attend a school other than his or her neighborhood school, the transportation is generally a special education bus, but any transportation option could be utilized, at the district’s discretion. Thus, some children also travel to schools at district expense via taxi cab or secure transport. 

    Here also, mileage reimbursement to the family is likely an option that could be discussed with the district. Parents sometimes choose this option to spend more time with their child, or because of personal preference. However, in all circumstances, this is a parent choice and cannot be required by the district. 

    Can my Other Children Ride the Special Education Bus Too? 

    If your child is riding a special education bus, then the answer depends on the district.  For example, Portland Public Schools has a “hitcher” policy which allows siblings to ride to school on the special education bus if there is space available. Other districts have a strict policy that prohibits siblings from riding on the special education bus. 

    This is a matter very specific to the particular district in which you reside. Check with your school district to find out what their policy is, and then follow any request policies if this is an option that might work well for your family. 

    Special Education Buses Leaving School Early    

    Frequently, special education students are dismissed early from classes, and the special education buses are seen leaving the school with all students on board before the dismissal bell ever rings. Is this legal? The answer depends on the reason the students are leaving school early. 

    For a student who needs extra time to transition to the bus after school, or a student whose anxiety or sensory needs are aggravated by all the activity in the school halls, more transition time is a great accommodation. This extra time accommodation should be documented on the child’s IEP and implemented to serve the child’s needs. 

    All too often, however, “self-contained” classroom students are ALL dismissed before the bell, and special education buses depart before the rest of the students are dismissed from school. Unless there is a child-specific reason for this, the United States Office of Civil Rights (OCR) has determined this to be an illegal practice by districts. It discriminates against students with disabilities by costing them instruction time, social passing time, and the regular experience of school. 

    If your child is leaving the classroom before the last bell, carefully investigate the reason why to determine if this is something your child needs. If it is, make sure it is on the IEP, and if it isn’t, ask that the practice stops immediately, or consult with OCR. OCR for the region is located in Seattle, and you can review OCR policies and other information at http://www.seattle.gov/civilrights/

    Summary  Diane Wiscarson

    If you have concerns or questions about transportation, be sure to discuss those issues at your child’s IEP meeting. Once that discussion has occurred, make sure all transportation arrangements are specifically documented on your child’s IEP. 

     

    Bio:  Diane Wiscarson worked her way through the special education system on behalf of her son, and in so doing, found her passion for helping other families navigate special education and the law. Since graduating from law school in 1996, and founding Wiscarson Law, she has helped thousands of Oregon and Washington families obtain appropriate services and placements for their special needs children in public schools and education service districts in both states. For more information call 503.727.0202, or go to www.wiscarsonlaw.com. 

    This article initially appeared in the Summer 2017 issue of Spectrums Magazine.

    No Comments on Transportation and Special Education Students

    Read More
  • From the Publisher – Spectrums Magazine Summer 2017

    Jun 29 • Local Resources, Newsroom • 189 Views

    Spectrums Magazine Summer 2017 issue features include: Passion Projects • Stephen’s Place • Creating Visuals Instantly for Unpredictable Activities • Division in the Autism Community • 7 Sensory Friendly Summer Activities • Human Trafficking – Protecting our Most Vulnerable • We Know Who We Are – Stories from the Spectrum • To Disclose or Not to Disclose • Autism on the Seas • That Great New Library Card Smell • Transportation and Special Education Students • Realities of Being an Autistic Therapist • Provider Partner Directory • Autism Empowerment Events – Featured Autistic Guest Writers: John Elder Robison • Chase Severin • Judy Endow

    by Karen Krejcha

    On June 3rd, 2017, Autism Empowerment celebrated our 6th anniversary as a nonprofit organization. When I look back to June 3rd, 2011 and the drive my family and I took to Olympia to file our paperwork and start the 501(c)3 process, I realize it has been quite a journey.  

    Our original vision for Autism Empowerment was contained in multiple writing journals and centered around four foundational pillars of positivity: Accept, Enrich, Inspire and Empower.  For me, it was a calling that centered around people  – children, teens, and adults on the autism spectrum – and the families, friends, educators, and professionals in their community.  

    Although Spectrums was not specifically part of our original plan, something similar was part of our initial vision. We may have underestimated the amount of work, time and cost it would take but the result has provided a brilliant vehicle for connection, community, and empowerment.

    Trying to be everything to everyone is an impossible undertaking, even when you’re an optimist. The divisiveness in our autism community makes it difficult to bring passionate people together respectfully to create an action plan for maximizing strengths and minimizing challenges. But try, we must.

    One of my favorite pieces in this issue by John Elder Robison highlights many of the challenges that a divided autism community faces. As an autistic woman, mom and professional, I ask you to read, reflect and ask yourself, what can you do to contribute positively?

    Maybe it is advocating through writing like Chase Severin does in his poem, We Know Who We Are. Perhaps it is protecting our most vulnerable by making our local community aware of the dangers of Human Trafficking. It could even be by building a community campus like Stephen’s Place where adults with developmental disabilities are living purposefully and independently.

    Our cover story this issue teaches about Passion Projects – a popular movement in the workplace, the classroom, and hopefully in your home as well! When we bring passion and purpose together, individually and collectively, we will do amazing things.

    Looking for something fun to do? We’ve got you covered with 7 Sensory Friendly Activities, but just in case the unexpected happens, we’ll teach you how to Create Visuals Instantly for Unpredictable Activities.

    Thank you for being an Ambassador for Acceptance of All Abilities and supporting our nonprofit publication! We look forward to seeing your Passion Projects! Enjoy!

    Karensigfirst

    Karen Krejcha

    Executive Director & Co-Founder, Autism Empowerment
    Editor: Spectrums Magazine

    (You can also find this article on page 4 of the Summer 2017 issue of Spectrums Magazine. Print copies were distributed throughout the Portland metro and southwest Washington area in July 2017. You may also read online here.)

     

    No Comments on From the Publisher – Spectrums Magazine Summer 2017

    Read More
  • service dog

    Autism Service Animals – Required in the IEP? NOT!

    Apr 24 • Newsroom • 312 Views

    Autism Service Animals – Required in the IEP? NOT!

    Which law applies? ADA or IDEA?

    By Diane Wiscarson, Esq.

    Girl with service dogService animals, usually dogs, can provide excellent support for people with Autism Spectrum Disorder and/or other disabilities. Service animals are individually and specifically trained to perform tasks that help a person manage and navigate their environments. These tasks can include anticipating seizures, signaling self-stimulation behaviors, alerting to important/alarming sounds, providing deep pressure sensory input, interrupting self-harm behaviors, and preventing elopement, among others.

    Divide Among School Districts:

    In recent years, there has been disagreement among school districts regarding service animals accompanying students to school. While some districts have welcomed service animals at school with open arms, reasonableness and training, others have simply refused to follow the law and allow service animals to attend school with their persons.

    What is the difference between the schools that allow service animals and those that do not? The surprising answer seems to be which law is applied by the school district – the Americans with Disabilities Act (ADA) or the Individuals with Disabilities Education Act (IDEA).

    Solution?

    A recent United States Supreme Court case cleared up the confusion between the two laws and, in the case of service animals, which law applies. In Fry v. Napoleon Community School District, issued in February 2017, the United States Supreme Court agreed that service animals are an ADA issue, rather than an IDEA/special education issue. You can read the entire case and the United States Supreme Court’s opinion and look at other documents that were part of the case at http://www.scotusblog.com/case-files/cases/fry-v-napoleon-community-schools/.

    Americans with Disabilities Act:

    The ADA protects those with a disability from being discriminated against on the basis of that disability. Known as an “access” law, the ADA guarantees, among other things, access to education for students with disabilities. This generally means that accommodations are provided to a student, which allows access to education. A simple example is a wheelchair ramp for a wheelchair user. A reasonable accommodation might also be a nut-free lunch table for a student with tree-nut allergies.

    School districts that have applied the ADA to service animal requests have allowed service animals, almost without exception. There may have to be discussion regarding who provides the “handler” for the service animal, but that is a separate issue.

    Individuals with Disabilities Education Act:

    The IDEA requires school districts to write an Individualized Education Program (IEP) for every student identified with a disability, when that disability impacts the student’s education, and the student is in need of specially designed instruction. The IEP must be individually written to address that particular child’s educational needs, and must be reasonably calculated to enable a child to make progress appropriate in light of the student’s particular circumstances.

    The most prevalent argument for keeping service animals out of school is that “It is not on a student’s Individualized Education Program” (IEP) and therefore not required for a student to receive a “free appropriate public education” (FAPE). The individually written IEP must contain all of the services and supports a student requires to receive a FAPE. The school district logic is, if the student does not need a service animal to receive a FAPE, then the school does not have to let the service animal through its doors.  

    There are many documented instances when a parent has advocated for a student to have an Autism Service Dog at school, only to be informed by the rest of the IEP team that the service animal is not necessary at school. Therefore, since the service animal is not “necessary,” the service animal is banned from the school.

    Who Gets It Right?

    As the United States Supreme Court ruled, Districts following the ADA are complying with the law. Under the ADA, school districts that allow service animals to attend school with their student correctly understand that IEPs, FAPEs, and other special education considerations miss the mark when talking about service animals. Service animals are allowed to attend school with their person without regard to any special education laws, via the ADA. The ADA requires schools to allow children’s service animals to accompany them to school, and the IDEA is not discussed in this context.

    Where Are Complaints Filed?

    Despite confusion as to which law applies to disputes about service animals at schools – the ADA or the IDEA – parents must pick one or the other in order to file a complaint in the right forum. ADA cases are filed in the United Stated District Court (a federal court), in the region where the family lives. Complaints about IDEA violations are filed with the State’s education agency, and result in an administrative hearing. In Oregon, complaints are filed with the Department of Education, and in Washington, the Office of Superintendent of Public Instruction.

    Even Courts Were Confused:

    In several instances, children who were not allowed to bring a service animal to school filed lawsuits in federal court claiming a violation of ADA. In other cases, courts have found that service animal issues should be analyzed under the IDEA rather than the ADA, and then dismissed the case from federal court.

    Other parents have tried to have the service animal put on a student’s IEP as an accommodation. Some school districts have told parents that since the service animal is not “necessary for the student’s education” there is no reason to discuss whether the service dog can attend school with its student. These districts simply refuse to allow the service animal, often without any discussion. 

    Trying to figure out which law applies to service animals and how to educate school districts so that students can have their service animals at school has been very frustrating for families. Where service animals been have excluded from school, some animals have unfortunately lost the bond with their student when the student was forced to attend school without them. Other service dogs sit at home, waiting for their student to return from school, unable to provide services to their person during the school day.

    How Does This Help Families?

    Before the Fry case, most parents and education attorneys were hesitant to file cases related to service animals, because they can be lengthy, expensive, and complex. And, judges were seemingly uncertain as to which law to apply, and whether the complaint should be resolved in a judicial or administrative proceeding.

    The law is much clearer, thanks to the Fry family. Service animals accompanying children to school fall under the ADA. There is no need to claim that the student “needs” a service animal, as is required for other accommodations put into place on an IEP for a student. Under the ADA, service animals can attend school with a student as a reasonable accommodation, and no permission or discussion of “need” should be required.

    If a school district refuses to allow a service animal at school with its student, pursuing a legal remedy will still likely be lengthy and frustrating, but at least the law is now clear about where families need to go to obtain help from the legal system and that the ADA is the correct law to be applied.  

    Diane WiscarsonDiane Wiscarson worked her way through the special education system on behalf of her son, and in so doing, found her passion for helping other families navigate special education and the law. Since graduating from law school in 1996, and founding Wiscarson Law, she has helped thousands of Oregon and Washington families obtain appropriate services and placements for their special needs children in public schools and education service districts in both states. For more information call 503.727.0202 or go to www.wiscarsonlaw.com. 

    This article originally appeared in the Spring 2017 issue of Spectrums Magazine available in print and online. 

    No Comments on Autism Service Animals – Required in the IEP? NOT!

    Read More
  • A Journey of Music and Magic

    Apr 23 • Local Resources, Newsroom • 541 Views

    A Journey of Music and Magic – The Joel Suzuki Series
    and a launch of the Wavemaker Order

    By Karen Krejcha

    Since the time we last interviewed Brian Tashima in our Winter 2016 issue, a lot has been going on for the Vancouver, WA-based author and musician. Not only has he done his usual rounds of school visits and trade shows, he’s also managed to prepare an extensive launch campaign for Legend of the Loudstone, the brand-new third volume of his Joel Suzuki series (formerly known as the Spectraland Saga). Fortunately, Spectrums was able to convince him to sit down for a few minutes to talk about that campaign, which includes a special initiative to help the autism and disability communities.

    Okay, first of all – why the name change? Didn’t you like “The Spectraland Saga”?

    I did, but as I was working on Legend of the Loudstone, my editor pointed out that this series is, at its core, really all about Joel Suzuki, the protagonist. It’s his journey that forms the backbone of the whole story. So when you couple that with the fact that most of Loudstone takes place in a setting other than Spectraland, it just sort of made sense.

    I suppose “The Joel Suzuki Series” is also easier to remember than “The Spectraland Saga.”

    I would agree. Last time we talked, I remember saying that I wanted this series to become a movie franchise. Afterward, I thought, “You know, I can just imagine what’s going to happen: a family will go up to the box office. The dad will say, “Can we get two adults and two children for Specter…uh, I mean, Septra, um, I mean…forget it, kids. Let’s just watch “Cars 5” at 7:30, okay?”

    “Four tickets for Joel Suzuki” does sound a lot simpler.

    Exactly.

    Since we’re on the subject of big plans, why don’t you tell us about what else you have going on?

    Well, to help celebrate the launch of Legend of the Loudstone, my son Torin and I are starting up something called the Wavemaker Order, which is named after the group of music-magicians in the Joel Suzuki series. Basically, the Wavemaker Order is the official fan club for the books. It’s free to join, and you get access to the Wavemaker Archives, a members-only page on the Joel Suzuki website that contains all kinds of cool exclusive content, like deleted scenes, custom artwork, and more. It also provides an opportunity for fans of the books to bond over a common interest.

    Beyond that, though, our goal is to turn this group into a force for positive cultural change on a global scale. You see, for every Joel Suzuki book that is sold, one dollar is donated to Autism Empowerment, a nonprofit organization dedicated to improving the quality of life for people and families in the autism community. Thus, the efforts of Joel’s fans to spread the word about the series – through writing reviews, recommending the books to friends, and encouraging them to join the Wavemaker Order – will translate directly into support for all of Autism Empowerment’s various programs, services, and activities. Also, the more Joel’s name gets out there, the more it will help improve the image and representation of people with disabilities in the mainstream media.

    Basically, we want the Wavemaker Order to be like a street team, except that it would be about more than just promoting a product, it would be about striving to make the world a better place for people of all abilities. A real-life hero’s journey, if you will, for everyone involved.

    That sounds very cool. And quite ambitious, as well.

    Oh, believe me, I’m full of big plans. Not only do I want to fully fund all of Autism Empowerment’s activities – and build them a campus along the way – I also want to create a separate charitable foundation that supports other worthy causes as well, especially those with an emphasis on diversity, disability, and the arts.

    To be clear: I’m not saying “buy these books so I can do all this cool stuff.” I’m saying that if enough people enjoy the Joel Suzuki series and find it worthy of their time and money as a source of entertainment, I’ll make sure I give back to the communities that supported it on a commensurate scale. In other words, I’ll do what I’m already doing, just more of it. I won’t blow it all on new guitars (laughs).

    Maybe just a little of it.

    Right.

    Let’s talk a bit more about Legend of the Loudstone. You mentioned that it takes place somewhere other than Spectraland, which was the primary setting of the first two books?

    Mostly, yeah. In this story, Joel, his co-star Felicity, and their Wavemaker friends from Spectraland have to travel to a faraway place called the Mono Realm to track down some escaped fugitives. The Mono Realm used to be six separate states with individual leaders, but then one of the leaders decided to conquer all the other states and turn them into a single unified country. This leader then forces everyone to conform to one particular standard of appearance, which of course makes things a little tricky for Joel and company when they get there. There’s also a brewing rebellion, some complications involving the fugitives, and a sort-of double love triangle involving Joel, Felicity, and two of the other Wavemakers. Basically, everything you need for a fun little adventure.

    For those who haven’t already gotten their hands on a copy, where can they go to buy one?

    They can go to my website at www.joelsuzuki.com, which contains links to my Amazon pages as well as sample chapters. My website is also the place to sign up for the Wavemaker Order – just go to www.joelsuzuki.com/join. If you want to pick up the books locally, they’re available at Kazoodles toy store in Vancouver and Another Read Through bookstore in Portland.

    Is there anything else you’d like to share with Spectrums readers?

    The most gratifying part of this whole journey has been hearing from kids who say that this series has changed their lives in a good way, whether it’s by encouraging them to read or by helping to improve their self-esteem. I’m really happy that what started out as a simple request from my son to write him a book has turned into something that has had such a positive effect on others. So to everyone who has supported Joel and company over the past few years, I just want to say: mahalo (Hawaiian for “thank you”).

    This article initially appeared in the Spring 2017 issue of Spectrums Magazine.

    No Comments on A Journey of Music and Magic

    Read More
  • From The Publisher – Spectrums Magazine – Spring 2017

    Apr 22 • Local Resources, Newsroom • 185 Views

    Spectrums Magazine Spring 2017 issue features include:  A Journey of Music & Magic • The Big Deal about Small Talk • Autism Does Not Define Me • Consumer Advocacy in Autism Research • Swindells Resource Center • Choose Your Battles • Understanding Neurodiversity • A Parent/Teacher’s Guide to an IEP Meeting • Autism Service Animals in the IEP? • Autistic Burnout and Aging • A Spectrum of Support • Family Navigators • Parents, Precision Medicine, Autism and Genetics • Provider Partner Directory • Autism Empowerment Events

    by Karen Krejcha

    It was April 22nd, 2016 when I officially signed the paperwork for Autism Empowerment to acquire Spectrums Magazine. What a year it is has been! Today, Spectrums is a nonprofit program of Autism Empowerment. The issue you have in hand is expected to reach over 25,000 readers in Washington and Oregon. Our online version will reach thousands more worldwide.

    For those of us like myself who are autistic and an autism parent, April brings great anxiety and heightened emotion as we brace ourselves to hear what kind of messages about autism and Asperger’s will be shared by other autism organizations, support groups, families, and advocates.

    At Autism Empowerment and Spectrums, we promote Autism Acceptance as well as Acceptance for All Abilities. We promote it every single day of the year.

    Autism Empowerment collaborates with a lot of positive groups and hopes that people will financially and emotionally support organizations that support Autism Acceptance, advocacy, meaningful and accessible supports and positive systemic change.

    We encourage you to critically think and ask yourself what kind of message you want youth and adults who identify as Autistic, Aspie or on the autism spectrum to see and hear?

    We are listening, we are reading, we are watching… and we are internalizing.

    Check out the diverse range of articles in this issue and let us know how we’re doing. With your support, we grow stronger. Whether you’re a parent new to diagnosis (or trying to choose your battles), a teen looking for a fun book series, interested in advocacy and autism research, experiencing burnout or seeking a strengths-based approach to therapy, these articles (and more) are in our Spring 2017 issue.

    If you appreciate what you read and learn something new, we appreciate you supporting our nonprofit publication. We can’t do it without the support of people like you. Enjoy!

    Karensigfirst

    Karen Krejcha

    Executive Director & Co-Founder, Autism Empowerment
    Editor: Spectrums Magazine

    (You can also find this article on page 4 of the Spring 2017 issue of Spectrums Magazine. Print copies were distributed throughout the Portland metro and southwest Washington area in April 2017. You may also read online here.)

     

    No Comments on From The Publisher – Spectrums Magazine – Spring 2017

    Read More
  • Special Celebrations

    Jan 31 • Newsroom • 681 Views

    Special Celebrations – Everyone deserves to be celebrated!

    By Karen Krejcha – 

    Beautiful ideas often blossom from seeds of adversity.

    Feeling social isolation due to disability is a lonely place to be. Theresa Van Pelt knows what it is like to feel this heartache. “My beautiful son, Tristan experiences autism. As he was growing up, I started to notice that our friends and extended family had started to distance themselves from our family. They did not understand his autism or anything that came with it, so slowly they all started to fade away.”

    Despite Theresa and her husband, Jeremy positively advocating for Tristan to be included as he was growing up, things didn’t always work out as planned. One year at his birthday party, one of her worst fears as a mother happened and NO ONE who was invited came. Her son laid under their kitchen table crying, “Where are all the kids, mom?”

    After that heartbreaking experience, Theresa began searching for positive ways that her family could find support and friendships for her son. “We found groups like The Miracle League of Vancouver WA, TOPSoccer and Autism Empowerment and started signing Tristan up for any activities we could. As we started meeting other families in the special needs community, I would hear stories just like ours where friends and families didn’t understand. I would hear parents share being stared at when trying to go to community events because their child had a difficult time or unusual behavior.  I would hear about other children who had never been invited to a peer’s birthday party. That was when I decided that I wanted to do something to make sure that this never happens to my son, or anyone else again, if I could possibly help it.”

    Theresa Van Pelt launched Special Celebrations in Vancouver, Washington in December 2015 as a grassroots group dedicated to supporting and celebrating individuals and families who identify with disabilities or special needs. Although activities are usually in Vancouver, their events and Facebook group include and welcome individuals and families from all around the Portland metro area.

    As they celebrated their one-year anniversary in December 2016, Theresa reflected upon some of the free activities and events Special Celebrations has hosted within the last year.

    Special Celebrations first event was called Santa’s Workshop, one they repeated on December 3rd, 2016. Shares Theresa, “This event was created so that our celebrators would have the opportunity to come and pick a gift for someone they love. We all find joy in doing something nice for others, and that is no different from our children who experience special needs or different abilities. Here they can make an ornament, pick from a selection of small gifts and wrap it all to save for their family’s holiday traditions!”

    Theresa continues, “This year, we added an interactive Sensitive Santa to the event. He mingled with our celebrators rather than sitting for pictures. This was a big help for our kiddos of all ages who just don’t do well with waiting in lines for a long period of time.”

    Making events as sensory-friendly and inclusive as possible so that everyone feels welcome and has an opportunity to participate meaningfully is extremely important to Theresa. “I really loved our Bingo event. We had some celebrators visit us from group homes in our community and seeing the joy of being around other people and then each and every one of them winning a prize; it was absolutely beautiful! I still remember the smiles and joy this simple event and giving of our time brought to them!”

    Other events have included: a Valentine Carnival with specialty treats, an Easter Egg Hunt with sensory-friendly games and crafts and a visit from the Easter Bunny, a Mother’s Day Red Carpet Celebration, a Father’s Day Celebration, Summer Backyard Socials and a Talent Show.

    Often children and adults who are sensitive to loud noises are not able to enjoy 4th of July. A creative solution for this was the “No Boom 4th of July Celebration” with family fun, games, prizes, visits from Star Wars characters, treats and snacks and a NO BOOM safe zone.

    Special Celebrations most well-attended event was a free Harvest Festival in late October held at The Arc of Southwest Washington. There were indoor Trick-or-Treat tables, resources from community partners, games, crafts, costume prizes and a cake walk. Outside was a sensory break area, a bean bag toss and miniature golf.

    Shares Theresa, “My son LOVES to go trick-or-treating. As he has gotten older and taller, we started getting comments from people like ‘Aren’t you a little old to be out here?’ While he never noticed this happening, it’s a hard thing for a parent to watch. He just wants to be out there having fun like all the other kids are and he doesn’t understand that teenagers start to do other things to have fun as they grow up. So the Harvest Festival was created to fill many needs.”

    Local mom, Laura Shook has a son on the autism spectrum who thrives at the celebratory gatherings. “My son absolutely loves the fun events. He socially struggles really bad. At Special Celebrations events, he has a sense of belonging and that is huge for him. We are thankful for all they do!”

    Special Celebrations eventually has a goal of becoming a nonprofit organization. Currently, they partner with a variety of other nonprofits and groups of parents within the local disability community. Theresa explained, “We have brought our crafts and activities to several other groups including Autism Empowerment, Amazing Moms, Club Upside and Special Education Parent Teacher Student Association of SW WA. We have been blessed by Autism Empowerment and Amazing Moms by them being two of our biggest supporters. Both have given several donations to our events.”

    As Special Celebrations continues to grow and their events attract more people, donations of volunteer time, supplies and money will become more important. When asked about their biggest challenge, Theresa replied, “I would have to say being able to find the funding and support for each event. Because we are not yet an official nonprofit, we are not able to as easily seek donations within our community, so we rely on the support of our family, friends and group members. When we started, I had a running start with a craft room full of supplies. As that has been used, I often use my own money to supply events and work very hard to find and gather donations from other groups and families that support us. While I know our families all want to help and get involved as much as they can, it’s often hard to keep asking the same people for help. The positive side of that is that our families DO want to help when and where they can, so we have been able to keep all our events running on parent power so far!”

    That parent power also provides joy to volunteers. When local mom and volunteer Miriah Sachs was asked what she liked about being a part of Special Celebrations, she shared, “They are helping me give back as so many others have given to me… And this allows me to build my village around my little family when before we were alone.”

    To better support celebrating families, Theresa explains, “We ask our families a lot of questions and ask what kind of support they need to be successful at our events. We break larger events up into several different rooms when available. We also create social stories for our events to help prepare our guests for what to expect. My goal is to become a nonprofit organization, to reach more families and ultimately, employ our valuable members in our community who experience special needs.”

    In addition to community events, Special Celebrations has a free birthday card program where celebrators who sign up get a free card in the mail each year. They also offer private parties for birthdays or other special occasions.

    Special Celebrations is currently planning their 2017 calendar and are bringing back several events and creating a few new ones. When asked about expanding to other areas, Theresa shared, “We would absolutely love to become a model for others to start groups like ours in other areas. Volunteers and new celebrators are always welcome. Everyone deserves the chance to be celebrated!”

    Want to party with Special Celebrations? Here is how to connect:

    Email Theresa Van Pelt: specialcelebrations@outlook.com

    Facebook: Special Celebrations – www.facebook.com/groups/specialcelebrations/ 

    Phone/Text: 360-433-1235

    This article was originally published in the print and online Winter 2016 issue of Spectrums Magazine.

    No Comments on Special Celebrations

    Read More
  • A Literary Hero for All Abilities – Joel Suzuki

    Jan 28 • Local Resources, Newsroom • 724 Views

    A Literary Hero for All Abilities 

    by Karen Krejcha

    Readers who stay current on books featuring fictional characters on the autism spectrum may already be familiar with Brian Tashima’s The Spectraland Saga (now the Joel Suzuki series), a science fiction/fantasy book series about a teenage boy on the autism spectrum who travels to a world where music is magic and autism is a superpower. But what they may not know and what we hope for all readers to discover is just how important it is to Brian that his series aligns with positive goals within the autism community. Spectrums caught up with the Vancouver, Washington based author and award-winning musician for an exclusive interview to talk about that topic and more. 

    How many of the characters in your book series identify on the autism spectrum?

    BT: Explicitly three: the protagonist Joel Suzuki, his co-star Felicity Smith, and Marshall Byle, their rock star idol.

    Describe their personalities.

    BT: Joel is sensitive and soft-spoken, although he starts to come out of his shell a bit more as the series progresses. Felicity is feisty, a little abrasive at times, and uses sarcasm as sort of a defense mechanism. Marshall is what you might expect from a successful rock star: charming, charismatic, but also full of himself. All three of them change and grow with each book in the series, which makes them fun to write.

    You have good guys and bad guys on the spectrum in your book. Is this intentional and why?

    BT: It is intentional. The message I wanted to get across was that being on the spectrum shouldn’t pigeonhole you one way or another—you can be good, bad, or somewhere in between, just like anyone else in the population as a whole. Whether you’re on the spectrum or not, we are all, simply, people.

    What are the challenges in creating autistic characters that readers on/off the spectrum will relate to and feel are authentic?

    BT: My biggest challenge is that I’m not on the spectrum myself. But my son Torin, who is on the spectrum and was the initial inspiration for this series, serves as kind of the model upon which Joel is based. Also, Autism Empowerment’s Karen Krejcha, who is on the spectrum as well, has been gracious enough to review drafts of each book before they’re published and provide her feedback. It’s very important to me that my characters are realistic portrayals of people on the spectrum, so I’m really grateful for Torin and Karen’s input and support.

    Who are the books geared toward?

    BT: The series is aimed at a young adult audience, around 12-18 in age. But I think anyone who’s a fan of science fiction and fantasy in general—like me, for example—would also enjoy it.

    How have your books been received by the autism community? 

    BT: The response has been nothing but positive so far, so I’m very happy about that. I think the most gratifying moments have been when I receive letters from kids on the spectrum saying things like “Thank you for writing this, it’s made me feel so much better about myself.”

    How have the books been received by the Young Adult/Sci-Fi/Fantasy community at large?

    BT: Quite well, actually, which is cool because readers of this genre can be pretty critical and demanding at times—I should know, being one of them myself. The reviews of the books that are out so far have contained a handful of constructive criticisms, but the rest of the feedback has been overwhelmingly positive.

    What are your goals for the series (in relation to promoting autism acceptance or advocacy)?

    BT: My main goals are one, to provide kids on the spectrum with an inspiring literary hero of their own that they can relate to and gain a sense of coolness and empowerment from—someone who saves the day with his special qualities, not despite them. And two, to give readers in general a fun adventure story that, if they don’t already know anything about autism, provides them with a level of insight and awareness. As I like to say, I’m not trying to minimize the challenges of being on the spectrum, I’m trying to emphasize the positives.

    Tell us why and how you chose an actor on the autism spectrum to do the voiceover work for your audiobook?

    BT: When I did the audio version of the first book in the series, I really wanted to find a voice actor who was on the spectrum, not only to provide a level of authenticity to the work but also to show people what kind of amazing talent there is out there in the autism community. So I was fortunate enough to meet Jonathan Murphy, who had already done a lot of cool work including being the narrator for a lot of rides at the Great America theme park in California. He did a fantastic job with the audiobook, and I couldn’t be happier with the results.

    One of your goals is for the series to become a movie franchise. Tell us about this.

    BT: A lot of people have told me that the books are very visual and that they would love to see them adapted to the big screen. And I tell them, me too! I think it would be a great way to expand the audience and spread the message, if you will. I saw The Accountant, the Ben Affleck-starring movie with the main character on the spectrum, and while I enjoyed it for the most part, it made me think that there really is a need for a positive, kid-friendly film with an autistic protagonist.

    Why is it important to you that autistic actors be cast in some of the leading roles and autistic advisors be involved in the production?

    BT: Just like with the books and the audiobook, it’s really important to me that the characters be the most genuine and respectful portrayals that they can possibly be. And, of course, I’d like to give people in the autism community the opportunity to show off their skills and break into an industry in which people with disabilities in general have been sorely underrepresented. It would be really cool if Dan Aykroyd and Daryl Hannah, both of whom are on the spectrum, would play roles in the film versions of my books. They’re not quite the right fit for Joel and Felicity, of course, but we’d find roles for them for sure!

    Does a reader need to read your books in order?

    BT: Each of the books is a story in itself, but the series as a whole does form one continual arc, so it would be much more enjoyable to read them in order. It’s more like Harry Potter than James Bond in that respect.

    Tell us about your upcoming book in the series.

    BT: The third book, Legend of the Loudstone, is tentatively scheduled to be released in either March or April of 2017. Without giving away too much, it expands the Spectraland universe pretty significantly as Joel and company travel to a new and exciting location where they meet a completely different race of beings. I had a lot of fun writing it.

    How can readers buy your books? 

    BT: They can find and buy them online at my website, www.thespectralandsaga.com or www.joelsuzuki.com, which contains links to my Amazon pages as well as sample chapters. They can also get them at Kazoodles toy store in Vancouver, WA, or at one of my periodic public appearances in the area that I announce on my blog which can be found at www.briantashima.blogspot.com.

    This article originally appeared in the Winter 2016 print and online edition of Spectrums Magazine.

    No Comments on A Literary Hero for All Abilities – Joel Suzuki

    Read More
  • Martial Arts and Autism

    Jan 23 • Newsroom • 1098 Views

    Martial Arts and Autism – Lessons for Life

    By John Krejcha

    On any given day or evening in the Portland metro area, one can find youth and adults of all ages and abilities participating in some form of martial arts. While there are several hundred types of martial arts around the world, the most common are Taekwondo, Karate, Aikido, Tai Chi, Kung Fu, Judo and Brazilian Jiu-Jitsu.

    Martial arts participation of those ages six and older in the United States has grown from approximately 2.1 million people training in 2011 to over 3.9 million in 2015. This trend spike includes an increasing number of youth and adults in the autism community.

    Martial arts can assist youth and adults on the autism spectrum in a variety of ways, including physically, emotionally and socially.  A few common benefits reported by families include improved balance and coordination, increased focus and attention to detail, better self-esteem and a method for self-regulation.

    A 2010 research project conducted by the University of Wisconsin physical therapy department also confirmed what many parents were already reporting — in the course of learning martial arts, children on the autism spectrum grew more socially assertive and cooperative and essentially came out of their shells.

    In August of 2016, The Journal of Exercise Rehabilitation published a study authored by Yumi Kim from the Department of Kinesiology at California State University, Northridge. The purpose of the study was to investigate the effects of an 8-week Taekwondo intervention on balance in children with autism spectrum disorder (ASD) compared to children not receiving the intervention. Their findings suggested that TKD can be a fun, feasible, and effective therapeutic option for balance improvement of children with ASD.

    AJ O’Gorman, a 14-year-old Asperger’s teen from Vancouver, became involved with martial arts when he was seven years old when he joined an after-school program at his elementary school. His experience helped him feel calmer and less stressed. “I like the physical activity of Taekwondo. I like the forms. It is repetitive and consistent. Even though there is a stigma about martial arts being violent, it is the opposite. It teaches you valuable lessons like restraint, respect and responsibility.”   

    One of the hallmarks of all the different martial arts is the repetition. “After seeing the benefits of just a few weeks in an after-school program, we knew we’d finally found something involving physical activity and fun that would be good for him,” shares AJ’s mother, Tara O’Gorman. She continues, “He graduated out of physical therapy and occupational therapy within months of starting Taekwondo. He learned about self-control, self-respect, respect for others and how to protect himself.”

    “AJ and his brother along with myself took taekwondo, and we all benefited from the physical activity and the mental challenge involved in achieving black belt. AJ, who eventually earned a 2nd-degree black belt grew from a physically and emotionally awkward and timid little boy to a strong, confident young man.”

    Zachary Borghello, a 13-year-old teen with ASD from Salmon Creek, WA is also no longer in occupational therapy. He joined East West Martial Arts in 2013 where they teach a different form of martial arts each quarter. He now wants to be a martial arts teacher when he grows up. Shares his mom, Julie Borghello, “Zachary had been having occupational therapy for many years, and we were starting to look at where he possibly could get similar benefits but in a more inclusive setting with his peers. We had heard from a few friends who also have children with ASD that martial arts was great for their kids, so we figured it was worth a try.”

    “It makes me feel great, it makes me feel strong and energetic,” exclaims Zachary. He continues, “They teach you things like positive attitude, perseverance and excellence. Class is fun and hard, the teachers really help you to improve.”

    Ken Gering teaches at East West Martial Arts in Vancouver, WA and has been working with Zachary from the start. “Zachary has grown in so many ways over the past few years. At the start, Zachary was hard to hear and now he is clear and understandable with wonderful voice control. Also, his core was very weak and now he can do handstands and assisted controlled flips. He really wants to learn the standing back flip. We are not setting any limits on him; we are taking it one step at a time.”

    Julie has noticed additional advantages which have helped Zachary at home and school, including improved concentration. “There have been many benefits, some that aren’t part of the instruction and many that are. He has learned focus, discipline and the importance of practicing outside of class. They also talk in class periodically about being respectful, the importance of random acts of kindness, nutrition and other topics related to how he should act outside of class. It has also helped him deal with noise which was a challenge at first, but now it doesn’t bother him at all and he’s become less bothered about noise in general.”

    Local families have also reported increased self-advocacy when dealing with bullying behavior by others. Sophie is a 13-year-old Portland, OR teenager who started learning Gracie Jiu-Jitsu in the past year. Her father, Mike McLaughlin shares, “Sophie, like many kids on the spectrum, has been a target for bullies in the past, and as great as her school staff is, they simply can’t be everywhere all the time. I started looking at many options some time ago and have narrowed it down to what I believe provides an incredibly powerful solution that I can fully get behind, and that Sophie can both enjoy and reap huge benefits from. I found a program called Gracie Bully Proof that was developed by the grandsons of the inventor of Brazilian Jiu-Jitsu.”

    Mike continues, “What impressed me most about the program was it is truly a gentle art. Essentially, it is a thorough series of private lessons teaching every exact concept and detail of how to deal with a bully, from the initial teasing all the way to what to say if you end up in the principal’s office because things got physical. While it is rooted in martial arts, it does not involve hurting the bully.  Sophie, like many on the spectrum, has zero interest in harming another human being. Brazilian Jiu-Jitsu has been a good fit for us because it does not involve hitting or striking. It is all about strategies to stop the bully with verbal Jiu-Jitsu, talking to adults, and should these strategies fail, giving our kids the tools and the confidence to protect themselves, control the bully and negotiate.”

    When asked how she feels when she does martial arts, Sophie said, “Tough – and like I’m learning to defend myself like a pro.” She feels empowered because of her training when confronted by bullying behavior. “When a bully comes up to you, they have no idea that you’re ready for them.”

    The confidence that Sophie is showing is not going unnoticed. Mike shares, “She has the knowledge and skills to deal with bullies appropriately and effectively. She is more confident and outgoing. School staff have commented on the increased confidence they see in her now, and we have not mentioned her Jiu-Jitsu.”

    When asked to share what they would tell those considering martial arts for youth or adults on the autism spectrum, youth and parents cautioned that martial arts might not be a fit for everybody and to do your research beforehand on the different kinds of options out there.

    Tara O’Gorman shares, “Just because one martial art or style does not work for a child, doesn’t mean something else won’t. Some kids like AJ thrive in the formal, rigid instruction he received from his instructors who taught in a traditional Korean style. Other kids enjoy a more fun, relaxed atmosphere that focuses on physical activity. Like anything, it’s all about finding the right fit for your child.”

    Adds Julie Borghello, “As for martial arts in general, I would tell families that if they are looking for a sports activity for someone who would struggle with a team sport, then martial arts is a good option. They get the fitness, discipline, social interaction, and group experience as an individual participating without having to deal with game strategy.”

    Mike McLaughlin encourages to choose wisely. “While any martial art can be beneficial, you should do your homework before you invest your time and money. Look for the program that will be most effective in meeting your goals.”

    This article was originally published in the Winter 2016 issue of Spectrums Magazine and was featured on the magazine cover. Pictured on the cover are local teen, Zachary Borghello posing with martial arts instructors, Mr. Doug and Mr. Ken from East West Martial Arts.

     

    No Comments on Martial Arts and Autism

    Read More
  • Introduction to State Disability Services

    Jan 22 • Local Resources, Newsroom • 859 Views

    Introduction to State Disability Services

    By John Krejcha

    It does not matter if you call Oregon or Washington home, both states have funding streams in place to help support youth, adults and families impacted by Intellectual and Developmental Disabilities (I/DD), including autism spectrum disorder (ASD). Navigating these systems of support can be confusing, particularly for individuals and families who are new to a diagnosis or who have recently relocated.

    In this introductory article, we explore for both states:

    • Where to look to find requirements to access developmental disability services
    • What kind of services may be available
    • Who to contact for additional assistance

    State level agencies:

    • In Oregon, the Oregon Department of Human Services (ODHS) assists families and individuals with I/DD through the Office of Developmental Disabilities Services (ODDS).
    • In Washington, the Department of Social and Health Services (DSHS) assists families through the Developmental Disabilities Administration (DDA).

    In addition to state services, most counties in both states have additional programs that serve their local developmental disabilities community.

    Requirements:

    While both states have different eligibility requirements to access support services, each state aims to assist individuals and families within the I/DD community, including those with an ASD diagnosis. In both states, regardless of how much income a family makes, specialized services can be accessed based on the needs and abilities of the individual.

    Oregon: In Oregon, state services flow through each county’s Community Developmental Disability Program (CDDP) and they will be the ones who determine eligibility. Workers in each county can help with the necessary papers you need and can also guide you through the eligibility process if requested. All CDDPs use the same application for Developmental Disability Services. In Oregon, the paperwork can be filled out in English, Spanish, Russian or Vietnamese and can be downloaded online.

    Website for eligibility:  www.oregon.gov/DHS/SENIORS-DISABILITIES/DD/Pages/eligibility.aspx

    Community Developmental Disability Program offices within the Greater Portland area:

    Clackamas County: Clackamas County Mental Health – 503-655-8640

    Hood River County: Mid-Columbia Center for Living – 541-386-2620

    Marion County: Marion County Developmentally Disabled Services – 503-588-5288

    Multnomah County: Multnomah County Developmental Disability Program – 503-988-3658

    Washington County: Washington County Developmental Disability Program – 503-846-4737

    Washington: In Washington state, the services flow through the Developmental Disabilities Administration (DDA) which has broken the state up into regions. Workers at these offices can help assist you and send an intake packet. You can also download the forms online.

    Website for eligibility:  www.dshs.wa.gov/dda/consumers-and-families/eligibility

    Regional offices in Southwest Washington:

    Region 1: Klickitat County – 1-866-715-3646

    Region 3: Clark, Cowlitz and Skamania Counties – 1-888-707-1202

    Services Available:

    In both Oregon and Washington, after the application process has been completed and a child or adult has been determined as an eligible client for developmental disability services, then comes a personal assessment process to see what kind of services a person or family may access. Depending on the age and abilities of the client, the assessment meeting varies in length and may last many hours. This meeting usually takes place in the client’s home and includes a local Case Manager, the client and his/her parent(s) or legal guardian.

    Oregon: Depending on assessment results and the age of the client, funding for the following support services may be available:

    • Respite care for family caregivers
    • Parent/Family Training
    • Help with everyday activities like preparing meals, bathing, feeding and shopping
    • Change to make your home more accessible, including assistive technology
    • Help with behavior challenges
    • Supports in the community
    • Employment supports

    In most counties, disability-related nonprofits and family-to-family networks are also available for direct and indirect support.

    Washington: There are three main areas of support for ages 3 – 21 available depending upon assessment: Personal Care, Family Support with Respite Care, and Home and Community Based Services. Adult services such as housing, employment, and independent living are also available.

    As of December 2016, the WA Developmental Disabilities Administration is actively enrolling individuals to their Individuals and Family Services Waiver (IFS). The IFS waiver helps support families who have a family member with developmental disabilities who is three years of age or older by providing a choice of services to help maintain and stabilize the family unit. 

    There is currently funding available for up to 6,500 clients. Families previously declined eligibility are welcome to reapply. Families with a child or adult who were previously assessed as eligible but placed on the No-Paid-Services caseload are urged to contact their local Case Manager to be taken off the waitlist so they may access paid services.

    Potential services available may include:

    • Respite Care at home or in the community
    • Nursing Services, including specialized medical equipment and supplies
    • Assistive technology, including environmental and vehicular modifications
    • Community engagement support
    • Supported Parenting Services
    • Peer Mentoring
    • Person-Centered-Planning Facilitation
    • Physical Therapy, Occupational Therapy and Speech Therapy

    In Southwest Washington, local Parent Coalitions and disability-related nonprofits are available for direct and indirect support.

    As an eligible service isn’t a meaningful service unless clients can utilize it, both Oregon and Washington are currently working to recruit qualified contracted professionals to provide the developmental disabilities services listed above.

    In Clark County, Washington this includes a DDA Meet and Greet on January 25th, 2017 for clients, their families, community providers (potential and contracted) and DDA staff.

    In conclusion, each state provides a variety of Developmental Disability support services. The process of eligibility, assessment and finding qualified providers to work with does take time so it’s important to get started soon after a diagnosis is received. The time you invest now will hopefully provide positive dividends for your family in the future.

    State government resources:

    www.oregon.gov/dhs/  – Oregon Department of Human Services

    http://ocdd.org/Oregon Council on Developmental Disabilities

    www.dshs.wa.gov/dda  – Washington State Department of Social and Health Services, Developmental Disabilities Administration (DDA)

    www.informingfamilies.org Informing Families is a resource provided by the Washington State Developmental Disabilities Council, in collaboration with the DDA to offer trusted news and navigation support to individuals and families impacted by I/DD.

    This article originally appeared in the print and online Winter 2016 edition of Spectrums Magazine.

     

    No Comments on Introduction to State Disability Services

    Read More