FREE PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER
FALL 2015
BULLYING PREVENTION MONTH DREAM BUILDERS ALLIANCE INVISIBLE DISABILITIES BIRTHDAY PARTIES FOR SPECIAL NEEDS FAITH AND INCLUSIVITY INCLUSIVE SOCCER TEAMS
“We have been on this road of autism therapy for eight years now, and after visiting countless clinics both in Oregon and California, it is my sincere and humble opinion that the love and care we received at Sensory Kids is truly unparalleled.” — Searmi, parent and client at Sensory Kids
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INTENSIVE THERAPY PROGRAM At Sensory KIDS we recommend an intensive model of therapy—and summer is a great time to devote to this type of program. This model includes a comprehensive evaluation, adult-only parent meetings, and OT sessions 3 to 5 times a week for approximately 30 sessions. Our years of clinical experience, as well as recent research, show that frequent repetition is needed to make solid changes in behaviors, self-regulation, and daily routines.
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CAREGIVER SUPPORT GROUP Led by parents living with sensory processing and regulatory disorders and responsive to participants’ needs. A place for camaraderie, exploration, and sharing. Held at Sensory KIDS for adults only (sorry, no childcare) the last Tuesday of each month, 7:30-9:00pm and the second Saturday of each month, 10:00-11:30am. Please RSVP: info@sensorykidsot.com or (503) 575-9402.
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FALL 2015
contents
INCLUSIVE SOCCER TEAMS FEATURED SECTIONS Lifespan
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Siblings on the spectrum Lessons learned from growing up with brothers and sisters who have autism.
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Faith and inclusivity How to help ensure that families feel secure and accepted when attending church.
Dream Builders Alliance Young adults reaching their potential through empowerment and goal setting.
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Bullying Prevention Month Stand with Spectrums for October’s National Bullying Prevention Month to support safe settings.
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Invisible disabilities Being sensitive and accepting of disorders not always visible to outsiders.
Recreation
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Planning birthday parties for kids with special needs Creating an inclusive celebration that accommodates those with special needs.
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Having a ball Soccer leagues that give all children the chance to play.
EDUCATION
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HEALTH + WELLNESS
An IEP refresher Everything you need to know about creating a comprehensive IEP.
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My Turn The mutual lessons learned by working with adults on the autism spectrum.
therapy
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Sensory Processing 101 Understanding how the body interprets sensory signals and information.
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Community Provider Partner Directory Categorized directory of providers and local services.
www.spectrumsmagazine.com
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www.shayneberry.com
FROM THE PUBLISHER
FALL 2015 | VOLUME 3, ISSUE 3 SPECTRUMS MAGAZINE LLC Courtney Freitag, Founder and Publisher
Jumping feet first into the publishing world three years ago, I couldn’t have imagined some of the life lessons I would learn. Any small business owner will recount stories of ups and downs, of the late nights and constant hustling. But few have the privilege to be on the receiving end of inspiring stories, first-hand accounts of triumph or lessons of acceptance. At a recent event, a bubbly teenager with Asperger’s talked excitedly to me, then stopped herself about five uninterrupted minutes in: “And I like to talk a lot! It’s part of my Asperger’s!” I looked her in the eye and said, “That’s great! You must have a lot of important things to say.” I wonder how many people would brush her off, finding discomfort and awkwardness in her different way of reading social cues or having a mostly one-sided conversation. Three years ago, I may have been one of those people. As we celebrate National Bullying Prevention Month in October, it’s important to remember the attacks on those with special needs. While some live life in a wheelchair or have distinctive physical features revealing their diagnosis, many do not. Our article on invisible disabilities on page 24 touches on how autism can often be a silent struggle. We’ve also partnered with area businesses and organizations that are committed to providing a safe, inclusive environment—not just in October, but every day of the year. Look for their “Stand with Spectrums” signage and support those providing an open, caring atmosphere for those with autism, their families and all patrons— regardless of their limitations.
Courtney Freitag Founder and publisher
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www.spectrumsmagazine.com
Mailing address: 2240 N Interstate Avenue, Suite 200 Portland, Oregon 97227 Phone: (971) 998-5967 • Fax: (971) 327-6702 www.SpectrumsMagazine.com courtney@spectrumsmagazine.com Connect with us online! /SpectrumsMagazine @SpectrumsMag SpectrumsMag
Spectrums Magazine LLC makes no warranty, guarantee, endorsement or promotion of any service, provider or therapy option listed in this publication or its website (www. spectrumsmagazine.com). This is a free community magazine created as a courtesy to the public. Spectrums Magazine LLC cannot be held liable for any action or decision based upon information found in this publication or the magazine’s website. It is the responsible of individuals to discuss any therapy or treatment option with the care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication maybe reproduced or transmitted without prior written consent from the publisher. ©2015 All rights reserved.
ON OUR COVER Tweens and teens with special needs and invisible disabilities are often the target of bullying. October is National Bullying Prevention Month. Stand with Spectrums by creating and supporting inclusive, safe environments for everyone.
EVERY STUDENT IS UNIQUE AND DESERVES A SPECIALIZED PROGRAM ACCORDING TO THEIR NEEDS.
Locations in:
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9901 NE 7th Ave. Suite C-116 Vancouver, WA 98685 129 NE 102nd Ave. Suite E Portland, OR 97220
Insurance: Kaiser, Tri-Care, and more Billing: 360.573.0895
400 Glen Creek Rd. NW #5207 Salem, OR 97304
Occupational Therapy Specializing in Sensory Processing Disorders Auditory Interventions • DIR/Floortime • Handwriting Therapy Intensives • Interactive Metronome • Yoga Posture/Core Development • Qigong Sensory Massage Rhythmic Movement Training • Counseling Social Skills Training • Support Groups
AdvancedPediatricTherapies.com Portland & Vancouver locations: (360) 885.4684 www.spectrumsmagazine.com
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lifespan ALL AGES AND ALL ABILITIES
IN THIS SECTION Siblings on the spectrum.................................................................................8 Dream Builders Alliance.............................................................................. 10
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www.spectrumsmagazine.com
Creating a more HOPEful future. join us for our annual fundraising gala, autumnfest:
october 24 at the madeline parish hall from 6:30-10:30 pm. silent auction, great food and LIVE MUSIC FROM SCOTT WHITE, Ian Pribil, Leanne Cruz & more.
Purchase tickets online: $50: individual $350: Table FOR 8
EVIDENCE-BASED TREATMENT AND FINANCIAL ASSISTANCE TO FAMILIES AFFECTED BY AUTISM.
PROGRAMS Hope 4 Kids Program offers specialized programs for early learners age 3-5, and children in grades K-8. Our Program provides Applied Behavior Analysis (ABA), providing evidence-based treatment that focuses on all aspects of development. We provide individual and small group instruction to support learning to learn from the world around us.
A Hope for Autism 2120 SW Jefferson Street, Suite B200 Portland, Oregon 97201 (503) 244-4083 For information or enrollment: info@ahopeforautism.net www.ahopeforautism.net
• • • • •
In-Home Programs Social Learners Program Toddler Group After School Program Social Skills Groups
All of our programs are tailored to focus on communication, parent involvement, new interests, play, and peer interaction.
SPONSORSHIP OPPORTUNITIES With your support, more individuals will receive critical, effective interventions—blazing the way to a brighter, more HOPEful future. Our annual Autumnfest for Autism helps support our programs throughout the year. Join us on October 24 to live music, silent auctions and dinner. Sponsorship opportunities available. Contact us today about becoming a community sponsor. www.spectrumsmagazine.com
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LIFESPAN
Siblings on the spectrum Brothers and sisters providing life lessons By Sydney Sullivan
When Sydney was 5 years old, her 2-year-old brother, Nick, was diagnosed with autism. As she prepares to enter her senior year of high school, she shares her unique perspective on what it has been like growing up with a sibling who is on the autism spectrum. How old were you when you realized your brother wasn’t like other kids? It became evident from a very young age that my brother wasn’t like other kids, especially when I started school. My parents told me he had autism shortly after they found out, but I don’t think I quite understood what that meant until I began to notice that my brother acted differently than some of my friend’s siblings. I never thought less of him though. I quickly realized that everyone has things that make them different and therefore no one has room to judge a single individual for their differences.
What are some things that you do to foster your relationship with your brother? Nick and I are very close. I am not afraid to take him out of his comfort zone when possible. I try to take him on outings just the two of us when I can because I think it’s really important to bond with him in this way, even if it’s just a simple trip to Target or McDonald’s (his favorite). At home, I’ll help him with his homework or watch his
Is there anything you feel your parents have done to help you accept/embrace having a brother with autism? From the moment Nick was diagnosed with autism, my parents have fought so hard for him to get the same opportunities as other kids his age, especially in school. We are his number one support system and I take great
“Growing up with a sibling with autism has made me learn the value of acceptance. People deserve to feel like they belong in this world. With acceptance comes inclusion.” pride in that. He deserves the best and if that means that the rest of us must fight to get it, then we will without a second thought. Our strong family dynamic is what makes it so easy to embrace Nick for who he is because we are all in this together and that’s very important and reassuring. What are some challenges growing up with a sibling who has autism? The hardest part of growing up with a sibling with autism is the communication barrier. My brother can have a difficult time articulating what he wants or how he is feeling, and that can be very frustrating. Nick is very set in his ways and likes routine, so mixing things up can be a struggle for him as well, even when it doesn’t seem like a big deal to the rest of us.
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movie with him. He means a lot to me and I want that to be evident to him. And often times, based on the huge smile on his face, I can tell that times we share together mean a lot to him, too. What is the best part of having a sibling with autism? The best part of having a sibling with autism is the opportunities that he’s received that I’ve gotten to be a part of. Nick has been able to fly an airplane, go to Disneyland countless times with a special Fast Pass, surf and much more. I think it’s amazing that he got the chance to do these things, and even more so that I got to be right by his side while he did them. I also cherish the close relationship I have with Nick. Other kids his age might want nothing to do with their older sister, but Nick has never pushed me away and I think that’s really special. Continued on next page
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Siblings, continued from page 8 Is there anything that you wish more people understood about your brother? I wish more people took the time to truly understand my brother. He is a talented, intelligent 15-year-old, and yet some people, even ones my family is close with, treat him as if he is younger than he actually is. I find it kind of demeaning because people that really know Nick are the ones that can see past some behaviors others characterize as “childish.” What advice would you give to other kids growing up with a sibling who has autism? The best advice I can give is to try and avoid getting discouraged when things get frustrating. It will get better, I promise. You have to understand that it’s just as frustrating for your sibling to convey what they want as it is for you to understand them. Also, don’t be embarrassed of your sibling. Any meltdowns that happen in public are temporary. Not everyone understands autism like you do, so explain it to them to help them understand. Stand up for your sibling and support them no matter what. Most importantly, be a good role model because your sibling truly looks up to you, no matter if you’re younger or older than them.
How has growing up with a sibling with autism changed how you view others with differences? Growing up with a sibling with autism has made me learn the value of acceptance. People deserve to feel like they belong in this world. With acceptance comes inclusion, which should be a right not a privilege that must be earned. I value acceptance because I have seen first-hand the effects of people that had little faith in my brother because they were unaccepting. It’s isolating and frankly, unfair. Acceptance is not only meaningful, but also powerful. I believe that acceptance can lead to a less exclusive society. Everyone deserves a chance, no matter what makes him or her different. Sydney Sullivan is an 18-year-old, senior at Mountain View High School in Vancouver. She lives with her parents, Kari and Tim, and her 15-year-old brother, Nick.
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LIFESPAN
Setting goals and building dreams Transition agency supports adults
By Keith Loria
It was 25 years ago that Joe Wykowski started Community Vision, a Portland-based organization that supports individuals with disabilities to live in their chosen community. Since its beginning, Community Vision has continued to grow and now provides a variety of individualized services and supports, including employment, homeownership, accessibility related loans and matched savings accounts or individual development accounts. One recent program is the Dream Builders Alliance, aimed at youth with disabilities who were often not given adequate transition services to prepare them for adulthood. This program provides them a chance to connect with their community by accessing local jobs and work-related experiences.
In the Beginning Dream Builders Alliance is a collaborative program of Community Vision, partnering with community nonprofits to serve youth and young adults. The program, which relies heavily on volunteers and mentors who receive small stipends, is funded by a twoyear, $80,000 grant from the Meyer Memorial Trust. It was founded in partnership with Northwest Down Syndrome Association, which included 10 participating families and is now pursuing Think College Oregon as a strategy to include youth in education beyond high school.
“It was evident that transition services provided by the school district were not connected to the adult world of supports,” says Allison Falleur, administrative coordinator of Dream Builders Alliance. “As a system, we have not been meeting the needs of transition-age youth and young adults. The majority of youth who had just exited high school were spending the day at home, having lost the services provided to them by the school district. Far too many of these individuals lacked supports and, most importantly, the dream to aspire towards employment goals, access services available to adults and set goals for community living.”
“In partnership with FACT Oregon, Dream Builders Alliance has served 14 families within the Portland Metro area,” says Rachel Eaton, VISTA member assigned to Community Vision (and soon-to-be-named Dream Builders Alliance program coordinator). “The mentorship component focuses on community inclusion: pairs meet in the community and engage in activities based on the young adults’ specific interests and goals.”
The Dream Builders Alliance is an independently funded program designed to step into the gap. The program takes a two-tiered approach: educating parents and families about employment, individualized housing and community building; and providing oneon-one mentoring to youth, teaching them how to set community goals, explore education and employment while building a life that follows their dreams.
“The goal is to encourage individuals to follow their dreams and assist them in doing so through one-on-one mentorship sessions, with mentors and program staff,” Eaton says.
“It teaches youth how to enter young adulthood in the driver’s seat of their own lives,” Falleur says. “Our mission is to meet a participant where they are and remain vigilant for signs, both verbal and nonverbal, which indicate preferences and choice.” The group has served a number of individuals who experience autism and uses a range of communication games, activity-based comprehension activities and are
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skilled at addressing sensory needs.
Since beginning in February of 2013, Dream Builders Alliance has served 25 youth and young adults, with participants experiencing a variety of disabilities.
Program Goals Dream Builders Alliance is a grassroots effort to provide empowerment education and community opportunities to youth ages 12-14, as well as transition opportunities to youth ages 16-21. “We attain post-secondary education and employment outcomes geared towards each individual’s interests and skills,” Eaton says. “We set into motion a participant’s vision for their future, and after cohort graduation, we follow each for three years and remain a resource to help them achieve their goals.” Continued on next page
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Alliance, continued from page 10 Additionally, the program’s parent/guardian component provides educational sessions about available resources and services and how to access them. Parents generally serve as the main support for young adults with special needs, and are taught how to responsibly shift the emphasis from guiding a child’s life to supporting the self-realization of their young adult. “Due to small cohort size, the parent education component has a community-like feel. Parents not only gain information from FACT Oregon and Community Vision presentations, but also from the discussion-like layout,” Eaton adds. “Participating families come to us with a variety of backgrounds and experience, all able to share their journey and provide insight to other families.” Seeing Results The program works with young adults and their families to ensure success and it has seen a variety of successes from its Dream Builders Alliance youth and young adults. “Parents have reported increased self-confidence, an interest in post-secondary education and employment, as well as a stronger sense of community,” Eaton says. “We have seen mentor-young adult relationships blossom and continue past cohort graduation.”
Dream Builders Alliance participants have also enrolled in an IDA program, a matched savings account to build assets. “Many of our young adult participants have increased their ability to express their goals for the future and exhibit increased confidence and self actualization, being given the tools and ongoing support to achieve their goals,” Eaton says. “Parents and guardians express that this process has given them a road map of previously unknown territory. They have shared with us that they feel less alone and now can identify people and resources to be part of the future for their child.” As much help as they’re providing, Eaton feels the program is still underutilized. “We would like to get the word out on this free and comprehensive program, so the collaborative can benefit the highest number of families,” she says. “We are interested in community partnerships for mentor recruitment and participant recruitment.” For more information, visit www.cvision.org or email Rachel Eaton, reaton@cvision.org.
“It teaches youth how to enter young adulthood in the driver’s seat of their own lives.” —Allison Falleur, administrative coordinator of Dream Builders Alliance
Photo courtesy of Dream Builders Alliance www.spectrumsmagazine.com
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recreation INCLUSIVE WAYS TO HAVE FUN
IN THIS SECTION Birthday parties for children with special needs.......................... 14 Inclusive soccer leagues................................................................................ 16
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RECREATION
Parties and celebrations for specia ln eed s
By Jennifer Costa Bright lights. Loud music. Big crowds. Birthday parties for neurotypical children can often include experiences too intense for a child on the autism spectrum. However, with some simple planning, preparations and accommodations, any child can be honored and celebrated each year on his or her birthday. While it varies from child to child, it may be easy to assume that your child cannot handle, or does not want, any type of birthday celebration. Sometimes this is the case, but sometimes it’s not. The logistics might vary from the norm, but a party can present a great opportunity for your child to interact with peers and have a great time. When appropriate, allow your child to be involved in the planning process. The level of involvement will vary, based on your child’s age, abilities and preferences. If your child has a special interest, favorite movie or treasured toy, this can be incorporated into a theme. When you can, offer choices and allow your child to be the decision maker. It’s okay to keep things low-key, inviting only a few close friends, family or those within the autism community. In fact, your child’s birthday party doesn’t have to be a “party” at all. Celebrating by doing a special activity, like camping or visiting a museum, can be just a memorable, and significantly less stressful, than a big party.
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Parties can be filled with a hodgepodge of new sights, sounds, tastes and smells and can lead to overstimulation. To make things easier for your child, consider alternatives. There are no birthday party “laws.” If flickering candles could irritate your child, don’t have them. If sound sensitivity is an issue, or if your child does not like to be the center of attention, skip the birthday song altogether. Presents can also lead to stress. There’s nothing wrong with opening gifts after the party is over, or asking for an alternative, like a gift to charity, if presents will simply be too much. Consider location carefully How does your child handle transition? Trying something new, in an environment that’s unfamiliar can lead to high-anxiety. If you are planning a party at a park, or other outdoor location, how will your child react to inclement weather? Also take into consideration the party guests: if there are other kids on the spectrum, be sure you have other parent helpers and are aware of any extra accommodations for party goers. Use a professional Sometimes it’s easier to leave the details to someone else, and planning an “event party” at a local hotspot can work out beautifully. Jerry Raymond, owner of Sky High Sports in Tigard, and also the father to a child with Continued on next page
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Parties, continued from page 14 autism, has these tips for parents considering booking a birthday party at a special event venue. Be upfront Talk to the staff at any potential venue and ask them if they have experience hosting parties for children with special needs. Many venues are more than willing to offer advice on how to make their facility more compatible with the needs of your child. In some cases, music can be lowered, areas sectioned off, lights dimmed or distractions removed, to make the surroundings less overwhelming. Choose your date carefully Weekends and holidays are busier, and multiple parties are often booked. Consider booking a party on a weekday, when the crowds are smaller and the staff is not spread as thin. Preparation Don’t forget to prepare yourself and your child for the unexpected. Cake orders are lost, guest don’t show and meltdowns do happen. Setting aside a sensory area where children can take a breather is a good idea. Prepare your child by explaining that parties are special and don’t happen every day, therefore there will be a change in their routine. Be aware that this might cause emotional distress and plan accordingly. Parties don’t have to be perfect to be worth the time. Plan carefully, be flexible and don’t forget to have a great time!
New pre-Kindergarten transition group for children with disabilities. Our pre-K group is designed to develop academic skills, behavioral skills, social skills and language skills. Our team can also provide a personalized transition report to schools if needed when entering kindergarten.
Facilitated by a speech-pathologist, counselor and retired elementary school teacher Small group sizes Meets Tuesdays/Thursdays from 9-11:30am
We focus on maximum results that take into account the specific needs of your child, family and child’s support system. And we make therapy affordable.
Clackamas Speech It’s okay to keep things low-key for your child’s birthday party. Remember to prepare and accommoda te where the birthday boy or girl needs extra suppor t.
www.clackamasspeech.com 2305 SE Washington Street #102 Milwaukie, Oregon (503) 654-1014
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RECREATION
Having a ball Encouraging kids of all abilities to play soccer By Keith Loria
Thanks to a nonprofit organization dedicated to children unable to play typical recreational soccer, Oregon kids with autism are learning the joys of the sport. Often times, children with autism are left on the sidelines to watch the action, but an innovative soccer league is changing that, giving children with special needs the chance to play and be cheered on by family and peers. TOPSoccer is a community-based training and team placement program for players 4 years and older with mental and/or physical disabilities. In Oregon City, Three Rivers Soccer operates under the TOPSoccer umbrella, founded by Cory and Tammie Moore. Ten years ago, the Moores were simply looking for a soccer program for their son to play in. “Our son Alex was diagnosed on the autism spectrum at the age of 2 ½. We knew early on that Alex would be different from his brother and sister, but we didn’t want his active options to be limited due to the disability,” Cory says. “For a good year, we searched to find a program that would work for our son. To our surprise, in 2005, there just weren’t any options.” Borrowing from Field of Dreams’ mantra of “if you build it, they will come,” the couple filed paperwork to become a 501(c)(3). They became the first Oregon soccer program solely dedicated to kids who were unable to play recreational soccer due to physical or mental disabilities. About 70 percent of the Three Rivers league has ASD. “I guess you can say the genesis stemmed from the love for our son,” Tammie adds. The Moore’s research found that soccer is really a game for all ages and began reaching out to other children like their son. “You just have to move and kick a ball, and kicking doesn’t always mean with your feet either. We have found that for kids with autism, soccer provides an outlet that allows them to be individuals, as well as branch out of their comfort zone to connect with people,” Cory says. “Soccer is a great game that allows you to follow certain rules that everyone plays by. The motor movement that soccer brings is also proving to help children with autism with coordination, gross motor control as well as social development.” When Three Rivers Soccer first began, 30 children were enrolled with only the Moores running it. Today, it has
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more than 60 kids and nearly 40 steady high school volunteers. “We have a board of nine amazing volunteers that help run the program behind the scenes as well,” Cory says. “We have wanted to keep it manageable and have not tried to promote it in a serious fashion. Our program is word-of-mouth and we do not turn anyone away.” Each September, kids in the program start playing at the Oregon Indoor Soccer Center every Saturday afternoon. The center’s owner not only supports the program but donates the time for the facilities. “We run two one-hour sessions that are really designed and geared to help focus on what the child does well—their abilities, not the disability,” Cory says. “Early on in setting up our club we discovered that our players have a very wide range of abilities. We have players that are ready to play a really fun and fast pace game of soccer, and we have players that just need a little more assistance.” Early on, the decision was made to offer two groups that could really focus on the player’s ability rather than age. “We really lean on parents/guardians, who know them the best, to determine what group they feel best supports their player,” Tammie says. “Players are always welcome to play in both sessions as well, or switch at any time.” The Bobcats session is designed for players who are new to soccer and need a little more assistance, or who just want a more structured program. In this group, each player has a “buddy” for the day, usually high school volunteers. There is also focus on one-on-one development. “We like to think of this session as taking everything we learned from some of the best occupational therapists and combining it with a soccer ball,” Cory says. “During this session, we play a lot of fun socialization games, such as body soccer, various skill drills, Red Light/Green Light and Duck, Duck Goose. We also have a couple parachutes we will pull out.” Those playing for the Cougars are a little higher functioning and require a buddy because they play a very quick backand-forth game of soccer. “These sessions really focus on the ‘play and have fun aspect’ and a little less on the full ‘rules,’” Tammie says.
Continued on next page www.spectrumsmagazine.com
Photos courtesy of Three Rivers Soccer League
Soccer, continued from page 16 “Each session starts with some sort of skill drill, and then after about 15 minutes, they will play a full field game.” Both team names are tied back to Alex, who loves the Lion King and has carried a stuffed animal of Nala around for years. Over the years, Cory has seen the players learn more than just soccer when they participate, and has noticed a big change in Alex as well. “They learn how to use their voice, develop relationships with people outside their normal day-to-day of school and home,” he says. “They learn to follow directions, take turns, build on their gross motor abilities and most of all, how to have fun and make a friend. Soccer is the foundation and tool to make all this happen.” Players who join Three Rivers Soccer league receive their own uniform to keep—and everyone agrees that once you see the players in that uniform, something magical happens.
uncles, aunts, cousins and even a few family friends coming to cheer the player on. This builds even more confidence and pride in the child.”
“There is a pride that can’t be described in words. They are so very proud to be off the sidelines and now a part of something that is focusing on what they can do,” Cory says. “We normally don’t just get mom and dad to come to the game day, you will most of the time see grandma, grandpa,
For more information on the program, visit www.threeriverssoccer.org/.
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION An IEP refresher.................................................................................... 20
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EDUCATION
An IEP refresher Creating the right plan for your child’s education By Michael Dorfman, Friendship Circle
We often hear discussion about IEPs and the good, the bad and the ugly that surrounds them. Many times there is confusion as to what the IEP and its process is all about. From time to time it is important to review the basics of an IEP and how it is supposed to be deployed. Here is a refresher about IEPs and its role in special education. What is an IEP? IEP stands for Individualized Education Program (alternatively called an “Individualized Education Plan,” “Individual Education Plan,” or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child’s classification, placement, services such as a one-on-one aide and therapies, academic and behavioral goals, a behavior plan if needed, percentage of time in regular education and progress reports from teachers and therapists. The IEP is planned at an IEP meeting. What is required by law to be in an IEP? The Individuals with Disabilities Education Act (IDEA) requires that the following components be included in the IEP; the specific details of each requirement will be discussed in detail herein: 1. Academic achievement A statement of the child’s present levels of academic achievement and functional performance, (Sometimes called the PLAAFP) including how the child’s disability affects the child’s involvement and progress in the general education curriculum (e.g., the same curriculum as for non-disabled children); or for preschool children, as appropriate, how the disability affects the child’s participation in appropriate activities. This portion describes what your child is able to do and what your child’s unique needs are that result from his/her disability; 2. Measurable goals A statement of measurable annual goals, including academic and functional goals designed to meet the child’s needs that result from the child’s disability to enable the child to be involved in and make progress in the general education curriculum; and meet each of the child’s other educational needs that result from the child’s disability. Functional skills include daily living activities, social skills, mobility skills, employment skills and skills that
increase your child’s independence. Measurable goals must use baseline data from the child’s present levels of academic achievement and functional performance and written so the child’s progress is clear and measurable. The IEP team may conclude that the child does not have functional needs so the IEP may not include functional goals; 3. Short-Term Objectives For children with disabilities who take alternate assessments aligned to alternate academic achievement standards, a description of benchmarks or short-term objectives; 4. Progress report A description of how the child’s progress toward meeting the annual goals will be measured; and when periodic reports on the progress the child is making toward meeting the annual goals (such as through the use of quarterly or other periodic reports, concurrent with the issuance of report cards) will be provided; 5. Services required A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research, should be provided to the child, or on behalf of the child. To the extent practicable, this refers to research that is reviewed by qualified and independent reviewers to ensure that the quality of information meets the field’s standards before publication. A statement of the program modifications or supports for school personnel that will be provided to enable the child to advance appropriately toward attaining the annual goals; to be involved in and make progress in the general education curriculum, and to participate in extracurricular and other nonacademic activities; and to be educated and participate with other children with disabilities and non-disabled children in such activities; 6. Participation An explanation of the extent, if any, to which the child will not participate with “typical” children in the regular class and in activities; 7. Necessary accommodations A statement of any individual appropriate accommodations that are necessary to measure the academic achievement and functional performance Continued on next page
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IEPs, continued from page 20 of the child on State and district-wide assessments. If the IEP team determines that the child must take an alternate assessment instead of a particular regular state or district-wide assessment of student achievement, a statement of why the child cannot participate in the regular assessment; and the particular alternate assessment selected is appropriate for the child. 8. Timelines The projected date for the beginning of the services and modifications and the anticipated frequency, location and duration of those services and modifications. 9. Updated goals Beginning not later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP team, and updated annually, thereafter, the IEP must include appropriate measurable post-secondary goals based upon age-appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills; and the transition services (including courses of study) needed to assist the child in reaching those goals. 10. Majority age Beginning not later than one year before the child reaches the age of majority under State law, the IEP must include a statement that the child has been
informed of the child’s rights under Part B of the Act, if any, that will transfer to the child on reaching the age of majority under §300.520. Other considerations in the IEP The IDEA also requires that the IEP team consider other factors when developing the IEP. The easiest place to document the discussion of these considerations is in the IEP. 1. Extended School Year Services ESY must be provided only if a student’s IEP team determines that the services are necessary for the provision of FAPE. 2. Nonacademic services The school must take steps, including the provision of supplementary aids and services determined appropriate and necessary by the child’s IEP team, to provide nonacademic and extracurricular services and activities in the manner necessary to afford children with disabilities an equal opportunity for participation in those services and activities. Nonacademic and extracurricular services and activities may include counseling services, athletics, transportation, health services, recreational activities, special interest groups or clubs sponsored by the public agency, referrals to agencies that provide assistance to individuals with disabilities, and employment of Continued on page 36
Individualized Education Programs (IEP) are a legally binding document that outlines what goals and measurable outcomes are expected from students with special needs. They can include a child’s classification, placement and special accommodations.
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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION Invisible disabilities............................................................................. 24 National Bullying Prevention Month...................................... 26 Faith and inclusivity.......................................................................... 28 “My Turn”.................................................................................................. 30
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HEALTH + WELLNESS
Invisible disabilities
Living with challenges we can’t always see By Jennifer Costa As the mother of a child diagnosed with autism spectrum disorder and ADHD, I am keenly aware of the challenges faced by those caring for someone with an invisible disability. As caregivers, we often find ourselves having to make the inevitable revelation. Maybe there’s been a meltdown, or a puzzled look from someone who’s addressed my son and not received a response. “Please be patient. My son has autism,” I tell them. The typical reply is, “Oh, I didn’t realize,” sometimes followed by, “but, he doesn’t look autistic.” Autism and bullying In light of October’s National Bullying Prevention Month, it’s important to be aware of the challenges faced by those with invisible disabilities, and those caring for them. For those within the autism community, bullying is a very real concern. Kathy Henley is the President of Autism Research and Resources of Oregon (ARRO), and mother to a 30-year-old son with autism. “Because communication and sensory processing problems are not physically or visually apparent, these special individuals can experience a wide variety of problems
seen them ridiculed by people who should have known better. I have seen them be reprimanded because they could not follow directions. I have seen them get their caregivers in trouble because of their behavior. I have seen the special individuals manipulate others so that they could get what they wanted. I have seen them fail intake protocols and end up not qualifying for services and housing assistance that they truly need.” The invisible nature of autism Robert Parish is a filmmaker, autism advocate and author of the book, Embracing Autism: Connecting and Communicating with Children in the Autism Spectrum. He is also the father of a 22-year-old son with autism. I recently had the opportunity to speak with Parish about the challenges of caring for someone with autism, and its invisible nature. Parish suggests that the invisibility of autism can lead to harsh judgment. This isn’t limited to the person with autism, but also their parents and caregivers as well. When a child looks “typical,” going to a public place can be tough. People’s quick and intense nature of reactions is simply “shocking,” Parish says. People don’t know what to think when they experience a meltdown, or intense stimming behavior and the newness can lead to fear.
When a child looks ‘typical,’ going to a public place can be tough. People’s quick and intense nature of reactions is simply shocking.” —ROBERT PARISH when they interact with the general public,” Henley says. “They sometimes have behaviors that land them in trouble with people in control. I have seen them put in jail because of the way they answered or didn’t answer questions. When frightened, they can react erratically. Activities that would not frighten neurotypical individuals can be overwhelming to these special individuals. The person with special challenges can look so normal that they can confuse people who expect a neurotypical response.” Bullying is not a minor concern. Henley has experienced this first-hand. “I have seen [people with autism] refused access to public transportation when using a special needs pass. I have
Parish understands how removing the invisibility of a disability can lead to better understanding. He recounted the story of a boy with autism who, after an injury, appeared outwardly to be disabled. Not surprising, this led to a greater acceptance of the behaviors that he had displayed prior to the injury. My own daughter was a late walker. When she was not yet two, we visited a specialist who recommended special orthotic devices and aggressive physical therapy. She has always been an outgoing child and her sparkling eyes, strong will and bright pink leg braces made her especially memorable. Walking into a store usually meant that we were greeted with ear-to-ear grins and friendly offers of assistance. Continued on next page
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Invisible, continued from page 24
Invisible Disabilities Week: October 18-24
While smiles and helpfulness are certainly extended to my son, I encounter them far less frequently, perhaps due to the fear of behavior that is, to some, unfamiliar.
Join the Invisible Disabilities Association for the 2015 Invisible Disabilities Week online: www.invisibledisabilitiesweek.org.
Autism is certainly not the only invisible disability, but, in Parish’s opinion, its invisible nature is particularly profound. Because of the quick and dramatic behavioral changes associated with autism, suffering in silence just isn’t an option.
“Together we can bring awareness, education and support to your neighborhood and around the world.” HOW TO PARTICIPATE:
Where do we go from here? Advocacy efforts are certainly on the rise. Even those who have never met someone with autism, have certainly heard about it. What’s more difficult to understand is the concept of a “spectrum.” Even as a social worker, I had difficulty comprehending exactly what this meant until I had a child of my own and met more and more children with autism. Autism manifests differently in each child, exhibiting their own unique behavior and characteristics. Therefore, when people encounter children with autism, the variety and differences of characteristics can be extremely challenging to explain and understand to outsiders. It’s the beautiful variety of those on the spectrum that also enhances that lack of understanding that can cause people to assume that a child’s behavior is simply due to eccentricity or bad parenting.
1. RSVP online: http://invisibledisabilities.org/seminarsandevents/ invisible-disabilities-week/ 2. Apply with your state for official recognition of Invisible Disabilities Week. 3. Spread the word! Spread awareness and education about people living with invisible disabilities. 4. Share IDA articles and radio interviews with friends, families, doctors, teachers and other groups via social media. 5. Share your “Invisible No More” story or order t-shirts and bracelets online to show your support.
With so many autistic children in mainstream educational programs, they can find themselves particularly vulnerable to bullying. This bullying can lead to depression, academic issues and increase in the severity of negative behaviors. Research published in the archives of Pediatrics & Adolescent Medicine indicate that children with autism are more than twice as likely to be the victim of bullying, than their neurotypical peers. Parish suggested that it’s important for those on the autism spectrum to understand that this is not about them. He recommends explaining this to your child, even if he or she is nonverbal. Talk to people on both sides, advocate and encourage understanding. With the Centers for Disease Control reporting 1 in 68 children are affected with ASD, encountering autism is almost inevitable. It’s our job as parents, teachers and adults with autism to take a stand against bullying, spread the word about autism and foster empathy. For more information on invisible disabilities, visit: www.invisibledisabilities.org. To get involved with the anti-bullying movement, visit: specialneeds. thebullyproject.com.
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HEALTH + WELLNESS
National Bullying Prevention Month October recognizes the importance of acceptance October is the month that nationally recognizes the importance of preventing bullying. However, many will agree that supporting and spreading kindness, inclusivity and acceptance is important every day of the year. According to Pacer.org, “National Bullying Prevention Month is a campaign in the United States founded in 2006 by PACER’s National Bullying Prevention Center. The campaign is held during the month of October and unites communities nationwide to educate and raise awareness of bullying prevention.” PACER developed the initial campaign National Bullying Prevention and Awareness Week in response to the need to raise awareness of bullying, as it was historically viewed “a childhood rite of passage” and believed that bullying “made kids tougher,” when the reality is that bullying has devastating effects such as school avoidance, loss of selfesteem, increased anxiety and depression. This issue of Spectrums Magazine recognizes our local businesses and organizations dedicated to making their space inclusive and supportive to those with special needs. They have taken a stand against bullying and work daily to create a safe and nurturing environment for patients, clients, customers and students.
Bullying Prevention Month events and resources Autism Empowerment and Pacer.org partner for Unity Day Wednesday, Oct. 21 Photo courtesy of Cindy Hurlbert
www.autismempowerment.org/resource-center/bullying-prevention/ Podcasts, blog posts and YouTube videos throughout October. Stomp Out Bullying www.stompoutbullying.org/ National Bullying Prevention Center www.pacer.org/bullying Not in Our School www.niot.org A national organization that brings students, teachers and parents together to work on
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being safe, accepting, inclusive and free of bullying and all forms of intolerance.
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Continued on next page
These businesses work to provide a safe, inclusive environment for their clients every day. Show your support by frequenting their business and tell them you heard about them in Spectrums!
Children’s Developmental Health Services says:
Every Child is Special
STOP BULLYING! Albertina Kerr partners with the community to support people with developmental disabilities and mental health challenges to lead self determined lives and realize their full potential.
www.albertinakerr.org/CDHS
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HEALTH + WELLNESS
Faith and inclusivity
Providing an accepting place of worship By Kristina Marie
PART 1 OF A 2-PART SERIES For families who experience a disability, finding a place of faith for the whole family to worship, learn about God and connect with others can be daunting. Trying a new church often means exposing your child to an unfamiliar environment, uncomfortable routines and strict expectations—all of which are more difficult for children and adults with autism and other disabilities. About 80 percent of families who have a member with special needs do not attend church, according to Joni and Friends, a worldwide Christian ministry that serves people and families affected by disability. Many families are fearful that volunteers will not be able to care for their child, some feel rejected, judged or hurt and others don’t want to be a burden. “Unfortunately, although church is meant to be a place where all are welcomed in, just as Christ welcomes us into His family, it does not feel that way for many families who have a loved one affected by a disability,” says Lyla Swafford, Portland-area director of Joni and Friends. “We tend to be creatures of habit and most of us are resistant to change, even if that means a change in perspective and behavior that would make others feel more welcomed and included into our church body.” Joni and Friends seek to be a bridge between those in our communities affected by disability and the churches that seek to welcome them into their church body by offering resources to teach, equip and train church leaders and volunteers, Swafford adds. Dr. Todd Miles, Theology professor at Western Seminary, agrees we may need a change in perspective. “People in America are uncomfortable with death, illness and disability,” he says. “When we encounter people with disabilities in our churches, we are sometimes not sure what to say or how to treat them because we think they are not like us. However, in Genesis 1 and 2, the Bible talks about how all people are created in the image of God. People with disabilities are just as worthy and deserving of dignity and respect.” Still, many families remain isolated feeling overwhelmed and alone in the daily responsibilities of caring for their special needs child.
“We were devout Catholics until my son with autism was 3 ½ years old,” says mom, Lisa Hilster Staffa. “Then he wanted to toddle during mass each Sunday. Couple his toddling with impulse control issues, and after about six months we gave up going. It was just too much stress.” Adapted liturgy may be an option to ensure that all people, and those parishioners with developmental disabilities, feel welcome. “The Catholic church wants all people to feel welcome to celebrate the Eucharist at the regularly scheduled Sunday Masses,” says Angela Paz with the Office for People with Disabilities at the Archdiocese of Portland. “An adapted Liturgy may include simplified language and vocabulary, songs with simplified repetitive melodies, concrete versus abstract opportunities for participation, dramatization of Gospel and more.” Parents can help clergy by offering information and tools used at home and school to make transitions smoother at church. Families should have an honest conversation with church leaders about their loved one’s needs and what is working or not working. “Help them to understand that a child with ASD has strengths and weaknesses just like the rest of us,” Swafford says. “They engage in certain behaviors not to ‘cause trouble,’ but because that is their way of trying to communicate a need. Parents can help people at church learn to speak, act and offer help in a way that is consistent with the way that the child best receives that help. We all need to learn and look for clues that the child is getting overwhelmed. When strategies are put in place ahead of time, this creates a safe feeling for everyone.” However, some families attending church are experiencing barriers. “Many times, special needs children age out of the class that’s most appropriate for them, or are segregated into special classes away from their typical peers in the body of Christ,” says mom Debra Kannan, whose son is 12 with a developmental age of about six. “When churches exclude these children, they isolate the family they are in.” However, isolation is not intentional. Continued on next page
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Faith, continued from page 28 “While the Christian church believes that we should care for those with disabilities, they often just don’t know how to go about it effectively,” says Blake Shelley, area director for Young Life Capernaum. In fact, only 10-15 percent of churches in the United States either have a disability ministry or are planning on creating one. “I desire to partner with churches and address how to better serve those with autism and other disabilities,” Shelley adds. Young Life Capernaum is a Christian nonprofit with a mission to introduce adolescents of any ability ages 12-26 to Jesus Christ. While Young Life builds relationships and introduces these kids to Jesus, the goal is to help get them plugged in with a church body, especially as they approach the age of 26.
READ PART 2 OF OUR FAITH & INCLUSIVITY SERIES ONLINE: spectrumsmagazine.com
Local resources: Amazing Moms: rmbernhardt@yahoo.com Educational Initiatives at the Jewish Federation of Greater Portland: www.jewishportland.org Joni and Friends: www.joniandfriends.org Office for People with Disabilities at the Archdiocese of Portland: www.archdpdx.org REST Support Group: restsupport@hotmail.com Young Life Capernaum: portlandeastcapernaum.younglife.org
“We believe that being involved with the church is the key to lifelong growth and fellowship,” Shelley explains. Diagnosed at age 6 months with Cerebral Palsy (CP) due to a lack of oxygen at birth, Shelley had to overcome many obstacles to get where he is today. “Personally, as a person with a disability, I want to feel included with what everyone else is doing, and I feel like that is not uncommon,” he says. “I think as a church body, we need to think about how we can adapt what we are already doing so that we can include people with disabilities.” Studies about inclusive education have found that when all kids are in an inclusive environment, they learn better because they are more engaged with the material. “How do we embrace the special needs community in our churches?” asks Dr. Paul Anderson, professor of Biblical and Quaker Studies at George Fox University. “By creating space for them. Jesus welcomed children and the elderly. He cared for the needs of the lame and blind, and he touched and sought out those most ostracized by society.” Anderson offers solutions such as creating space in a church by removing pews so there’s room for people in wheelchairs. Or perhaps inclusion starts with a special needs ministry where people in the church come alongside the disabled to help them through the service or class. Another idea is to provide a respite care program for tired parents. In the Jewish community, some are hiring their own aides or therapists to help their child through religious school. “I’ve made it work and broke the mold,” says Risa ColtonFeldman, a mom of two boys with autism. “I want to open up their world and engage them. One way to do this is through the music. For my other son, he has a wonderful memory and he picks up on things at synagogue I don’t even remember.” Rachel Rothstein, director of Educational Initiatives at the Jewish Federation of Greater Portland, says they work toward inclusion in classrooms and synagogue by providing professional development speakers and sensitivity
workshops for all educators in the Jewish community. The Jewish Family and Child Services offers counseling, parent support groups and workshops at local schools and synagogues. They work to inform teachers and religious leaders about promoting acceptance and inclusion of Jewish children and adults with disabilities. “I work with educators to help them provide behavior modifications, accommodations and other practical solutions,” says Corinne Spiegel, program inclusion specialist for Treasuring, Accepting and Supporting Kehillah (Community), also known as TASK. In the Mormon community, manuals and procedures for helping kids with disability are provided to teachers. “It’s a very family oriented community and my son is loved and included with everyone else,” says Lori Woodley, whose son is not able to speak and in a wheelchair. “Someone from the congregation always volunteers to care for him. It’s a calling.” It’s important for parents ask questions ahead of time before trying out a new spiritual community. Some churches now have “inclusion assistants” or “buddies” to help kids get the most out of their mainstream class while remaining with their peers. Big churches often have separate special needs ministries. Sonshine Treasures at Sunset Presbyterian Church is a Sunday school program for developmentally disabled individuals ages 12 and older who are seeking a loving church family to grow in their Christian faith. They worship with the whole congregation, and then go to their Sunday school room where they have a simplified biblical message, prayer and refreshments. “We have learned that looking through the eyes of the Treasures, we see a lot of things we never saw before,” says Byrnace Ristow, long-time Sonshine Treasures volunteer. “They are so transparent and forgiving; always sincere. The Sonshine Treasure ministry has helped us to grow in our own walk with Christ and see how serving others can be a truly amazing and enriching experience.” www.spectrumsmagazine.com
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HEALTH + WELLNESS
MY TURN
One person’s experience with autism
By Erick Mertz
Turns out, we have a lot in common. One lesson taught early in the human services field is to remove the “I” from the equation. As an experienced Case Manager for adults with developmental disabilities, I was begrudgingly able to achieve something like objectivity. However, my training in social work wasn’t exactly conventional. I was a college English major, the proverbial “overdue library card” major—as in, an English degree yields nothing you can’t get with a library card. Falling into social work as a career came by hook and crook—I was the product of volunteer experience that evolved as I advanced in the field. My curiosity and empathy made up for what was lacking in my social work fundamentals. My brother-in-law is a sociologist. Not the amateur kind, offering witty observations on life’s how’s and whys. He’s a bona fide doctor, which basically means he can categorize behavioral trends for a lot of people he’s never met before. If you ask him at parties, he can even do it with his eyes closed. Over the years he’s turned me onto “breaching experiments”—entering into normalized situations and deliberately throw a wrench. Order a Big Mac at Burger King. Answer honestly when asked, “How are you?” No really, try it. It’s fascinating. Working with clients who have developmental disabilities has also raised my awareness to breach experiments. Over the years, my clients have said and done almost everything to flaunt concepts of “normal” (although I remain terminally open and willing to expand that stolid definition). My way of coping has been accepting that what moves me has grown into an equally limitless proposition. As I’ve already stated, we have a lot in common. The “we” in this scenario is Johnny and I. Johnny is my client. Two years ago, I gave up case management and returned to one-on-one working as a community-based skills trainer. This was a part of my game plan to move from the cubicle farm, create flexibility and begin using that English degree to become a writer. Johnny and I spend a lot of time practicing foundational skills such as social cues. Only, on the outside looking in, it doesn’t look so obvious. We shop for clothes, work on expressing his size and color preferences. At the comic shop, we practice comparing options and adhering to a budget. We work on these skills by building in questions for the staff and finding prompts to ask the defined desires that Johnny has.
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“I’ll consider that,” he’ll say, suddenly stuck for how to respond to the regular comic jockey’s inquiry. “Consider which options?” This is my usual response, given with one eye on the clerk in hopes of receptivity. “Or do you know what you want already?” “I think I’m considering,” he’ll continue, grabbing the larger stack. “This one.” One of the more endearing traits I’ve discovered in Johnny is his generosity. He wants to give back, sometimes to his budgetary detriment. He simply does not care though, no matter how often I impress this possibility upon him. When buying a coffee, he’ll tip before we get our total, leading to a sometimes awkward retrieval of a dollar bill from the gratuity jar. We work from a position of strength though: the “take a penny, leave a penny” proposition involves a quarter, I pose the scenario. “Remember when you were a quarter short of popcorn at the movies the other day?” Johnny will pause. “Well,” he’ll say, “They need it more than me.” My favorite response to this conundrum is, “We should all give back.” Who am I to force the alternative? This is the sort of thinking we admire in people, blindness in the face of giving. Part of practicing community skills includes eating at local restaurants. This is one place I’ve opted for a more directive stance with Johnny, working on sharing food and splitting orders. However, it’s taken a bit for Johnny to understand why there is a need to share. When I first ordered tater tots to share, Johnny didn’t quite grasp why. This may seem familiar. He looked puzzled in my direction as I handed back the menu. A visits to the restaurant and Johnny still couldn’t follow the logic of sharing an order. The basket would arrive and he’d look sideways before asking for his own order. The sharing idea was not connecting. Until the day I said, “let’s order tots for the table.” Then Johnny understood. The next time he ordered with clear distinction, “RC for me. We want tots for the table,” he told the server. When he said that, I could not have been more pleased to bump into someone over the ranch ramekin. I couldn’t wait to crow about the moment. “And then,” I relayed, later that night with excitement, “He asked for extra ranch for us. Us! Get it?” Continued on next page
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My Turn, continued from page 30 Johnny has a keen intuition. Sensing the holiday crowd, he pointed to a small, two-seat table tucked into the corner. He wanted anonymity. As much as I admire his intuition, it’s the practical area that may require attention. That, too, we have in common as I did not foresee what was to come either. Before our orders were given, two large tables near us were pushed together to accommodate seating for about 20 or more co-workers. Johnny and I have come to know how to read each other quite well. I waited for the signs that his patience was wearing thin, or that we wanted to leave. But they never came. Johnny, for whom solitude and quiet are essential, small talk being akin to a finger nail on chalkboard, sat back. He opened his Thor comic and waited on RC.
The leader startled. The table went dead silent. He was stripped bare of everything: humor, bravado, momentarily, language. Someone at the table laughed, although I could not tell who it was. Two women continued their conversation as though nothing had happened. Johnny sat with eyes back in Thor, as unaffected as he could possibly be. That is when it dawned on me: in that rapid resumption of normal was where I discerned what had happened between our tables. I had to restrain my laughter as I rose, stooped at that just right angle that conveys humility rather than the mocking sense of same. “I’m really sorry,” I began, still restraining a laugh. “You see, my friend and I…”
At the near table, a leader emerged. You know the kind of barroom personality: one beer in his hand, another in his belly. He holds court as though he were the king of medieval castle, telling the jokes no one else would. He offers the self-deprecating dare that brings everyone out of his or her shell. As I’ve observed many over the years, he’s the conduit. I’ve been him. Now I watch.
I went on to explain: my role; what we were working on; how a simple, generous statement about tater tots turned into a breaching experiment. The office looked on, halfbored, half-shocked. They clearly were not in social work. They happened to find themselves in a social work situation though, and in my quick estimation, they were doing a damn good job of responding.
As the waitress arrived, burdened with trays of food and drink, the leader becomes quite helpful. He directs traffic. “She had that,” he says, pointing across the way. He ordered the calamari.
“You like Thor?” the leader asked.
Moments later, the waitress returned with tater tots—a lot of them. I watched Johnny. When placing his order, Johnny opted to forgo the favored snack for a kale salad (another point of admiration, his willingness to try new, healthy things). As those golden, crispy nuggets lowered toward the table, salt rind glistening in the light from a stained glass chandelier, I saw Johnny’s eyes follow. The leader rose from his seat again, clearing a space for their safe landing. “Who ordered those?” a woman across the table asked. The leader, who in that moment I pictured in a leather tunic, beer stein in hand replaced with bejeweled, pewter chalice, thrust hands against hips. “I did,” he bellowed, heroically. I saw the woman shrink back. “Oh,” she muttered to no one in particular, twirling her drink disappointedly. “They’re for the table,” he shouted back. By now my attention was drawn away from Johnny. Even I had been focused on him, I don’t know if there would have been much I could do. As I relive the moment, I don’t know if there would be anything I would have wanted to do either. Some storms are best blown through rather than past. Out of the corner of my eye, I saw Johnny rise. My first intuition, he’s going to the bathroom. My instinct was wrong. Where a right turn would have been to the toilet, he took a left, hand diving directly into their tray of tater tots. He took two, dunked them with pickpocket dexterity and moved back to his seat.
Johnny nodded. He’s not into small talk, obviously, I think. “Hey, listen,” the guy continued. “No big deal, right? I mean, it’s the holidays.” Gratefully, I nodded. As I pulled myself together, I let the laugh come. It would look like relief instead of the catharsis it truly was. Within seconds, the leader was already onto something else, a golf game with some client. “You ready to go?” I asked. Johnny nodded, pushed his glasses up as he sucked the RC dry. “I suppose.” As we walked to the bar, side-by-side, one of the women from the table watched our every step. Johnny doesn’t notice though. He pays his share and then drifts off. We meet in the hall moments later where I feel the burden to ask: “You want to talk about what happened back there?” Johnny shrugs. His eyes roll up thoughtfully, and then back down without a care in the world. “We should go,” he said. “Mother is making dinner.” Alright, I think. Experiment done. He’s already moved on. I smile and hold the door for him as he passes out into the teeth of December cold. We have a lot in common. Erick Mertz is a writer based in Portland, Ore. He began working with developmentally disabled persons in high school and continues to be involved and remains an active advocate to this day.
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therapy THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION Sensory Processing 101.................................................................................34
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Therapeutic social skills groups for developing: Engagement Cooperation Communication Pretend play Friendships All groups at PlaySpace are designed to meet the needs of children ages 3-10 years who are experiencing communication, social, sensory and behavioral challenges. Groups run year round and can be billed to insurance
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Contact us for more information: Call: 503.224.2820 Email: info@pdxplayspace.com Visit: www.pdxplayspace.com
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1727 NE 13th Avenue • Portland, Oregon 97212
Coordinated care for children with autism Providence offers a full range of autism services, including: Social-skills training and day camps Team assessment and case management with pediatric specialists l Nutrition services and feeding clinics l Parent-training program and co-therapies l l
For information or an appointment, please call one of our clinics: Providence Child Center: 503-215-2233 Providence St. Vincent Medical Center: 503-216-2339 Providence Newberg Rehab and Pediatric Services: 503-537-3546 www.ProvidenceOregon.org/pncc
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THERAPY
Sensory Processing 101 Understanding the brain and nervous system By Joanna Blanchard, MOTR/L Pediatric occupational therapists often use words such as “sensory processing,” “proprioception,” “vestibular” or “registration.” What do these terms mean for children and how do these concepts translate to everyday experiences?
This allows us to interact with our physical, social and cultural environment.
Sensory processing relates to our nervous system: organs including the skin, eyes, nose, mouth, tongue, ears, muscles and basically any other part of the body. When these areas of the body come into contact with, receive information and interpret the outside world describes sensory processing.
Try this: take one of your forearms and squeeze it with the other hand. Firmly apply pressure, squeezing up and down the length of your arm, massaging for about 10 seconds.
In layman terms, what does this look like?
A sensory system in alignment provides the ability to:
Now, rest both arms at your sides or in your lap. Do you feel a difference between the two arms now? Congratulations, your sensory systems are working! (Or at least some of them are).
1. Take in sensory information 2. Interpret and organize that information 3. Respond meaningfully and effectively
The touch alerted your tactile system and indicated that the touch to your arm wasn’t harmful. Your proprioceptors (little nerve receptors in your muscles and joints) felt
Sensory processing relates to our nervous system: or body. When these areas of the body come into contac pressure, movement, a change in activation and position and in turn “woke up” a little. Your vestibular system helped your body stay upright, balanced and remain still by mixing information from your eyes, core and neck and coordinating with your inner ear. That massaged arm is now awake and activated, yet strangely also relaxed and comfortable. Each sub-system took in information and worked together with the others to interpret and adjust, drawing on previous experiences. All of the sensations were weaved together and integrated to make sense of what was happening, hence the term sensory integration. This example provides a snapshot of how your nervous system works and how the brain puts together complex information. What’s presented to you is just how to simply feel things. Now, imagine if your tactile system was hypersensitive Continued on next page
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Sensory, continued from page 34 and overactive to touch or input. Instead of feeling relaxed from the arm massage, the body might interpret the touch as uncomfortable as needles, unable to process if it’s a good touch or a bad touch, large or small, if one should pull away (flight) or strike out (fight). This is a system having a hard time with reception and interpretation of touch input. The proprioceptive system, interpreting your muscles and joints, can also be underactive. A touch to the arm can produce a super slow, underwhelmed response: “Hey, do you feel something on that arm? Do we have to do anything about it? Because it takes a lot of effort to wake that arm up and move it, and plus I might fall off this chair. I just can’t do both the arm and my trunk at the same time. Let’s just shut it out.” These are just two examples of how people register sensory information—the intensity an individual’s system registers and responds to sensory input. This varies from person to person and even day to day depending on fatigue, hunger, health and various other factors. A person can have different sensory preferences or levels of registration for different areas. Some people love very hot showers (seeking intense tactile input), but hate loud sounds (avoiding intense auditory input). Some people love spicy foods, but can’t stand the feel of a fuzzy sweater. These are all normal variances among all people and even animals. Sensory processing and integration comes from a primal need for survival that is ever-changing, depending on our situation. When a rabbit is munching clover, blissful in the sun and
feeling safe and comfortable, sort of like the bunny on high alert at all times. When the sensory preferences or aversions become so strong that they interfere with a person’s ability to participate in everyday activities and quality of life suffers, it is classified as a disorder. Sensory Processing Disorder (SPD) happens when a person is unable to interpret or respond to sensory information appropriately, and it interferes with ability to function. While we can’t be comfortable at all times, participation in daily life should be attainable and if it isn’t, treatment options should be pursued. Sensory processing disorders can be caused by motor, neurological or processing issues, under-or overexposure, trauma and sometimes it’s just “how we’re wired.” Sensory processing disorder can manifest by affecting sleep, eating or elimination. Other signs include poor or delayed motor or language skills, fussiness, emotional instability, hyperactivity, distractibility or oversensitivity to stimuli. Anxiety, attachment disorders, autism, Attention Deficit (Hyperactivity) Disorder are often co-existing conditions with SPD. Remember that bunny? If he’s an anxious bunny before he even goes outside, of course he is going to be on hyper-alert. Mental health treatment can help, which is why therapists often work together and combine treatment strategies. Now, if the over-reactive bunny could assess how his friends
organs including the skin, eyes, nose, mouth, tongue, ears, muscles and basically any other part of the ct with, receive information and interpret the world around us describes sensory processing. surrounded by other bunnies, his ears are down and his heart rate is relaxed. This helps filter out background noise (sensory input), such as the wind and birds.
are reacting, take deep breaths to calm down or stay close to a rabbit hole to feel safe, he would be using strategies to regulate his responses.
However, once the bunny thinks he hears the cry or sees a shadow of a hawk fly overhead, he freezes. Suddenly he registers every single flicker of leaves and every twig snap: he is over-reactive, ready to run and hide. His heart rate increases, his muscles tense, his ears are perked up and he may even “eliminate” (poop or pee) to keep all of his body’s blood supply in his muscles instead of digestion. He will jump at the slightest sound and run if he can. This is how he survives.
Sensory processing challenges can be supported and changed. How we respond or have strategies is how we self-regulate. Techniques can be learned to help lower our sensitivity or to get used to outside stimuli, adapt and respond appropriately.
If that bunny has an under-active system that doesn’t register (or misses) the cues, he will be easy prey. If the bunny has a constant overly-reactive system (on high alert, looking for hawks) all of the time, he will never be able to relax, eat or sleep. A stable, alert state and the ability to interpret sensory input correctly are needed for survival.
In turn, therapy can help retrain our bodies and brains to help practice to increase the ability to tolerate stimuli. Occupational therapists use movement and sensory strategies to help practice this. Our world is full of sensory input and we each bring our own perspective and reaction. How we take it in and respond is key to how we function, and also makes us each unique in what we find beautiful and exciting.
Typical sensory processing has a range and we all have individual preferences, some stronger than others. A sensory system struggling to interpret input correctly will struggle to
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IEPs, continued from page 21 students, including both employment by the public agency and assistance in making outside employment available. 3. Placements In determining the educational placement of a child with a disability, including a preschool child with a disability, the school must ensure that the placement decision is made by a group of persons, including the parents, and other persons knowledgeable about the child, the meaning of the evaluation data, and the placement options; and is made in conformity with the Least Restrictive Environment (LRE) provisions of the regulations. The child’s placement must also be determined at least annually; be based on the child’s IEP; and be as close as possible to the child’s home; 4. Nonacademic settings In providing or arranging for the provision of nonacademic and extracurricular services and activities, including meals, recess periods, services and activities, each school must ensure that each child with a disability participates with non-disabled children in the extracurricular services and activities to the
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maximum extent appropriate to the needs of that child. The school must ensure that each child with a disability has the supplementary aids and services determined by the child’s IEP team to be appropriate and necessary for the child to participate in nonacademic settings. 5. Other factors The strengths of the child; the concerns of the parents for enhancing the education of their child; the results of the initial or most recent evaluation of the child; the academic, developmental and functional needs of the child. This article was reprinted with permission from www. friendshipcircle.org/blog.
SMALL CLASSES
BIG RESULTS Every moment is a teaching moment at Bridges Middle School, an independent nonprofit school in Portland, Oregon, serving fifth through eighth grade students with learning differences.
BridgesMS.org Small Classes, Big Results
Building Confidence We Transform & Competence Lives
Admissions
Bridges Middle School, formerly Gately Academy, provides a highly creative and focused school setting for students who benefit from small class sizes, strong academics and individualized instruction. Bridges’ students gain the academic, social and self-advocacy skills necessary to succeed in school and at home.
Many of our students have ADHD, ADD, High-Functioning ASD and/or specific learning disabilities that hamper their ability to thrive in more traditional settings. Too often they have been victims of bullying, losing confidence and motivation. The teaching team at Bridges meets each student where he or she is academically and socially.
Applications are accepted throughout the school year. We invite you to contact our office to schedule a student-led tour of our campus and meeting with admissions staff to learn how we can help your student succeed in school—and life.
We offer a variety of social and emotional supports to our students and their families. Bridges’ passionate team of teachers and counselors help students understand the complex nuances of middle school culture, providing responsive support services for challenges that arise within the school community.
Call or email us to schedule your tour today.
37 Bridges Middle School | 716 NE Marine Drive | Portland, OR 97211 | 503.688.2922 | info@BridgesMS.org www.spectrumsmagazine.com
SPONSORED BY
PROVIDER PARTNER
directory
THE PORTLAND/SW WASHINGTON METRO AREA HAS HUNDREDS OF EXPERT PROVIDERS, THERAPISTS AND PROFESSIONALS. FIND YOURS TODAY. Spectrums Magazine works to bridge the various communities serving those with autism to create a hub of information and resources—all in one place. Our print directory offers a categorized listing of provider partners that value access to information and help create a robust autism community. Want to sponsor our directory or have your business listed? Contact us to learn more: info@spectrumsmagazine.com. Spectrums Magazine doesn’t endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
www.spectrumsmagazine.com APPLIED BEHAVIOR ANALYSIS (ABA)
AUDIOLOGY
OCCUPATIONAL THERAPY
Play Connections Autism Services, LLC 1800 NW 169th Place, Suite B100 Beaverton, Oregon 97006 (503) 737-4693 www.playconnections.com melanie@playconnectcenter.com
Hearing Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 802-5273 www.albertinakerr.org
Children’s Developmental Health Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 228-6479 www.albertinakerr.org
Our Early Learners receive individualized, comprehensive and effective treatment programs to build a solid foundation for lifelong learning.
Pediatric and adult diagnostic hearing evaluations, OAE testing, newborn hearing screenings, hearing aids and all make and model repairs.
Developmental Behavioral Pediatrics, Clinical Psychology, Speech-Language Pathology, Occupational Therapy, Pediatric and Adult Audiology.
ASSESSMENT + DIAGNOSIS
DEVELOPMENTAL BEHAVIORAL HEALTH
Pediatric Therapy Services (503) 666-1333
Dr. Linda Lee Creative Holistic Counseling & Assessment PO Box 65523 Vancouver, Washington 98665 (360) 334-6301 linda@creativeholisticcounseling.com www.creativeholisticcounseling.com
Children’s Developmental Health Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 228-6479 www.albertinakerr.org
New Horizons Wellness Services LLC (503) 352-0240
Developmental Behavioral Pediatrics, Clinical Psychology, Speech-Language Pathology, Occupational Therapy, Pediatric and Adult Audiology.
Synergy Autism Center Barbara Avila, M.S. RDI® 7739 SW Capitol Hwy, Suite 220 Portland, Oregon 97219 (503) 432-8760 synergyautismcenter@gmail.com www.synergyautismcenter.com
Psychological assessment for diagnosis, treatment planning, and counseling; collaboration with all professionals on the treatment team. AUDIOLOGY Center for Communication & Learning Skills Dr. Judith Belk 371 6th Street Lake Oswego, OR 97034 (503) 699-9022 judybelk@gmail.com www.commlearningskills.com/ Serving people with mild-severe challenges: speech, language, learning, auditory processing, sound sensitivity, reading, attention & memory.
NATUROPATHIC MEDICINE Natural Choices Health Clinic Mary Frazel N.D. 3007 SE Belmont Street Portland, Oregon 97214 (503) 445-7115 naturalchoicesclinic.com drmaryfrazel@msn.com Providing family naturopathic medical care for over 20 years. Areas of expertise : autism, ADHD, learning/behavior/sensory challenges.
RDI®
Providing the highest quality & family-based interventions to target the foundations of relationships and learning with people of all ages and abilities. SCHOOLS Bridges Middle School 716 NE Marine Drive Portland, Oregon 97211 (503) 688-2922 info@bridgesms.org www.bridgesms.org Independent nonprofit school providing a highly creative and focused curriculum for students in grade 5-8 with learning differences.
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Directory, continued from page 38 SENSORY INTEGRATION/PROCESSING
SPEECH-LANGUAGE THERAPY
Children’s Developmental Health Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 228-6479 www.albertinakerr.org
Children’s Developmental Health Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 228-6479 www.albertinakerr.org
Developmental Behavioral Pediatrics, Clinical Psychology, Speech-Language Pathology, Occupational Therapy, Pediatric and Adult Audiology.
Developmental Behavioral Pediatrics, Clinical Psychology, Speech-Language Pathology, Occupational Therapy, Pediatric and Adult Audiology.
Neurotherapeutic Pediatric Therapies 610 High Street Oregon City, Oregon 97045 (503) 657-8903 www.nt4kids.org info@nt4kids.com
LanguageCraft 2121 SW Broadway Street, #121 Portland, Oregon 97201 (503) 943-0998 lucas@languagecraft.org www.languagecraft.org
Family-centered clinic offering occupational/ physical therapy and mental health services. Open to all children in 4 Portland area locations.
A collaboration of providers offering speechlanguage, assistive technology, social groups, tutoring, martial arts and more!
SOCIAL SKILLS + GUIDED PLAY Brooke Psychologists (ages 10+) (503) 481-0020 PlaySpace (503) 224-2820
SPECIAL EDUCATION LAW Byrd Legal Services Louis B. Byrd, Jr., Esq. 1104 Main Street, Suite G10 Vancouver, Washington 98660 (360) 693-7078 louis@byrdlegalservices.com www.byrdlegalservices.com
New Horizons Wellness Services LLC (503) 352-0240
The Hello Foundation PO Box 623 Gladstone, OR 97027 (503) 228-2942 info@thehellofoundation.com www.thehellofoundation.com We provide exceptional speech and occupational therapy, when and where you need it: in our clinic, online and everywhere in between.
Identifying and obtaining the special educational services your child needs to make the most out of life.
Everyday Speech & Language 5201 SW Westgate Drive, Suite 100 Portland, Oregon 97221 (503) 577-7283 phaedra@phaedraurbanslp.com www.everydayspeechpdx.com
SPECIAL EDUCATION LAW
Collaborative treatment services for speech, language, literacy and social communication for children with ASD.
Wiscarson Law Diane Wiscarson, Attorney at Law 510 SW 3rd Avenue, Suite 439 Portland, Oregon 97204 (503) 727-0202 diane@wiscarsonlaw.com www.wiscarsonlaw.com
SPORTS + FITNESS Bustin’ Barriers (503) 869-7112
We empower families via a sensitive approach to special education law through personal experience, attentive staff and an efficient model. www.spectrumsmagazine.com
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