Spectrums Magazine Winter 2015 for the Autism Community

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FREE PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER

WINTER 2015

SPECIAL NEEDS TRAVEL DIVORCE + BLENDED FAMILIES THE POST-HIGH SCHOOL GAP ACUPUNCTURE AND AUTISM DUAL DIAGNOSIS SCHOOL VS. PRIVATE PRACTICE OT

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N DI ! N A NG R B DI 5 E R AN ge E a P E’R EX ee p S W

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“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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OPEN TO PUBLIC

www.sensorykidsot.com


WINTER 2015

Photo by Jeff Mitchel

contents

INCLUSIVE COMMUNITY CREATIVE SPACE FEATURED SECTIONS LIFESPAN

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Divorce and blended families Navigating the challenges of life, dating and remarriage with special needs kids.

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Grandparents and autism Helping bridge the generational gap and promoting autism acceptance.

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The post-high school gap How to plan for the transitional period between 18-21.

RECREATION

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UpLife Creative Center Community center offers art and sewing classes open to anyone. Special needs travel Holiday time means travel. We break down how to plan ahead for successful trips.

HEALTH + WELLNESS

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Dual diagnosis Handling when the doctor says it’s more than autism.

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My Turn How fear can penetrate many aspects of an autistic’s life.

Chinese medicine and autism Examining the many benefits of using acupuncture as a treating symptoms of autism.

THERAPY

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Encouraging communication in those who are nonverbal Presuming competence and improving ways to understand each other.

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Directory of Community Provider Partners Categorized listing of local providers.

EDUCATION

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School vs. private OT Understanding occupational therapy in private vs. school-based setting. www.spectrumsmagazine.com

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www.shayneberry.com

FROM THE PUBLISHER

WINTER 2015 | VOLUME 3, ISSUE 4 SPECTRUMS MAGAZINE LLC Courtney Freitag, Founder and Publisher

When my son was 3 years old, he had a deep fascination with doors. Little did I know that this would be a strong metaphor for my journey, both personally and professionally. Doors opening and closing; opportunity knocking—you get the idea. After meeting thousands of families, autistics, professionals, educators, therapists and advocates in the course of this magazine’s publication, opportunity knocks once again. In 2016, Spectrums Magazine will rebrand to The Spectrum Experience—and a new adventure begins. Our new brand, reflects the opportunity for sharing raw, intimate and honest wisdom and experiences of life inside the spectrum. It’s about connecting with those in your community, learning about a new therapy, laughing or crying at shared experiences, or finding new ways to be present. Additionally, we’ll be adding a second magazine to the brand by launching a quarterly magazine in Seattle. The Emerald City will get its own go-to resource, helping foster strong community, encourage advocacy and acceptance, as well as provide interactive content via the revamped website. These new doors would not have opened without the incredible support and collaboration from the Portland autism community. I’ll be looking to you for continued involvement, experiences and participation. Autism is a journey and we meet you along the way. Come along for the ride and sign up to follow the launch: www.thespectrumexperience.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 Winter is upon us in the Pacific Northwest. So is holiday travel, gatherings and festivities.

Courtney Freitag Founder and publisher

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www.spectrumsmagazine.com

Our story on page 18 helps with strategies to plan ahead for holiday travel and how preparations can help the whole family.


WE A RE REBR A

NDING & EXPAN

DING!

After 3 successful years publishing Spectrums Magazine in the Portland area, we are adding a second magazine to our brand! Seattle’s autism community will have their very own go-to print and online resource in Spring 2016. (And speaking of brand, look for our new name: The Spectrum Experience.) We don’t just have readers. We have followers. The Spectrum Experience will continue providing the excellent editorial features, human interest stories and resources you’ve come to expect. Additionally, our robust revamped website will offer video tutorials, training and webinars, as well as rich content to better serve our audience.

Sign up to follow the launch: www.thespectrumexperience.com. Thank you for the support, encouragement and involvement to make our autism community stronger and more robust.

www.spectrumsmagazine.com

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lifespan ALL AGES AND ALL ABILITIES

IN THIS SECTION Divorce and blended families.......................................................................8 Grandparents and autism............................................................................ 10

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EVERY STUDENT IS UNIQUE AND DESERVES A SPECIALIZED PROGRAM ACCORDING TO THEIR NEEDS.

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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

www.spectrumsmagazine.com

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LIFESPAN

Divorce and blended families Creating harmony for kids on the spectrum

By Jennifer Costa

Divorce, remarriage and the blending of families can all be stressful situations, in the best of circumstances. However, for children on the spectrum, these transitions can be particularly troublesome. This leaves many parents wondering how to handle such life changes without causing undue stress. It’s a widely circulated myth that the divorce rate among families with autism is as high as 80 percent, but this has largely been debunked by researchers. According to a study conducted at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, the divorce rate for families with a child on the spectrum is roughly the same as those without. Despite the lack of evidence for high divorce rates among autism families, the divorce statistics for all first marriages across the United States remains at around 50 percent. It’s clear that many children on the spectrum will end up in a blended family at some point in their childhood. Nif Lindsay has navigated the waters of blending a family with a child on the spectrum. Her son shares time between the household that she shares with her pre-teen son, her fiancé and his sons, and the home of her former partner and his new wife. She says that during the dating process, she waited several months before making a gradual introduction

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between her new boyfriend and their children. Though transition to this new family dynamic was technically out of her son’s control, she continually communicated and allowed him the space to share his thoughts and concerns. For Lindsay’s family, communication was the key to success. Both she and her former partner worked together in the best interest of their son. She stresses how important the role of mediation sessions played in planning the logistics of parenting between households. She says they served as a “reality check” for all parties and kept the focus child-centered. JoAnne Murphy also parents in a blended family, taking a significant role in the life of her husband’s son, who was diagnosed with autism at age 4 ½. After a period of instability, she and her husband were able to provide him with the consistent support that was needed to help him thrive. Murphy reiterated that constant communication was also important in securing success of their blended family. She and her now-husband both valued the concept of taking things slow during the dating process as her partner’s son got to know her. Recently, the couple had a baby, bringing a younger sibling into the mix. She says she is fortunate that the two children have been bonding positively and the family continues to flourish.

Continued on next page www.spectrumsmagazine.com


Blended, continued from page 8 Both mothers emphasize the importance of prioritizing the children and taking into account their unique needs. Parents naturally want to provide the best home environment for their entire family, and this sometimes leads to challenges for kids with special needs. Family Therapist Jackie Reade suggests that dating couples speak openly about any challenges they face and understand that no relationship is perfect. There are several thoughts to keep in mind during these transitions. • Allow each child to express their emotions as much as he or she are willing or able. Understand that children could experience behavioral changes. Listen and respond during this transition time. • Encourage positive relationships by focusing on the strengths of each individual. Do not compare children with each other or their parents. Likewise, do not compare adults with other adults outside of the household. • Never place children in the middle of conflict. Though it’s often difficult, don’t speak poorly of another parent.

• Provide structure and review the new routine. Focus on consistency and build new traditions. • Keep teachers, therapists and service providers in the loop. Don’t take it personally if a child chooses to communicate with someone outside the family about what they are experiencing. • Consider sibling support for neurotypical children to ease the building of new relationships. • Remember that the main priority is raising a healthy, happy child. For Lindsay, the experience of blending two families has been mostly positive, but like any family, hers has had their share of struggles. She hopes that stories like hers encourage other single parents with children on the spectrum to consider a future that could lead to marriage and a blended family. “These are the lessons we teach our kids,” she says, “Let’s not make them from a place of fear.”

Blending families who have children with special needs is a delicate balance. Nif Lindsay and her partner practice open communication and space for the kids to share feelings.

Photo by Brenna King

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LIFESPAN

Grandparents and autism Building acceptance across generations

By Shannon Flynn

Generational gaps and different parenting styles may make it difficult for some grandparents to relate to their grandchildren. This can be even more true if the grandchild has autism. However, grandparents play an important role in the lives of children and grandchildren, so it’s important to understand autism and learn the best ways to help your family.

sure what causes autism. Researchers think it’s likely caused by a combination of genetic and environmental factors. One thing is concrete: autism isn’t caused by bad parenting. Autism is no one’s fault.

Understanding Autism: The Basics

Grandparents of children with autism face special challenges. Some of the most common problems are: trying to help without being intrusive; believing that there’s not enough discipline; and unintentionally sabotaging routine and diet.

There are many myths and misinformation about autism, therefore educating yourself is one of the most important things you can do. Increased awareness, studies and treatment of autism has yielded a lot of information about the disorder. Ensuring that you have a basic understanding is important. In the simplest terms, autism is a group of conditions with similar symptoms. It impacts social skills, communication, interests and behaviors. While autism affects these areas, the way it presents is different in every child, so not making assumptions about children with autism is essential. The cause of autism is unknown, however many new studies make assumptions about the cause of the disorder. However, the truth is no one knows for

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The Generation Gap: Common Problems and How to Solve Them

Many grandparents of children with autism find themselves in a difficult situation: they want to help with their grandchild, but they don’t want to be intrusive. However, it’s critical for grandparents to support parents in every way possible. “Grandparents can be such a wonderful resource for their children and grandchildren,” says Dr. Erin Moran, clinical psychologist with the Portland Autism Center. Parents of children with autism experience a great deal of stress and rarely have time for themselves. Grandparents can help by providing much needed respite Continued on next page

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Grandparents, continued from page 10 care. This can take many forms, and the best way to understand what the family needs is to have an open and honest dialogue. If you’re a grandparent seeking to be more involved, discuss the possibility of participating in the child’s therapy, school meetings or discussion of county services. This involvement provides the opportunity to become more involved in a grandchild’s care, and also provides a neutral third party. A therapist, clinician or professional may help provide input or conflict resolution without intruding on a family’s desire to not be judged on parenting styles or methods. On the subject of judgment, another common disconnect between parents and grandparents surrounds discipline. “Some grandparents can feel like there’s not enough discipline,” Dr. Moran says. Grandparents may feel their parenting style can apply to their grandchildren. “Grandparents might think what worked well for parenting for them, should work well for the grandchild as well,” she adds. As a grandparent, you need to realize two things: your child is having a very different parenting experience than you did because their child has autism; and suggesting that your grandchild isn’t being properly disciplined makes parents feel judged. The best thing you can do is to be understanding, and embracing that your grandchild isn’t intentionally misbehaving. “What appear to be bad choices, aren’t really choices. They’re more impulses,” says Dr. John A. Green III, founder of the Evergreen Center in Oregon City. As a result, children with autism don’t benefit from negative consequences. It’s best to reinforce the desired behavior and provide redirection. “We do a terrible disservice to kids when we

punish them for something they can’t help,” Dr. Green says. A final problem involves routine and diet. Routine is essential for most kids with autism, and families often discover food aversions and special diets play a huge role in their child’s life. Because grandparents are not with their grandchild day in and day out, they can unintentionally sabotage a routine or adherence to diet. Children with autism can be linear thinkers and rigid. Therefore, knowing exactly what to expect during a day can aid in transitions. Families are very diligent to create a safe, predictable routine for their kids to help them feel secure. In the name of fun or spending more time together, some grandparents deviate from the schedule. This can be distressing to children with autism and it can make parents feel disrespected. The best thing you can do is learn your grandchild’s schedule and be respectful to stick to it. Diet is another area that parents of children with autism carefully orchestrate. However, diet can sometimes be an area where parents and grandparents disagree. “Grandparents take the role of comforter,” Dr. Green says. Most of the time, this is a wonderful thing. However, it can become a problem when grandparents give certain treats to their grandchildren. Some children with autism are on diets that eliminate foods containing dairy, sugar, gluten or dyes. These ingredients can cause behavior problems in children on the spectrum, often after the grandchild returns home. This is why it’s so important to ask about your grandchild’s diet and to respect it. Final Thoughts This article’s advice can be summarized in two words: love and respect. The best thing that you can do for your children and grandchildren is love and respect them. If you always do these two things, you’ll find it much easier to connect with them.

Helpful books + resources: Grandparent Autism Network: www.ganinfo.org Parent Tips for Grandparents: www.pathfindersforautism.org/articles/view/parent-tips-for-the-grandparents Six Tips to Help Raise Grandchildren Who Have Autism: http://goo.gl/RUHXwL

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LIFESPAN

The post-high school gap Preparing for life after graduation

By Diane Wiscarson and Amy Reid, Attorneys Many parents who work tirelessly to advocate for special education services for their children, from early education all the way through high school, are often unaware of their children’s rights between the ages of 18 and 21. This frequently makes the transition from educational services to adult services confusing. With little guidance provided by districts or state agencies, many parents find the process of locating and receiving necessary services for their child to be quite difficult. The most successful stories are from families with the time and resources to locate essential services through their own research and persistence. Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to special education and related services until the end of the school year following their 21st birthday or whenever the student receives a regular high school diploma—whichever comes first. Once a student receives a diploma, regardless of the

student’s age, the right to special education and related services terminates. In Oregon, outside of school district services, supports through Developmental Disability Services (DD) and Oregon Vocational Rehabilitation Services (OVRS) are also available to those with disabilities. OVRS assists with employment by providing job coaches, job developers, job training and sometimes items like specialized clothing for a specific job. OVRS works with the disabled person, the community and businesses to develop employment opportunities. DD provides mainly respite care, but in certain circumstances individuals may qualify for additional services, like cleaning services or assistive technology. Unfortunately, you must reapply for DD services every year. Lidia Saavedra, the mother of two boys with autism and a family advocate, stresses that answering the over 100-question intake accurately when reapplying each year makes a huge difference in the services received. “When families are not frank and open about the impact of the disability on their child and family, services may be reduced or not offered at all,” Saavedra says. When Becky Berger’s son Griffin, who was diagnosed with autism at the age of 2, turned 18, she vowed that he would be living on his own, working in the community, and making friends by age 23. Now 21, Griffin is well on his way to achieving Becky’s dream for him. Griffin received transition services through Hillsboro School District, as well as other state providers to help prepare him for employment. He worked in placements within the district, like Longbottom Coffee and Tea, before graduating last June. Griffin began his first paid job at Metro West Ambulance in December of 2014. He works 15 hours per week as part of a group of employees known as Vehicle Service Technicians. He assembles and inventories various medical kits that Emergency Medical Technicians (EMTs) put in ambulances. After a few months on the job, Griffin began doing most of the work on his own and the work became very successful. Berger recently purchased a home within walking distance of Metro West. Becky hopes “that one day Griffin will live in this home, with support, and be able to walk to and

Dan is happy with his employment and consistently exceeds productivity benchmarks by his manager at Pizzacato. www.spectrumsmagazine.com 12 set Photo courtesy of Fitzgerald family.

Continued on next page


Gap, continued from page 12 from work.” Ultimately, an incredible team, including his family, pushing for the supports necessary for him to be successful is what made a difference for Griffin in his post-high school experience. Pat and Ruth Fitzgerald, whose 21-year-old son Dan lives at home, receive services and supports through Portland Public Schools’ Community Transition Program (CTP), Supplemental Security Income (SSI), Medicaid, Multnomah County Developmental Disabilities Case Management, the K-Plan, the state Department of Vocational Rehabilitation (Voc Rehab) and SSI’s Ticket to Work Program. SSI, job and recreational coaches, and relief caregivers through the K-Plan, have been essential to the family. To learn about the available services and supports, Dan’s family utilized the organization Family and Community Together’s (FACT) list serve to inform them of free meetings that explored the transition from high school to adulthood. They also hired an advocate, or “guide” as they call her, to help navigate the Medicaid intake meeting and initial K-Plan meeting with Multnomah DD. Dan was referred by Voc Rehab to Dirkse Counseling and Consulting to help place him in meaningful employment. Dirske fashioned a job at Pizzicato for Dan after extensive observations during school activities and at his volunteer work. “Dan is happy with his employment and consistently exceeds productivity benchmarks set by his manager,” Fitzgerald says. “He easily completes his two-hour shifts and eagerly devours the complimentary slice of freshfrom-the-oven pepperoni pizza at the end of each shift.” Dan also volunteers at Potluck in the Park, The Rebuilding Center and Clay Street Table, and is still enrolled in CTP through Portland Public Schools. Saavedra began transitioning her children at the age of 12. She knew that they would need to start the transition process at a young age, so she had the district begin the planning early. In the beginning, she set up volunteer opportunities for Emilio and Javier with the Oregon Zoo and the Humane Society. She then worked closely with each child’s IEP team and state agencies to find, and even create, paid employment opportunities for both her children. Both Javier and Emilio enjoy their current employment. Javier is employed at the Portland Airport as a service rep for rental car companies. He cleans the cars and moves them around as needed. Emilio is working four jobs. He helps with housekeeping and folds towels for La Quinta and picks up trash, paints barrels and does various other maintenance work for St. Helens Parks and Recreation. Emilio also works for American Family Insurance, helping to send out birthday cards to customers, and he enjoys recycling. Saavedra believes that “school district staff often do all they know how, and there is simply a gap between what districts provide and what state agencies provide.” She says

Griffin, diagnosed with autism at age 2, had strong family support. Strong transitional plans put into place helped to ensure his future success. Photo courtesy of Berger family.

families need to push for what their individual child needs to be successful. “Families may often have to research and create employment opportunities and accommodations for their children to reach their potential,” she adds. Saavedra found or created every employment position in which either of her boys has ever worked. Tracy Walker’s son, Benjamin, also has autism, but he has not been so lucky when it comes to finding the necessary supports he needs to succeed as an adult in the community. Ben’s parents paid for private school, where he graduated with a regular high school diploma. He was able to achieve the regular diploma with an aide, paid for by the family, and accommodations. However, once he graduated, any school district services he may have been able to receive from 18-21 ended. This means that he did not receive any public school transition services. Since graduating, Walker says, “it has been a constant fight for the minimum supports Ben has, which are nowhere near the level of supports he actually needs.” Ben has registered for some community education classes at Portland Community College (PCC), but he is unable to get the assistance he still needs, like an aide, to be successful in other classes offered at PCC. Ben receives funding for Personal Support Workers (PSW) to help him work on his Individualized Support Plan (ISP). However, Walker has had a difficult time finding individuals to fill positions that pay only $13.75 an hour, Continued on page 38 www.spectrumsmagazine.com

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recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION Inclusive art space opens in Northeast Portland........................... 16 Traveling with special needs..................................................................... 18

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Photo by Jeff Mitchel


We specialize in teaching to a spectrum of learners. • Specializes in Autism • Passionate staff • Unique class options • Only exclusively special needs gym in Oregon • Winter camps: Dec. 28-30 from 9 am - noon

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RECREATION

Inclusive artistic space for all Full Life adds creative center to its services By Jeffrey Rindskopf

Joe Compton’s time at work is split between paid labor and volunteering, spending his time either cleaning or sewing. He loves his work. “I never knew how to sew,” Compton says. “But they taught me here.” Compton, a 26-year-old with Asperger’s syndrome, works at the UpLife center, a new community fixture in Northeast Portland. UpLife provides an art space for people with disabilities to learn and explore their creativity. Compton transferred to the center through Full Life, its non-profit parent company that helps people with disabilities find employment.

Bloom, along with her husband Ron Bloom, have both volunteered at UpLife. Ron volunteers by teaching weekly classes and also helped create the loom used by students and volunteers. “They wrapped a cardboard box with fiber so that it could become a loom that anyone could use for their weaving,” Naomi explains. “It’s part of their (UpLife’s) whole recycle ethic.”

Volunteers, like Compton, work for pay only two out of their five hours each day. However, they are the lifeblood that helps the center continue despite the inherent financial challenges of a start-up organization.

Scott Rector, CEO of Full Life, explains that sewing wasn’t originally the sole focus of the center when UpLife was first founded earlier this year. Community feedback spurred its rapid growth.

“There are like 90 kids there [at Full Life] all day long,” Compton says. “There’s like seven or eight here, so it’s a lot better.”

“There was a high demand for sewing lessons,” Rector says. “We were able to develop a more in-depth sewing program based on that feedback.”

UpLife offers many arts programs, including ceramics and painting, but Compton prefers to spend his time sewing. He makes new items from the scraps of fabric donated by people like Naomi Bloom.

UpLife’s continuous goals include helping the center thrive, serving the community and ensuring they reach a large number of the population.

“We periodically get garments that can’t be used

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anymore, and so we take those and we have our own thrift shop,” Bloom says. “The material could be a skirt cut into strips, and they use those strips to weave something new.”

“We rely largely on word-of-mouth, a process that can take longer than we would like,” Rector says. Continued on next page

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UpLife, continued from page 16 Compton has certainly done his share to promote the center through his own enthusiasm for the people and the programs.

volunteers play such an important role in the structure of UpLife. Our classes are run by volunteers, and our disabled population makes up a large part of our volunteer force.”

“I’ve talked to a bunch of my friends to try to get them to work here,” he says.

In addition to Ron’s sewing classes, the center offers various summer programs for children. Nicole McKinney, better known to young Portlanders as Nikki Brown Clown, hosts regular preschool playgroups on Tuesdays. She devotes half of each one-hour session to visual art, and the other half to music and dance. Children of all abilities take part in summer camp programs, working closely with a disabled population widely varied in age.

UpLife is an organization still in its infancy, and it’s bound to experience a few growing pains. Finding adequate funding has been the most enduring of all. “Portland has a competitive non-profit market and it can be difficult to set yourself apart from other non-profits in the city,” Rector says. “We know that we had an important niche to fill, but how do you encourage people to be a part of something that isn’t established yet?” Cuts to vocational training programs, like Full Life, caused training organizations to abandon their art programs. From its conception, the UpLife center had something to prove—namely, that art programs are valuable and should not be eliminated to simply save funding. “The program was created to allow those with developmental disabilities to continue to do the things they are passionate about,” Rector says. Together with Full Life founder Rachel Bloom, the group recognized the community value in creating an integrated artistic setting for both people with and without disabilities. They felt that art helps to create meaningful relationships while also improving tactile and motor skills. “Our disabled population can enjoy an environment that puts no limits on creativity, and encourages selfexpression,” Rector adds. The center aims to be as accessible as possible, offering drop-in classes and observation times throughout the week. Similarly, volunteer opportunities are available to everyone, regardless of age, experience or skill. Volunteers are fingerprinted and screened to create a safe, welcoming environment. “We have limited space, so accommodating everyone can be a challenge,” Rector explains. “That’s why our

“There are people here who are 55 or 60,” Compton says. UpLife provides classes and activities to provide students and volunteers with a semi-structured environment, allowing for learning as well as individual exploration. “We basically follow what the instructors tell us,” Compton says, “and then we go off and start sewing and ironing once we get the instruction from them.” These modest sewing classes have become a major boon for the center, selling the completed custom-made tote bags through UpLife’s online or physical space on Northeast Killingsworth. Proceeds from the sales of these entirely upcycled bags help to keep the lights on and the staff optimistic about the future of the UpLife center. Rector, for example, is already looking towards the future. There are further plans to expand their community and their programs, as well as their physical space. “We also encourage volunteers with media skills,” Rector says. “We’d like to offer film classes in the future.” The traction of the center’s success and momentum is further support of UpLife’s mission: that art programs are worth saving. “I’ve already taught other people to sew who didn’t know how to sew,” Compton says. “Like me, they keep doing it at home, too.” For more information, visit www.uplifepdx.org.

The program was created to allow those with developmental disabilities to continue to do the things they are passionate about.

Photos by Jeff Mitchel

www.spectrumsmagazine.com

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RECREATION

Challenges and rewards of travel Embarking on trips takes planning and patience By Jeffrey Rindskopf

Karin Sheets’ daughter Veronica had been going through a particularly hard time. A broken arm led to a lengthy hospital stay, including a painful recovery process lasting more than five months. Karin, who describes herself as perpetually optimistic, was struck by the reality of her daughter’s condition. “I started thinking, ‘What are we doing?’” she says. “‘Are we living our best life? Have we done everything we wanted to do, or have we been waiting?’” Sheets desired to travel with Veronica, in spite of her daughter being blind, nonverbal and reliance on a wheelchair due to her scoliosis and muscular issues. When she was in the hospital, Sheets pledged that they would go to Disneyland once the ordeal was through. She was true to her word. The initial trip to Disneyland proved to be challenging. However, Sheets has continued to travel with Veronica and has learned how to adapt the trips to accommodate her daughter’s disabilities, including special access passes at Disneyland. Her family’s experiences are chronicled on her blog, SpecialNeedsTravelMom.com. “My friend said, ‘You need to start writing about this, because there are other families that would be encouraged by that,’” Sheets recalls. Until last spring, Laura Traw had never dared to go on a flight or an overnight trip with her 10-year-old son JC, who has autism and has gone through intensive therapy to improve his limited verbal abilities. Like most parents of children with autism, the idea of a family vacation seemed especially daunting and stressful. “We didn’t know how he would handle the different noises, sights and sounds,” Traw says, “and once you’re on an airplane, there’s no getting off.” The Traw family also chose Disneyland for their first attempt at a family vacation. “I started planning January,” she says. “I did a lot of planning.” Tobi Rates, executive director at the Autism Society of Oregon, relates to the challenges of traveling with children on the spectrum, both from testimony from other parents and through firsthand experience with her two impacted sons.

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“The main thing that causes issues is the waiting,” Rates says. “Every child has difficulty waiting, but I always say that kids on the autism spectrum are like other kids, but more so.” For parents raising a child with autism or other disabilities, the idea of a traditional family vacation may feel like an obscure luxury, the frustrations apparently outweighing the rewards. “You want those memories, but putting them through something that’s going to be so difficult for them sort of negates the point,” Rates says. However, facilitating trips with travelers that have special needs don’t end with air travel. Some children have difficulty sitting through long car or train rides, and the unpredictability of being away from home. And while we delight in a child’s excitement over a vacation in a fun new place, it can also backfire. For example, Rates’ younger son will become so excited in a new place that he stays up all night, preventing anyone else in the family from sleeping. Before their first monumental trip to Disneyland, Sheets took Veronica on an overnight trip as a test run. However, they wound up spending the entire weekend in the hotel room due to Veronica’s overstimulation from the travel. She didn’t want to go anywhere, speak with anyone, or do anything. Sheets wondered how families can prepare or plan ahead to prevent such situations. There’s no surefire way to ensure success on a family vacation. Sometimes over-preparing may only cause more anxiety for everyone, or there are some eventualities you can’t account for beforehand. “We’d been to Disneyland a million times,” she says. “I never realized how much I didn’t know about bringing her there.” When preparing for air travel, families can call airport Transportation Security Administration (TSA) before a trip using the TSA Cares phone line (1-855-787-2227). This group specializes in aiding travelers with special needs, including blocking out private security screening time separate from the usual procedures and lengthy wait times. Continued on next page

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Travel, continued from page 18 Most airlines are willing to make arrangements and seating accommodations for travelers with special needs, particularly if notified of any issues ahead of time. During her recent first family vacation, Traw was surprised to witness how the TSA agent escorted their family through the checkpoint and to their terminal. “It was beyond what I could have ever hoped or dreamed of,” Traw says. Given the advance notice, the Port of Portland is willing to assist with so-called “practice runs,” taking children through the ticket counter and checkpoint experience before the date of travel so they know what to expect when traveling through Portland International Airport. Rates, Traw and Sheets all agree that communication is an essential part of the travel process. Even when a child is nonverbal, like Rates’ younger son, it helps to tell the child what to expect and what the travel plans will include in a way they can understand. To prepare for the travel dates, Sheets tells her daughter the details of the trip as she falls asleep, similar to a bedtime story. “Even if they’re verbal, often the best way to know how they’re feeling is to look at behavior,” Rates adds. “Behavior is communicating, and the way we listen is by observing.” Continue the communication to other passengers, flight attendants and employees, who will almost always accommodate and help travelers with special needs if aware of the situation. “A lot of parents feel hesitant to talk about their children’s autism,” Traw observes. “I did, because I think it’s better going onto a plane to let them know ‘this is what I’m dealing with, this is what we have.’” This communication was essential for Traw’s return trip from Disneyland, when her son was verging on a meltdown, frustrated that the passengers were unable to board the plane while it was on the tarmac. Traw let the Alaska Airlines employee know of the problem. The attendant approached her son a few minutes later, addressing him by name. “She said, ‘JC, do you see that big hose? That is the plane getting gas, just like when your mommy takes you to the gas station for her car,’” Traw explains. Immediately, something clicked: it was something he could relate to, something he understood and the meltdown was averted. Even the pilots gave JC a warm welcome, inviting him into the cockpit before takeoff. “It took them three minutes out of their day, but it just made our entire trip so pleasurable,” she says.

close,” Traw says, “I always tell people to start close, so you kind of know.” National organizations that accommodate and cater to travelers with special needs, such as Outdoors for All in Seattle, helping children After much preparation and planning, JC enjoys and adults of all abilities participate a vacation to Disneyland with his family. in outdoor sports. Photo courtesy of Traw family. Splore, a Salt Lake City-based organization, runs similar recreational activities, including a white water rafting program. Sheets took a trip with Veronica to the National Ability Center in Park City, Utah. The center allowed her to Photos courtesy of Threefor Rivers Soccer League indulge her passion skiing with Veronica in tow, thanks to a sledding setup allowing her to follow along with the rest of the family. Veronica found a passion for adaptive hockey and even rock-climbing. “We came back from the trip, every single one of us changed,” Sheets says. “My older daughter said, ‘I feel like a real family.’” Sheets also notices how travel gives her daughter Veronica something to look forward to, and a way to relate to other people. Despite some struggles, new places help Veronica to deal with change and manage more stimulation. When travel can require so much foresight and preparation, it’s easy to forget how it can benefit children and parents, improving their understanding of themselves and one another. “Seeing them in more situations gives you more information,” Rates adds. Traw and her husband witnessed JC exceed their expectations, and it continues to provide JC the motivation he needs to communicate with others. “Everyone he comes into contact is told, ‘I went to Disneyland, I rode airplane!’” she says. “Those things keep us going when times are difficult. We actually got to take a family vacation, and do something typical parents get to do—something we’d been told we might never be able to do.”

Families can venture within their own city, testing a child’s threshold to loud noises, lines and people. “The first time we stepped out and went away, we stayed

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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION School vs. private occupational therapy................................. 22

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EDUCATION

School vs. private OT

Understanding services through your IEP By Joanna Blanchard, MOTR/L

Understanding which occupational therapy services are provided in a school-based setting versus that of a private clinic can be confusing. Establishing if a child needs both private- and school-based OT, or how to help your child advocate for what services are needed through his or her Individualized Education Program (IEP), can need some clarifying. Occupational therapy in a school setting and one in a private, or clinic-based, environment can look very different. Each has its own focus depending on the child, his or her age and the type of educational program they are receiving. It can be confusing to determine why children can receive services from one entity, but then “not qualify” for another. This can be because the qualification process for the medical and educationally-based models are different. Private occupational therapy services: • Referred and prescribed through a physician, much like any treatment or medication. • After an evaluation in the home, hospital, community or clinic setting, the occupational therapist determines the deficit areas in sensory processing, fine motor, coordination or other appropriate areas of need. • Based on the findings, recommendations and individual needs, goals are then developed with the family. • Services may be delivered in the home, clinic, hospital or other community setting. • May or may not be part of a larger team unit, including physicians and other therapists. This is most often coordinated by the parent and depends on the type of clinic or service model the private clinician provides. • Are paid for by insurance or considered an out- of-pocket expense. Data is presented to insurance companies to deem the therapy “medically necessary” for continued services with demonstrated need areas. • These areas of need can be in the home, community or at school, with defined goals to improve function across any of the environments the child interacts within. School-based OT provides services under the Individuals with Disabilities Educational Act, individual state

regulations and vary depending on individual district, school and team policies (although these must meet IDEA requirements). To receive in-school OT, a student must first be eligible for an IEP and receive specialized services through special education. The team evaluates the child’s needs in the school setting. They must demonstrate how OT will enable the child to benefit from and have access to education, supporting their functional participation in the school environment. This process must be based on data that demonstrates need within that setting. School-based OT services are: • Deemed “educationally necessary,” must like an insurance company requires proof that the therapy is medically required. This difference in determination of services makes sense if you think about who is providing and paying for the service. • Often integrated with other IEP academic and classroom goals • Not required to address external or issues in the home, however may address areas such as self-care if the team determines this is an appropriate educational focus. • May be delivered as “push in” to the classroom or “pull out” for 1:1 therapy, consultation or training with staff or in a group. • Is based on minutes per week, month or year, depending on the system’s model. • Some school district models do not support addressing sensory issues within the educational setting. • Some programs have demonstrated that improved sensory processing and self-regulatory skills directly impact a child’s ability to function at school and are therefore educationally relevant. • Focus and interventions are based on educational goals, developed by the IEP team. • Students may have concerns or goals that qualify them for medically-based services. However, if the concerns do not interfere significantly with the ability to learn and access educational programming and IEP goals, they may not receive motor services at school. In early intervention, many school and private or clinicbased OT programs look the same. Goals are based on needs and focus on areas of delay or impairment. Crafts, sensory play in tactile bins, gross motor activities with Continued on next page

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OT, continued from page 22 movement and various forms of both tabletop and gym play will be observed. In both a school and clinic setting, goals may focus more on motor coordination and sensory processing to support fine motor development as the child gets older. Toilet training and age-appropriate self-help skills may also be addressed in both settings at this age. In elementary school when learning writing skills, an OT may commonly turn the focus toward visual motor (handwriting often being the underlying foundation). Children’s goals evolve to education-based goals where the child needs more support. These can include self-regulation and behavioral interventions due to sensory processing, in which case sensory adaptations and interventions are put into place within the classroom. Sensory strategies, as well as planned breaks throughout the day, can also be instituted. Some elementary schools have sensory play areas or therapy spaces for children. Depending on a child’s needs or goals, a private clinic may offer opportunity for sensory integration by playing in a gym or community setting. This can involve movement and intense sensory play that can continue to support developmental areas the ways that craft and fine motor work do.

more independent in self-advocacy and awareness. In a private clinic, this age group tends to focus more on age-appropriate activities. Indoor gyms and movement incorporated into therapy sessions can still be relevant, however, both therapy settings may move toward promotion of outdoor or sports activities. This helps a child build interaction with peers and builds coordination in more complex settings, as well as support academic focus and development in this challenging transitional age group. Finding ways to integrate sensory activities throughout the day is essential for both teams. As children get older, OTs are excellent resources for finding ways to meet young people’s needs and abilities in appropriate ways for social, work and leisure opportunities. While many school programs phase out OT services by high school, this period of time is just as important, if not more, for “pushing in” and working closely with staff and kids both consultatively and directly. This is the time when many children are ripe with potential after some maturity of self-regulation and cognitive skills that can happen later than their peers. As young adults and their schools reach into the community, explore vocational ideas and work readiness practices, OTs should be at the forefront to help. Their assistance is helpful with task analysis, matching people’s abilities and interests and breaking occupations down into parts that can be adapted for each individual. Some schools have developed vocational opportunities within the campus, such as making and selling coffee, dog biscuits or providing recycling services in the schools. Working to adapt and help job coaches and employers problem solve is a much needed skill set for this age group. It is needed in both private and school settings to achieve long-term goals. For example, an occupational therapist can help a teen’s teachers establish a volunteer position at a local garden store. From their observations of the student, OTs can identify that the student is a sensory seeker, needs to be moving and loves the outdoors. The local garden store could provide opportunities for heavy work and plenty of tactile input.

Occupational therapy in a school setting can draw from services deemed “educationally necessary” per a student’s Individualized Education Program. For middle-schoolers, many school-based models will move kids to the “consult” or “monitor” model, exiting them from weekly or bi-weekly direct therapy. Consult models of delivery involve a therapist to implement a plan of care, train staff and set up classroom strategies and accommodations, as well as have regular planned checkins. This model can work well with children who have met many of their goals, and who are ready to become a little

A skilled therapist might even help place a young person at a coffee shop to help prepare and grind beans, but can ensure that they’re equipped with headphones to block the noise of the grinder. And of course, selfcare and appropriate hygiene is important to hold on to that job, as is being able to follow directions. While school and private-based services may look very different at times, your team members will all have individualized long- and short-term goals with a child’s best interests at heart. Be sure to share your teams’ goals and your ideas so we can work together. www.spectrumsmagazine.com

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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS

IN THIS SECTION Dual diagnosis......................................................................................... 26 Using acupuncture for autism...................................................... 28 “My Turn”.................................................................................................. 30

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HEALTH + WELLNESS

When it’s more than autism

Determining when a dual diagnosis is warranted By Katlin Stack Autism is a diagnosis that is complicated, deep and lifechanging. It can affect many aspects of an individual’s life, including social skills, learning and communication abilities. However, sometimes the initial diagnosis by a professional doesn’t quite paint the entire picture. It’s very common for a parent or caregiver to suspect that there may be overlapping diagnoses than an initial autism diagnosis. And often times, families and caregivers are right: there is more going on, but what? Where does a family begin and where can they go to sort out the symptoms presented? Let’s start with a name Being diagnosed with more than one disability can be referred to as co-occurring disabilities, dual diagnosis, comorbid or multiple disabilities (commonly used on a child’s Individualized Education Program, or IEP). So when a caregiver begins digging for information about the possibilities of what is going on, these are some terms they will commonly see. What are some common diagnoses seen with autism? Special educators, psychologists and physicians will

answer differently for what diagnoses they most often see concurrently with autism. It may be physical limitations, such as PICA or Epilepsy. However, others will have a co-occurring diagnosis of a developmental delay or genetic condition, such as Down Syndrome, Dyslexia or Attention Deficit/Hyperactivity Disorder (ADD/ADHD). A very high percentage of those with an autism diagnosis will also have a mental health condition, such as anxiety or depression. Just as no two people with autism are the same, no two people have the same multiple disabilities. Jocelyn Krebs is mom to 6-year-old Rhys, who has been recently diagnosed with having multiple disabilities. At 19 months, Rhys was diagnosed with Williams Syndrome, a condition characterized by medical problems, including cardiovascular disease, developmental delays and learning disabilities. A diagnosis of autism didn’t come until Rhys was about five years old. What can you do if you believe Autism isn’t the only answer? Families and caregivers tend to know a child best. Doctors, psychiatrists and teachers will all have their own opinions about symptoms they see, however caregivers see this Continued on next page

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Dual, continued from page 26 individual day in and day out, they know the individual’s habits, likes and dislikes. If you suspect your child exhibits behavior or symptoms that don’t quite fit with an autism diagnosis, doctors say to trust your gut. “Trust your instincts and don’t be afraid, ask questions and advocate,” says Dr. Robin McCoy, developmental behavioral pediatrician with the Children’s Program. For Jocelyn, a research scientist, Rhys’ first diagnosis of Williams Syndrome was a shock. Professionally, she had been studying Williams Syndrome years before Rhys was even conceived. This diagnosis came as a surprise because Rhys wasn’t displaying the classic presentation of the syndrome. He was lacking specific characteristic physical appearance and not displaying the type of hypersocial behavior that usually presents with Williams Syndrome. This led Jocelyn to suspect autism, and she requested an evaluation. How can a caregiver be prepared? The best tools are proof and education. So document, document, document! Write down observations of daily life, problems that are arising, things that are working well and things that aren’t. It’s important to keep handwritten, electronic or voice notes and track everything that is observed.

The more supports in place after the initial diagnosis of autism, the more varying symptoms or behaviors may reveal a co-occurring condition.

Rhys is now in first-grade and Jocelyn says he’s doing great. Rhys is getting the support of Applied Behavior Analysis (ABA), as well as speech and occupational therapy. Between his supports at school and ABA, Rhys has progressed wonderfully in his expressive language and his meltdowns have become less severe. Because of his success within his new diagnosis, the family is now thinking of getting him feeding therapy and help with his anxiety. Where can caregivers seek support?

It’s never advised to diagnose anything based off of the Internet, but it’s never a bad idea to educate oneself about different diagnoses and what the symptoms look like. It’ll help when professionals are sharing ideas to know what they are talking about.

Securing support while navigating the dual diagnosis process is essential. It’s perfectly normal to carry extra worry or stress while searching for extra help or sorting out diagnoses. An important part is trying to not hold on to the emotions, but to find others who understand and have had similar experiences.

Because of Jocelyn’s professional knowledge of Williams Syndrome, she was able to be more knowledgeable about the things she witnessed with her son. Knowledge is power, and in this case Jocelyn was even able to help the doctors at the autism clinic understand Williams Syndrome better so that they could properly help Rhys.

Support can be in person or via an online support group. Knowing that others share your feelings, worries and experiences can help alleviate feelings of isolation. In turn, families can lend that support to others once they are further along in their journey.

Where should caregivers reach out to obtain another diagnosis? Dr. McCoy believes it is important for people who have been diagnosed with autism to have “follow-along care with a professional who has specialized training in autism.” When caregivers have varying medical professionals on the treatment team, it can help guide therapy and medication options, strategies and insight into helping the individual. Having good and open communication with professionals will also aid in helping secure a dual diagnosis. Make sure supports are in place As Dr. Eagle and Dr. McCoy pointed out, caregivers need to be advocates and make sure that proper supports are in place. Schools, services, groups and activities will all help to make a difference. The more supports in place after the initial diagnosis of autism, the more varying symptoms or behaviors may reveal a co-occurring condition.

Jocelyn has been receiving help for both of Rhys’ diagnoses. She has been a member of the Williams Syndrome Association and also connects with families of Williams Syndrome through Facebook. Since getting the autism diagnosis, Jocelyn has also connected with the Portland Autism Moms Facebook group. Reaching out to their own family has also been very helpful in supporting Rhys and each other. Confusion and fear is a normal feeling once a family feels an initial diagnosis is incomplete. However, with proper education, documentation, self-care and consulting with caring professionals can make a world of difference. Finding the right combination of diagnoses is a team effort. A supportive environment increases the chances of success. Jocelyn says the most important mantra is to remember to keep it person-centered. “At the end of the day, your child is totally worth it all.”

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HEALTH + WELLNESS

Acupuncture and autism

Research demonstrating benefits of Chinese medicine By Corinne LeBlanc Envision an acupuncture treatment. Now, picture an individual with autism spectrum disorder as the recipient of that treatment—needles and all! Several years ago, I had my first encounter with this exact scenario. I was working with a 9-year-old boy, diagnosed with autism, and his mother told me that she would be taking him to an acupuncture appointment after our relationship-based therapy session. I recall thinking that it seemed an insurmountable task: encouraging a child to be still long enough to have needles inserted, and then asking them to stay put once they were sticking out of his body. Now, years later, as a licensed acupuncturist myself, I recount the incredible foresight of this extraordinary mom to seek out this alternative therapy. Since then, acupuncture has continued to show great promise for the treatment of ASD and its accompanying symptoms. A question I am frequently asked is some version of, “Why would acupuncture do anything for people on the spectrum?” As it is with so many questions about ASD, there is no simple answer. However, much of the recent research has honed in on a couple of promising theories. Some research posits that autism involves some sort of abnormality in the body’s inflammatory response. Acupuncture, electroacupuncture in particular, has an anti-inflammatory effect on the body, according to North American Journal of Medicine and Science. Another theory is that acupuncture has a modulating effect on the conductivity of brain signals. According to Human Brain Mapping and preliminary research at Massachusetts General Hospital and Harvard Medical School, needling one acupuncture point on the hand resulted in a detectable decrease in activity of parts of the limbic system in the brain. Concurrently, brain activity in the somatosensory cortex was increased. This could be of particular interest as it relates to autism, as a study published in Autism Research revealed reduced activity in this region of the brain. This area is the orchestrator of sensory information; neurons here receive sensory input and take that input to the somatosensory association area where that information is interpreted and integrated. Researchers conclude that perhaps an increase in activity

to this area of the brain can help with organizing sensory information. Many recent study designs have focused on the efficacy of scalp acupuncture, or the insertion of needles shallowly into areas of the scalp, in treating behavioral and language challenges often exhibited in those with autism. Other research has focused mostly on body acupuncture and the use of electrical stimulation on select acupuncture points. Researchers in Hong Kong also explored tongue acupuncture with children who have an autism diagnosis, in which needles were inserted and quickly removed from children’s tongues. The theory in these cases is that the tongue is replete with nerves and that stimulation of these nerves could promote communication with the brain. The findings, while from small sample sizes, are quite affirming for the use of acupuncture in autism spectrum disorders. A team of researchers reviewed data published through 2011, and reported in the journal Evidence-Based Complementary and Alternative Medicine that, “Statistical improvement in behavior and/or development in children with autism treated with acupuncture were reported in all the studies reviewed.” Additionally, “all of the reviewed articles invariably reported improvement in autistic children who received a form of acupuncture with or without concurrent behavioral intervention.” While this sounds promising, the challenge in properly interpreting the data lies in the details. The studies each had their own unique way of measuring improvement. Some, for example, were looking specifically at changes in behavior, and the scales they were using varied from Childhood Autism Rating Scales (CARS) to the Aberrant Behavior Checklist (ABC). Others focused more on language or cognitive development, using assessments such as the Peabody Picture and Vocabulary Test (PPVT) and the RitvoFreeman Real Life Rating Scale. While the results demonstrate improvements, they varied from increased communication and/or social interaction, to the reduction of repetitive behaviors and improvements in fine motor skills. As I see it, the research published to date is a beginning, a baseline for establishing better study designs and methods Continued on next page

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Acupuncture, continued from page 28 to demonstrate the power of this medicine for treatment of autism symptoms. An example of a potential model for the future is an animal study published this year that used laser acupuncture on rats exhibiting autistic behaviors. This research demonstrated that the stimulation of one acupuncture point yielded a decrease in the oxidative stress in the cortex, striatum and hippocampus in the brain. In turn, this caused some autistic behaviors to decrease in rats, according to the Journal of Acupuncture and Meridian Studies. Additionally, organizations such as the Kennedy Krieger Institute and the NAET Autism Treatment Center are conducting studies on acupuncture and acupressure efficacy for ASD. Investment in further research is warranted to give this special population every opportunity to thrive. After working with children on the autism spectrum for almost 10 years, I decided to further my education with a Master’s in Acupuncture and Chinese Herbal Medicine. It was one special 14-year-old named Molly that finally compelled me to commit to the journey. Molly was a girl I worked with in Denver and one of the sassiest, giggliest, most unique children that I had ever met. In addition to the relationship-based therapy that I was doing with her, she was also receiving acupuncture. Her mother invited me to accompany them to an acupuncture session and I ecstatically accepted. To say that I was inspired by what I witnessed would be diminishing the actuality of my emotion that day. Molly was getting treated for some gastrointestinal issues, and I watched this extremely active teenager lie peacefully on a massage table for nearly 30 minutes with needles in her abdomen, arms and legs. When we had our therapy session afterward, I was totally struck by the increase in eye contact and reciprocal play that ensued. “Wasn’t she being treated for gastrointestinal stuff?” I silently questioned. Yes, but the beauty of acupuncture is that there are often unintended results that stem from a calmer nervous system and an increase in healthy, oxygenated blood to the body’s tissues.

14-year-old Molly makes a career-changing impression on local acupuncturist Corinne LeBlanc. Photos courtesy of Corinne LeBlanc.

It was in that moment that I was forever changed as a practitioner. In my current acupuncture practice, I have my own, albeit anecdotal, evidence for the benefit of acupuncture and acupressure for children on the spectrum. I’m so grateful for the forwardthinking families that I’ve had the pleasure of working with—and that the science is finally catching up with them. Corinne is an acupuncturist at Flow Natural Health Care, specializing gentle treatments for children with special needs.

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HEALTH + WELLNESS

MY TURN

One person’s experience with autism

By Lita Kutter*

I’m a middle-aged woman with High Functioning Autism, and fear more or less runs my life. That’s on a bad day. On a good day, fear probably still overshadows my daily activities. Since one comes to take such things for granted when they experience them over decades, only recently have I realized that my good days are not free of the shadow fear casts on me.

I never knew what was wrong with me, but I sure did know something was, and that it was all my fault. What I didn’t know was what it was or what to do about it. For decades, I was tormented about why people did not like and accept me. This led to a lot of crying myself to sleep at night, and berating myself constantly by day. By my early 30s, my friend Tammie said that I “hated myself more than anyone else she’d ever met.”

And the way it keeps me from doing things. Right, so all that sucks but what does it have to do with fear? There are a million reasons why a person with HFA would have fear as a general condition of his or her existence. For this article, I think I’m going to touch on the fears that apply to me. Although I’m sometimes referred to as pretty “far up the autism spectrum,” there are still plenty of issues. I hope others will relate. But first let me tell you a little about me. I’m in my early 50s and was diagnosed with Asperger’s syndrome (now called High Functioning Autism) in my mid-40s. That might shed light on how effective the help I’ve received for HFA in my lifetime has been—mostly, not much. My 1970s childhood was largely miserable, spent hidden away reading—I love to read—and filled with criticism and rejection. My recollections: constant accusations of laziness, thoughtlessness, “having my head up my ass,” “being a space cadet,” “living like an animal,” “thinking I should be considered special when I’m not special,” “willfully trying to bother others”—you name it.

Well, everything just hurts so much. The rejection hurts. It doesn’t hurt as much now as it did then, but even so, I can’t have a conversation with a stranger without fearing I won’t know what to say or how to respond, hoping like crazy it will end soon, and analyzing it afterward as to whether I think the person realized I’m autistic. Did I appear awkward? Did I annoy them? Did I make them nervous? Do they have contempt for me now? I can sort of tell if a person thinks something is “wrong” with me. Their voice changes to a special sort of “kind” tone. They smile funny. They act nervous. An air of weirdness prevails—I don’t know how to explain that, but it just does. When this doesn’t happen, I am so relieved. These are some of my fears. The fear of rejection keeps me from meeting other people. Not totally, but largely. I live in a big, cold city and have one local friend right now (yay him!) But he’s it; there are no others. However, I have a partner moving here next year sometime, and that’s wonderful.

And that was only from the adults. Before high school, the nice kids largely ignored me, and the mean kids tormented me.

See, like everybody else in our society, I was taught that, “how you are judged is not how much you love, but how much you are loved by others!” Recognize the quote from

I never knew what was wrong with me, but I sure did know something was, and that it was all my fault. What I didn’t know was what it was or what to do about it. By about 15, I made some friends and dated some guys. I didn’t realize that the positive attention was largely related to my looks, gained weight in college, and things went back to a more adult version of the experiences I had in school previously. In college, there were still bullies, but I found a few people to relate to, including one who, by the strength of her personality, kept me included in our friendship group. Over the years I had a few romantic relationships, but until recently, they were rare and did not work out.

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the Wizard of Oz? And I’m loved a very small bit by a very few people, and liked by a few more. It’s more than some. I’m grateful for the people I do have in my life. I think I’m going to take a stab at describing why I’m probably more afraid than you are, assuming you’re not any more afraid than most people, of course. Assuming you’re neurotypical, so you don’t have to worry about stuff like “coming off all wrong” (yes, I know everyone worries about it, but it mostly doesn’t really happen to neurotypicals. They come across normally to most people who meet them, and have reasonable expectation that any given person who Continued on next page

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My Turn, continued from page 30 meets them will like them). You don’t have to agonize about inevitable social errors and their probable consequences—you’re going to make that kind of mistake every blue moon and that’s all. You most likely will not suffer from them day by day to the point where you need to expect that those social errors are the norm. You don’t have to worry that demands are likely to be made of you that you cannot figure out how to fulfill, or do not have the energy or other resources to fulfill. Or that the people making those demands will be oh-so-disappointed, and oh-so-punishing when you don’t come through. You don’t have to obsess about pointing fingers. How Fear Holds Me Back:

age, there wouldn’t be a lot of room for recovery from something like that.

3.

Sometimes I just have to withdraw and get away from situations that I feel like I might not be able to handle, and then, I lose what might have been a good experience. I have a college degree in a field I’ll never work in, on account of that avoidance. I tried a couple of times. I got slapped down a couple of times. It was awful each time and I was practically suicidal.

4. I’m afraid to meet new people, so I rarely do. A lifetime of that mentality, and a person has markedly few connections. It’s an impoverished life. I rarely have someone around to share things with, and it scares me to think I might get sick with no one in town to help me. I try not to think about what this life-long relative isolation is going to mean as I get older. One can’t depend on one’s partner for everything.

1.

It makes me avoid, avoid, avoid. What do I do when afraid? Eat, so I weigh about 230 pounds. Surf the Internet (yay Internet! There’s always fascinating stuff on there to read). Eat more. Read books. Play solitaire on my phone. Listen to music. Listen to public radio. Read more books.

2.

I didn’t know how to get a career started. Remember, this was before the Internet. Today, I work at a job. However, the middle class, the way I grew up, might as well be on the moon as far as I’m concerned. What am I afraid of? Well, when you don’t know what you are, you don’t know what you can and can’t do, and then you don’t know what kind of career you can establish that you could succeed at.

It took until I was way into my 40s to achieve a permanent, full-time job. One came along that was willing to work around my disabilities, and where they have a realistic idea of what those are. I disappoint them regularly, but so far they’ve kept me.

Because, on account of my disability, I have few resources to address problems that inevitably arise in life. Because I’ve been through a lot of pain, and, since I remain the piecesmissing person that I am, anticipate the likelihood of more.

I usually feel like kind of a child among the adults there. I’m terrified of being let go. Especially at my

*Lita Kutter is a pseudonym for a woman in her 50s, diagnosed with High Functioning Autism, who lives and works in Seattle.

5.

I’m afraid to start things. Because I don’t know how I will manage them. So I don’t do a lot of things, and a lifetime of that and you have markedly few achievements, which means, among other things, markedly few reasons to have any kind of self-pride or self-respect.

In summary, why am I afraid? Because I know the probability of being hit with something I can’t cope with is so much higher than if I were neurotypical. Because I know what other people think about my differences (nothing good), and I don’t want others to notice I’m not like they are.

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therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Encouraging communication in non-verbal children...............34

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Providing intensive, individualized ABA therapy for young children on the autism spectrum. We use scientifically proven, evidence-based techniques to help children become happy, social, communicative people. Our exceptional team build a child’s skills needed to succeed in the home, classroom, and community. Individualized ABA for kids age 5 and under Social skills groups • Parent training and consultation On-site and home-based services School support and transition services Most insurance covers services for children with an autism diagnosis.

4724 SW Macadam Avenue • Portland, Oregon 97239 (503) 235-3122 • www.bridgespdx.com www.spectrumsmagazine.com

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THERAPY

Encouraging communication 5 ways to encourage a nonverbal child By Becca Eisenberg, Friendship Circle As a speech language pathologist, one of my greatest joys have been communicating and connecting with both children and adults with autism, specifically those who are nonverbal or minimally verbal. I have met countless individuals who are living in a silent world and have been waiting to be opened up so they could communicate and connect with others. I have met struggling families who felt like they couldn’t connect with their child due to a variety of reasons. I think no one can understand the position of these families or individuals with autism unless you really live it. As a speech language pathologist, I feel lucky to have the skills to help these individuals begin to communicate their basic needs and wants via augmentative and alternative communication. Today, I would like to share five helpful strategies that I use to help communicate and connect with those diagnosed on the Autism Spectrum that struggle with communication. These strategies can be used with both verbal, minimally

verbal and nonverbal children and can be used anytime, whether you are at the dinner table or out in the community. Enter into their world by using motivating people, items, etc. to encourage communication For many children, food is motivating. For others, it could be specific toy, movie, friend, family member or neighbor. For example, if your child loves interaction with a specific family member, use this motivating person to encourage communication. If you are using this person to encourage communication, use a variety of visual and auditory strategies (e.g. use a picture of the family member and/or model the name of this individual). Encourage your child to point to the picture of this person or exchange the picture with you to request it. When they are able to point or exchange the picture, the motivating person could come over to the child and give him or her a hug to fulfill the request. Continued on next page

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Enter into a nonverbal child’s world using favorite toys as a motivator. Encouragement, patience and assuming competence is key. www.spectrumsmagazine.com


Non-verbal, continued from page 34 To learn more information about using a picture exchange communication system, check out PECS USA at www.pecsusa.com. Label feelings as they occur For example, if your child is reaching for food in the fridge, label the feeling. For example, say “You are hungry.” The more your child hears the particular feeling with a specific behavior, the better they will be able to understand that feeling. This strategy needs to be consistent and occur naturally. Modeling a feeling can happen when your child is excited, sad, hurt, happy, etc. For example, as your child expresses their excitement, say “I see you are excited.” If you have a picture of “excited” it can even reinforce the concept more. Learn more about using visuals at www.praacticalaac.org. I have been working for months with a particular individual with this concept and he is now expressing that he is hungry, thirsty, sad, mad, etc via the communication app, Go Talk Now on the iPad. Expressing a feeling can be liberating and be an excellent way to connect. Assume competence Assuming competence is probably one of the most important things we can do as a parent, caregiver, therapist, teacher, etc. Assuming competence for any child, whether they have a disability or not, is a form of empowerment. Assuming that your child CAN do it and WILL do it is powerful. The other concept is speaking to a child with autism like any other child. Children with or without disabilities pick up very quickly when an adult or another child is speaking to them in a different way. This can be a strategy that can very helpful when telling others how to speak to your child. Model Language and use Aided Language Stimulation Modeling language is an excellent strategy. Many times a child may not know the specific word or structure of a sentence. For example, if your child wants water at the dinner table and indicates that to you in a way that you will understand, say “I want water.” Giving the model will help improve your child’s receptive and expressive language. Adding a word such as “please” or in a question form can also provide clues to appropriate ways to ask for a particular item that can improve pragmatic language skills. Aided Language Stimulation (term coined by Carol Goossens) is a technique that can be extremely helpful during a variety of activities to help build language and communication. Use a total communication approach using both unaided and aided communication What is aided and unaided communication? Aided communication is anything other than your body that you use to communicate. This can be pictures, photographs, words, etc. Many children with autism who are not able to use speech for functional communication often use pictures, photographs, words and/or communication systems to express themselves. Unaided communication is using your body to communicate (e.g. gestures, facial expressions, sign language, etc.). I often get asked if using pictures for communication is going to take away any gestures or speech that the person is using, and the answer is always no. The best way to communicate is with a total communication approach, which is includes all modes of communication. None of use communicate with just speech. Sometimes a friend or spouse can understand our message with a simple gesture or facial expression. Encourage all modes of communication whether unaided or aided. Reprinted with permission from www.friendshipcircle.org/blog. www.spectrumsmagazine.com

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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

EMPLOYMENT

Play Connections Autism Services, LLC 1800 NW 169th Place, Suite B100 Beaverton, Oregon 97006 (503) 737-4693 www.playconnections.com melanie@playconnectcenter.com

Center for Communication & Learning Skills Dr. Judith Belk 371 6th Street Lake Oswego, OR 97034 (503) 699-9022 judybelk@gmail.com www.commlearningskills.com/

Incight 111 SW Columbia Street, Suite 1170 Portland, Oregon 97201 (971) 244-0305 www.incight.org

Our Early Learners receive individualized, comprehensive and effective treatment programs to build a solid foundation for lifelong learning.

Serving people with mild-severe challenges: speech, language, learning, auditory processing, sound sensitivity, reading, attention & memory.

Unlocking the potential of people with disabilities, programs for employment, education and independence. NATUROPATHIC MEDICINE

ASSESSMENT + DIAGNOSIS Dr. Linda Lee Creative Holistic Counseling & Assessment PO Box 65523 Vancouver, Washington 98665 (360) 334-6301 linda@creativeholisticcounseling.com www.creativeholisticcounseling.com Psychological assessment for diagnosis, treatment planning, and counseling; collaboration with all professionals on the treatment team.

Hearing Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 802-5273 www.albertinakerr.org Pediatric and adult diagnostic hearing evaluations, OAE testing, newborn hearing screenings, hearing aids and all make and model repairs.

OCCUPATIONAL THERAPY Children’s Developmental Health Services at Albertina Kerr 1675 SW Marlow Avenue, Suite 200 Portland, Oregon 97225 (503) 228-6479 www.albertinakerr.org

We are a family-friendly practice specializing in providing psychological services to individuals on the autism spectrum

Developmental Behavioral Pediatrics, Clinical Psychology, Speech-Language Pathology, Occupational Therapy, Pediatric and Adult Audiology. Play 2 Grow 8050 SW Warm Springs, Suite 130 Tualatin, Oregon 97062 (503) 564-0565 www.weplay2grow.com Comprehensive developmental and behavioral intervention including psychology, occupational and speech therapies.

www.spectrumsmagazine.com

Providing family naturopathic medical care for over 20 years. Areas of expertise : autism, ADHD, learning/behavior/sensory challenges.

DEVELOPMENTAL BEHAVIORAL HEALTH

Portland Autism Center, LLC 10300 SW Greenburg Road Portland, Oregon 97223 (503) 206-6285 www.portlandautismcenter.com

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Natural Choices Health Clinic Mary Frazel N.D. 3007 SE Belmont Street Portland, Oregon 97214 (503) 445-7115 naturalchoicesclinic.com drmaryfrazel@msn.com

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. Pediatric Therapy Services (503) 666-1333 New Horizons Wellness Services LLC (503) 352-0240

Continued on next page


Directory, continued from page 36 RDI®

SPECIAL EDUCATION LAW

SPEECH-LANGUAGE THERAPY

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

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

The Hello Foundation PO Box 623 Gladstone, OR 97027 (503) 228-2942 info@thehellofoundation.com www.thehellofoundation.com

Providing the highest quality & family-based interventions to target the foundations of relationships and learning with people of all ages and abilities.

Identifying and obtaining the special educational services your child needs to make the most out of life.

SCHOOLS

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

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.

We empower families via a sensitive approach to special education law through personal experience, attentive staff and an efficient model.

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

We provide exceptional speech and occupational therapy, when and where you need it: in our clinic, online and everywhere in between.

Everyday Speech & Language 5201 SW Westgate Drive, Suite 100 Portland, Oregon 97221 (503) 577-7283 phaedra@phaedraurbanslp.com www.everydayspeechpdx.com Collaborative treatment services for speech, language, literacy and social communication for children with ASD. SPORTS + FITNESS Bustin’ Barriers (503) 869-7112 SUPPORT + ADVOCACY Clark County Parent Coalition PO Box 2608 Vancouver, WA 98668 (360) 254-1562 www.arcswwa.org/programs/parentcoalition/ Free resources connecting families with answers that work; supports, trainings and guidance to meet a child’s needs. All diagnoses served.

New Horizons Wellness Services LLC (503) 352-0240

Brooke Psychologists (ages 10+) (503) 481-0020 PlaySpace (503) 224-2820

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Post-high school, continued from page 13 yet requires intense training and focus, and has instead become Ben’s PSW herself. Additionally, Ben would benefit from a sexual social program. The services Ben does receive, Tracy credits to the hard work of the advocate she has hired to help navigate the complicated and frustrating system. Currently, an average week for Ben includes exercising four days at Specialty Athletic Training, a program at Lewis & Clark College facilitated by trained adults who work with those on the autism spectrum to achieve fitness goals. Ben is also enrolled in a reading and writing course at PCC twice a week, and archery one day a week. These are all services and activities that Walker must pay for herself. Ben also participates in a game-night once a month in West Linn, but he will soon age-out of that activity.

parents or young adults of available services or how to access them. Parents need to be proactive in seeking supports and services for their children and should begin the process as early as possible. Families should reach out everywhere: the school, federal, state, and county agencies, disability rights offices, other families in similar situations, service providers and medical personnel, just to name a few. Ask lots of questions and keep track of whom you talked to about what. The more you know about what is possible, the more prepared you are to make your child’s transition from school services to the “real world” successful.

Unfortunately, much of Walker’s time has been spent trying to determine what to do next and where to get help, wasted time that Ben could actually be working, receiving services or experiencing community activities.

Author Diane Wiscarson worked her way through the IEP system for her son, and in so doing, found her passion for helping other families navigate special education and the law. Since graduating from law school and founding Wiscarson Law almost 20 years ago, she has helped more than 2,500 Oregon and Washington families obtain appropriate services and placements from the region’s public school districts.

“The more time it takes me to locate necessary services and work through the complicated system, the more Ben is missing out on,” Walker says.

Amy Reid is an associate attorney at Wiscarson Law. She received her J.D. at Lewis & Clark Law School in 2015, where she graduated cum laude.

Ultimately, all of these families say (sigh) that a parent’s job is never done. There is no contact person to inform

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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.

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Bridges Middle School | 716 NE Marine Drive | Portland, OR 97211 | 503.688.2922 | info@BridgesMS.org



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