PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER
SPECIAL NEEDS CAMP GUIDE
TRUSTS & GUARDIANSHIPS
MEDICAL VS. EDUCATION DIAGNOSIS FREE • PREMIERE ISSUE • SPRING 2013
Special Needs Planning Every parent of a special needs child asks themselves
“What will happen to my child when we’re gone?”
We can help you find the answers Special Needs Trusts Guardianships and Conservatorships Sorting Out SSI & Medicaid Asset Protection Plans Wills Living Trusts Financial Powers of Attorney To order a free copy of our Legal/Financial Planning Guide, call (503) 245-0894 or visit our website at naylaw.com
Planning for your family tree 6500 SW Macadam Ave., Suite 300 | Portland, OR 97239-3565 Ph: 503.245.0894 | Fax: 503.245.1562 | www.naylaw.com
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PREMIERE ISSUE • SPRING 2013
THERAPY OPTIONS: Understanding the treatment options available and a directory of local professionals PHOTO BY CATCHLIGHT PHOTOGRAPHY
FEATURED SECTIONS Lifespan
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Creating a circle of support Genevieve Athens, former Executive Director for the Autism Society of Oregon and parent to an autistic daughter, discusses the importance of creating a strong support system for your family. Establishing a guardianship for special needs family members Who will provide support and guardianship to a child with ASD once parents are gone? A local special needs law advocate provides advice on answering those questions now. Talking about a diagnosis: Learning a new language When and how do you disclose an autism diagnosis? One Portland mom shares her family’s approach to sharing her son’s special needs.
Education
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Health & Wellness
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Safety videos for educators on the danger of wandering Local mom Justine Haigh shares her story of what motivated her to team with autism experts for a safety training video on the subject of wandering.
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“Our Turn” Each issue of Spectrums Magazine will feature a first-person account of a journey with autism.
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Recreation
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Summer Camp Guide Thinking ahead to summer break? We have you covered with a guide to inclusive and specialized camps in Oregon and SW Washington. Happy camper For 14 summers, a women with autism from Milwaukie has built fond memories and lasting relationships at Mt. Hood Kiwanis Camp. Read how camp has made a profound impact.
Educational vs. Medical Diagnosis What are the differences and similarities between a medical and an educational diagnosis of autism? We talk to educational interventionists and behavioral-pediatricians to help sort it out.
The special needs dental patient Fear, anxiety and panic generally reach new heights in patients with ASD. Local dentists weigh in on helpful tips, specialized acclimation programs and much more.
Therapy
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Therapy options A helpful guide to acronyms, types of treatment and options available.
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Local resource directory A comprehensive directory to local providers in a variety of disciplines, from ABA and OT to music and art therapy.
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A grassroots community magazine, Spectrums is a new addition to the area’s autism resources. With a mission of providing thoughtful editorial and centralized information, these area professionals will help guide the magazine’s future content—providing expertise, insight and direction. We are honored to be partnering with some of the region’s finest professionals, parents and experts in the field of autism. Look for our next issue in Fall 2013. GENEVIEVE ATHENS • Autism Lifespan Coach www.autismlifespancoach.com Genevieve Athens is the former executive director of the Autism Society of Oregon (ASO) and currently runs her own private practice, Autism Lifespan Coach covering Oregon and SW Washington. She is the mother of a teenager with Autism and has presented numerous conferences and workshops on a range of topics. Since Genevieve’s daughter received the diagnosis at age 3, she has dedicated extensive time and energy into understanding the right treatments for her child and what services are available to their family. Genevieve is a forward thinker and a strategic planner and is using those skills at Autism Lifespan Coach. MICHAEL BROOKE, PsyD • Brooke Psychologists and Social Skills Group Facilitator www.brookepsychologists.com Dr. Michael Brooke is a licensed psychologist in Vancouver and Portland who has worked with individuals on the spectrum for the past 10 years. He has developed a card game to teach conversation skills called Chime In. Dr. Brooke facilitates social skills groups for teens and adults at his Vancouver and Portland offices. He also provides consultation to professionals and parents on spectrum issues.
AMY DONALDSON, Ph.D., CCC-SLP • Portland State University Autism & Child Language Disorders Laboratory asdchildlab.research.pdx.edu/home.html Amy L. Donaldson is an Assistant Professor in the Department of Speech & Hearing Sciences at Portland State University (PSU). Her research focuses on the assessment and intervention of social communication skills in children with Autism Spectrum Disorder (ASD) within the natural environment, as well as intervention efficacy.
Karen Krejcha • Autism Empowerment www.autismempowerment.com Karen Krejcha is the Executive Director and co-founder of Autism Empowerment, a Vancouver, Wash.-based non-profit charity devoted to providing Acceptance, Enrichment, Inspiration and Empowerment to individuals and families of all ages and abilities within the local, national and worldwide Autism and Asperger communities. She is the mother of two sons (6 and 13) diagnosed with Autism and Asperger’s Syndrome respectively. It wasn’t long after her sons were diagnosed in 2008 that she came to the realization that she had been living her life with undiagnosed Asperger’s. Karen is a regular host on Autism Empowerment Radio and personally blogs about her life with Asperger’s at Aspierations—Come As You Are, Let Your Light Shine. JODY WRIGHT • Swindells Resource Center http://oregon.providence.org/patients/programs/swindells-resource-center/Pages/default.aspx For 20 years, Jody Wright has worked directly with and on behalf of children in families. The roles have been in diverse settings, from Oregon Association for the Education of Young Children, to OMSI’s early childhood education program to Providence Child Center’s Center for Medically Fragile Children, and finally to Providence’s Swindells Resource Center. She considers herself a life-long learner, constantly reading and researching the newest and most promising developments in the fields of brain development, education and special education, and special health needs in children and adolescents. She is the mother of an 8-year-old boy who experiences learning differences and sensory integration disorder. She remains personally and professionally committed to the ideal that all children have the opportunity reach their highest potential.
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FROM the PUBLISHER
Swish. Clunk. Swish. Clunk. I am standing in front of a café with Adler as he watches the double doors open and close with a clunky clatter that brings sheer wonder to his then3-year-old eyes. We have stood in this exact spot at this exact café countless times, letting the patrons smile awkwardly and walk around us to head in for their apple fritter and latté. Even the promise of a cinnamon roll doesn’t distract his wide-eyed analysis of each angle and construction of the door: its frame, the weather stripping on the bottom, the handles, the type of lock. His body seemed to rise and fall in sync with the door’s opening and closing, waiting for that exact moment the door clunks closed. Swish. Clunk. Each time it’s as if he has never heard the sound before. And each time brings a wonderment to his eyes that is hard to argue with. This particular door is his favorite in town—grocery stores, our front and back doors, even the library doors—none are as captivating as this door: it has a bell. Our journey with Adler began around age 2 when his fixations, high intelligence and lack of social interactions with peers began to gnaw at me. Every parent, willing to admit it or not, compares their child to the children of their circle of friends. And I was no different. It was getting hard to ignore that, while others thought he was amazingly smart and advanced, his mind was becoming his best friend—his only friend. It became commonplace in our house for every cupboard door, drawer, knob, fixture and handle in our house to have a caribiner, roll of tape, block of wood, bell or spatula hanging from the inside to test how different materials affected how it sounded when closed. The time spent with doors, drawers and cupboards trumped any toy, movie or outing that we could come up with. As my friends’ kids were having playdates and collecting Thomas the Train, my child was becoming increasingly agitated, full of anxiety, having severe tantrums and putting weather stripping around our doorways to examine the sound. Open. Close. Open. Close.
SPECTRUMS MAGAZINE LLC Volume 1, Issue 1 Courtney Freitag Founder and Publisher Phone: (971) 998-5967 Fax: (971) 327-6702 www.spectrumsmagazine.com courtney@spectrumsmagazine.com
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Having a child on the Autism Spectrum, as we would soon learn, was the beginning of a journey that would bring us to the brink of every emotion, tax every resource and make us question becoming parents. Small negative experiences for him became insurmountable hurdles that would take weeks, months and even years to get past. But along the way, something amazing began to happen. Our small milestones felt amazing and those once inconquerable issues were becoming more manageable. We began embracing his interests, experiments, insatiable appetite for information and the need for building. However, it’s why the small things began to mean so much. We were forced to draw upon a well of patience that felt dry every day. My husband and I were forced to complement each other as parents and partners. And it actually began to feel empowering. The newfound empowerment has pulled me through the worst of tantrums, the worst of school days, the worst of nighttime meltdowns. I have learned so much—albeit through some excruciating lessons. My judgement of others is little to none; my drive and passion to help other parents and lend a supportive ear has never been stronger; and I embrace all the things that Adler is teaching us and his younger sister every day. Launching Spectrums Magazine is my own milestone, something I feel I owe back to the incredible therapists, providers, friends, school administrators and family that have supported our journey thus far. As a former journalist and graphic designer, this magazine is a labor of love. Its culmination is a long-lived vision to bridge the educators, providers, families and individuals with autism and give them a space to come together. The hope is that this publication puts a face on ASD, celebrates all the good, connects families and provides an open platform for sharing stories. A printed magazine might allow people to pause, engage with the editorial, learn something and feel support in a way they haven’t experienced yet. I am not an expert or a medical professional. I am a mama who has been in the throes of what feels like the darkest of days. And I am beginning to see some light. Because if there is anything Adler has taught me, when one door closes, another opens.
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 your 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. All rights reserved.
ON OUR COVER Our premiere cover features 7-year-old Sam Downer from Portland. Read Sam’s family story as part of the “Our Turn” series beginning on page 27.
Photo by Jen Downer of She Saw Things Photography
Good food. Education. Support. Find a wide variety of foods and supplements for special diets, including thousands of gluten-free and casein-free options. Take advantage of our friendly staff’s knowledge and passion for finding the right foods and supplements for your family. Our free wellness classes and store tours are led by local health experts, including our own staff nutritionists. Learn about allergens, natural parenting and wellness where you shop! newseasonsmarket.com
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IN THIS SECTION Creating a circle of support..........................9
LIFESPAN
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Trusts and Guardianships...........................11 Sharing an autism diagnosis.......................12
LIFESPAN
A REAL LIFE SWITCHEROO: CREATING A CIRCLE OF SUPPORT We place expectations for our lives based on what we want. Yet life doesn’t always participate. Surrounding yourself with respite and support helps with the redirection to your new journey. by Genevieve Athens When choosing a college major, such as nursing, one doesn’t expect to be questioned about their software coding skills during a job interview. Or when you board a plane for your destination of Los Angeles, you don’t expect to disembark in Chicago. We place expectations for our lives based on what we want. Yet life doesn’t always participate. This is what happens when a parent receives a diagnosis of Autism Spectrum Disorder (ASD) for their child. Life has unexpectedly given you another path that you did not choose and feels unfamiliar. You must start becoming an expert in Autism Spectrum Disorder while at the same time working through the emotions that this diagnosis can have on family life. Since the rate of ASD has been on its upward climb since the end of the 1980s, the increase in awareness of ASD and, subsequently, services and support for ASD have also risen. There are still a lot of holes and gaps in services, particularly for adult supports. But resources have improved and will continue to do so, especially with parent advocacy, planning and commitment. The early years (0-5 years): If you have a child that has been diagnosed at a young age, become familiar with Special Education law under the Individuals with Disability Education Act (IDEA). Depending on your child’s age, they will receive special education series via an Individual Family Service Plan (IFSP) or Individualized Education Plan (IEP). Oregon offers free workshops for families and caregivers through centers like Families and Community Together (FACT) in downtown Portland, www.factoregon.org, and the Advocates for Children that Experience Special Needs support group in Wilsonville, www.actsn.org. On the national front, the most comprehensive source of Special Education Law & Advocacy is Wrightslaw at www.wrightslaw.com. Materials, speakers, advisors and professionals are available to help aid in navigating special education rights, responsibilities and procedures. Question and understand your pediatrician’s knowledge of ASD. If you get to a tipping point where you know more about ASD than your doctor, switch to a developmental pediatrician or another pediatrician that is familiar with the various treatment options. There are a variety of naturopathic options with demonstrated benefits for those with ASD, from biomedical interventions, glutenand casein-free diets, B6, Magnesium and Vitamin D supplements. Several reports, summaries and scientific-based research are available online supporting alternative and complementary care.
If you get to a tipping point where you know more about ASD than your doctor, switch to a developmental pediatrician or another pediatrician that is familiar with the various treatment options.
The in-take process for obtaining services through the county’s Developmental Disability Services branches gives families a head start on early intervention. The DDS case managers can also provide information, paperwork and guidance for low income families to access SSI and the Oregon Health Plan, the Oregon Medicaid Waiver. Additionally, the Portland Metro boasts top professionals and therapists in the private sector, including speechlanguage pathology, occupational therapists, sensory integration therapies, Applied Behavior Analysis (ABA), auditory services and many more. Insurance can help cover expenses for some of these services, such as the recent approval by legislature to cover ABA through Kaiser Permanente insurance. Families should check their insurance coverage prior to making a therapy commitment. School years (5 to 18 years): This is a big span of time and one where your child may be developing significantly. While continuing to hone your skills in special education advocacy, treatments based on best practices, your own emotional support and that of your family members, you’ll want to pay attention to those transition IEPs. Start talking about transition at your child’s annual IEP when they are 14 years old and familiarize yourself with the diploma options in Oregon. Person Centered Planning training, one that facilitates the development of life plans focusing on unique interests, strengths and resources as the foundation for all aspects of planning, is helpful with graduation options and requirements. Visit the Oregon Technical Assistance Corporation (OTAC), www.otac.org, and FACT, www.factoregon.org, for upcoming workshops. Between the ages of 17 and 18, you will work with your county Developmental Disability case manager to get paper work together for SSI, Medicaid Oregon Health Plan and determine whether you should continue being your child’s guardian at age of majority. Consulting with an attorney for a Special Needs Trust is a good idea at any age, depending on your income or the income of other family members from which your child may inherit. Transition Years (18 to 21 years): After high school, your child may want to pursue post-secondary education (dependent on the diploma they received) or transition services through your school district. Start to look at these various options and make appointments to visit all facilities with your child. Request Brokerage Services through your county case manager and start working with Vocational Rehabilitation for job coaching, support and placement. Continue to look for social groups for your child and embrace that social challenges and support may continue throughout life. Adult Years (after 21 years): Many parents or caregivers of a person with ASD continue to be involved after they become adults. Fine-tuning the independent living skills for independent (or semi-independent) living, employment, social development and recreation are a life’s work. Review living documents like wills, special needs trusts, guardianship/trustee assignments and estate planning documents to ensure the provisions are still accurate and current. Continued on page 19
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PLANNING FOR THE FUTURE Raising a special needs child comes with a myriad of questions and preparations for life once parents or guardians are gone. The simple answer: begin planning now rather than later. by Tim Nay, Law Offices of Nay & Friedenberg
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The first step is to begin planning your own estate and the sooner the better. Some parents wait to start planning and pass away unexpectedly. The results can be disastrous for the child with special needs unless the parents are very wealthy. That’s not the case for most of us. Any estate planning with your child in mind is better than no planning. The greater the child’s impairment, the more important it is to plan for your child’s future. The goals of planning should include safety, protection against exploitation and abuse, food, clothing and shelter as well as quality of life for 10 to 50 years of your child’s life after you are gone. These goals are rarely attained solely by funds from the parents’ estate. Your child’s planning must provide for continuing eligibility for public benefits to supplement funds from your estate or other family members. Most public benefits have restrictive eligibility requirements based upon income and assets, known as “means testing.” For example, two of the most common benefits used by individuals with special needs, SSI and Medicaid, allow no more than $2,000 of countable assets for eligibility. If you leave part of your estate directly to your child, eligibility for SSI and Medicaid will be terminated until the child is below $2,000.
Social Security Benefits Effective planning for a special needs child must consider eligibility for Social Security benefits. Several benefit programs are potentially available for individuals with special needs. Some individuals qualify for more than one at the same time. Not all are means tested. Eligibility includes Medicaid or Medicare coverage. Often, Medicaid eligibility is more important than the monthly cash benefit because most state Medicaid programs provide housing, food and supervision for eligible disabled children and adults. All Social Security disability-based programs require the applicant to be “permanently and totally disabled” for 12 months or more. If the disabled child can’t handle her/his monthly cash benefit appropriately, Social Security requires appointment of a “Representative Payee” to receive the monthly cash benefit and report annually how the funds were used.
Social Security Disability Insurance (SSDI):
Not Means Tested. Leads To Medicare Coverage. SSDI monthly cash benefits are based upon wage withholding from either the parent’s or child’s work history. Yes, even a permanently and totally disabled child can work enough to be eligible for SSDI, then withdraw from the workforce and qualify for SSDI based upon her/his account. To qualify from a parent’s SS account, the parent must be disabled, deceased or retired and entitled to SS benefits. Your child can get benefits if he or she is your biological child, adopted child or dependent stepchild. Sometimes a child can qualify on a grandparent’s earnings. Adult children must be unmarried and disabled before age 22 when the parent retires, dies or becomes
disabled. Medicare eligibility follows SSDI eligibility no more than 24 months later. Medicare does not pay for housing, food or supervision. For more information, see www.ssa.gov/pubs/10026. html#a0=4 and http://www.ssa.gov/pubs/10085.html#a0=0.
LIFESPAN
Every parent of a special needs child wonders “What will happen to my child when I’m gone?” “How can I make sure her basic needs will be met? What about maximizing her quality of life beyond basic needs?” “I’ve heard that I shouldn’t leave anything in my will for my special needs child. Instead I should leave his share to someone else so he won’t lose Supplemental Security Income (SSI) and Medicaid.” “Should I leave more/less to my special needs child than my other children? “I’ve heard of a special needs trust. Should I set up one now?” “How do benefits such as, Social Security Disability Insurance (SSDI) and SSI, Medicare and Medicaid fit into my child’s future?” “Who should be making life decisions for my child when I’m gone?” This two-part article will address specific planning steps for parents of special needs children that will provide peace of mind and quality of life for special needs children.
Supplemental Security Income (SSI):
Means Tested, Leads To Medicaid Coverage. For SSI eligibility your child must be blind, disabled or age 65 or older, own less than $2,000 of “countable assets” and have income under $710 per month (2013). In most states, SSI eligibility means monthly cash payments up to $710 and automatic Medicaid eligibility. For severely disabled children, Medicaid is your child’s most important benefit because Medicaid often provides housing, food and supervision. Medicaid is also means tested. If the child’s assets or income from any source exceed SSI limits, both SSI and Medicaid could be lost. If an SSI recipient receives food or financial help with housing expenses, called “In-Kind Support and Maintenance or ISM,” the monthly SSI amount is reduced by about $236.67. Gifts of clothing are no longer considered ISM. Many parents charge rent when their SSI-eligible child lives at home, eliminating the ISM reduction. In addition to asset and income means testing, SSI and Medicaid disqualify recipients who give away cash or other monetary assets, based upon how much is given away. SSI can be lost for up to three years and Medicaid can be lost for up to five years following disqualifying transfers. For more information about SSI, see www.ssa.gov/pubs/10026.html#a0=0.
HUD Public Housing Benefits Means Tested
The U.S. Department of Housing and Urban Development (HUD), a public housing program, was developed to provide decent, safe rental housing to low-income families, elderly and disabled individuals, based on annual gross income, citizenship or immigration status. Assets are not counted in determining eligibility. Local housing authority agencies administer the program. Long waiting lists for services are common. For more information, see: http://usgovinfo.about.com/od/federalbenefitprograms/a/ publichousing.htm and http://portal.hud.gov/hudportal/HUD?src=/ topics/rental_assistance/phprog. In the author’s experience, effective special needs estate planning must focus on maintaining eligibility for these crucial means tested benefits for your child’s lifetime. Creating a direct inheritance of cash or property for a special needs child rules out eligibility until the inheritance is “spent down” to eligibility levels as low as $2,000. After spend down, your child lives in poverty with minimal quality of life. Leaving funds to a sibling for the special needs child can be disastrous if the sibling dies, goes through divorce, is sued, has tax liens, goes through bankruptcy or experiences a personal or family emergency requiring instant funds. The use of a properly drafted special needs trust, “SNT,” to receive an inheritance is the best estate planning option for parents of special needs kids. Current Social Security, Medicaid and public housing laws exempt assets owned by a trustee of a properly drafted SNT from being counted by means tested benefits. Part two will focus on SNTs, legal, financial and health care decision making for your child and considerations regarding how to divide your estate between all your children. Tim Nay, founding attorney of the Law Offices of Nay & Friedenberg, has been helping families provide security and quality of life for special needs individuals since 1984. Tim’s practice focuses on special needs and benefits planning as well as elder law and estate planning matters. WWW.SPECTRUMSMAGA ZINE.COM
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LIFESPAN
TALKING ABOUT AN AUTISM DIAGNOSIS: Learning a new language by Kerry Cohen
At the pool, Ezra approaches a woman who is trying to relax. I go on high alert, aware that at any moment I will have to tell her. Sure enough, he gets too close and touches her arm. He says something like, “Mine turtle!” “Ezra,” I call. The woman looks at me. She’s annoyed. “He’s autistic,” I say, and her expression relaxes into something else–pity, maybe, or concern. At a coffee shop where there is an area intended for children, Ezra runs through the space. As usual he’s less interested in the play area and more interested in vocal self-stimulation, or “stimming,” and giggling. From across the room I see a couple looking at him oddly. One whispers to the other. I go to retrieve Ezra, and as I do, I tell the people, “He’s on the autism spectrum.” They immediately act remorseful. One says something like, “He sure seems to be having a good time.” At the playground, Ezra climbs into a tunnel where a little girl sits with her father. She can’t be more than three. Ezra does that thing
he always does when he thinks someone is cute: he moves his face too close to hers and smiles big. “I’m sorry,” I say to the father. “If he’s bothering you, please tell me. He’s on the autism spectrum.” Only in the past year or so, did I realize that Ezra is listening to the way I talk about him. I’m ashamed that I’ve apologized for him at times, and I’m still not sure how I feel about the fact that I step in so quickly to let them know his diagnosis. But, perhaps letting him hear that word “autism” to describe him, he’s learning how to describe himself as well. I held off letting Ezra get a diagnosis until he was three-and-a-half. I knew he was autistic. His differences were obvious. But the excessive diagnosing of autism, kind of like the way things used to be with ADHD, disturbed me. And, before three, I just wasn’t convinced. I saw many parents around me jump on the autism diagnosis and head quickly into treatments, some scary. I wanted to be careful.
But even before I accepted the diagnosis, I had to use language to talk about him. He was…different. He smeared his feces on my sister-in-law’s carpet. He didn’t answer questions. He ate almost nothing, didn’t play with other kids. He doesn’t sit in a wheelchair or have a disfigurement. His disability isn’t visible. My family was concerned. Strangers pulled me aside: “Have you heard of autism?” No, I wanted to answer sarcastically. “I must be in denial, and thank God here you were to save my child from my ignorance.” I have a friend who doesn’t have a clearcut diagnosis for her son, and so she says, “He’s an inappropriate toucher.” Another friend simply says, “She won’t answer your questions.” I love that because it describes the behavior. But when I’ve tried these approaches with describing Ezra to people, especially strangers, it often invites discussion I wasn’t interested in having. They want you to pin down a diagnosis. And, Ezra does have a diagnosis, after all. Maybe we’re lucky that way. We don’t have to invite stranger’s questions if we don’t feel Continued on next page
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LIFESPAN
Perhaps, too, telling people he’s autistic will lead them to see that autism can look like Ezra, who is like no other person in the world. New language, Continued from page 12
like entertaining them. Discussion is good. Questions are good. But just because I have an autistic son doesn’t mean I want to educate the world about what that means. More so, I don’t want Ezra to have to do that himself when he’s older. My stepdaughter, who is neurotypical and the same age as Ezra, tells people when we’re out: “He has autism.” She says it easily, without emotion. To her, it’s obvious that once people know this they’ll understand he’s different and we can get down to the business of living our lives. Maybe she’s right. So, I tell people he’s autistic. Even though I know that many people still think Rainman or Albert Einstein or some other caricature of autism, and even though they may make all sorts of assumptions that aren’t true about him – Is it too noisy in here for him? Does he not like affection? – it is language to talk about my son, limited as it is, when there is no language otherwise to describe him. And, for Ezra, who has enough problems with language, who already doesn’t quite understand this world, it gives him language to speak about himself, to explain why he doesn’t quite understand. Perhaps, too, telling people he’s autistic will lead them to see that autism can look like Ezra, who is like no other person in the world. Kerry Cohen is the author of six books, including the memoirs Loose Girl: A Memoir of Promiscuity and Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and The Meaning of Normal. She lives in Portland with the author James Bernard Frost and their combined four children.
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IN THIS SECTION Special Needs Camp Guide.........................16 Happy Camper............................................18
RECREATION The 2013 Special needs Camp guide Begins on page 16
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RECREATION
SPECIAL NEEDS
2013 DAY CAMPS Adventures Without Limits www.awloutdoors.com • (503) 359-2568 1341 Pacific Avenue, Forest Grove Adventures Without Limits’ mission is to empower people of all abilities through quality outdoor experiences. Autistic Community Activity Program (ACAP) (Formerly Autistic Children’s Activity Program) 1900 SE Milport Road, Milwaukie www.acapportland.org • (503) 342-6645 info@acapportland.org Summer day camp with a mission to provide community education through recreation for people. BikeFirst! iCan Shine Bike Week www.bikefirstlttw.com/clinics/bike-week/ 4811 NE Shaver Circle, Portland annbikefirst@gmail.com Held in the gymnasium at Concordia University, this week-long bike camp for kids 8 and up uses specialty bikes outfitted to prevent tipping. Camp Attitude www.campattitude.com P.O. Box 207, Foster (541) 367-3420 • camp@campattitude.com Dedicated to providing a unique camping experience for families in the disability community by advocating a biblical response toward disabilities, both visible and invisible. Camp Rivendale www.thprd.org/facilities/stuhr/ camprivendale.cfm 8005 SW Grabhorn, Beaverton (503) 629-6342 • jenkinsestate@thprd.org Summer day camp program for kids ages 6+ providing recreational opportunities to at-risk youth and individuals with disabilities or behavioral challenges. Campers explore areas of music, dance, drama, visual arts, sports and aquatics.
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Camp Social www.socialkraft.net 400 E Evergreen Blvd, #311, Vancouver (503) 381-9344 • sgorman@socialkraft.net Camps focusing on building social skills and related skills in those with social learning challenges. Works on flexible thinking, making connections, social problem solving and meeting friends. Camp YaketyYak www.campyaketyyak.org 19915 Old River Drive, West Linn (503) 358-8182 or (503) 752-5799 office@campyaketyyak.org Day camps that develop social communication and emotional regulation skills in children of all abilities, around the ages of 6-11, while also serving as a training site for future educational and therapeutic professionals. Children’s Developmental Health Institute (formerly the Artz Center) www.childrenspdx.com 1675 SW Marlow Avenue, Portland (503) 228-6479 • info@childrenspdx.com Intensive camps focusing on literacy, handwriting and language. Community Based Activity Program www.cbapkids.com 1341 Pacific Avenue, Forest Grove (503) 359-2418 • cbapkids@gmail.com CBAP provides inclusive educational and recreational services to students with and without disabilities ages 5-21. Evergreen Public Schools Community Education 13501 Northeast 28th Street, Vancouver (360) 604-4082 • www.evergreenps.org Various classes and camps. To request accommodation due to the presence of a physical, sensory or mental disability, contact the ADA coordinator, Steve
Getsinger at least 10 days prior to the class or program. Help Eliminate Learning Problems (HELP) Marylhurst University, Davignon Hall #326 (503) 635-3389 • www.helpadd.com Works on improving school difficulties across multiple disabilities. PlaySpace www.pdxplayspace.com 3014 NE Ainsworth Street, Portland (503) 224-2820 • info@pdxplayspace.com Social skills, movement and play groups facilitated by a speech-language pathologist and social coaches assist children develop friendships in a supportive and fun environment. Portland Parks & Recreation Adaptive & Inclusive Recreation Visit the PP&R website for a current catalogue of class offerings: (503) 823-4328 www.portlandoregon.gov/parks/39830 Specialty Athletic Training (541) 913-4406 www.specialtyathletictraining.com ryan.lockard@specialtyathletictraining.com Professional personal training specializing in fitness programs for children and adults with special needs. The Kids Cooking Corner www.thekidscookingcorner.com 5206 NE 78th Avenue, Vancouver (360) 433-9114 heidi@thekidscookingcorner.com This non-profit cooking school includes lessons and camp with a Home-Ec theme. Weekly cooking night for students on the autism spectrum. Continued on next page
Vancouver Parks & Recreation www.cityofvancouver.us/parks-recreation/recreation/ disabled/index.asp (360) 487-7060 • teresa.williamson@ci.vancouver.wa.us Inclusion program for children and adults where everybody plays.
RECREATION
SUMMER CAMP DATES ARE LISTED ON OUR WEBSITE:
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Whiz Kid Day Camp Youth Community Building of Christ Community Church 4325 SW 107th Avenue, Beaverton (503) 459-2073 • www.socialwhizkids.com Social Whiz Kid day camp for boys and girls 7-12.
OVERNIGHT CAMPS Camp Meadowood Springs www.meadowoodsprings.org P.O. Box 1025, Pendleton (541) 276-2752 • info@meadowoodsprings.org Home of P.A.C.E. ASD Family Immersion Camp with a mission of “improving the lives of people who have communication difficulties and related disorders by providing service, education, training and research.” Camp Odakoda (formerly Camp Quest) www.asdoregon.org 12042 SE Sunnyside Road #450, Clackamas (503) 320-3103 • asdoregon@yahoo.com An overnight camp just for kids with Asperger’s Syndrome and High Functioning Autism. Mt. Hood Kiwanis Camp for Children & Adults with Disabilities www.mhkc.org 10725 SW Barbur Boulevard, Suite 50, Portland (971) 230-2922 • Kristy@mhkc.org Residential camp offers horseback riding, canoeing, swimming, arts and crafts, hiking, camping, outdoor cooking and a challenge course. Upward Bound Camp www.upwardboundcamp.org P.O. Box C, Stayton (503) 897-2447 • upward.bound.camp@gmail.com Christian overnight camp for people experiencing disabilities ages 12 through geriatric. Activities include fishing, hiking, swimming, boating, archery and more. YWCA Camp Westwind http://ywcapdx.org/what-we-do/camp-programs/camp-westwind/ 1111 SW 10th Avenue, Portland (503) 294-7476 • Westwind@ywcapdx.org Inclusive residential family camp held on over 500 acres of pristine and scenic coastal land at the mouth of the Salmon River Estuary.
CAMP
CAMP FEATURES
ADVENTURES WITHOUT LIMITS ACAP BIKE FIRST! camp attitude camp rivendale camp yakety yak children's developmental health institute community based activity program evergreen public schools community education help eliminate learning problems (HELP) playspace specialty athletic training the kids cooking corner vancouver parks & rec whiz kid day camp camp meadowood springs
SPORTS ACTIVITIES/FOCUS
Day camp
OVERNIGHT CAMP
ARTS & CRAFTS ACTIVITIES
mt. hood kiwanis camp
faith-based
ACADEMIC FOCUS
upward bound
High staff-to-camper ratio
Social skills building
camp ODAKODA
ywca camp westwind
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RECREATION For Julie Nuding, attending summer camp for many years has had nothing but positive effects. An autistic adult from Milwaukie, Julie is a well-loved member of the Mt. Hood Kiwanis Camp family. by Courtney Freitag Julie Nuding is a celebrity in her own right. For the past 14 summers, the 24-year-old Milwaukie woman has attended the Mt. Hood Kiwanis Camp, one of the largest programs of its kind in the United States and the only one to offer one-to-one camper-counselor ratio without extra fees. Each summer when Julie pulls up with her family, camp counselors share excited chitchat over their walkie-talkies announcing her arrival. Her bright smile and twinkling eyes convey her love of camp— and speak volumes despite her limited verbal skills. “I know Julie loves camp because of the smile when she gets there,” said Deb Nuding, Julie’s mother. “While it is sometimes a struggle for kids with autism to be out of their environment, it is also important for them to experience new and different things.” Raising any special needs child is a struggle and the Nudings needed help with respite care. In 1998, their case manager shared Mt. Hood Kiwanis Camp as an option for a summer break and although hesitant, the family signed Julie up. Fifteen years later, it’s safe to say it was a success. “At camp, individuals with autism get a chance to experience freedom from their caregivers or families for a week and participate in activities that might otherwise not be available to them,” said Terri Hammond, communications director for Mt. Hood Kiwanis Camp. “They get to go to a place where everyone is focused on their abilities rather than their disabilities and be around their peers.” With more than 500 campers annually, the week is filled with swimming, horseback riding, canoeing, adventure challenge course, campfires, fishing and more on 22 acres of US Forest Service land in the Mt. Hood National Forest. The program is able to offer families and caregivers a week of respite all while making lifelong memories for those attending camp. “Mt. Hood Kiwanis Camp also provides families with another resource and support system in the disability community,” Hammond added. Families are prepped ahead of camp by discussing eligibility requirements, a camper’s needs and suitability for the week-long program. Hammond added that parents are also encouraged to inform camp, in as much detail as possible, about how MHKC can better support their camper—physically, mentally, socially, emotionally and behaviorally. The camp works hard to make accommodation for routines that occur at home and will work with families if one isn’t able to be made.
“We arrived at camp one year and they had already created a picture schedule for Julie to follow,” Deb said. “We were so happy that she had this kind of support at camp as we had started using picture schedules at home and school. What a great surprise!” Camp staff comes from a variety of backgrounds, education and interests, are competent and confident and all have a genuine interest in providing a fun camping experience, Deb said. And while most parents are more nervous than the child they’re leaving at camp, the years that the Nudings have attended MHKC have allowed lifelong memories for Julie and respite for her parents. “After two years of staying at home during the week Julie was at camp,” Deb said, “we decided it was no longer an issue and we started taking our own vacation the week she was gone. We place Julie in their hands with total confidence.”
GETTING READY TO GO TO CAMP: Talk about it. Begin talking about camp, the activities
planned, teachers or counselors and other important information you have. A countdown calendar might help prepare and build excitement about attending camp.
Visit and tour. Most camps will allow families to meet staff, tour facilities and get a sense if it’s the right fit. If a tour or visit before camp is not an option, visit the organization’s website to find past year’s photos and review with your camper. Visual schedule. Obtain information before camp
starts about a typical day to create a visual schedule. Walk through the steps several times before camp and address any concerns or questions. Make sure your camper has a copy of the schedule when attending camp.
Label clothing and belongings. Packing your
camper’s favorite sweatshirt, tagless pants or other comfort items helps with the transition to camp life. Clothing, belongings, toiletries and special items should be marked with a permanent marker, sew-in tags or washable labels available online.
SHARE PHOTOS OF YOUR CAMP EXPERIENCE ON OUR FACEBOOK PAGE! 18
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Switcheroo, Continued from page 9
It is difficult to put all the necessary life steps in a short column and raising a child with a developmental disability like Autism can be both daunting and fulfilling. But educating yourself about services, supports and resources will ultimately help your child improve their own self-advocacy skills.
Supporting the Autism community for 25 years!
Genevieve Athens is the President of Autism Lifespan Coach and the mother of a teenage daughter with ASD. Visit the website at www. autismlifespancoach.com or visit the Facebook blog for local autism news and events at www.facebook.com/autismlifespancoach.
Seeking Supports?
(formerly Autistic Children’s Activity Program) @acappdx
Resource centers, websites and organizations • Autism Research Institute (ARI): www.autism.com • Autism Recovery Resources of Washington (ARROW): www.autismrecoverywa.org • Autism Research and Resources of Oregon (ARRO): www.arroautism.org • Autism Society of Oregon: www.autismsocietyoregon.org • Autistic Global Initiative: Focus on adult service and supports www.autismwebsite.com/agi/index.html • Child Disability Connection: www.childdisabilityconnection.org/ index.php • Families and Community Together (FACT): www.factoregon.org • National College of Naturopathic Medicine: The only national accredited natural medicine college with graduates treating patients on the spectrum with biomedical options: www.ncnm.edu • County Offices of Developmental Disability Services: www.oregon.gov/DHS/dd/ • Oregon Brokerages: www.oregon.gov/dhs/dd/pages/adults/ supports.aspx • Oregon Vocational Rehabilitation: www.oregon.gov/DHS/vr/ pages/index.aspx • Oregon Navigation Map for Services: www.orcommissionasd.org • Swindells Resource Center: www.ProvidenceOregon.org/swindells • Autism Empowerment: www.autismempowerment • Autism Society of SW Washington: www.autismsocietyofwa.org • The ARC of SW Washington: www.arcswwa.org
Join us this summer! Camp registration now open.
County Developmental Disabilities Offices
Clackamas County Developmental Disability Services 2051 Kaen Road, Oregon City (503) 655-8640 www.clackamas.us/socialservices/developmental.html
Clark County Developmental Disabilities 1601 East Fourth Plain Boulevard, Suite A419, Vancouver (360) 397-2130 • www.clark.wa.gov/dev-disabilities/
6-7 week day camp • Ages 7 through adult Daily community activities Visit us at www.acapportland.org info@acapportland.org • (503) 649-2066
Multnomah County Developmental Disabilities Services 421 SW Oak Street, Suite 610, Portland (503) 988-3658 • web.multco.us/dd
Washington County Developmental Disabilities Services 155 N First Avenue, Suite 160, Hillsboro (503) 846-8881 www.co.washington.or.us/HHS/DevelopmentalDisabilities/
ACAP provides education through recreation for people with Autism (ASD).
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IN THIS SECTION Educational vs. Medical Diagnosis............21
EDUCATION
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FEATURE ARTICLE
EDUCATION
by Courtney Freitag With efforts to increase the inclusion of special education students in classrooms, teachers and daycare providers are often the first to raise developmental concerns about a child in their care. With no biological marker for autism, and in tandem with heightened awareness about the disorder, families and caregivers have options for early intervention that starts with by both health care and education teams to determine a diagnosis. Colleen Forbes, an Early Intervention/Early Childhood Special Education teacher with Portland Public Schools, said that state eligibility requirements dictate how a public school student is made eligible for services. State eligibility requirements for an education diagnosis of Autism Spectrum Disorder (ASD) is broad and doesn’t differentiate “low” and “high functioning.” It does include, however, include “sensory” behaviors and if there are discrepancies in development, she said. “The eligibility needs to address impact in behavior, sensory, social and communication,” Forbes added. “It needs to show an impact in the ability to perform adequately in a school setting. We also need to document that concerns and behaviors have continued over a period of time.” Additionally, students that have a medical diagnosis are not automatically eligible for special education services, according to the Individuals with Disabilities Education Act (IDEA). Educational eligibility and subsequent services are determined by conducting assessments and testing performed by a school’s multidisciplinary team and not that of medical diagnostic tests. These can include observations, history, developmental information, behavior information and a documented prevalence over a period of time. The school’s team works with families as a team to determine eligibility and services available under IDEA.
may affect the child’s educational performance; and a behavior rating. Once a student receives eligibility under the ASD diagnosis, it sets the stage for the development of an Individualized Education Program (IEP) that can implement specific accommodations in the school setting, Forbes said. These supports help meet the federal standards for keeping special education students in their “least restrictive environment,” the classroom, for 80 percent of their day, according to Oregon Department of Education (ODE) criteria. “Once you have an eligibility you start the education plan,” Forbes said. “Look at the learning styles of your child and if there are accommodations that a classroom can make.” Washington and Oregon state law dictates that the only professionals who can medically diagnose ASD include: board eligible neurologists, board eligible psychiatrists, licensed psychologists, board certified developmental and behavioral pediatricians. Health professionals typically use The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) to diagnose a child, combined with a battery of assessments to support and verify a diagnosis. “Educators cannot give a diagnosis and it may sound like semantics, but legally we teachers are not allowed to diagnose, so this is an important distinction,” Forbes said. From birth to age 5, county education service districts and preschools or daycares are involved in creating an Individualized Family Service Plan (IFSP). An IFSP defines clear goals that support Continued on page 22
According to the Oregon Administrative Rules (OAR) for Special Education, the 11 categories for IEP eligibility include:
• Autism Spectrum Disorder • Communication Disorder • Deaf/blindness • Emotional Disturbance • Hearing Impairment • Mental Retardation • Orthopedic Impairment • Other Health Impairment • Specific Learning Disability • Traumatic Brain Injury • Vision Impairment
To meet OAR’s eligibility criteria for ASD, the rules state that a student must undergo evaluations including a developmental profile describing autism-related characteristics; at least three observations of behavior, one including direct interactions with a child in a play-based fashion; assessments of communication; a medical or health assessment including whether physical factors
Number of Oregon public school students in special education —2011-2012 Oregon Dept. of education data
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Medical vs. Educational, Continued from page 21
EDUCATION
and can be implemented in a child’s natural setting, whether it be at home or in a daycare setting, combining a team of professionals to provide intervention services such as speech therapy, sensory supports and psychological care. Children that obtain an educational diagnosis may or may not also have a medical diagnosis of ASD. Although attempts are in process to create more uniformity across education and medical fields, the process currently for assessments between systems can often differ, said Dr. Sherri Alderman, medical director and developmentalbehavioral pediatrician with the Children’s Developmental Health Institute. “There are efforts to build conformity across educational systems in Oregon and standards for both medical and education that will bring both into closer alignment,” Alderman said. “The Oregon Autism Commission has been doing this very important work.”
THE FEDERAL TARGET FOR THE PERCENTAGE OF A SCHOOL DAY A SPECIAL ED STUDENT REMAINS IN A REGULAR CLASSROOM
Medical evaluations should include autism-specific standardized testing while educational assessments will often include nonstandardized parent interviews, cognitive and autism-specific testing tools that can vary from school district to school district. If there are concerns that a child shows markers of ASD, health care specialists such as psychologists, developmental-behavior pediatricians, child psychiatrists and pediatric neurologists will often work collaboratively with a multidisciplinary team to diagnose and treat those with ASD, said Dr. Fulgencio del Castillo, developmentalbehavioral pediatrician with the Providence Neurodevelopmental Center for Children. “For families, the mere suspicion that a child might be autistic is life-changing,” del Castillo said. “There are numerous sources of information, many ways in which autism can affect a person’s ability to function and the observation that no two children have exactly the same symptoms,” he continued. “Combined with the differences in the number and severity of symptoms a person may have, a diagnosis of autism means different things to different people.” Special Educational Services for Children with Autism Birth through age 5 of a child is a crucial time for learning. Neuron connections made in early childhood will be maintained throughout the lifetime. Children have “developmental plasticity” and neurons will adapt to changing demands, said Mary Bridget Barniskis, inclusion specialist for the Helen Gordon Child Care Center at Portland State University. “Early Intervention and Early Childhood Special Education is not just about the child,” Barniskis said. “The idea behind Early Intervention (EI) is to support children through empowering families. Children are most at ease and comfortable with family so it makes sense that they will learn the most with them.” After the evaluation process, interviews and determining what motivates children, the Early Interventionists’ role is to help families see their own strengths and resources, Barniskis said. EI can help families develop new routines, tweak others and provide support to help them feel empowered.
interaction; patterns of behavior that are repetitive, restricted or stereotypic; and unusual responses to sensory experiences • Has impairments inconsistent with his or her development in other areas • Has these impairments documented over time and/or intensity The school team must also determine and document that: • The disability adversely affects the student’s ability to learn • The student needs special education services as a result of the disability The medical diagnosis and educational eligibility rely on similar criteria; however, the results of each do not necessarily impact the other: • Physicians use standardized tools to make the medical diagnosis based on autism diagnostic criteria. School personnel use observational data occurring in multiple environments on at least two different days. • The medical evaluation helps determine the child’s overall level of functioning. The educational evaluation helps determine the impact of autism characteristics on the child’s development and educational performance and, therefore, his or her need for specially designed instruction. Diagnosing Autism Spectrum Disorders Since there is no medical test to diagnose ASD, primary care providers, such as pediatricians, family physicians, and pediatric or family nurse practitioners, use standardized tools at specific intervals to screen or identify patients.
The ODE states that those with the educational classification of Autism Spectrum Disorder may be eligible for special educational services if the child meets multiple criteria:
“Many families who do seek the autism-specific medical evaluation and receive the diagnosis often experience a sense of validation and reduced self-blame,” Alderman explained. “It also connects them with other families with a child with autism with similar experiences and begins a process of social networking that can be very supportive for the family and give them direction and purpose.”
• Has documented evidence by the school team that there are impairments in communication; impairments in social
According the to Autism Society of America, an initial medical assessment typically includes: Continued on page 38
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REGON
CITY ACUPUNCTURE
Carol Griesmeyer LAc, RN Trained in NAET Recent studies are showing that Nambudripad Allergy Elimination Technique is effective at assisting children with Autism Spectrum Disorder. It is a non-invasive way to address the allergies that are common to these children. You can check out their website at www.naet.com or call me.
503-653-1468 619 Madison St #110 Oregon City, OR 97045 www.oregoncityacupuncture.com WWW.SPECTRUMSMAGA ZINE.COM
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IN THIS SECTION Training educators about wandering........ 25 “Our Turn”............................................... 28 Special needs dental patients.................. 29
HEALTH & WELLNESS
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HEALTH & WELLNESS
Training Educators
ON THE DANGERS OF WANDERING
by Courtney Freitag Dr. Justine Haigh recounts the day her 13-year-old son Daniel jovially skipped unknowingly toward danger. Diagnosed with severe autism at 18 months, Daniel bolted from his Portland middle school classroom, across campus and was at the edge of a 6-lane road only to be diverted by a quick-thinking teacher. Every year, thousands of people with Autism Spectrum Disorder bolt, wander, run or “elope” away from safe surroundings into dangerous ones. Some are never found, are injured or repeat the behavior several times. A 2012 national study by the American Academy of Pediatrics found that half of the 1,200 families surveyed reported that their child had practiced “bolting behavior” once or more between ages 4 and 10. Taking from her son’s experience and the rising cases of autism, Haigh reached out to Autism Risk & Safety Management and teamed with the company’s founder, Dennis Debbaudt. The collaboration led to an extension of Debbaudt’s company, which currently trains first repsonders and law enforcement, to produce an instructional training video for staff and educators in the K-12 sector who work with children on the spectrum. “By adding our project to their risk and safety library, every school district will be in a better position to manage campus risk for all students and staff,” Debbaudt said. A well-respected speaker and author in the autism community, Debbaudt is a parent to an adult son on the spectrum. He has co-authored more than 30 articles and several books on safety training and autism with law enforcement and first responders. “After parents, the people spending the most time with a child with ASD are educators and people employed in the school building,” Debbaudt said. “It’s imperative they receive the proper training for runners and elopers like the training done with law enforcement, fire fighters and other first responders.” Debbaudt travels from his home in Florida and tours Oregon the last week of April for several speaking engagements with first responders and law enforcement. Thanks to the financial support of various state agencies, Debbaudt will host free workshops to parents, care providers, foster care parents, educators and professionals throughout Portland, Eugene, Medford and Salem. See Dennis’ speaking tour schedule on page 26.
50%
The training videos for educational staff will also feature onscene Response Cards that contain key information, which highlight the main points in the video but in bullet form (easy for quick referral and recall). The cards provide a quick snapshot of autistic traits, including that the person may be non-verbal, might repeat phrases or commands or may laugh or giggle. These cards can also be customized according to an individual’s needs. “The videos raise awareness in schools to ensure their safety,” Haigh added. “In addition, autistic children are often misunderstood; the teacher-child interactions will show the best ways to understand and to interact.”
8 times
Children with ASD are eight times more likely to wander than their typically developing peers 2011 study by the Interactive Autism Network
Haigh, a professor at George Fox University, has incorporated the project with her marketing students who are tasked with brainstorming the marketing communications, including the viral campaign and identifying key informants and opinion leaders. A local filmmaker will assist with video production while Debbaudt is in Oregon with a goal to incorporate the videos into in-service training days beginning the 2013-2014 school year. The videos will be available for purchase by the schools or education training programs. The price point has not been set yet. The video and support print materials will initially be distributed online at www.autismriskmanagement.com with a phone and mail marketing campaign to follow. “We believe the video project will inform not only educators but all campus employees about the safety risks and the amazing abilities students with ASD have,” Debbaudt said. “The production will help every school district employee become aware of the risks, learn something about autism and learn a lot about themselves.” Continued on next page
Number of children with ASD that have wandered, bolted or eloped at least once after the age of 4 . American Academy of Pediatrics study, 2012
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HEALTH & WELLNESS
Safety video, Continued from page 25
Thanks to Dennis Debbaudtâ&#x20AC;&#x2122;s speaking tour the support of various state agencies, MONDAY, APRIL 22 all speaking events are free! Multnomah County Developmental Disabilities Services
Location: East County Building, 600 NE 8th Street, Gresham Presented in the Sharon Kelley A room Contact: Sherrelle Owens, (503) 988-6107 10 a.m. - Noon Training for agency staff 4:30-6:30 p.m. Training for parents and service providers
WEDNESDAY, APRIL 24 ARC of Lane County Location: 1200 Highway 99 North, Eugene Contact: Sydney Shook at sydney.shook@arclane.org or (541) 337-6174 9-11:30 a.m. Training for first responders and parent panel 12:30-2 p.m. Agency training and brown bag lunch Lane County Developmental Disabilities Services Location: 4181 E Street, Springfield Contact: Sydney Shook at sydney.shook@arclane.org or at (541) 337-6174 6-8 p.m. Parent training
THURSDAY, APRIL 25 PHOTO BY ERICA ANN PHOTOGRAPHY
Justine Haigh (pictured) and Dennis Debbaudt have teamed up to film and produce a video for teachers in the K-12 sector about the dangers of autism and wandering. Motivated by an experience with her son, Daniel (pictured), the video is expected to be available for the 2013/2014 school year.
Families for Community Autism Summit Location: Kids Unlimited , 821 North Riverside, Medford Contact: Emilie Sampson, (541) 621-1910 9:30 a.m.-Noon First responder and judicial system training 1:00-4:00 p.m. Parents and service providers
SAFETY RESOURCES In Case of Emergency (I.C.E.) Bands www.icebandsnorthwest.com (503) 524-2552 My Precious Kid www.mypreciouskid.com (503) 693-2832 Project Lifesaver www.projectlifesaver.org (various Sherriffâ&#x20AC;&#x2122;s offices throughout the region)
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FRIDAY, APRIL 26 Marion County Developmental Disabilities Services Location: 5155 Silverton Rd NE, Salem Contact: Dana VanHaverbeke, (503) 361-2766 9:30 a.m.-Noon First responder training 1:30-4:00 p.m. First responder training Location: 2421 Lancaster Dr. NE, Salem 6:30-8:00 p.m. Training for parents and service providers
HEALTH & WELLNESS
OUR TURN ONE FAMILY’S STORY OF LIFE WITH AUTISM
by Rob Downer How did our family get here and what exciting adventures will come our way in the days, months and years to come? This is really the best way we could describe our life with autism. My name is Rob. My wife, Jen and I are doing our best to raise our daughter Zoë (Neurotypical) age 9, and son Sam (with Autism Spectrum Disorder) age 7. These days, Jen and I think of Autism as the most challenging and amazing thing that could have happened to us. We
We knew from the first time the word “Autism” was used that we had the opportunity to help Sam live a good life by giving him the chance to be himself.
have often described our son as having “Awesometism.” It hasn’t always been this positive. There is a lot of hard work and dedication that has gotten us where we are today. A look back over the past eight years will show a portrait that is filled with a multitude of things: emotions, frustrations, activism, defeats, fears, anxiety, heartbreak, victories, joy and excitement. Jen was the first to know that something was different for Sam when he was two or three months old. His disposition was sweet and happy but he didn’t engage his muscles, or push with his legs when we stood him on our legs, and he didn’t hold up his head. At his 4-month well-baby visit her concerns were met with: “some babies just don’t use their muscles that much.” At the 6-month visit, she brought up her concerns again and at that point all hell broke loose. Extensive tests were ordered and we were advised to start early intervention. All of the tests came back normal and there was nothing medically wrong with our son.
We moved to Portland, Ore. in June of 2006 and shortly thereafter, Sam was having occupational, speech and physical therapy from three professionals on a regular basis at Therapy Solutions for Kids. At age four, he received his official diagnosis of ASD. At age 5 he began to say his first words (though these words were not easy to understand). At age 7, he was putting words together to form very short sentences (many of these words are still difficult to understand), and today he is singing songs and just beginning to truly express himself verbally. It takes some focus to understand much of what he says, but he is voicing his opinions, his needs, and even playing imaginatively. So if you told us that Sam would be doing these things four or five years ago, we would’ve been shocked. Autism has helped us to look at life from a different perspective. I often use this example: If (as a 7-year-old boy) I tried to make a mural on the dinner table using the food from my plate of spaghetti, the results would have been tragic. In Sam’s world, both his parents watch, ask him about it, then we tell him how the art makes us feel. When it’s done, we’ll likely photograph it Continued on page 37 WWW.SPECTRUMSMAGA ZINE.COM
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HEALTH & WELLNESS
THE SPECIAL NEEDS
by Courtney Freitag “Remember, we are JUST looking at the tools. Nothing else,” my son reminded me as we passed through the doors of the dental clinic. His sweaty hand clutched mine, motivated only by the promise of a trip to the rock and gem store after the exam. While it’s not uncommon for patients to feel anxious at the dentist, people on the autism spectrum often have heightened sensory sensitivities and paralyzing fear of unfamiliar settings. More dental clinics in the Portland area are developing inclusive flexible programs to serve special needs patients and promote good oral hygiene as early as possible. “Perhaps as important as our formal training and board certification in this specialty is our comfort and desire to provide for special needs children and young adults,” said Dr. David Cavano, owner of Pediatric Dental Group in southwest Portland. “We practice a family-centered approach to care and communicate with families and the child’s physicians and therapists to create individualized opportunities for children to succeed in our office.” The 40-year-old clinic has a long and ongoing commitment to serving the special needs community and recognizes the unique and complex medical conditions and sensory sensitivities that some patients may have. Cavano, the father of a special needs teen, said parents could create a plan with the clinic to prepare for a patient’s first visit and gain an understanding of expectations. “Preparation and ongoing communication greatly help in easing parental concerns and help to assure a comfortable dental visit,” Cavano added. “Pre-teaching at home using social stories, reviewing a visual schedule or sequence (many of us are visual learners) as well as desensitization techniques are all tools for preparation for visits to health care providers.” Dr. Michelle Stafford, owner and pediatric dentist at World of Smiles Pediatric Dentistry, works with her team to provide a positive experience for all children. The clinic developed its
Our website lists local dentists that have a special needs program or can create accommodations for patients with ASD: spectrumsmagazine.com /community-resources/dentistry/
Acclimation Program, a comprehensive program that can be adapted to an individual child’s needs. The staggered visits include a program screening, play time visit, a “comfy” room with stuff animals that eases the child into the dental office and finally, the “big kid” visit. With more than 100 autistic patients, the phased approach supports their mental, physical, and emotional needs as they bring new knowledge of a dental office into their everyday routine, Stafford added. Dr. Monisha “Mo” Gagneja, pediatric dentist at Providence’s Specialty Pediatric Dental Clinic, echoes the “dental home” approach to providing a collaborative dental care plan for the patient with autism. “We approach them first as a person,” she said. “We address their dental needs second.” Identifying a patient’s interests, explaining the tools and instruments, knowing triggers and respecting limits helps gain trust and confidence. Explaining each instrument, allowing patients to hold and touch the tools and explaining sounds and smells shows respect and gives some ownership over the experience. With close to 85 percent of the Providence clinic having an autism diagnosis, the staff strives to focus on the daily goal of serving the child first. Seeing the need for a unique dental clinic that recognizes the varying necessities of patients with special needs, Providence Health formed its Specialty Pediatric Dental Clinic with the goal of being a dental home for children with special health needs and their siblings from birth to 25 years old. Providence Health models its Specialty Pediatric Dental clinic around gaining children’s trust with experienced professionals well-versed in working with children that experience a variety of special needs. Whether it is using heavy blankets, eliminating flavors in the dental cleansers, providing a dimly lit environment or using social stories, flexibility and commitment are the common thread when treating their patients with ASD. “We modify ourselves according to the child,” Gagneja said. “Not the other way around.” Providence’s dental staff regularly attends behavior management training and consistently follows up and communicates with the families to monitor care and follow up. And because each patient with ASD has different needs, the group understands the importance of a phased approach to care and treatment. Continued on next page
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Free weekly group music therapy sessions for children on the autism spectrum, their family and friends. Visit our website for upcoming sessions.
Dental, Continued from page 28
Dr. Stafford takes a similar approach. “Each stage follows a child’s lead, works on transitions, demonstrates techniques and instruments, and allows for exploration of the office’s designated rooms,” Stafford said. “Prior to the first visit, we have an interactive coloring book that we designed to give children a picture story on what to expect during their dental visit.” These local efforts mirror national trends of accommodations and specialized programs for patients with autism in hopes to improve and build the importance of good oral hygiene. The Healthy Smiles for Autism, a program of the National Museum of Dentistry, created a useful 36-page guide on preparing children for a dental visit, home oral hygiene and much more. The guide contains visual aids, step-by-step guides, tips for behavior and sensory modifications, using social stories and more. To download the guide, visit www. healthysmilesforautism.org. Special diets, medication, poor motor skills or sensory issues can inhibit proper dental care in children on the spectrum, according to the Healthy Smiles website. Paired with a heightened sense of fear or anxiety, many patients delay dental visits adding to the longterm risk of cavities, gingivitis and periodontal disease. With some education, encouragement and knowledge of the programs available, patients can stay on top of their dental care. Beginning at home Professionals recommend that children learn best with parents or caregivers as a model. Demonstrate good dental habits by flossing
at the same time as brushing; choosing toothpaste without artificial colors and flavors; assist the child with brushing and flossing using explanations that fit their understanding. As with many hurdles, involving the child in the process can be helpful to give them ownership of their hygiene. Healthy Smiles indicates that families can make it fun for kids by letting them pick out a favorite toothbrush, decorate with stickers or non-toxic paint, try a few toothpaste flavors and pick a new cup to use only in the bathroom. Buy a special new “toothbrush towel” used only to wipe mouths after brushing—the more involvement, the more a child will hopefully gain excitement and understand the importance of oral hygiene. Over time, allow your child to take over the steps to brushing and flossing and always reiterate your availability to help with any problems or fears. Finding the right fit Gagneja reiterated that, as with any professional involved in the child’s care, a trusting relationship is being formed. With many autistic children, fear of the unknown and unpredictability leads to panic attacks, emotional breakdowns and stress for the entire family. It’s important to complete the circle of care by adding the best dental provider to other treatment and therapists. With years of experience working with children with special needs and their families, Gagneja understands the importance of a strong dentist-family relationship. “We can be a part of their family—of their team.”
People with autism often show heightened interest and response to music. This makes it an excellent therapeutic tool. We offer:
• Neurologic music therapists trained in how the brain responds to music • Techniques to enhance the music therapy sessions • 1:1 sessions, weekly and monthly group therapy
The inherent structure and sensory input of music promotes positive interactions, response and role expectations, and organization.
Angie Kopshy, MM, MT-BC Neurologic Music Therapist (971) 221-7144 musictherapyportland@gmail.com musictherapyportland.com
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OUR PREMIERE ISSUE INCLUDES A COMPREHENSIVE PRINT RESOURCE DIRECTORY OF THERAPY OPTIONS BEGINNING ON PAGE 33. OUR ONLINE DIRECTORY FEATURES MANY ADDITIONAL CATEGORIES: spectrumsmagazine.com
Which therapy OPTION IS RIGHT FOR ME?
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THERAPY On the heels of receiving an autism diagnosis, many people find themselves submerged in the sea of online articles, links and acronyms. A variety of therapy options and wellness choices can work to improve autism symptoms. Deciding on which option is best for you or your family is personal and should be discussed with your health care provider or therapist before beginning any course of treatment. Applied Behavior Analysis (ABA) A style of teaching using series of trials to shape desired behavior or response. Skills are broken into small components and taught to child through a system of reinforcement. Acupuncture There are few clinical studies on acupuncture as a treatment for autism. However, acupuncture administered through the scalp has shown an improvement in autistic syndromes without any side-effects, especially in improving language development, daily-life self-care, and social communications. Art Therapy Art therapists have a master’s level degree in art therapy or a related field. They are trained to use the creative process and a wide variety of art materials to help clients understand and better cope with emotional issues, thoughts and feelings. Aqua Therapy Aqua therapy uses water and specifically designed activities by qualified personnel to aid in the restoration, extension, maintenance of quality functions for persons. The water can aid in sensory sensitivities, physical development, social skills and cognitive improvement. Audiology Audiologists identify, diagnose and treat children and adults with autism who are experiencing hearing loss, hypersensitive hearing, auditory processing disorders or related listening problems. As part of a multidisciplinary team—an audiologistcoordinating with a speech-language pathologist and, if needed, an occupational therapist—will use a battery of auditory processing tests, programs and techniques to ease a
client’s difficulty regulating attention, concentration, memory, information processing, reading or learning difficulties. Biomedical Treatment Biofeedback is a training technique in which people are taught to improve their health and performance by using signals from their own bodies. Neurofeedback is a non-invasive means of exercising, strengthening and regulating the central nervous system. Craniosacral Therapy Craniosacral therapy is an alternative medicine therapy used by osteopaths, massage therapists, naturopaths, chiropractors and some occupational therapists. It has been shown to help the autistic individual find greater ease, both within themselves and in the world around them, by decreasing structural stress and strain on their central nervous system. Dance/Movement Therapy Dance therapy, or dance movement therapy, is the psychotherapeutic use of movement and dance for emotional, cognitive, social, behavioral, and physical conditions. Developmental Individual-Difference Relationship (DIR/FloorTime) Developmental Individual-Difference Relationship (DIR or “floortime”) is a method of identifying strengths and weaknesses in a child. A form of play therapy, FloorTime is a developmental intervention of meeting a child at his or her current developmental level, and challenging them to move up the hierarchy of milestones outlined in the DIR Model. Continued on next page WWW.SPECTRUMSMAGA ZINE.COM
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Gluten-free/Casein-free Diets Also called “GFCF” diets, theories are that children with autism may have an allergy or high sensitivity to foods containing gluten and casein. It is believed that children with autism process peptides and proteins in foods containing gluten and casein differently than other people do, treating the proteins as a false opiate. Massage Therapy The touch of massage and release of relaxation hormones has proven to be beneficial to those on the spectrum. Increased body awareness, lowered fatigue and anxiety, lower blood pressure and heart rate, improve energy levels, sleep, creative ability, and the thinking process has been found when using massage therapy as part of a treatment plan. Music Therapy Music therapy is a well-established professional health discipline that uses music as the therapeutic stimulus to achieve non-musical treatment goals. Encourages the connection between singing and speech, rhythm and motor skills, memory for song and memory for academic material, and overall ability of preferred music to enhance mood, attention, and behavior to optimize the student’s ability to learn and interact. Occupational Therapy Occupational Therapy (OT) is a skilled treatment that helps individuals achieve independence in various facets of their lives. OTs are experts in social, emotional, and physiological effects of illness and injury. This knowledge helps them promote skills for independent living in people with autism and other developmental disorders. Qigong Massage The ancient Chinese practice of qigong is a practice of aligning breath, movement, and awareness for exercise, healing, and meditation. Studies have shown a reduction in autistic symptoms when a qigong massage therapy program is implemented. The Qigong Sensory Training Institute right here in Oregon has developed a training guide for families to administer the technique at home.
Sensory Integration Therapy Often integrated into Occupational Therapy, Sensory Integration therapy works on helping a child with ASD to combine their senses to acclimate to the environment. Often in a “sensory gym,” a therapist specifically designs a program to stimulate and challenge a child’s senses and move throughout the room. Treatment sessions can include swinging in a hammock, sensory bins of beans, a ball pit, or an activity using shaving cream. SonRise Program Son-Rise is a home-based program for children with autism spectrum disorders and other developmental disabilities, which was developed by Barry Neil Kaufman and Samahria Lyte Kaufman for their son with autism, who is claimed to have fully recovered from his condition. The program is a parent-directed, relationshipbased play therapy. Speech-Language Pathology Speech-language pathologists play a critical role in screening, diagnosing, and enhancing the social communication development and quality of life of children, adolescents, and adults with autism spectrum disorders. Many find improvement of symptoms with SLP due to the pervasive nature of the social communication impairment. Physical Therapy Children on the Autism Spectrum can have developmental delays in gross motor skills, resulting in poor muscle tone. A physical therapist works with a child to rebuild strength, mobility and flexibility. Yoga Yoga has been shown to be an effective therapy option for children with autism spectrum disorders by increasing flexibility, gross motor, establish a connection with their bodies, enhance coping mechanisms and increase social opportunities.
Using music as a therapeutic stimulus can achieve non-musical treatment goals like rhythm, motor skills, memory and more.
Spectrums Magazine does not represent, endorse, sponsor or guarantee any of the treatment or therapy options listed. The list is presented as a community service and readers are encouraged to investigate options with a licensed therapist, treatment professional or provider for more information and options.
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THE PORTLAND/SW WASHINGTON METRO AREA IS A HOST TO EXPERT PROVIDERS, THERAPISTS AND PROFESSIONALS.
www.spectrumsmagazine.com
THERAPY
The vision of Spectrums Magazine began with a hope to create a tangible guide of resources and information—all in one place. Our premiere issue features the most up-to-date contact information for therapy options. In addition, our website is a hub for an up-to-date resource guide of information and resources on everything from health and wellness, education, tutoring, brokerage and insurance providers and much more. While we can’t endorse, promote or guarantee the services or outcome of any one provider or type of therapy, this directory was compiled with community input. And we want yours: if you would like to be added to our online directory, please email info@spectrumsmagazine.com.
DIRECTORY of THERAPY OPTIONS APPLIED BEHAVIOR ANALYSIS ABA Learning Solutions 15915 SW Stratford Loop B, Tigard (503) 381-8440 • www.abaportland.com abalearningsolutions@hotmail.com AKA Consulting LLC (971) 258-5555 www.akaconsultingportland.com alice@akaconsultingportland.com Advanced Behavioral Concepts (971) 344-9440 www.advbehavioralconcepts.com sschaefer@advbehavioralconcepts.com Building Bridges (see ad on page 13) 112 SW Pennoyer Street, Portland (503) 235-3122 • www.bridgespdx.com beth@bridgespdx.com Play Connections Early Learners Program 5459 NW 176th Ct, Portland (503) 737-4693 • www.playconnections.com mshaw@playconnections.com Portland Autism Center 10300 SW Greenburg Road #240, Portland (503) 206-6285 www.portlandautismcenter.com Stacey Hedges, M.A. (503) 880-4401 • www.consultautism.net Stacey@consultautism.net ACUPUNCTURE Acupuncture Northwest 2256 N Albina Avenue, Suite 190, Portland (503) 493-9389 acupuncturenorthwest@gmail.com East-West Acupuncture 3703 SE Cesar E Chavez Blvd, Portland (503) 231-4101 www.southeastportlandacupuncture.com steve@southeastportlandacupuncture.com Flourish Natural Medicine 9999 SW Wilshire Street, Suite 212, Portland (503) 477-7915 • www.FlourishNM.com DoctorMathers@FlourishNM.com
Flying Crane Acupuncture 7875 SW Alden Street, Portland (503) 608-8155 marilynwalkey@flyingcraneacupuncture. com Natural Healing Center 9970 SW Beaverton Hillsdale Hwy, Suite 100 Beaverton • (503) 641-3444 Nature Cures Clinic 1020 SW Taylor Street, Suite 330, Portland (503) 287-4970 • info@naturecuresclinic.com Northwest Natural Medicine 2305 SE Washington Street #104, Milwaukie (503) 786-2181 GetWell@nwnaturalmedicine.com Oregon City Acupuncture (see ad on page 23) 619 Madison, Suite 110, Oregon City (503) 653-1468 • OCACU@OCACU.net Portland Wellness Center 6274 SW Capitol Hwy, Portland (503) 245-6516 Red Pony Medicine (503) 724-2790 christina@redponymedicine.com 3 locations: 10424 SE Cherry Blossom Drive, Portland 1417 SE 107th Avenue, Portland 8709 SE Causey Avenue, Portland RiverWest Acupuncture (see ad on page 5) 3314 SW Kelly Avenue, Portland (503) 246-0103 www.riverwestacupuncture.com
Creative Therapy Solutions 5232 N Interstate Avenue, Portland (503) 922-1345 info.creativetherapy@gmail.com Dogs for the Deaf (Autism Assistance Dogs) 1-800-990-3647 • www.dogsforthedeaf.org info@dogsforthedeaf.org AQUA THERAPY Innovative Services Northwest (see ad on page 23) 9414 NE Fourth Plain Road, Vancouver (360) 892-5142 www.innovativeservicesnw.org mhoffman@innovativeservicesnw.org Providence Macadam Therapy Pool 5757 SW Macadam Avenue, Portland (503) 215-2233 kathleen.ziegler-ramsay@providence.org ART THERAPY Annette Shore, MA, ATR-BC, NCC 1942 NW Kearney Street, Suite 31, Portland (503) 222-1807 • annetteshore@comcast.net Cheri Epstein 2929 SW Multnomah Blvd, #201, Portland (971) 205-2708 Counseling & Art Therapy 525 1st Street Suite 110, Lake Oswego (503) 635-8122
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Singing Bird 1235 SE Division Street, Suite 201, Portland (971) 344-3393 andrea@singingbirdpdx.com ANIMAL-ASSISTED THERAPY Autism Service Dogs of America www.autismservicedogsofamerica.org info@autismservicedogsofamerica.org
Pet therapy and the animal-human connection has demonstrated emotional and physical benefits in those with autism spectrum disorders. WWW.SPECTRUMSMAGA ZINE.COM
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Erica Fayrie 2931 NE Broadway, Portland (503) 953-0234 • www.ericafayrie.com contact@ericafayrie.com Erika Johnson 2901 SE Clinton Street, Portland (503) 236-7884 • Erika.k.johnson@gmail.com Face in the Mirror Counseling 599 Weidman Court, Lake Oswego (503) 201-0337 • www.fitmc.org info@fitmc.org
Body Elements Chiropractic Clinic 5231 NE Martin Luther King Jr Blvd, Portland (503) 477-6322 www.bodyelementspdx.com info@bodyelementspdx.com ChiroPlus Wellness Center 109 SE 101st Avenue, Vancouver (360) 256-6748 dr.wellnesscenter101@gmail.com Dr. Chris Chlebowski 923 NE Couch Street, Portland (503) 236-9609 • www.drchrischlebowski info@drchrischlebowski.com
AUDIOLOGY Center for Communication and Learning Skills (see ad on page 36) 14674 Rainbow Drive, Lake Oswego (503) 699-9022 www.commlearningskills.com Patty Ehlers 1010 Washington Street, #280, Vancouver (360) 699-6374 www.pattyehlers-speechtherapy.com BIOFEEDBACK Advanced Neurofeedback Clinic 2301 NW Thurman Street, Suite A, Portland (503) 243-7907 • kana@nurofeed.com Biofeedback & Behavioral Management 9450 SW Barnes Road, #255, Portland (503) 292-0707 Insights to Health 2929 SW Multnomah Blvd., #302, Portland (503) 501-5001 • info@insightstohealth.net Nantz Ruby 10175 SW Barbur Blvd, #109b, Portland (503) 245-9999 Northwest Neurofeedback 2455 NW Marshall Street, Suite 7B, Portland (503) 274-7733 • eegnora@earthlink.net Portland Neurofeedback 1306 NW Hoyt Street, Portland (503) 248-1182 CHIROPRACTIC Avista Chiropractic & Wellness 1201 SW 12th Avenue, Suite 600, Portland (503) 224-2425
Natural Healing Center 9970 SW Beaverton Hillsdale Hwy, Suite 100, Beaverton (503) 641-3444 Strasser Chiropractic 2100 NE Broadway, Suite 101, Portland (503) 287-2800 • www.drstrasser.com info@drstrasser.com DANCE/MOVEMENT THERAPY Disability Art and Culture Project (503) 238-0723 disabilityartculture@gmail.com Fluid Equilibrium 1812 NE 45th Avenue, Portland (503) 756-6170 Juliana Friedman 4110 SE Hawthorne Blvd, #723, Portland (503) 250-4373 JulianaFriedman@yahoo.com North Clackamas Parks and Recreation Department (Various inclusive classes. Check website.) www.ncprd.com 150 Beavercreek Road, Oregon City Shelli Vrabel, Recreation Coordinator (503) 742-4371 • svrabel@clackamas.us Polaris Dance Theater All Access Dance 1501 SW Taylor Street, Portland (503) 380-5472 • colleen@polarisdance.org Portland Parks and Recreation (Various inclusive classes. Check website.) 1120 SW Fifth Ave #1302, Portland (503) 823-PLAY Tualatin Hills Park & Recreation District (Various inclusive classes. Check website.) 15707 SW Walker Road, Beaverton (503) 645-6433 • www.thprd.org
DEVELOPMENTAL PEDIATRICIAN Children’s Developmental Health Institute (formerly the Artz Center) (see ad on page 15) 1675 SW Marlow Avenue, Portland (503) 802-5291 • marym@childrenspdx.com Dr. Peter Biasco OHSU CDRC 707 SW Gaines Avenue, Portland (503) 346-0644 Dr. Gregory Blaschke OHSU CDRC 707 SW Gaines Avenue, Portland (503) 346-0644 Dr. Sara Cuthill Kaiser Permanente 3550 N Interstate Avenue, Portland (503) 249-5526 Dr. John Liedel The Children’s Program 7707 SW Capitol Hwy, Portland info@childrensprogram.com Dr. Robin McCoy The Children’s Program 7707 SW Capitol Hwy, Portland info@childrensprogram.com Dr. Mary Lynne O’Brien Kaiser Permanente 3600 N Interstate Avenue, Portland (503) 249-5526 Dr. Michele Raddish Providence Neurodevelopmental Center for Children 830 NE 47th Avenue, Portland (503) 215-2533 RDI/FLOOR-TIME Autism Behavioral Consulting (see ad on page 23) 10000 NE 7th Avenue, Suite 110, Vancouver (360) 619-2462 • www.autismabc.org info@autismabc.org Advanced Pediatric Therapies 4444 SW Multnomah Blvd, Portland (503) 245-5639 • www. advancedpediatrictherapies.com Children’s Developmental Health Institute (see ad on page 15) (formerly the Artz Center) 1675 Southwest Marlow Avenue, Portland (503) 228-6479 • www.childrenspdx.com Continued on next page
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Art therapy can tap into an autistic’s creative process and aid in coping with emotional issues, thoughts and Feelings. Therapy options Continued from page 34
Music Therapy Services of Portland (see ad on page 29) (971) 221-7144 • www. musictherapyportland.com musictherapyportland@gmail.com Family Connections Northwest 2001 H Street, Vancouver (360) 993-0866 • leahreitzrdi@yahoo.com
Notable Connections Music Therapy (503) 961-3326 notableconnections@gmail.com
Pacific Northwest Pediatric Therapy 4305 SE Milwaukie Avenue, Portland (503) 232-3955 • pnpt1@comcast.net www.rosemarywhitepediatricservices.com
Self Express Music (971) 221-5428 www.selfexpressmusic.com emily@selfexpressmusic.com
EQUINE THERAPY
UpBeat Music Therapy 16200 SE 18th Way, Vancouver (360) 607-8187 www.upbeatmusictherapist.com info@upbeatmusictherapist.com
B.E.A.T. Riding Center 41919 NW Wilkesboro Road, Banks (503) 324-3071 • www.beatriding.org Forward Stride 18218 SW Horse Tale Drive, Beaverton (503) 590-2959 • www.forwardstride.org Healing Winds 12414 NE 212th Avenue, Brush Prairie (360) 254-5387 • gogoomba@aol.com Sycamore Lane Therapeutic Riding Center 13921 Clackamas River Drive, Oregon City (503) 593-7084 • www.sycamorelane.org IN-HOME SERVICES Autism Behavioral Consulting (See ad on page 23) 10000 NE 7th Avenue, Suite 110, Vancouver (360) 619-2462 • www.autismabc.org info@autismabc.org CDM Long-term Care Services 2409 Broadway Street, Vancouver (360) 896-9695 • www.cdmltc.org info@cdmltc.org Children’s Nursing Specialties 9900 SW Greenburg Road, #290, Portland 1-866-968-2401 • www.cnsnursing.org cnsi@cnsnursing.org MASSAGE THERAPY Healthful Healing Massage (503) 724-5771 HeathfulHealing@yahoo.com Red Bird Speech and Language (503) 583-2314 • www.redbirdspeech.com Paige@redbirdspeech.com MUSIC THERAPY Cresendo Music Therapy Services 20650 NE Halsey Street, Fairview (503) 887-9298 • Alexismt-bc@hotmail.com
OCCUPATIONAL THERAPY Advanced Pediatric Therapies 4444 SW Multnomah Blvd., Portland (503) 245-5639 • www.aptot.com sharron@aptot.com Celebrate the Senses 1509 SW Sunset Blvd. Suite 1K, Portland (503) 810-0275 www.celebratethesenses.com Children’s Developmental Health Institute (formerly the Artz Center) (see ad on page 15) 1675 Southwest Marlow Avenue, Portland (503) 228-6479 • www.childrenspdx.com Creative Therapy Connections 5232 N Interstate Avenue, Portland (503) 922-1345 • www.ctcportland.com Early Choice Pediatric Therapy 106 E 15th Street, Vancouver (360) 750-5850 • ecpt4me@gmail.com Innovative Services Northwest (see ad on page 15) 9414 NE Fourth Plain Road, Vancouver (360)892-5142 www.innovativeservicesnw.org Legacy Meridian Park Medical Center Pediatric Rehabilitation 19250 SW 65th Ave, #125, Tualatin (503) 692-1670 Neurotherapeutic Pediatric Therapies 610 High Street, Oregon City (503) 657-8903 • www.nt4kids.org OHSU CDRC 707 SW Gaines Street, Portland (503) 494-8095 www.ohsu.edu/xd/health/childdevelopment-and-rehabilitation-center/ index.cfm
Pediatric Sensory Therapy 6635 N Baltimore Avenue, #229, Portland (503) 477-9527 • www.pdxpediatrics.com lisa@pdxpediatrics.com Pediatric Therapy Services 532 N Main Avenue, Gresham (503) 666-1333 • www.oregonpts.com Play 2 Grow 18959 SW 84th Avenue, Tualatin (503) 563-5280 • carol@weplay2grow.com Randall Children’s Hospital at Legacy Emanuel Pediatric Rehabilitation 2801 N Gantenbein, Suite 2225, Portland (503) 413-4505 Pacific Northwest Pediatric Therapy 4305 SE Milwaukie Avenue, Portland (503) 232-3955 • pnpt1@comcast.net www.rosemarywhitepediatricservices.com Sensory Kids (see ad on page 38) 1425 N Killingsworth Street, Portland (503) 575-9402 • www.sensorykidsot.com info@sensorykidsot.com Therapy Solutions for Kids 5200 SW Macadam Avenue, #100, Portland (503) 224-1998 www.therapysolutionsforkids.com info@therapysolutionsforkids.com Thrive Therapeutics 2135 N Humboldt Street, Portland (503) 753-6943 thrivetherapeutics@gmail.com Providence Neurodevelopmental Center for Children (see ad on page 39) East Portland Providence Child Center 830 NE 47th Avenue, Portland (503) 215-2233 Providence Neurodevelopmental Center for Children (see ad on page 39) West Portland Providence St. Vincent Medical Center Gerry Frank Center for Children’s Care 9155 SW Barnes Road, Portland (503) 216-2339 Westside Pediatric Therapy 12525 SW 3rd Street, Beaverton (503) 641-2767 • www.therapykidz.com info@therapykidz.com REHABILITATION Randall Children’s Hospital at Legacy Emanuel Pediatric Rehabilitation 2801 N Gantenbein, Suite 2225, Portland (503) 413-4505
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Yoga used as a therapy option has been shown to improve flexibility, gross motor and enhance coping mechanisms.
Therapy options, Continued from page 35
Legacy Meridian Park Medical Center Pediatric Rehabilitation 19250 SW 65th Avenue Medical Plaza 1, Suite 125, Tigard (503) 692-1670 • www.legacyhealth.org SPEECH-LANGUAGE PATHOLOGY Barbara Erskine Speech Therapy 8513 NE Hazel Dell Ave, Suite 201, Vancouver (360) 573-7313 and 7000 SW Hampton Street, Suite 127, Tigard (503) 675-7711 • www.erskinetherapy.com info@erskinetherapy.com Buckendorf & Associates 10300 SW Greenburg Road, #410, Portland (503) 517-8555 www.buckendorfassociates.com ba.info@buckendorfassociates.com Center for Communication & Learning Skills (see ad on page 36) 371 6th Street, Lake Oswego (503) 699-9022 www.commlearningskills.com Children’s Developmental Health Institute (formerly the Artz Center) (see ad on page 15) 1675 Southwest Marlow Avenue, Portland (503) 228-6479 • www.childrenspdx.com Communicating Together 3014 NE Ainsworth Street, Portland (503) 224-2820 www.communicatingtogether.com kerryr@communicatingtogether.com
Creative Connections Counseling Services (503) 309-8671 www.debra-creativeconnections.com debra@debra-creativeconnections.com
NW Speech Therapy Portland: (503) 512-9355 Vancouver/Camas: (360) 747-7144 info@nwspeechtherapy.com
D’Onofrio & Associates 1827 NE 44th Avenue, Suite 20, Portland (503) 808-9919
Play to Grow Developmental Therapy Services 18959 SW 84th Avenue, Tualatin (503) 563-5280 • www.weplay2grow.com carol@weplay2grow.com
Dvortcsak Speech and Language Service 818 SW 3rd Avenue, #68, Portland (503) 887-1130 • www.donofrioslp.com info@dslsi.com Early Choice Pediatric Therapy 106 E 15th Street, Vancouver (360) 750-5850 • ecpt4me@gmail.com Gresham Speech Therapy 4336 SE Viewpoint Drive, Troutdale (503) 312-9362 • gst-d2l.com/gst Heart to Heart Speech Therapy 201 N Meridian Street, Suite B, Newberg (503) 901-5652 Jamie.Heart2heart@gmail.com Kelli Murdock Eickelberg, SLP 7701 SW Cirrus Dr, 32-D, Beaverton (503) 520-5030 KelliEickelbergSLP@hotmail.com Legacy Meridian Park Medical Center Pediatric Rehabilitation 19250 SW 65th Avenue Medical Plaza 1, Suite 125, Tigard (503) 692-1670 • www.legacyhealth.org
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Captain’s Log; SoundSmart; Attention, Memory and Processing Speed (AMPS); Core Learning Skills, Listening Ears Reading and NeuroNet Early Learning, Integrated Rhythms, and Tools for Learning Programs, SAMONAS and The Listening Program. As clinical research provides new treatment tools, we continually add the best to our programs. As a speech-language pathologist and audiologist, Dr. Belk can provide both diagnosis and treatment of auditory processing disorders.
Dr. Judith B. Belk, Ph.D. CCC-Speech-Language Pathologist/CCC-Audiologist Center for Communication & Learning Skills • 371 Sixth Street • Lake Oswego, OR 97034 Phone: (503) 699-9022 Email: judybelk@gmail.com 36
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Providence Neurodevelopmental Center for Children (see ad on page 39) (East Portland) Providence Child Center 830 NE 47th Avenue, Portland (503) 215-2233 Providence Neurodevelopmental Center for Children (see ad on page 39) (West Portland) Providence St. Vincent Medical Center Gerry Frank Center for Children’s Care 9155 SW Barnes Road, Portland (503) 216-2339 Providence Neurodevelopmental Center for Children (see ad on page 39) (Newberg) Providence Newberg Medical Plaza 310 Villa Road, Suite 101, Newberg (503) 537-3546 Providence Rehabilitation Services (Gresham) 270 NW Burnside Street, Gresham (503) 215-2233 Randall Children’s Hospital at Legacy Emanuel Pediatric Rehabilitation 2801 N Gantenbein, Suite 2225, Portland (503) 413-4505 Red Bird Speech and Language (503) 583-2314 • Paige@redbirdspeech.com Scottish Rite Center Kid Talk 5125 SW Macadam Avenue, #200, Portland (503) 226-1048 • ehaag@scottishritekids.org Small Talk Speech Therapy Angela Arterberry, MS, CCC-SLP (503) 358-8182 • MissASpeech@gmail.com Speech Language Pathology LLC 6035 SW Florida Street, Portland (971) 255-1961 Continued on next page
Our Turn, Continued from page 27
Jen and I decided a long time ago that we were going to do everything we possibly could to support Sam’s uniqueness rather than suppress it. We knew from the first time the word “autism” was used that we had the opportunity to help Sam live a good life by giving him the opportunity to be himself. We made a conscious decision to celebrate our uniqueness! We stopped caring about what other people might think when Sam hoots or sings in a store, at a park, or out on a walk. Sam happily flaps his arms or claps his hands and through him we see the full spectrum of life.
We made a conscious decision to celebrate our uniqueness! We stopped caring about what other people might think when Sam hoots or sings in a store, at a park, or out on a walk.
With all this positivity comes a dose of reality. We decided early on that childcare was not an option for us because of Sam’s special needs. Jen and I both decided to leave conventional jobs behind, and have found entrepreneurialism to be a flexible way to support our family and be available to our children. Another continual struggle comes in the challenges associated with balancing our energy and attention as we also raise our amazing daughter. The biggest challenge? Living with autism is (at times) financially challenging.
THERAPY
(and share it with loads of people), and then clean up.
What really adds to the sweetness in our life is our love, our quirkiness, our sessions with a fantastic Family Therapist (who has experience in helping families with special needs), and the amazing love and support from the people in our lives who have a great deal of patience and understanding. You can follow the Downer family blog at www.upsidedowner.org.
Therapy options, Continued from page 36
SOCIAL SKILLS & GUIDED PLAY Aspiring Youth 68 SW Miles Street, Portland 888-458-0481• info@aspiringyouth.net Autism Behavioral Consulting (see ad on page 23) 10000 NE 7th Avenue, Suite 110, Vancouver (360) 619-2462 • info@autismabc.org Brooke Psychologists, LLC (Social skills groups for ages 11-adult) 516 SE Morrison Street, Suite 1010, Portland (503) 235-8696 x2 drmbrooke@brookepsychologists.com Building Bridges (see ad on page 13) 0112 SW Pennoyer Street, Portland (503) 235-3122 • beth@bridgespdx.com Pathways for Potential 10151 SW Barbur Blvd, Suite 108, Portland (503) 201-7750 www.pathwaysforpotential.com
PlaySpace (see ad on page 23) 3014 NE Ainsworth, Portland (503) 224-2820 • info@pdxplayspace.com Playful Intervention 7824 SE 13th Avenue, Portland (503) 735-5870 info@playfulintervention.com Small Talk Speech Therapy Got Friendship? Social skills group for girls and boys (503) 358-8182 • MissASpeech@gmail.com Social Kraft (503) 381-9344 • socialkraft@me.com YOGA Move Yoga info@moveyogastudio.com Yoga For All (503) 998-6494 jennie@yogaforallpdx.com
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Medical vs. Educational, Continued from page 22
Therapy for kids with individual differences and sensory needs. “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.” —Parent and client at Sensory Kids Sensory Integration • DIR/Floortime • Cognitive-behavioral techniques Occupational Therapy • Integrated Listening Systems • Social groups Yoga Calm® Classes • Caregiver support group • SOS Feeding Counseling • Dance/Movement Therapy 1425 N Killingsworth Street, Portland www.sensorykidsot.com • (503) 575-9402
• Medical history of the mother’s pregnancy • Review of developmental milestones • Eating and sleeping habits • Coordination • Stomach and bowel functioning • Sensory challenges • Allergies • Medical illnesses, including ear infections, seizures • Any family history of developmental disorders • Any family history of genetic and metabolic disorders • Parents’ and child’s exposure to environmental toxins • A thorough physical exam • Routine lab tests
The results of those screenings may lead some to undergo subsequent, more targeted evaluations. In some children, a diagnosis of autism may be quite obvious, del Castillo adds. “On the other hand, diagnosing autism may be quite challenging if the child has other behavioral symptoms or coexisting disorders. Ideally a team of specialists with expertise in autism will work together to make the definitive diagnosis.” School personnel indicate in their IEP documentation that they are not ascribing a medical diagnosis to a student, del Castillo added. Professionals are also aware that characteristics taken into account when making medical diagnoses may not always impact function in the school setting. “From a medical perspective, the medical diagnosis of autism sometimes suggests other studies that may reveal other associated conditions such as a genetic abnormality that can lead to even better medical management of the child,” Alderman said. “With the medical diagnosis of autism, the parents can be better informed of the increased risk to future and present children in the family as well.” Overall, there are more similarities than differences in making a medical diagnosis of autism and in determining educational eligibility, del Castillo concluded. “The most important factor in both processes is the goal of maximizing each child’s potential.” American Psychiatric Association. DSM-5 development. 26 January 2011. Web. Accessed 1 July 2012. < http://www.dsm5.org/proposedrevisions >. Johnson CP, Myers SM and the Council on Children with Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007; 120 (5): 1183-1215. Levy SE, Mandell DS, Schultz RT. Autism. Lancet. 2009; 374 (9701): 1627-1638. Oregon Administrative Rules. Autism Spectrum Disorder Eligibility Criteria. OAR 581-015-2130. Oregon Department of Education. Autism spectrum disorder: evaluation, eligibility and goal development (birth-21) technical assistance paper. Revised 2010 March.
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Coordinated care for children with autism Providence Neurodevelopmental Center for Children offers a full range of autism services, including: ■ Social-skills training and day camps ■ Team assessment and case management with a developmental pediatrician and pediatric psychologist ■ Nutrition services and feeding clinics ■ Parent-training program and co-therapies For information or an appointment, please call one of our clinics: Providence Child Center 503-215-2233 Providence St. Vincent Medical Center 503-216-2339 Providence Newberg Rehab and Pediatric Services 503-537-3546 www.ProvidenceOregon.org/pncc
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Dental care for families of children with special needs Make a trip to the dentist more smile-worthy. At Providence Specialty Pediatric Dental Clinic, children and young adults receive excellent dental care in a safe, fun environment. Our dentists and staff welcome patients ages 1 to 21 with behavioral, developmental and medical needs, and their siblings too. Weâ&#x20AC;&#x2122;re changing the world of special-needs pediatric dentistry, one smile at a time! Our clinic is conveniently located in Providence Child Center at 830 NE 47th Ave., Portland, Ore. For more information, call 503-215-1056 or visit www.ProvidenceOregon.org/pediatricdental.
Providence Child Center offers families of children with special needs comprehensive services through Swindells Resource Center, Providence Neurodevelopmental Center for Children and the Center for Medically Fragile Children.