Autism Now Spring 2010 volume 23, number 2

Opening Doors Gala Sponsors AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org BOARD OF DIRECTORS AUTISM SOCIETY OF EDMONTON AREA AUTISM SOCIETY OF EDMONTON AREA EXECUTIVE #101, 11720 Kingsway Avenue Edmonton, AB T5G 0X5 PRESIDENT Ryan Guenter 780-453-3971 / 780-447-4948 VICE PRESIDENT Arif Khan email: [email protected] TREASURER Jackie Ryan website: www.autismedmonton.org SECRETARY Jean Ashmore DIRECTORS PLEASE PHONE THE SOCIETY FOR AD PLACEMENT AND RATES Karen Bain Holly Brown Marcy Henschel Mark Lynch Layout by Backstreet Communications Shane Lynch David Nicholas Printed by McCallum Printing Group Inc. Terri Robson Alan Wagner PM# 40020698

Articles, opinions and events in this publication do not necessarily imply the endorsement of the Autism Society of Edmonton Area and are printed for information only. The editors of Autism Now are Deborah Barrett and Roman Sokolowski.

The Autism Society of Edmonton Area is a non-profit organization founded in 1971 by a concerned group of parents and professionals. The Autism Society of Edmonton Area helps families and communities embrace and support people on the autism spectrum throughout their lives.

Spring Fever

2 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org President’s Message Ryan Guenter ASEA continues to work on ways to support individuals and families affected by autism throughout their lives. On a Besides the regular executive and board recent Saturday afternoon, the entire board and several of our meetings for the Autism Society, it is fine staff had a visioning session to plan out what our priorities always nice to get out and do other types of as an organization are going forward. While it is a somewhat volunteering for ASEA. For example, last year daunting task to take on, it also provides a framework for what ASEA was lucky enough to work with the needs to be accomplished. As we looked back on the notes from Oilers Community Foundation to sell 50/50 our 2008 session, we realized that many of our goals had already tickets at an Oilers v. Atlanta Thrashers game in April. For that come to fruition – but there’s still plenty of work to be done in event we had to gather 65 volunteers, who graciously gave up an the coming year! evening to sell tickets to the Rexall faithful. For those who are unaware, my wife Heather and I had our first This January, I worked my second casino for ASEA, and it child on February 13th – a beautiful baby girl named Danika. turned out to be another successful night for our group. By far That said, it is with sadness that I have to announce this will be my favourite part of volunteering is meeting different people my last message to the Autism Now readers as President. Before who genuinely just want to help out. At the casino I was able to I accepted the request to become President of ASEA, I made a sit and talk with a father of an autistic girl who is a member of clear caveat that if Heather and I were lucky enough to start a one of our social groups, which are open to ASEA members. By family it would mean me stepping away from the position and speaking with these people, I not only get a real story of how we the board entirely. I will remain part of ASEA fundraising efforts, are helping, but also ideas on where we can fill gaps to serve the but it will no doubt be in a reduced capacity, as Danika has Edmonton autism community better. become the focus of my life.

I also had the pleasure of working with Vicky and Gerry It is with great excitement that I pass on the Presidential Beauchamps for the second time. Vicky and Gerry are retired torch to our current VP, Arif Khan. Arif has become an integral Edmontonians who graciously spread their time between part of the organization in very short order, and I have the different organizations who work casinos to raise money for their utmost confidence in his abilities to take this organization cause. To my knowledge they don’t have a direct link to autism, to the next level. but that hasn’t stopped them from being a part of the last two casinos we have had. In fact, when I asked Vicky just how many casinos they work, she quickly pulled out her monthly calendar to show me that nearly every day had an X marked, indicating they were volunteering their time. It was a real inspiration for me, as they have no doubt contributed to many different causes in the Edmonton area without ever asking for anything in return. I will make sure a copy of Autism Now gets to them as a small gesture of our gratitude for helping the Autism Society of Edmonton. They are true volunteers in every sense of the word.

3 Education Matters: Positive Inclusion Karen Bain and used consistently V Value of an inclusive philosophy is understood and Recent discussions related to best practices for inclusion have shared by all again challenged me to consider how to best support school staff E Engagement for the student is arranged around both social as they increasingly work to include students who may display and academic tasks and across school experiences seriously interfering behaviours. Although inclusion continues to ______be a positive choice for many students having autism, parents and school staff share concerns about behaviours that disrupt teaching I Individualized planning establishes and accepts unique and learning, create unsafe situations for the student, or place strengths and needs, and assessment information others in the school at risk. provides information N Need for extra reinforcement and environmental Education Matters has previously reviewed Positive Behaviour planning is understood Support programs, reinforcement, and many behaviour strategies C Collaboration between home, school, consultants, over the past few years. The following is an attempt to list strategies wraparound services, and opportunities to meet individual and techniques that appear in schools where inclusion and positive interests is established programming seem most successful. Although the process of L Language level and addressing the ongoing needs for setting up an individual behaviour support plan remains most instruction related to interpersonal communication is clear critical, the following is an attempt to list some of the features U Utilize the whole school by sharing responsibilities of school programs where students are more likely to participate S Staff skill and supports for professional development and successfully, in spite of challenging behaviours. ongoing learning are provided I Intervention is rapid when behaviour and/or collaboration changes Positive Inclusion for Having Severe Interfering Behaviours O Ongoing needs for direct instruction of social skills, as well as P Positive Behaviour Support models are in place, and a communication and academic achievement, are planned for behaviour support plan has been written as part of a team N Natural learning opportunities are supported by immediate effort to make inclusion work well feedback and appropriate levels of prompting O Observations and objective data-based decisions are being made, rather than relying solely on anecdotal Remember: it takes a whole school to support a student notes or personal opinions. Documentation is maintained having severe interfering behaviours. and relevant. S Supports and supervision necessary for a student are [email protected] identified and established in advance. I Investigations regarding history of past programs and successes are completed before the student begins school, and a good transition process is in place with dates and follow-up expectations T Time is provided in a fair and respectful way to the learning team I Interactions between school and family are positive, and communication practices are agreed upon

4 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org CALL FOR NOMINATIONS: ADMINISTRATOR, TEACHER AND Successful Transitions to EDUCATIONAL AIDE OF THE YEAR 2010 Adulthood: Learning from the Autobiographies of People with Did your child have a good year at school in 2009/10? Was there a teacher, educational assistant or principal Autism Spectrum Disorder who made a big difference to your child’s learning Katrina Kully-Martens and school experience? In recognition of their efforts, nominate the staff – administrator, teacher and/or A longer version of this article is available online at ASEA’s educational assistant – who made school the positive, enriching experience it should be for children with website. To read it, please visit www.autismedmonton.org/ autism spectrum disorders. Educational placement is not resources/ and click on “Successful Transitions to Adulthood”. restricted – district sites, community school placements, colleges and home schooling are all acceptable. Most people’s transition from adolescence to adulthood is Nomination forms are available from the ASEA office at marked by changes and challenges. One might expect that 780-453-3971, or on the website www.autismedmonton. the transition into adulthood of people diagnosed within the org. Deadline for nominations is Monday, May 17, 2010. autism spectrum would be uniquely challenging, considering Awards will be presented at the Autism Awards Evening the prevalence of symptoms like marked impairments in social interaction and communication. Few studies, however, on Tuesday, June 8, 2010. have concentrated on the internal states and points of view of individuals with ASD. The increasing number of autobiographies written by people with ASD represents a virtually untapped resource of insight into the personal Thank You experiences of people with ASD. This study qualitatively analyzed autobiographical material written by people with To Our Autism Now Contributors! ASD to shed light on their distinctive experience, and to identify traits associated with a successful transition from Jean Ashmore Cathy Lamoureux adolescence into adulthood. Insight into this important Karen Bain Treva Lunan developmental period could be valuable to families, teachers, Anthony Barrett Andrea Meredith service providers, and people with ASD. Deborah Barrett Janice Meredith Renate Burwash Garth McLauchlan Over 30 autobiographies were read, and four were analyzed in detail. The autobiographies were located by referencing Jan-Marie Chrzanowski Karen Phillips a list complied by A.M. Baggs (www.autistics.org) as well Linda Dowell Eugena Rempel-Witten as previously-published papers. Ghost- or co-written books Brittany Frances Tanna Somerfield were excluded, as were self-help/creative writing books, and Ryan Guenter Patricia Terrett those by underage authors. Four of the remaining 35 books Katrina Kully-Martens Carla Villar (25 authors) were selected, in order to keep the analysis manageable. The authors of the selected books were from Roma Kurtz North America, spoke English as a first language, did not use Your talent and hard work have made this issue facilitated communication, had received a formal diagnosis, and explicitly described their “transition period”. The four of Autism Now possible! books were: Look Me in the Eye by John Elder Robison, Thinking in Pictures by Temple Grandin, Songs of the Gorilla Nation by Dawn Prince-Hughes, and Pretending to be Normal by Liane Holliday Willey.

5 The data were analyzed using a qualitative method called interpretative phenomenological analysis¬, which explores how them.” These activities brought her self-acceptance and people experience their personal and social world by considering confidence, and made use of her “Aspie” gifts. their personal perceptions and experiences (phenomenology) and the meanings they attribute to particular events 4. Support or “Support and Understanding” (interpretation). The method seeks to make detailed statements about a focused group, rather than generate hypotheses and The most frequently reported external asset/theme in this study broad claims about a larger group. describes supporting and encouraging interests, abilities, and growth; playing to strengths; positively redirecting obsessions After relevant sections were transcribed and entered into the and interests; interacting to facilitate independent thinking and software program ATLAS.ti, data were coded for insights and ideas, and allowing independent discovery. Grandin writes, experiences. Themes were identified and grouped under broader “Mr. Carlock was my salvation… He channeled my fixations super-ordinate themes. Super-ordinate themes were compared into constructive projects. He didn’t try to draw me into his to the Developmental Assets (SEARCH Institute, 2003), a world but came instead into mine.” Willey describes a special respected framework conceived through analysis of scientific friend she had in college in similarly poignant terms: “He literature, which identifies the building blocks of healthy youth- was … the only person who made his way through to me … to-adult transition. There are 40 developmental assets under eight [and] found a way to meet me in my world without making categories: four external asset categories, and four internal. any demands that I meet him in his. If everyone could be that gracious—maybe then, we would not even need a definition The External Assets and Corresponding Project Themes for Asperger’s Syndrome.”

1. Empowerment or “Feeling Valued and Useful” Internal Assets

This encompasses assets such as community valuing youth. 1. Commitment to Learning or “Support and Understanding” Robison writes, “For the first time in my life, I was able to do something that grown-ups thought was valuable… I may This includes achievement motivation, school engagement not have known what to say or do in social situations. But if I and bonding to school, and might depend on support (an could fix five tape recorders in an afternoon, I was ‘great.’” external asset). Although all of the authors experienced great difficulty in school due to a misunderstanding of their complex 2. Boundaries and Expectations or “Role Models needs, they excelled when placed with supportive teachers. and Encouragement” Willey writes, “The experiences I had in high school… gave me strength, insight and confidence to look at myself as an This includes assets like positive peer influence, adult role individual…” models, and high parent/teacher expectations. Grandin praises her teacher: “Mr. Carlock didn’t preach, but showed by his 2. Positive Values or “Advocacy” own conduct a social perception that I envied and tried to emulate. From him I was learning humanistic attitudes There are no specific quotes to exemplify this theme, which that I lacked because of my autism.” encompasses assets like caring, equality and social justice. It was clear from the autobiographies that the authors 3. Constructive Use of Time or “Goals and Aspirations” possessed these values.

This describes creative activities, youth and religious programs, 3. Social Competence or “Protective Factors” and time at home. Willey writes about how she “simply enjoyed…particular activities” and “sought ways to explore This includes resistance skills (like resisting negative peer pressure and dangerous situations) and decision-making. Robison writes, “Heroin was scary... No way am I going to do that, I thought.”

6 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org 4. Positive Identity or “Self Esteem,” “Goals and Aspirations,” and “Niches and Roles” 4. “Strategies and Behaviour Change” As the most frequently reported internal asset, it seems The authors devised strategies for social interactions; this creating a positive identity may be one of the most important appears to have developed out of a desire to “adapt” and live characteristics of a successful transition for people with ASD. more “normally.” Robison writes, “I have learned what people Willey writes, “I found great acceptance among my drama expect in common social situations. So I can act more normal peers, most of whom were extremely tolerant and appreciative and there’s less chance I’ll offend anyone... I have learned a of diversities and personal visions.” range of questions that are socially acceptable.”

Unique ASD Assets I enjoyed attempting to study ASD from “the inside out”, and wish I could share more of these wonderful autobiographies’ 1. “Capitalizing on Differences” insights. I encourage you to seek out autobiographies, creative writing, or self-help books by authors with ASD. There is great All of the authors discuss using ASD to their advantage. Willey variety among these authors, but their perspectives contribute writes, “I found the speech and dramatic arts club… I was something unique and valuable to our understanding of ASD. able to flourish in such a warm and supportive environment, finding it to be the best place for me to turn many of my AS traits into real and viable assets.”

2. “Self-Understanding”

This refers to the process of understanding and reflecting on how having ASD affects one’s life, and coming to terms with it. Robison writes, “It was a great relief to finally understand why I don’t look people in the eye. If I had known this when I was younger, I might have been spared a lot of hurt.”

3. “Adaptive Coping Mechanisms”

This describes different ways of counteracting harmful things like stress and anxiety, or other difficult symptoms of ASD. Interestingly, the authors’ strategies, like connecting with nature, building cattle chutes, working with machines, and reading/writing, became large parts of their current careers. Prince-Hughes, an anthropologist, describes “retreating deeper and deeper into nature”, and Grandin, a professor of animal science, writes about using “stimulating activity” such as “horses to gallop and intense physical labour” to combat her “nerve problem.” Be a Role Model

7 Technology Takes the Lead – When Your Child Wanders, GPS Can Be a it can be seen and deliver notifications almost anywhere, Real Life Saver to almost any web-enabled device (laptop, cell phone, Garth McLauchlan PDA, etc.) • The unit should be robust and able to take a bit of a beating How did we ever live our lives – wearers, especially kids, will not always be kind or diligent without them? Cellular phones, about keeping the device dry, shielding it from bumps, etc. laptop computers, personal • ‘Geo-fence’ capability should be built in, allowing the video recorders – did we really caregiver to set up “safe” and/or ‘restricted’ zones that will find a pay phone or wait until ensure they are notified if the wearer leaves a safe area, or we got home to make a call? enters one that could threaten their well-being (creeks, hydro Were we actually tied to an stations, ravines, etc.) office or a desk to get any • The system should notify only the caregiver’s “authorized list” work done? And did we let of responders, and that list should be as long as the caregiver the TV network schedule cares to make it dictate when we watched our • The user’s account should be 100% secure, and encrypted to a favourite programs? level that ensures no one but the authorized list can ever view the whereabouts or details on the wearer We did. That is, we did until • The unit should enable the wearer, if appropriate, to press and new, affordable and reliable technology came along that hold an emergency “find me” button in the event that they gave us choice. feel threatened, lost, or disoriented • The unit should leave a “breadcrumb trail” which can tell When it comes to the safety of our loved ones, the advent caregivers that a wearer has entered a building or other of GPS locating devices brings to bear a powerful tool for covered area, and which will pick up again should they leave parents and caregivers to be more confident and effective it. (This feature also can be useful in establishing patterns when those in our charge sometimes wander or, in some around wandering.) cases, bolt. That moment of realization, and the ensuing • The program cost should be manageable, and weighed against panic as we organize our thoughts and resources to set the stress and difficult nature of a search, as well as the peace about the necessary search, can be traumatic for all involved. of mind for family and expanded horizons for the wearer It can also be largely avoided with some simple advance The Autism Society of Edmonton Area (ASEA) has performed planning and preparation. some real-world testing on GPS locator devices, and the EYE- ZON EZ-100 tracker received the most positive feedback. EYE- GPS personal trackers come in a variety of shapes and forms. ZON has worked closely with ASEA to understand the needs of Some are more suitable to various activities and lifestyles than children and adults with autism, and has been very responsive others, but families looking for such a device should consider in developing a platform that meets many of the pressing needs some of the following basics: facing families whose children or family members may wander. • The device should be lightweight and easily adapted It is important to note that NO DEVICE can ever replace the to the wearer’s preference or habits (pocket, wristband, vigilance of a parent or caregiver. GPS simply provides one more keychain, etc.) potentially powerful tool in the daily effort to provide the best- • The interface for caregivers should be simple and intuitive, possible quality of life for children and adults with autism and presenting no barrier to use for anyone with even the most their families. basic computer skills • The device should operate on a combination of GPS For more information about the EYE-ZON personal trackers, (satellite) and cellular communications platforms, so that please check out the ASEA website at www.autismedmonton.org or contact Dr. Deborah Barrett, ASEA’s Director of Community Awareness and Development, at 780-435-7170 or [email protected]

8 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org The Autism Society of Edmonton Area & Eye-Zon Personal GPS Tracker Present: Inclusion in Panama? Cycle for Autism Edmonton 2010 Cathy Lamoureux Plan to make this year’s Father’s Day extra-special by joining Today, I read a newspaper story about a female author from the Autism Society of Edmonton Area and friends at Gold Northern BC who wrote several impressive novels while living Bar Park on Sunday, June 20, 2010 for our inaugural Father’s in Vancouver, before moving back to her small Haisla First Nation Day 2010 Cycle for Autism. village. In the literary community she is brilliant, but back at the village she is considered slow, or “special needs”, as we like to You don’t have to be an expert rider to enjoy the ride or to call it in mainstream society, because she has forgotten “Nusa”, come and join in the fun! Beginner riders and those wishing the traditional way of Haisla teaching. The Haisla way of gauging to take the easier, shorter route can ride, walk or run on the intelligence is very different from mainstream ways, and by asphalt interior trail inside the park, while more experienced Haisla standards she is “special”. This article led me to spend riders and runners who are looking for more of a challenge can venture on through the easy to intermediate trails than some time pondering my experiences in my recent trip to skirt the outer edges of the park. Panama to see if Jake, my 9 year old child with ASD, could fit into a different society. Everyone is welcome! The Autism Society summer staff will be on hand to lead participants in a variety of fun activities, In an earlier issue of Autism Now, I explained how we were local band Christian Hansen & the Autistics be on hand to embarking on a 3-week journey to Panama with Jake, his 8-year- warm you up for your ride, and the Autism Society Board old “neurotypical” brother Clay, and my husband Kent. We and volunteers will be on hand cooking up and serving some were going to immerse ourselves in the Panamanian culture by tasty BBQ’d hot dogs and light refreshments. backpacking, taking the local buses and staying in the villages with locals. As you can imagine, I have many funny stories to share Come on down and learn more about the EYE-ZON locator and GPS tracking device that will help ease the stress about this incredible journey, stories that will have you screaming many families have when their loved one with autism goes with laughter. Imagine yourself travelling with your ASD child missing. The first 10 teams that register will be outfitted with to a foreign country, and you can begin to visualize the countless a tracker for the day, and family members will be able to awkward and amusing situations that we found ourselves in. But track their designated rider on the onsite live website in the end, I decided to shift my focus for this article and give my hosted by EYE-ZON. thoughts on inclusion vs. segregation in school.

Start forming your team and collecting pledges now! All the I currently have Jake enrolled in an Opportunities class, but have money raised for this event will stay in the community and heard many different arguments for why inclusion or Special Ed directly help the Autism Society of Edmonton Area, which programs are best. Because both arguments are convincing enough has been serving the needs of families affected by autism that many of us are left confused, I was going to Panama to see for over 39 years. ASEA provides advocacy, support and programs to the more than 7000 families in the Edmonton just how different Jake’s life could be in an inclusive community, area affected by autism. and to see if he would adapt better. My husband was worried, and made me leave any means of acquiring money at home. He was Check the www.cycleforautismedmonton.com website afraid that, with my impulsive personality, we would be buying a today for more information and how you can help! Or call little piece of heaven and moving there if Jake actually thrived in the Autism Society of Edmonton Area at 780-453-3971 another country.

Registration @ 9:00 am - Ride @ 10:00 am When we finally arrived at our first destination there were several See you there! local kids playing outside, and I watched as my kids went off to do

9 what “normal” kids do. Jake was an instant hit, as he always comes across very confident, whereas his brother tends to stay seen. He was incredibly popular with the local adults, and only in Jake’s shadow. As the hour moved on, though, I began to see had severe meltdowns when presented with too many choices. a familiar pattern: the kids slowly started migrating to Clay and trying to avoid Jake, with his many unusual and annoying Because Jake is a kid who can only be presented with one or antics. Interestingly, as the kids disengaged, so did Jake, but he two options before becoming overwhelmed, I have concluded appeared indifferent to the situation. Suddenly, Jake found a that Jake thrives in any society which is rigid and has many monkey friend. Yes, believe it or not, one of the monkeys began adults in it to help him cope with the unpredictable behaviours to play with Jake. Later that morning, the monkey came up to of his peers. Like the novelist and like many other children, Jake and lay on Jake’s lap - I actually have pictures to prove this Jake is considered brilliant in the areas he can understand, but incredible story! But although I would love to share many more unfortunately these are not the areas our society fascinating stories like these, like where he fit in and when he did measures intelligence with. not, I must keep this brief. On completing my “makeshift” investigation, I have concluded While thinking about the novelist I mentioned in my that Jake flourishes in an environment very close to how his introduction, I think about Jake’s intelligence and how it is Opportunities class is structured, so when it comes to the measured. Jake failed miserably when trying to play with his peers; segregation vs. inclusion debate, I believe that inclusion is not even with a language and cultural barrier, the kids knew he was the best option for Jake. In the end, intelligence is really a false different. I can safely conclude this, as I had the chance to watch measure of who a person is, because it depends too much on his brother play through the same language and cultural barrier their environment. I have decided to place less emphasis on very successfully. Going back to the monkey story, that same academics or fitting in with peers, and just hope school stays as monkey chased the kids later that day, and gave Clay a horrific good an experience as possible so that when he enters this adult scratch on his leg. It appeared as though this monkey felt Jake was world he so craves, he can flourish and have his true potential the only human who was intelligent enough to understand how shine through. to play with him. Jake also excelled at snorkeling and surfing, and could manoeuvre through the bus stations like nothing I have CALL FOR NOMINATIONS: ADULT KEYWORKER OF THE YEAR 2010

Have you been blessed by someone who really knows how to support your favourite adult with autism? We want the world to know about them! Individuals who enrich the lives of adults with autism make the way forward easier for all of us.

If you know someone who excels at helping adults with autism at a workplace, in a group home, a post-secondary institution, or as a keyworker in another capacity, ASEA would like to celebrate their contribution at this year’s Autism Awards Evening. ASEA members are invited to nominate keyworkers for this annual award. Nomination forms are available from the ASEA office at 780-453-3971, or on the website www.autismedmonton.org. Deadline for nominations is Monday, May 17, 2010. Awards will be presented at the Autism Awards Evening on June 8, 2010. Understanding Intelligence

10 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org What is PDD? Deborah Barrett Applying for PDD – If you have young children with autism, you may not have Suggestions from a Parent thought much about the world of adults. But it’s important to know that FSCD funding ends when your child turns Roma Kurtz 18. In the Edmonton area, the Persons with Developmental Disabilities Edmonton Region Community Board (PDD) With two adult sons with autism, Roma Kurtz is an expert at provides funding for adults. PDD can provide funding through advocating for her boys. In November, she and David Jardine service providers or through family managed supports. presented at an ASEA Parent Information Night. Here are Roma’s pointers for negotiating contracts with PDD. The eligibility criteria for PDD are not the same as those for FSCD. Just because your child qualifies for FSCD funding Build bridges with professionals - consider what impression does not mean he or she will be eligible for PDD funding. you will leave after the meeting In order to qualify for PDD funding, your young person • Be Mr. or Mrs. Manners. with autism must be 18 years of age, have an IQ of 70 or • Be businesslike. Keep your tone pleasant. below, and have significant adaptive limitations that began • Find a healthy outlet for the emotions and worry (away from before 18 years of age. A significant number of children who the meeting), and focus on the goals during meetings. receive funding from FSCD will not be eligible for PDD under current regulations. Take your young adult child to the PDD meeting. Goals You May Want to Consider: • Improve the lives of our children. To apply for PDD funding, contact PDD well before your • Open doors so that our children can be part child turns 18. They will clarify the process and help identify of the community. the necessary information to determine eligibility. PDD Intake • Prepare for independence. Coordinators can be reached at 780-427-2817. Once eligibility • Create a meaningful lifestyle: Jobs, leisure, volunteering. is determined, you will need to negotiate a contract for the • Ensure safety at home and in the community. services your child will need. Tips: The Art of Persuasion. 1) Describe your situation accurately and in detail - tell your story. Be very clear about what you are asking for. 2) Don’t be intimidated. 3) Have goals and objectives. For example, talk about what the day will look like and how goals and objectives will be achieved. 4) Try to make your situation unique. Decisions are made on a case-by-case basis. If you describe your successes and challenges, it will give the PDD panel good reasons to make favourable choices for your adult child. 5) Frame your entire story around safety - your safety, staff safety, the adult child’s safety in the home and in the community. 6) If you disagree, retell the story and state the problem. Don’t threaten or accuse. 7) Collaborate. You are not alone. Network during breaks.

Think about it while they are young

11 Prepare for Meetings • Make an outline of questions and items that you A family group want to address. FAMILIES FORWARD: • Be informed - Know who is attending the meeting facilitated by the Gateway Association for and who you are talking to. Community Living now has its own website! • Think through problems, rather that getting caught up in feelings of frustration or helplessness. There might be more The purpose of this website is to: than one way to solve the problem. Keep an open mind. • Provide an online resource centre for families who are supporting someone with a developmental Keep records disability. • Organize all information about your loved one in one place: • Provide online mentorship for families. school, doctors’ reports, letters of support, etc. • Create a support network with other families in similar situations through the use of its forum. Follow up any meeting with a letter • Create a recognized and unified voice for families. • Thank the PDD panel for meeting the needs of your adult child. The people on the panel solve problems all day long; if To access the Families Forward Website, go to they have understood the needs of your child and are working the Gateway for Community Living website at with you to find good solutions, tell them in writing. www.gatewayacl.org and follow the Families Forward • Tell them that you are connected with the Autism Society Website link on the homepage. - it shows that you are connected to something bigger than yourself and that you have support. The Families Forward group meets bi-monthly. The next meeting will be on April 29th at 6:30pm. If you are supporting a family member with a developmental Advocacy is about your goal to open doors for your child. disability and you want to connect with other families, Keep focused and get support when you need it. share resources, access the mentorship program and create a unified voice for families in the Edmonton area, please join us.

Although the majority of families involved with Families Forward have adult sons and daughters, families with younger children are most welcome to come and share their experiences, resources and knowledge. They will also have the chance to learn from other families, some of which have been a part of the “system” for a number of years.

For more information, contact Renate at renate. [email protected]

Families Forward: Coming Together, Sharing Together, Working Together, Keep Records Succeeding Together

12 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Family Network Deborah Barrett Things That Make Me Feel Included Funding for our kids and adults with autism always seems Anthony Barrett to be on the chopping block. In part, that’s because kids, adults and families affected by disability do not seem to One of the perks of editing Autism Now is that I get to write about have a significant political voice. Those with developmental my son every now and again. (If you send us articles about your kids, disabilities have difficulty speaking up, and their families are we’ll print those, too!) This time, I am very proud to announce that often too exhausted to take action. Recently, I’ve learned that my 21-year-old, primarily non-verbal son, Anthony, has been given another reason is that our MLAs do not know much about an honourable mention for a paragraph he wrote and submitted in the challenges our kids, adults and families face. When faced a contest for NorQuest’s Discrimination Awareness Week. Despite with a decision to make, they have nothing much to inform the fact that Anthony’s verbal skills are significantly affected by them, so they look to the bottom line. autism, Anthony made us understand that he still wanted to go to school after high school. After much struggle and strife, we finally Now, that is something we as families can change. ASEA discovered NorQuest College, where Anthony has been accepted as and Families Forward from Gateway Association for a regular student. The staff at NorQuest tested Anthony and helped Community Living have begun a Family Network. Its goal us select math, reading and writing courses we felt Anthony could be is to build a network of families of children and adults with autism and other developmental disabilities in each riding successful in. Anthony is currently in his third semester at NorQuest across Alberta, who will build relationships with their MLAs and has done very well in the four courses he has taken there. to inform and educate them about the issues we face. We are Anthony is assisted by his aide, Christian Hansen, for whom we were hoping that as MLAs get to know us, our challenges, and the able to negotiate funding from PDD under their Family Managed contributions we can make, they will make better-informed Supports Program. Anthony’s teacher, Iona Thomas, has been very decisions about legislation and regulations that affect our accepting of Anthony, and has been especially helpful in making children and our families. Norquest’s Computer Writing course accessible to Anthony. Below is Anthony’s “honourable” paragraph. If you are interested in getting to know your MLA to help – Deborah Barrett him or her understand the issues affecting our loved ones with developmental disabilities, we would love to have There are a lot of things that make me feel included. Most of the you join our network. To find out more, or to get involved activities that make me included are with Family. Going to Dad’s you can email Deborah at [email protected] or Renate house for 2 weekends make me happy. Also, going camping with at [email protected]. Please be sure to put Paul and Kim makes me excited. When I went to Maui with Family Network in the subject line. mom and David we went to the beach and I went for a swim. I felt good. NorQuest is my college and when I am at NorQuest I feel good. I take the stairs to my classroom and people say hi to me. I sit in my class with people and Iona talks and I listen. Christian sits beside me and I learn.

13 Thank You to Our ASEA Volunteers!

Jeff Belch Mike Kay intrigued by the idea of encountering people who, I thought, Amelia Duplessis Anita Ferri had answers to some of the great cosmic questions locked David Jardine Janet Houle away in their eccentric minds. My intuition tugged subtly to Simonne Lougheed David Lougheed the area of the page where autism appeared. I was in awe of Kelly Sheehy Claire McCurdy the idea of this concept I knew nothing about. Jaspreet Rai Sara Symington Alan Wagner Eric Oggletree Tragedy hit Edmonton on the first week of my placement Neil Mikalonis Gail Wyatt when news spread about the father who took the life of his Tracee Baird Iris Barrington Leigh autistic son. I found myself in an office flooded with calls Debbie Bocian Patricia Brine from concerned parents and pressing media. I wondered Charlene Prochnau rudy Guerra what the situation was for someone to choose to do this, Aidan Guerra Karen-Ann Moore and what this boy’s experiences were as an autistic child in a Anita Homan Roma Kurtz Eugena Rempel-Witten greg Morrison world where people’s experiences where so different from his. Kent Phillips Karen Phillips Or were they that different? I couldn’t answer that then, and Daniel Phillips Richard Vanderwell I can only resolve this question now with a paradox: I have Jean Ashmore Terri Robson come to observe that people with autism are as much the Mark Lynch Shane Lynch same as they are different from “neuro-typicals”. Really, aren’t Jackie Ryan Karen Bain we all as much alike as we are different from one another? Marcy Henschel Holly Symonds During my time at ASEA I have come to better understand what are termed “Autism Spectrum Disorders”. I have In Awe of Autism grown fond of the characteristics autistic people possess: their Eugena Rempel-Witten level of honesty, especially, and their unique interests and ability to focus on them with such intensity. “Aspies” What has it been like to be a social work field placement student are some of the most interesting people I have had the at the Autism Society of Edmonton Area? pleasure of meeting!

Fresh to the field of social work and removed from university I have come to respect ASEA as an agency, and place for the past 8 years, I found myself in a MacEwan classroom them in high regard. I feel embraced and valued by the of about 85 students when the placement package was handed staff, and I value the learning experiences and the positive to me. In it was a list of agencies requesting my presence as ‘thoughtsphere’, or culture, that exists. Karen Phillips’ a student, or at least willing to tolerate me for the next eight leadership has inspired me and given me the opportunity months - I wasn’t sure which. As I read through the agencies and to explore my own gifts as a budding social worker, their descriptions, I was overwhelmed, and frankly had no idea and has served as a model of what leadership is. Karen has where I wanted to be placed. been a true mentor to me, and given me an optimistic picture of the field of social work. Patricia Terrett’s dedication As I sat in the sun on my front porch that September afternoon, to supporting families and Linda Dowell’s sincerity have asking myself how I would come to this decision, something helped me to learn so much. Deborah Barrett’s commitment appealed to me about the Autism Society. “What is autism?” to the development of community and to enriching the I asked myself. I was ignorant, like many people in society. I’d life of her son with autism makes her invaluable to the seen “Rain Man”, but was that really what it was all about? I was organization, and it has been a distinguished pleasure making these connections.

14 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Please return your completed form and/or donation to: Autism Society of Edmonton Area #101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

I have participated in parent discussion groups, advocacy groups, parent and teacher information series, intake interviews (introducing parents, children, teens and adults training videos could reverse that trauma. Pooping and peeing to our programs), exploration of satellite support agencies, are not only sensory, but also powerful. We own them – we connecting to parents and making referrals to other agencies, do them. This is how dogs mark their territory. There is also board meetings, government planning and information the undeniable shock value inherent in indiscriminate bodily meetings, and tours of other agencies that serve clients functions. Furthermore, the entire mystique surrounding poop and pee may be lost on the Autistic child. Let’s face it – if ever with autism, such as the Glenrose Rehabilitation Hospital’s there was a situation that called for social etiquette, non-verbal Autism Follow-up Clinic and Mayfield School’s program communication, empathy and intuitiveness, it is without a for children with autism. This placement has provided me doubt summed up in the phrase “May I use your restroom?” with direct opportunities to practice interview skills learned Restroom – now there’s a euphemism for you! Oh, no, no business in social work courses; the practicum has been very fitting going on here – just resting, thanks. with the theory learned in the classroom. I have gained a lot of in-depth knowledge about what makes for a diagnosis of My friend used to attend his son’s school field trips when his autism and how that process unfolds, while learning a lot of son was in kindergarten. After so many complaints about his transferrable skills in advocacy and other areas. yet-to-be-diagnosed Asperger’s boy, he just decided to tag along and save the teachers the trouble of reporting. One such outing I would recommend ASEA as a placement to students was held at the prestigious Jubilee Auditorium in Edmonton. looking to gain a diverse set of skills in an environment The children were in the mezzanine waiting to be seated that is focused on positivity and acceptance. My inquisitive minutes before a ballet performance. The son of my friend spirit has been nurtured by the wealth of knowledge and indicated he needed to use the washroom. He was told to wait. experience I am surrounded by at ASEA, and I am proud to In short order he dropped trou and, according to my friend, “took a huge dump right then and there.” My friend simply got be a part of this family of exceptional people. a paper towel, cleaned it up and carried on. This seems like a natural consequence of telling a kindergarten child he had to Toilets are Noisy and Poop Stinks wait to use the washroom, however non-conventional. Tanna Somerfield My son was diagnosed with Asperger’s at age 7, but symptoms presented themselves as soon as he could sit up. While still Toilets are noisy and poop stinks. Spectrum or no an infant he often fought pooping, and I frequently had to spectrum, toilet training can be a tricky topic. I once stand by with suppositories and wipes, on call like a midwife. worked with a preschool, 4-year-old boy who came to This was around the same time he began licking Velcro, so I school in pampers. Each time I tried to introduce him to think it was a sensory issue even then. Our child would not go the toilet, he became hysterical and ran screaming out of gently into that good potty. He pooped his training pants and the room. I asked his mother about this, and she explained insisted upon Pull-Ups until he was 3 ½ years old. There was that they owned the first Jurassic park movie, and he had the occasional breakthrough once or twice, when my husband watched it over and over again. Jurassic Park fans will recall and I put him on the musical potty and took turns reading the untimely death of a character in the film who departed the Throne Of My Own book that came with his first potty, but from life as we know it via a T-Rex that chewed him up these spurts were few and far between. Short of strapping him whole, outhouse and all, while he was sitting, newspaper in on his potty and putting him in front of Tree House, I had very hand, trousers to ankles, doing his business. I must say, it little success. was a most undignified demise. For our son, one thing eventually did work, and believe me In any case, this scene was indelibly imprinted in the when I say that it was born of serendipity and trial and error heart and mind of my little pre-schooler, and I am not – throw enough mud at the wall and sooner or later some of it sure if a lifetime of Barney and Teletubby toilet-friendly sticks. My husband used to incite our son to gales of laughter with purely physical humour and nonsensical sound effects.

15 Between Tim’s talent as an entertainer and a wedding shower gag gift I stumbled upon, we got lucky. I once won a boo-boo The Autism Society of Edmonton Area’s prize at a stagette: it was, if you can imagine it, a Teddy Bear in men’s briefs and a little heart on his belly that said “Press”. 2010 Summer Program! Well, you will never guess what that bear did when you pressed the button. Yes, he fluffed – loud as a thunder clap – For Children and Teens: “Fun in the Sun” and then, in the most dignified British accent, announced, • Community recreation for children, and respite for parents “Ooooo, pardon me...”. • For children between the ages of 6 and 17 years • Parents may register their children for up to three full days The bear became known as the Fufta Bear, and needless to say, per week from June 28th to Aug 20th! Billy adored him. We were careful not to over-expose the Fufta • Daily hours are 9:00 am to 4:00 pm Bear – this was a novelty we needed to get as much mileage out • Minimum staff ratio: two youth leaders for every three of as possible. Every time we needed Billy to sit on the toilet children (one-to-one supervision is available if approved) (because by this time he had outgrown two potties and he was • Two locations: east-central and west-central ready for the Daddy’s Toilet), Tim would exclaim, “It’s time for • Community activities include swimming, water parks and Fufta Bear!” Billy raced to the toilet and sat poised for the show playgrounds, Our Lady Queen of Peace Ranch, picnics, of a lifetime. Tim danced with the Fufta Bear, synchronized walks, hikes in the river valley, movies, bowling, summer the Fufta Bear’s every movement, and pantomimed a very festivals, and more! embarrassed, sheepish tableau. Soon Tim was joining the Fufta Bear in his “Ooo, pardon me!” encore. Summer Program Youth Volunteer Experience

Now, to this day I am not sure exactly what made Billy poop • An opportunity for teens and young adults with ASD, on the toilet. Was it the sheer laughter and carefree, joyful excitement of watching his dad perform the farting bear dance? aged 16 to 22 years, to volunteer and make a contribution Did Billy transfer and generalize that if ever there was a farting to their community pooping party, this was it? I am pretty sure the fact that he • Volunteer placements suited to the individual skills and pooped on the toilet was incidental. I think the ritual of taking abilities of the youth his seat and being entertained beyond his wildest dreams by • With support from our team of summer volunteer coaches his father, whom Billy loves and adores, just relaxed him. The and various community partners, participants will gain actual pooping on the toilet likely occurred as an incidental valuable hands-on experience, learning about the bonus and became an automatic, mindless, muscle memory. I demands and benefits of volunteering doubt it was a conscious choice. • Our aim is for participants to enjoy an individualized and practical summer experience, and for families and friends But in the end, who cares? It worked. Sooner or later, if we to gain new insight into the strengths and capabilities of persevere and refuse to confine ourselves to conventions of their loved ones with ASD the neurologically typical, we will find a very personal and sensorially satisfying method of getting our Autistic children Summer Program Junior Youth Leader to have a great time on the toilet! Why tell them it’s good for them? Why even tell them they are there to poop? Let them • Paid summer jobs for teens or young adults who have ASD sit, rest, relax and, most of all, laugh, laugh, laugh… until they and are between the ages of 16 and 22 years poop. I mean really, could there be a better way to go? Sure, it’s • Junior Youth Leaders, under the supervision of a Job not Piaget, but as long as they’re pooping, eh? Coach, will supervise children during their various “Fun in the Sun” Activities. • The job coach will work alongside the Junior Leaders as needed, teaching them skills while allowing increasing independence as the Junior Leader is ready for it

16 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org • A safe and enjoyable confidence-building experience • Placements will be confirmed on a first come, first served (applicants will be assessed for suitability) basis once the application is complete • Contact ASEA by e-mail at [email protected] Registration: or by calling 780-453-3971 and ask to have a registration package sent to you. We will need your name, email • Registration materials will be available May 1st, 2010. address and phone number. Interested applicants should apply as early as possible in May. Enrolment is limited. We are looking forward to an exciting and activity-filled summer, so please spread the word!

Thank You to All Our 2009 Opening Doors Gala Donors!

Due to errors on our part, the names of several 2009 Opening Doors Gala donors were incorrectly printed or omitted from the previous issue of Autism Now. The Autism Society of Edmonton Area and the editors of Autism Now sincerely apologize to all donors who were not correctly thanked in the previous issue. Thank you for helping to make our 2009 Opening Doors Gala a huge success and a great boost to the Edmonton area autism community!

A. Clark Roofing & Siding Ltd. Chris Antulov GOA Culture & Community Sprit Ryan & Heather Guenter Alberta Group of Restaurants City of Edmonton Gold Dust Casino, Rob Scotia Bank, Donations, Alfred & Doreen Watts Clette Pare LeLacheur Sponsors Allard Foundation Clifford Baird Harvey Steblyk Shtabsky & Tussman Anita Ferri Cloud Nine Pajamas Jackie Miciak Special Olympics Avanti Colliers International Jean Ashmore Sportsworld Inline and Roller Basketbelle Company Coming Jocelyn Kennedy Rink Bow Valley Ford Cookies By George Joey’s Mayfield St. Albert Cosmopolitan Club Café De Ville Councillor Ben Henderson Kate & Clint Marshall St. John’s Music Cameron Homes Inc. Councillor Ed Gibbons Kingston Ross Pasnak Sunterra Canadian Linen Councillor Jane Batty Laurie Blakeman The Arden Canadian Tire Councillor Kin Krushell LeGnome The Bandstand Ltd. Candy Bouquet Councillor Tony Caterina London Drugs The Edmonton Journal Carbon Environment Boutique Danny Hooper Marilyn Percival The Urban Scrapbook Carlson Construction Ltd, Rick David Nicholas McLean Luggage Tracee Baird Rywek Devika Russell Moksha Yoga Tracy Lebrun Carol Hanna-Aukmon Dirk Kelm Morie Promotional Group Tracy McNaughton Carolyn Pratt Dynamic Funds Office of the Premier Waiward Steel Fabricators Casino ABS Yellowhead Esther S. Ondrack Old Spaghetti Factory Wilson Architect, Douglas Chandos ETS One Tooth Wilson Charlene & Byron Prochnau Fay & Greg Morrison Roderic Connop Winners/Home Sense

17 Our Journey (Excerpt) Jean Ashmore and did I detect the beginning motions of a humongous yawn Our third child, Matthew, forming on my son’s face. Yes indeed, there it was— and it has gone to junior and seemed to last forever! Apparently all that pre-coaching practice senior high school at LY the night before was completely forgotten. Cairns, where he is still attending today. Part of To my great relief, the manager didn’t seem to be quite as the high school program mortified as I was at this. He went on to explain that he really includes several rounds didn’t like just placing students for work experience, because of work experience. when they were done they usually didn’t stick around. He This was something I would much rather consider giving Matthew the opportunity really struggled with in of accommodating his work experience placement with the the beginning. Could condition that if he did a good job, they would give him the Matthew cope with opportunity to be part of their team. Safeway Customer Service Manager Maxine an unsupported work Reid, Matthew Ashmore and Heritage experience placement? I was completely stunned. I had gone in thinking we had a slim- Safeway Manager Phil Hanevich Would he be safe? to-none chance of finding a work experience placement, and it never even entered my mind that we would be considering the While the school can provide some help with finding a work offer of a part-time job. We gladly accepted his generous offer! experience placement for their students, parents are also encouraged to seek out and place their child with an employer. The manager told me he knew a bit about Matthew already, as Matthew successfully participated in several rounds of group Jason, our respite provider, also just happened to be employed at placements before we thought he was ready to go it alone. his store. The manager said that Jason had, on various occasions, That was a huge step for us. shared stories about his many adventures with our son. When Matthew successfully finished his work experience placement, When Matthew was in Grade 11 we approached our local the manager asked Jason for his opinion on how he thought Heritage Safeway store to consider taking Matthew on for his Matthew would do in his store. We were over-the-moon excited three-week placement. I was thinking ahead and wanted to when he called us in to discuss the offer of a part time job with find something that was close to home so that he could walk them. That was over a year ago. to his placement. Matthew is still employed with Heritage Safeway, and we have Like most mothers, I was desperate for my son just to be given noticed the sense of community that is developing around him. an opportunity, and I was preparing all kinds of “deals” I could His co-workers are very supportive, and seem to appreciate his offer them just to get his feet in the door: for example, I told presence when they are working with him. They tell me what a them that I could do on-the-job coaching after I was done my good job he is doing. Our neighbours have seen him working job, if they felt he needed that. By the time we made our way there, too, and tell us too what a great job he is doing, as well. to the store that early Saturday morning, I had already thought The manager has reassured me that if any concerns need to be of several other unrealistic deals. Thank goodness that, as things dealt with, he would call us first. turned out, I didn’t have to open my mouth and deliver any of them. That morning, I was more nervous than I’d ever been for What is most remarkable to me about this story is that the offer any job interview! of employment happened when we least expected it. Matthew wasn’t asked to change who he was in order to be accepted; they We were introduced to the manager immediately, and he took accepted him just as he is, and gave him the chance to prove that us into his office for an impromptu interview. As we took our he could be successful as a viable and important member of the seats, I could see from the corner of my eye that Matthew was Safeway team. We are so proud of Matthew, and we are grateful comfortably slouching rather than sitting straight in his chair, to the staff that work along with him and support him. This excerpt is just one small part of Matthew’s story. To read the entire story, please visit www.autismedmonton.org/resources/ and click on “Our Journey”.

18 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org PAID ADVERTISEMENT

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19 A World Through Rogue Eyes Janice Meredith and Andrea Meredith Rigidity Thursday, November 19th, 2009 My name is Janice, and the Most parents take their daily life for granted. Most parents following are excerpts taken would not have to stop and consider every little alteration from the webpage designed by made to their home environment. It’s not the kind of thing the my daughter Andrea. Rogue, my average person would ever think about, never mind having to middle granddaughter, is 3 years deliberately condition themselves to be aware of. old and, as noted below, was diagnosed with Autism Spectrum Rigidity is one of the most difficult-to-understand aspects Disorder and Sensory Processing of Rogue’s autism. It wouldn’t occur to me that the stovetop Disorder in April of 2009. Our hood light being turned off, when it is usually on, would cause family’s journey has been filled distress. I don’t understand how a change in the wattage of with rewards and revealing insights a lamp light bulb would even be noticed, never mind make into Rogue’s life and the challenges anyone uncomfortable. I can’t get my mind around why a that she faces every day. From different pillow case would be upsetting. I don’t notice when elation and happiness to despair there’s a change in the colour of the label on my cod liver oil. and frustration, it has been an eye-opener for me, and certainly not something that I think anyone can ever be fully prepared Oh, the ways in which you show me the light, Rogue! How else for. Andrea’s article about rigidity, which you can read below, would I become so aware of my effect on the world around me? really hits home: a simple haircut or hair colour has sent Rogue How could I have ever learned that every single action I choose, screaming and running away from me in terror, as opposed to no matter how small and seemingly insignificant, instantly the joyful “Gramma!!!” that usually greets me. creates a ripple and triggers a butterfly effect that ultimately shapes the world around me? Thank you, Rogue, for choosing Please take a moment to browse “A World Through Rogue to be exactly who you are, so that I may learn everything that Eyes”, located at http://rogueseyes.com/. We hope that you you know, but cannot tell me. will take something away for yourself, your family or others that will bring some laughter, peace and acceptance into your own world and the challenges you face.

Sincerely, Janice Meredith

Andrea & Rogue

My name is Andrea. I am an artist and a single mom to three daughters (and a very elusive cat). Rogue is my middle child. She has a diagnosis of Autism Spectrum Disorder and Sensory Processing Disorder. I am here to offer unique perspectives into her life as seen through the eyes of autism, and show you a bit about how our days together refuse to follow conventional ideas of parenthood.

20 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Thank You to All of Our Recent Donors! Parent Information Night – Caregiver’s Mosaic Sponsors – $1000-$4999 Association – Jan. 26, 2010 Jan-Marie Chrzanowski B & B Demolition Ltd. Butler Family Foundation Lenbeth Weeping Tile Riverbend Junior High School United Way of the AB Capital Region The Alberta Caregiver’s Association offers programs to help support caregivers. A caregiver is a family member or friend who provides care for someone living with challenges due to disability, Kaleidoscope Sponsors – $500-$999 illness or age. On January 26, Anna Mann and Janice Wehrhahn from the ACGA presented at a Parent Information Night for ASEA Dr. Michael Jacka members. Here is part of what they shared with an audience of parents and professionals: Tiffany Sponsors – $100-$499 In surveys of individuals in a caregiver role, it was found that Wayne Ruthford Patricia Gould Biljana Pupovac Wes Wintonyk many caregivers experience the following: Celia Carvalho Pinto - riding a roller coaster of emotions - feeling guilty Collage Sponsors – $0-$99 - frustration and/or resentment, both towards the patient and towards other family members, if they are not Lil Zasada Rosella & Jim Murray helping as much Mann & Elizabeth Gregorio Marie & Bruce MacLean - feelings of abandonment – friends often don’t Lynn & Richard Hallson Wendy Ewanik understand them Lula Styish Attitude Inc. Brian & Kathryn Speck - loneliness and isolation Atco Gas Maurice Rancourt - difficulty navigating the service system Nicoloe Bouclin-Graves Vanessa & Jay Reinelt Betty & James McDonough Simonne & David Lougheed - coping with difficult family dynamics Monika Anderlic Marie Lane Mitchell & Veronica Woynorowski Paul & Susan Rouleau Between 30-60% of caregivers show some signs of depression. Amanda Werbicki Susan Thompson Elaine Look Vesna Srnic It is important for caregivers to ensure that they themselves Chris & Arlene Paniak Jackie Ryan are being taken care of, along with the individual they care for. Richard & Mihaela Faryon Margaret McMullin Anita Homan Kerith Kreations Here are some things that were suggested for those of us caring Sonia & Sandeep Sethi Melanie Yourechuk for a child with autism: Roy Eykelbosh Ken & Nicole Gour Angela Wilm - Start by setting small goals for things that you need for yourself. Your generous donations make ASEA’s work possible! - Assess the feelings of guilt you are experiencing. Evaluate whether you really are, in fact, guilty of anything. Examine the situation and determine what you actually do have control of. Perhaps sadness might be the true feeling underlying.

21 - Parents of children with autism often experience a chronic state of crisis. Over time, as they work through the system, parents begin to realize that they are the ultimate authority A Caregiver's Bill of Rights on their child. It is important for parents to recognize this Wendy Lustbader, M.S.W. and trust in their own judgement. If professional advice given does not feel right to the parent, it probably is not. I have the right: - Do a self-evaluation of your own level of distress. Use the • To take care of myself. This is not an act of selfishness. It “Caregiver Self-Assessment Questionnaire” published by the will give me the capability of taking better care American Medical Association: of my loved one. http://www.ama-assn.org/ama/upload/mm/36/ • To seek help from others even though my loved one caregivertooleng.pdf may object. I recognize the limits of my own endurance - Read the Caregiver’s Bill of Rights, included on this page. and strength. • To maintain facets of my own life that do not include the You can contact the Alberta Caregivers Association for support. person I provide care for, just as I would if he or she were They provide caregiver workshops, and they offer advisors who healthy. I know that I do everything I reasonably can can provide support: for this person and I have the right to do some things http://www.albertacaregiversassociation.org just for myself. • To get angry, be depressed and express other difficult feelings occasionally. • To reject any attempt by my loved one, either conscious or unconscious, to manipulate me through guilt, anger or depression. • To receive consideration, affection, forgiveness and acceptance for what I do for my loved one for as long as I offer these qualities in return. • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one. • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help. • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.

Giving Care

22 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Have You Heard Him Play The Piano? Tanna Somerfield "You joining us this evening has meant the world to Billy."

Recently I attended a parent-teacher conference for my 9-year- In between sips of coffee and my sister's lemon cheesecake, I old son, Billy. Despite him having a cumulative file as thick as casually remarked, "By the way, about the piano: I never said he your arm, complete with detailed diagnoses of PDD, Autism could play the piano. I asked you if you ever heard him play the Spectrum Disorder and Asperger's Syndrome, my son’s teacher piano, because I sure haven't. Billy's never had a piano lesson in was not going to let him off the hook too easily. Diagnoses and his life, and if he has any natural talent or inclination to learn, IPP notwithstanding, I was informed of every transgression he has yet to grace us with it. So far, he honestly can't play a that a 9-year-old boy could possibly commit short of burning note to save his life! But he does love looking inside the back of down the school. The litany of alleged felonies ranged from the piano and sliding his finger across the keys up and down, his inattentiveness to his unique repertoire of distracting back and forth, hearing the rising and the falling of the notes. noises. I took notes, worked to minimize yawning and chair And the pedals – well, he loves the piano pedals. When he was repositioning, and tried to present my best effort and most four years old, he asked my brother to play using the foot pedals, positive attitude while empathetically indulging my son's and he'd peer down the back of the piano, completely amazed, frustrated teacher. and say, ‘Mommy, there’s a harp inside!’ He stared at the soft brakes pressing against the gold, threaded strings, watching them At the end of the meeting, I politely thanked the teacher. As I pull and tighten whenever my brother played a chord. One shook his hand, I asked him a question: “Have you heard him day Billy asked his uncle to plays the musical loom and weave play the piano?” The teacher was a little taken aback, but seemed some sound. He still presses himself against the piano when my intrigued enough. “No, as a matter of fact I haven't – he never brother plays. He says he's wrapping himself in a warm, cozy mentioned the piano.” musical tapestry woven inside the loom.”

"That is a shame. However," I brightened, "it so happens he has a Billy's teacher sat dumbfounded. Again, no words, but a pale recital tomorrow night. I'll send you an invitation!" expression washed over his face. But then, a smile slowly raised to his eyes as he heard Billy ask my sister to play his favorite The next day Billy arrived at school with an invitation addressed Leonard Cohen CD. Apparently, his teacher was also a fan. to his teacher in the front pocket of his agenda, and that very "Now that you are here," I whispered, "enjoy yourself. He's a night his teacher did indeed attend Billy's Piano Recital. At pretty wonderful kid one on one." the end of the 2-hour program, the small audience of friends and family regarded his performance with gracious, yet quiet, That night Billy and his teacher bonded over plates of creamy applause – anyone who knows Billy understands he is highly lemon cheesecake, listening to Lenard Cohen and Pat Methany, sensitive to loud noises, cheering, etc. Billy's teacher looked over building 3-D dinosaurs, playing and naming bird songs, and at me, and for the first time, words actually appeared to fail him. sharing Billy's favorite book, an astronomy atlas, which was Clearly he was impacted by the experience. nearly as heavy as a piano. After spinning the piano yarn, I stopped getting complaints from Billy's teacher. Then I thought My sister served coffee and dessert – we were gathered at her about it. Maybe next time I'll ask, have you seen him golf? house because my husband and I don't own a piano. I smiled at Billy's teacher and, with genuine and heartfelt appreciation, thanked him for coming.

23 Good Will Flows from Lenbeth Deborah Barrett Gray Furnishes ASEA Deborah Barrett It’s great to know there are small businesses out Sometimes you there who care, and just get lucky. Lenbeth Weeping Tile As Arif Khan, is one of them. Using ASEA’s Vice a piece of cutting- President, and I were edge equipment called checking out places to get inexpensive office furniture so the telebelt, Lenbeth that our staff can actually have some private places to work Weeping Tile can move in, we stumbled into Gray Office Furnishings. We met Peter most substances that Toews, a man who understands autism because, for a period flow – gravel, concrete, of time, there was a great deal of concern that one of his woodchips and the like – twin sons had autism. Although the diagnosis turned out at a fraction of the time not to be autism, Peter was more that sympathetic to our it would otherwise take. Lenbeth knows the service they offer cause. He and the owner of Gray Office Furnishings, Karen has the potential to disturb the environment, so they take pains Kosolowsy, provided room dividers, office furniture for two to be as environmentally aware and friendly as possible. offices, delivery and installation for a very modest sum. Thank you Gray Office Furnishings. You’re the best! But that’s not all. Lenbeth makes sure it participates in the Edmonton community by giving to a number of charities. This year, spurred on by seeing an item about ASEA on TV, Lenbeth contributed over $7700 to ASEA for programs and services CALL FOR NOMINATIONS: that support individuals and families affected by autism. It’s companies like Lenbeth who care deeply and take action that EMPLOYER OF THE YEAR 2010 and/or help make life better for every individual, including those who face adversity. Thank you, Lenbeth, for making a difference to WORKPLACE OF THE YEAR 2010 Edmonton’s autism community! Has your loved one with autism had a particularly good experience with an employer? Does your son or daughter work in a place that is supportive and helps build community? Submit a nomination for ASEA’s 2010 Employer of the Year or Workplace of the Year Award! We want to recognize employers and workplaces that provide accommodation, access, support and equal opportunities for employees with autism. Nomination forms are available from the ASEA office at 780-453-3971 or on the ASEA website www.autismedmonton.org. Deadline for nominations is Monday, May 17, 2010. Awards will be presented at the Autism Awards Evening on June 8, 2010.

Thank You

24 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Please return your completed form and/or donation to: Autism Society of Edmonton Area #101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

Winter Olympics at the Belmead evolved into figure skating as the students jumped into the air Interactions Program and spun around. Some of the students were even able to stand Carla Villar, Brittany Frances and Treva Lunan on one foot with the other leg extended behind them. The more flexible students pulled their back leg up behind them Belmead is an to imitate figure skaters. It was wonderful to see the students Edmonton having lots of fun with this activity. Public Elementary For luge, skeleton and bobsleigh, a gym mat was laid on top of School near two scooter boards. If the students wanted to luge, they laid on West Edmonton the mat on their backs with feet first. For skeleton, the students Mall. There are laid on their stomachs with their head going first. To bobsled, approximately two or three students sat with their legs crossed in a line on the 240 students mat. The mat was pushed from one end of the gym to the other from Kindergarten to Grade 6, including two Interactions by a teacher or another student. By the end of the activities, the classes for students who have been diagnosed with autism. students were cooperating and taking turns pushing each other across the gym. This activity has been requested by the students When planning activities in the Interactions program, in many gym classes following our Olympic Sports Day. we like to work with real-life themes. This winter our theme was the Winter Olympics. We planned several cross-curricular activities which included Language Arts, Math, Art, Health and Physical Education.

Using the winter Olympics as a theme helped our students learn about winter sports, different cultures, as well as the importance of teamwork. During Language Arts activities, students read about the Olympic sports, worked on spelling These types of activities are great for our children because activities, and completed comprehension questions related they allow our students to have experiences surrounding the to the event. Art activities included creating torches, medals Olympics they otherwise might not have. We adapt activities as and inukshuks. In Math, students learned about prepositional necessary, but believe in giving students as true an experience words and working with numbers. In Health, our students as possible. By combining language and math activities with enjoyed watching videos of some of Canada’s own Olympians. a theme, students focused on a real life topic but continued But some of the most enjoyable experiences for our students to learn the basic skills of reading, writing and math. Using were the winter sports physical activities. the winter Olympic theme helped our students learn about an event that is important not only to Canadians, but also to For our 2010 Olympic Sports Day, we had speed skating, people around the world. figure skating, luge, skeleton and bobsleigh activities in the gymnasium. To replicate the speed skating ice track, we had pylons set up in an oval around the gym. The students took off their shoes and had the option of skating in their socks or stepping onto sheets of paper to skate around the oval. The students swung their arms back and forth as if they were speed skaters, and then tucked one arm behind their back. This

25 Events at a Glance

For a complete, up-to-date listing of events from ASEA and within the autism community, please see ASEA’s web site. Just visit www.autismedmonton.org and click the “Events” button at the top of the screen! Special events will continue to be sent to members via e-bulletin. Do You Have A Story To Share? Autism Now would love to hear your stories - about your kids, your concerns, your family. For the next issue, we would especially like to hear from fathers about their experiences. If you have time to write, please email your articles to [email protected]. (All submissions must follow the submission guidelines posted at http://www.autismedmonton.org/autism-now- submission-guidelines/.) If writing isn’t your thing, send us an email or give us a call— we will be happy to talk with you and write an article based on your experiences. Autism Now would love to include a full spectrum of stories about living with autism.

26 AUTISM SOCIETY OF EDMONTON AREA www.autismedmonton.org Please return your completed form and/or donation to: Autism Society of Edmonton Area #101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

MEMBERSHIP APPLICATION 1. THANK YOU FOR YOUR ASEA MEMBERSHIP Thank you for joining ASEA. Membership fees contribute directly towards the Society’s ability to provide informational resources and services to families and professionals who support individuals with Autism Spectrum Disorders.

2. Name & Contact Information All information gathered will not be sold, traded or used for any purposes not directly related to ASEA Dr. / Mr. / Mrs. / Ms. (First)______(Last)______Dr. / Mr. / Mrs. / Ms. (First)______(Last)______Mailing Address:______City______PC______Telephone: (h)______(w)______(c)______E-mail:______2nd/work e-mail:______Occupation / Workplace:______Occupation / Workplace:______I am: ❍ an individual with autism ❍ a parent ❍ a relative: ______❍ a teacher/teacher’s aide ❍ an agency ❍ a professional 3. About your children Knowing the ages, situations and schools of your children helps us notify you about programs available and scholarships for siblings. Your child’s name______DOB______dd/mm/yy Are they autistic? ❍ School______Your child’s name______DOB______dd/mm/yy Are they autistic? ❍ School______Your child’s name______DOB______dd/mm/yy Are they autistic? ❍ School______Diagnosis (Optional) 1) ______2) ______3) ______

4. Type of Membership ASEA has simplified its membership offerings for your convenience ❍ $50 New family membership ❍ $100 professional / agency membership ❍ $50 renewing family membership ❍ $50 teacher / teacher’s aide membership ❍ *$0 assisted family membership * ASEA recognizes that some families are unable to afford annual fees. ASEA will consider requests for assisted family membership on a case by case basis. All inquiries will remain confidential. I would like to receive Autism Now by ❍ email ❍ by mail 5. Payment Memberships are renewed annually. Donors and volunteers play an vital role in sustaining services and creating new programs. ❍ Visa ❍ MasterCard ❍ AMEX ❍ Cheque (mm/yy) Card number______Expiry date______Please consider giving Signature______of your time or financial resources in addition Yes! I’d also like to make a donation to ASEA to your membership. ❍ $25 ❍ $50 ❍ $100 ❍ $200 ❍ Other______All donations over $10 are eligible for a ❍ Yes! I’d like to volunteer for ASEA – please contact me! charitable tax receipt.

Please return your completed form and/or donation to: Autism Society of Edmonton Area #101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5 27 E-mail: [email protected] www.autismedmonton.org

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