Autumn 2010 - Autism Edmonton · new information packages and brochures and provided them to...

Autism NowAutumn 2010

volume 23, number 3

AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Opening DOOrs gala spOnsOrs

2 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

BOARD OF DIRECTORSaUTisM sOCieTY OF eDMOnTOn area

eXeCUTiVeArif KhanJean AshmoreDr. Shane LynchOmair Peracha

MeMbers aT largeLaura Dumas Shane Hewitt Chris Kish Jasmin Kobajica Dr. David Nicholas Tom Shand Bonnie Stonehouse Alan Wagner

eX-OFFiCiO MeMbersDr. Deborah BarrettKaren Phillips

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.

AUTISM SOCIETY OF EDMONTON AREA #101, 11720 Kingsway avenue edmonton, ab T5g 0X5 780-453-3971 / 780-447-4948 email: [email protected] website: www.autismedmonton.org

PLEASE PHONE THE SOCIETY FOR AD PLACEMENT AND RATES

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Falling into Fall

In terms of our programs, we continue to be very successful, as well! I would like to recognize our Program Director Karen Phillips for all her hard work and creativity. Our programs continue to grow, with over 40 of them now taking place in various communities across Edmonton and area. In the area of public education and awareness, we partnered with the Glenrose Autism Followup Clinic; the Parent Training Series for Transitions was presented three times; and ten community workshops and presentations were delivered at Children’s Mental Health, Norquest College Health Education Centre, and the Grey Nuns Adult Dental Surgery Day Program, to name a few. We continue to have displays and information booths at public events, schools and universities. We have done extensive networking and collaborations with FSCD, Children and Adult Collaboration Teams, Alberta Disability Forum and Edmonton Regional Coalition for Inclusive Education. We continue to have Parent Groups, Adult Groups and Children and Teen Groups. And this is just a small sample of the many programs that our organization delivers throughout the year!

The 2009 Opening Doors Gala was the biggest ever and a huge fundraiser for ASEA. The leadership of Anita Ferri and Holly Brown was tremendous. And thank you also to Gino Ferri, Jean Ashmore, Ryan Gunter, Deb Barrett, Cherie Cohen, Karen Phillips, Erin Dubyk, Mark Lynch and Alan Wagner for helping make it a success. They are back at it again, and working very hard on the upcoming 2011 Gala. Thank you for your hard work and dedication!

Our hard-working and talented staff also dedicate great time and energy to all of our initiatives. I would like to take this opportunity to thank and recognize Yvette Prefontaine, Patricia Terrett, Simonne Lougheed and Linda Dowell. I’d also like to welcome Lynn Hughes, our Accountant/Administrator, who will be working with our new treasurer Omair Peracha.

As we move forward, we once again call on for your help. We will be celebrating our 40 year anniversary as an organization in 2011, and we need your support for two major new initiatives. First, we would like to increase our membership by 200 new

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President’s Message arif Khan

It is a tremendous honour for me to be a board member of the Autism Society of Edmonton Area and to be serving as its new President.

We have a very exciting year ahead of us. We have a terrific board that is very dedicated

and ready to work on behalf of all our families. I would like to take this opportunity to thank our outgoing board members Marcy Henschel, Mark Lynch, Holly Brown and Karen Bain. I would also like to thank our outgoing president Ryan Guenter for leading our organization and dedicating his time and effort to this wonderful cause. And finally, a special thanks to Jackie Ryan, who recently stepped down as our treasurer. We are very thankful for her services, and we really appreciate the time she dedicated to our organization over the years.

We have had a productive year of events and programs for children and teens with autism. One major highlight was our inaugural Cycle for Autism – I would like to thank Jean Ashmore for her tremendous leadership in organizing this successful event. Our organization has continued to focus on developing community awareness, supporting families and developing programs, and this year was a resounding success! We were covered in public media a record 30 times. We created new information packages and brochures and provided them to families of children who were recently diagnosed with autism. Over the past year we had over 28,000 visits to our web site www.autismedmonton.org, which features the latest ASEA news and events, information on programs and services, and more. We also helped get the word out about upcoming events through our e-Bulletins, which are sent out to all our members. Our presentation to the Rotary Club of Edmonton Mayfield and one-time fundraiser at the Riverbend Junior High Talent Show helped raise both funds and public awareness of autism. All these events were made possible through the hard work and dedication of our Director of Community Awareness and Development, Dr. Deborah Barrett.

members. Membership renewals are one of our major priorities, so if you haven’t renewed your membership, it is especially important that you renew it now. Our second goal for our 40th anniversary is to get 40 businesses/individuals in the Edmonton area to donate a minimum of $2,500 to ASEA for our Gift Fund. Our goal is to raise the additional funds to continue our programs, and also to hire an additional counsellor to assist families with their needs. Please ask friends, family and your business community to help in this endeavour.

Thank you again for your continued support on behalf of the countless families you are helping. I am so proud to be part of an organization that works diligently to promote autism awareness and support families who need our help.

About Arif R. Khan Arif R. Khan is the Director of Khan Communication Services Inc. and Khan Financial Services Inc. He is the Vice President of Western Canada for The Condo Store Inc. He graduated with a Bachelor of Science Degree from McMaster University and has a MBA Degree from Bellevue University, Bellevue, Nevada, USA.

Arif is an active member of the Alberta philanthropic community through his work as President of the Autism Society of Edmonton Area (ASEA), Board of Trustee for Project Shelter Wakadogo in Gulu, Uganda, Board Member of Aurora Charter School, Edmonton, AB, and Board member of Sturgeon Hospital Foundation, St. Albert, AB. Arif is also the incoming President for 2010-2011 for Rotary Club of Edmonton Mayfield.

Arif and his wife Nausheen reside in Edmonton with their two little daughters.

Education Matters What is Self-management?: Five Suggestions Karen Bain

Directly teaching self-control and self-management abilities is an essential part of programming for students who are overly dependent, as well as those who exhibit challenging behaviours. For many years, considerable interest has been shown in developing self-management in students having special educational needs, including autism (Janzen, J. E., 1996). However, clear goals and objectives related to self-control are infrequently articulated on individual program plans. Even students who have Positive Behaviour Support Plans often depend on adult or peer guidance to manage anxiety, communication and task expectations. In such cases, it is possible the student will remain dependent on environmental control rather than self-control.

Individual replacement behaviours and social skills must be taught initially, and then practiced in natural situations. There must be well-planned opportunities, with guidance, to increase initiation of those skills when and where they are needed. Generalization of new skills and building independence are the potential outcomes, but they cannot be left to chance. How can current external management programs and positive behaviour support plans be enhanced to ensure adult and/or environmental controls are decreasing, with a corresponding increase in student self-management?

A first step may be to review current behaviour programs to see if the following general skills are included in addition to the academic and social programming for each student:

• Communicationskillsrelatedtoaskingforhelp,askingfor a break, asking for clarification, expressing feelings of discomfort and stress

• Imitationofpeersrelatedtofollowinggeneralroutinesandcomplying with basic group instructions

• Problem-solvingstrategies

• Makingpersonal,effectivechoices

plugging your ears, that group is too noisy”; “you are starting to bang on the desk, do you need to ask for a break?” These statements may not only teach the student to prevent problem behaviours, but hopefully they will help students begin to make their own positive choices under specific emotional situations. When a student starts to rock or make loud noises, it is not uncommon for adults to make statements to other staff members such as “he is getting upset, so I am taking him for a walk”. Not only is the student not involved in making informed choices and totally dependent on adult intervention, but there is also the risk that the disruptive behaviours will be reinforced. He or she have effectively gained attention and escape from undesired tasks by rocking and making noise.

Fourth, for students who are able to benefit, provide practice for all social-emotional teaching through role plays, art, puppet play, children’s literature, and small group work following direct instruction and guided practice. Make sure skills and techniques are shared with home or caregivers consistently so they can be practiced across settings. Visual strategies should be matched to all social instruction as well. Visual prompts such as icons depicting “staying calm”, sequences of relaxation training exercises, and visual pictures showing how to raise a hand, wait for the teacher, and make a request can be valuable, and may be used in a variety of places.

Fifth, students may not be able to make good informed choices regarding behaviour until they understand choice-making in general, as well as cause and effect. Offer only choices and options that are practical and realistic. Going to McDonalds for ice cream is only a good choice if it is readily available and if the student has a clear understanding of time. Avoid too many choices, as they can be as stressful as the original situation. Make it easy to choose – even for verbal students, visual icons clarify choices clearly and can be touched to reduce the need for verbal communication if a student is particularly confused or upset. Make it possible to have “not this choice” or “no thank you” as an option in case the visual choices also promote upsetting behaviour.

• Readingiconsorvisualschedulesforthepurpose of following visual sequences and clarification of expectations

• Relaxation,flexibilityandexpandingrangeofinterests

Secondly, directly teach a problem-solving routine, complete with visual displays that may support the generalization of taught skills:

• Whatistheproblem?Definetheproblemandrelateddescriptors. (Example: teach how to identify feelings and triggers for problem behaviour. “I am feeling stressed, uncomfortable, overwhelmed with this assignment”)

• Whataretheoptions?Considervariouspossibilities.(“With” rather than “for”; students design ways to take breaks, relax, make choices for calming activities – “I can listen to music five minutes, take a note to the office, ask for help, copy or trace”)

• Whatoptionseemsbest?Whatarepotentialoutcomes?(Teach pros and cons of choices and the ultimate outcomes – for example, what happens when math is not complete vs. completed on time?)

• Tryitout;action.(Forexample:teachgooduseof time, active participation, working with a peer, communication skills related to asking for help, or asking for a break.)

• Howdiditwork?Monitoroutcomes.(Example:teachhow to evaluate what happened. Compare coping with stress by taking a short break and then getting the work done vs. procrastinating for a long time and still having the assignment; if a preferred activity is missed, make sure there is awareness of the loss.)

• Self-reinforcement(Teachstudentstounderstandwhatit means to feel proud, and the ultimate benefits of personal self-management and self-choice)

Third, provide clear instructional language to help identify what a student might be feeling. Don’t simply make assumptions without trying to have the student participate. For example: “you look worried, upset, happy”; “you are

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A focus on increasing future self-management abilities should be part of a comprehensive positive behaviour support program designed not only to immediately control behaviour, but also to teach skills for the future. Ultimately, outcomes of effective behaviour support programs should relate to a student participating in preventing his or her own problem behaviour, managing stress and personal communication independently, and making positive choices within a social environment.

[email protected]

Developmental Relationship-Based Therapy Bonnie Halstead Robson and Valerie Redekopp, Children Achieving More, Inc.

How do we help our children to develop and enjoy social relationships? Social-emotional development in children with autism is often talked about, but rarely addressed. Every parent wants their child to be emotionally connected, to have meaningful friendships, and to be able to deal with the ups and downs of life. But how can this happen when your child is either over- or under-sensitive to the world he lives in and the people in it?

Social-emotional development creates the foundation for thinking, relating and communicating – skills that typically developing children seem to acquire “as if by magic”, and which children with autism have difficulty developing. According to research, typically developing children process multi-sensory information faster and more accurately than children with autism. MRI findings prove that ASD is not a disorder in specific brain areas, but rather a disorder of the type of brain interconnectivity that is required for multisensory processing. Multisensory processing is what allows us to connect our internal emotional state with sensory input from external experiences, thereby giving life meaning. This “dual coding” of sensory processing and emotional regulation occurs in every brain, with the emotional experience being interpreted as either positive or negative, depending on how the child’s sensory system processes that experience.

For example, when an infant processes his mother’s smile and gentle voice in a typical way, mother and child experience positive emotions during the interaction. On the other hand, if the infant has difficulty processing visual and auditory sensations, the smile and gentle voice may be so overwhelming that he ends up connecting negative emotions with what should have been a positive experience. This is faulty dual coding, and it interferes with the building of the parent-child relationship, as well as every other relationship in that child’s life. So what can we do about it?

The missing piece in many school and home-based intervention programs is the identification and understanding of the social-emotional stages of human development. In fact, strengthening these foundational capacities should be the key focus of these types of programs. Funding provided to education or social service institutions does not focus on the importance of affective (emotional) processing. This appears to be because their professional frames of reference don’t allow them to recognize how learning depends on mastering the neurobiological developmental levels. Also missing is education to empower parents, who are their child’s primary emotional anchor, as their child works toward mastery, competency and resiliency in social-emotional development.

A key factor in social-emotional development is modulation. After physiological modulation of the sleep-wake cycle and hunger-appetite cycle is achieved, the child must be able to modulate emotionally. Emotional modulation is a skill that is essential to the relationship that is developed by sharing emotional experiences with an emotionally tuned-in caregiver. Another emotional milestone is the child’s ability to sustain modulation while engaging in back-and-forth interactions to share ideas with another person. Mastering the milestone of modulation during social interaction is what paves the way for children to remain engaged when social problems occur, and helps them remain calm as they figure out a solution. When a child with autism becomes aggressive, expecting and teaching him to say “sorry” is different from helping him notice, process, and have empathy for the child he just hit.

his neighbourhood or placed in a segregated setting across town. The Department of Education now defines “inclusion” in terms of the student’s acceptance and involvement in the school community. It is based around creating an educational program which helps the child grow, develop and be successful, but it does not depend on where the child is located. Unfortunately, since the word “inclusion” has a different meaning in the disability community, there is a lot of room here for misunderstanding.

The Autism Society of Edmonton Area has a booklet called The Rights of Students with Autism Spectrum Disorders. The booklet is available on our web site at http://www.autismedmonton.org/rights-students-with-autism and covers the following areas:

• StandardsforEducationofChildrenwithSpecialNeeds

• ParentInvolvement

• TheSchoolAct

• DisputeResolution

• HumanRightsResolution

As parents, we make the choice of integration with normally developing peers or segregation from normally developing peers based upon what we feel is in the best interests of our child. In practice, each placement can either meet the needs of the child very well or end up creating a harmful environment for our child. Whether or not the school placement works depends on many factors, not the least of which are: acceptance of our child and awareness that our child is doing the best he/she is able; the appropriate level of training and support for teaching staff; and the involvement of appropriate expertise to support the teacher and child when the child is struggling with adaptation.

Parents should be aware, however, that it is the policy of Alberta Education that students with special education needs be placed in regular classrooms in their local schools as a first placement option. Whichever placement parents choose, it will be important for children with Autism Spectrum Disorder to have lots of play and work time with children who have appropriate social behaviour, so that they can learn from their

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Changing behaviour is not the same as changing development. Intervention teams providing services to children with autism and their families would benefit from learning the milestones of emotional development. It would be useful for them to understand how mastery or constrictions in emotional developmentinfluencewhetherachildisrigidorspontaneous,controllingorflexible,hypervigilantorcalm,anxiousortrusting,a “black and white” thinker or a “grey area” thinker, and whether they grow up to be avoidant of or interested in the world.

The DIR®Floortime™ model of intervention, some of which is described above, is a good fit with the newly mandated “wraparound” approach for professionals who are interested in using a developmentally-appropriate method of intervention. It is a model that respects the individual differences of children with autism and their families, and promotes the ability to form strong and stable relationships. For more information on the DIR®Floortime™ approach, see www.icdl.com or www.ChildrenAchievingMore.com.

Parents Worry As Government Departments Work to Limit or Reduce FundingKaren Phillips

With the downturn in the economy, all Government Departments are under pressure to review how they are spending money, and most Government Departments are looking for ways to reduce their budgets. Change is what parents are experiencing, and we want to hear from parents about what is going well and what is not.

Education

All School Boards are implementing changes in the way they provide special education services in response to the recommendations of the Setting the Direction Review. Parents should be aware that when the word “inclusion” is used by school personnel, it may not mean what they think. A child may be considered by educators to be in an “inclusive setting” whether he is integrated in a regular classroom in

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providersincreasedflexibilityinprovidingserviceacross a group of children. Accountability measures have yet to be determined.

Things to Look for in FSCD

• Willtheservicesbeingofferedtoparentsimprovethequality of life for children and families?

• Willparentsbeabletomeetexpectationsandbecomeexperts in the care, behaviour management, treatment, case management, etc. of their child?

• Willallchildrenlearnthebasicsoftoiletingandself-carein their early years? (Independent toileting and self-care is associated with decreased risk of abuse for adults.)

• HowwillparentsandFSCDensurethebestqualityofcarefor the dollars spent?

• Willlimitedfundingleadtodecreasedtransparencyforparents about what services are available and lower levels of support for families? If so, what will be the long term outcomes for children and families?

Seniors and Community Supports, Persons with Developmental Disabilities, PDD

A major change occurred August 2009 when the Government of Alberta passed legislation declaring that only individuals with an IQ of 70 or lower can qualify for PDD funding. This means that no matter what the level of functioning of the 18-year-old, no matter how complex their disability or how many co-morbid disabilities they have, and no matter how severe their need for services, they can be denied PDD funding solely on the basis of IQ.

Few services are available outside PDD funded programs for teens and young adults with autism spectrum disorder and an IQ of 71 or higher. Parents are responsible for caring for their adult children, for the most part without assistance or resources, for as long as the adult child is unable to care for him or herself. This includes helping the young adult build a life – education, recreation, volunteer work or employment, supervision of

peers. Difficulty with appropriate social behaviour is the main barrier to success for youth as they move into their adult years.

Things to Look for in Education

• Withtheplantoremovethe“coding”processforspecialneeds funding, what will replace it?

• Ifteachersbecomeresponsibleforassessmentof special needs, what role will special education consultants play? Will teachers and students receive increased support in the classroom for speech and language services, psychological support, occupational therapy services, etc.?

• Willfundinginsegregatedsettingsbemaintainedovertime at sufficient levels to allow teaching staff to ensure good academic programming as well as participation and involvement for the students in the school community?

Children’s Services, Family Support for Children with Disabilities (FSCD)

FSCD is introducing a variety of changes as they attempt to deal with the ever-increasing number of children on their caseload, and specifically the increasing numbers of children with Autism Spectrum Disorder (ASD). Reviews of the Multi-disciplinary Team process, MDT (provincial) and specialized services (regional) have been conducted over the past year, and change is underway. We look forward to hearing from parents about their experiences with FSCD and their service providers as the changes are implemented.

The focus of FSCD is shifting from the treatment of the child to the education of the parents. Parent training courses and in-home parent coaching and mentoring are to be the focus.

The funding model has shifted from fees for service attached to the individual child, to a kind of block funding which is related to the needs of the child, but which allows service

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medical care, planning for safety in the community, etc. Many parents have no idea how to help their adult children build a life. I have spoken to many parents whose adult children are having serious difficulty making the transition to adulthood. In many cases, adult children also develop secondary mental health disorders, and if this occurs, they may be eligible for services under Mental Health; however, Autism Spectrum Disorder is not well understood by many in the mental health community.

Families whose adult children qualify for PDD funding may face similar difficulties. The caseload of adults within PDD is increasing, not so much because of 18-year-olds coming onto the caseload, but because of 40- and 50-year-olds with an IQ of 70 or under whose parents are now elderly and can no longer care for them. This has created a financial crunch for PDD at a time when the Government of Alberta is requiring that budgets for Departments remain the same or decrease. As a result, many parents are finding that even though their 18-year-old qualifies for PDD funding, they are told there is no money. As a result, the parents must continue to provide care, without financial supports or the services these supports can purchase. Only families who are experiencing a “health or safety” risk receive funding, even if their young adult child is eligible for PDD funding.

Parents may appeal PDD decisions, and some parents have reported success in having funding increased once their appeal was heard. If appealing, parents must thoroughly document the needs of their adult child and provide compelling evidence of the need.

Another change in PDD is the introduction of the Supports Intensity Scale (SIS). This assessment tool will be used with all new PDD applicants and, over the next three years, all existing individuals who are receiving PDD funding will also be assessed using this scale. It has been stated that this scale is meant to ensure greater consistency when determining individual support needs and granting PDD funding. Work is still underway to determine the approach for identifying related funding. There will be an increasing attempt to identify “positive outcomes” and funding may be adjusted or reduced if “positive outcomes” are not being achieved.

These steps are part of a broader review by PDD of its mandate. Part of this emphasis is intended to deal with “unsustainable increases in program budget & costs”. Of significance in this process is the fact that individuals who are now receiving PDD funding will be assessed using the SIS process, and based on this review they may have significant changes made to their funding levels. It is possible that if supports provided do not show “positive outcomes” the funding will not be continued for those supports. This has the potential to have a major impact on individuals and their families.

This information regarding the ongoing review and forthcoming changes was announced at a recent presentation by PDD at an Adult Disabilities Forum. The PDD representative was quick to add that individuals would not simply be cut off, but that a transition plan would be put into place for the individual and family.

I couldn’t help but think back to the comment of a particularly jaded colleague, who said that “Transition planning is what they say just before they cut your funding.”

Things to Look for in PDD

• Whatwillthechangesinmandateandthenewapproachtodetermining individual support needs and related funding mean for individuals and their families who already have ongoing supports in place?

• WillthePDDmandateshiftfromemphasizingsupportforinclusion in communities and as much independence as possible to a more limited role of health and safety?

• HowwilltheSupportsIntensityScalebeusedtoestablishfunding levels?

• WillPDDallocatestafftoassistfamilieswithtransitionplanning in those cases where individuals lose some or all of their PDD funding?

• Wherewilltheseindividualsfindservicesandsupports?Government is aware that significant gaps in service and


supports exist already for individuals with significant disabilities who do not currently qualify for PDD.

• Howwillfamiliesmanageinthosecaseswheretheirsonordaughter has been approved for PDD funding but has not been given any funds to purchase services? Particularly, what will happen when the child turns 20 and can no longer attend school?

• Andwhataboutalloftheindividualswithsignificantdisabilities who will now be excluded from PDD funding either through IQ or SIS eligibility criteria, particularly where there are health and safety risks for the adult child or family? What are families to do?

Look for Part II – The Bigger Picture and Matters of Conscience - in the next edition of Autism Now

Aspie MomentsVicki Prinsen

Aspie Moments are my own personal incidents of embarrassment, discomfort, strangeness, anger, or other assorted social awkwardness invariably precipitated by my Asperger Syndrome. Of course, these “moments” could happen to anyone, even non-autistic people, but for those of us with Asperger Syndrome, the frequency, severity, and resulting fallout merit a distinct category. So, in this article I present the first in what I hope will be a regular series of Aspie Moments.

Aspie Moment #1: Situation

I normally work until 3:00 or 3:30 p.m., but one day I finished work at 4:30, which was a bit later than usual. This meant that I was going to be leaving the building at the same time as the majority of my workmates. I left the office and headed to the elevators. I was a few steps behind a group of four or five people who were entering an open elevator, so I started to follow behind them.

But as I got close to the doorway, I heard a high-pitched whine coming from the control panel on the elevator. I sensed danger and my feet stopped working. My mouth went dry and I could not move. There must be something wrong with the elevator! Was it malfunctioning?

I stared at the people in the elevator and could not understand why they were just standing there like nothing was going on. As I stood there, although probably for just a few seconds, some people came up behind me and they had to excuse themselves to get past me. I was paralyzed. I didn’t know what to do.

Finally, after the rest of the people boarded, a co-worker who was pressing the Door Open button frowned at me and said, “Are you getting on or not?” I could hear irritation in her voice.

I took a breath and answered, “But why is there a noise? Is there something wrong with the elevator?”

Jean ashmoreKaren bainDeborah barretterik Cheung erin Dewar and backstreet Communicationsbonnie Halstead robsonarif Khanlynn HughesCathy lamoureuxJames langshaw

andrea lelandDaniel phillipsKaren phillipsVicki prinsenValerie redekoppKara reedlyda snyderTanna somerfieldroman sokolowskiandy sung

Thank You To Our Autism Now Contributors!

Your talent and hard work have made this issue of Autism Now possible!

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My colleague rolled her eyes and said, “It’s making the noise because I’ve been holding the door open for too long. So, are you coming in or not?” At this point, other people in the elevator were starting to stare. I did enter the elevator, and I managed to last the entire elevator ride before I started to cry from embarrassment.

Aspie Moment #1: Discussion

At the end of a long day at work, I am less able to effectively handle awkward social situations. The elevator ride was a reminder to me about why I try to obtain unusual or unpopular shifts at work. The situation itself passed, and I am sure my colleagues quickly forgot about it.

I struggle to effectively integrate in certain casual social situations, and that difficulty is exacerbated when I am especially tired or

facing some kind of new or unusual stimulus (i.e. an unexpected elevator noise). Therefore, having my work day come to a close at a different time than most coworkers helps me to end my day without any added stress or upset.

I also benefit from having a consistent schedule, or lots of advance notice when my assignment will change. I appreciate having some input when these things are under review, because then I feel I can have some small measure of control or choice, as opposed to having changes imposed on me. It has been really helpful for me to have an ongoing dialogue with my Team Leader at work regarding my schedule. He is aware and very supportive of my need to have someflexibilityin,andsomecontrolover,myassignedshifts.

4th Annual ConferenceJanuary 13-15, 2011

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DR. AMY WETHERBY:Improving Outcomes for Young Children with ASD:

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LORI FROST:PECS: Facts and Fiction

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Thoughts from Our Summer ProgramsAndy Sung

Last March, I was working on a research paper up in my graduate student office at the University of Alberta when I came across a very enticing email. It was a job advertisement for the position of Summer Programs Coordinator at the Autism Society of Edmonton Area. I was ecstatic!

Researching autism is a fascinating activity, but being a school teacher by trade, I really wanted to get back to being with children and young people. As a researcher, you muddle over papers, books, and studies. But you miss out on the giggles, silly moments, and even the wild commotion. This past summer, the Fun in the Sun Respite Camp, Junior Youth Leader Program, and Volunteer Work Experience Program reminded me once again just how special every moment is when you’re spending time with individuals who have autism.

This past summer was an absolute blast for our three programs. Our Fun in the Sun Respite Camp enjoyed another wonderful summer of action-packed day trips. Big highlights were our visits to the Zoo, Fringe Festival and Ukrainian Village. There was some disappointment along the way (one camper was upset because we did not actually go to Ukraine), but all in all, we had a wonderful summer.

And, while you may already be familiar with our Fun in the Sun Respite Camp, have you also heard about our Junior Youth Leader and Volunteer Work Experience programs?

In our Junior Youth Leader Program, teens and young adults with autism, aged 16 to 24 years, were hired to work in our Fun in the Sun Respite Camp. Each Junior Youth leader was supported with 1-to-1 job coaching. Our Junior Youth Leaders supervised children in our Fun in the Sun Respite Camp, while also working with their job coaches to build on communication, workplace interaction, and vocational skills. All of our Junior Youth Leaders did a fantastic job. And, while they started off with some assistance, they were soon teaching

our full-time camp staff new lessons, tips and strategies in how to better engage children with autism. The mentorship shown by our Junior Youth Leaders to the children and camp staff went well beyond all my greatest expectations. I thank our young people for challenging me to re-examine my own thoughts in many new and exciting ways.

In our Volunteer Work Experience Program, individuals with autism are matched, based on their skills and interests, to an organization within the community. As with our Junior Youth Leaders, volunteers are supported with 1-to-1 job coaching. Through this diverse program, we had a number of young adults this summer volunteering inanumerousofcapacities,fromprogrammingtheflightsimulators at the Alberta Aviation Museum to spending time with the elderly at the Kipnes Centre for Veterans. While our goal was for participants to find enjoyment through volunteering and gain new insight into the strengths they have to offer, I soon realized that the impacts of volunteering extend far beyond valuable hands-on work experience. Volunteering is much more than working on a computer or meeting a new friend. It is laying foundations for support networks that build up self-esteem, confidence, and success.

I felt particularly proud of one of our Youth Volunteers, because he is a former student of mine. Seeing this young man become so successful in his dog walking volunteer position really warms my heart, because I know just how far he has come. Watching our youth volunteers grow in their volunteer placements was a very humbling experience for me. Their shining example to the community is one for the rest of us to emulate.

I’m back at my desk now, working again in my office at the University. And, as I return to my studies, I want to show my deepest appreciation to the staff who made the Autism Society’s three summer programs a great success. We were so fortunate this summer to have staff with heart and compassion, dedication to their work, and tenacity to always do their very best. I definitely have them to thank

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for a fantastic summer experience. And on behalf of everyone at the Autism Society of Edmonton Area, I thank all the children and young adults involved for making our summer programs such a wonderful experience.

Mike Lake's Pancake Breakfast a Huge Success

a big thank-you goes out to Mike lake (Mp for edmonton - Mill Woods - beaumont) and his constituency staff for a terrific pancake breakfast on august 21. Despite the clouds, the crowds came out to meet Mike, learn more about autism, and raise $18,822.11 for asea's programs and services! Thank you to everyone who made it such a big success!

ASEA’s Community Experience Student Makes a Difference!Deborah Barrett

We all know that Alberta has many opportunities and a variety of programs for young children with autism. But many of us are not aware that teens and adults with autism face a vast

wasteland. With very few programs and fewer supports, most teens struggle to find meaningful community involvement.

Not so for Rahim Kanji. When Rahim, a teen with autism, was enrolled in the Autism Society of Edmonton Area's (ASEA) Community Experience Program in summer 2009, his interest in TV personality and professional builder Mike Holmes was evident. He was placed as a volunteer at Totem Building Supplies in Edmonton's west end and paired up with a support worker hired and trained by ASEA. Rahim thrived in this placement. When he returned to L.Y. Cairns School in the fall, Rahim continued at Totem for his Work Experience placement, with supports from L.Y. Cairns. This summer, Totem Building Supplies Manager, Paul Hobbs, felt that Rahim had learned so much and that it was only fair to hire Rahim as a part-time employee.

During the past year, Rahim's Woodworking Class began making picnic tables, and because of Rahim, the Woodworking Instructor contacted Totem and arranged to sell the tables, made by L.Y. Cairns students, through Totem. Manager Paul Hobbs says, "The tables were well made, and they went quickly.” As a result of the partnership, Totem donated a pallet of 2x6x8 lumber to the L.Y. Cairns Woodworking Class to help the school with their woodworking projects. Rahim and the woodworking students were on hand to see the fruits of their labour.

Many teens with autism struggle to find meaningful community involvement, but through the Autism Society's Community Experience Program, Rahim was able to find and succeed in an employment situation and make a difference to his school and community.


My husband Kent, a logical man who will be gone for the next several months, just shook his head in disbelief, wondering why I would choose to embark on such a crazy experience – especially with all the chaos our life already contains. Many other people felt the same way, but I was out to prove to them that this was going to be different than all my other ideas that seem to turn into complete disasters.

Each Gazette delivery day so far has been a story all its own, and they have all contained at least a little bit of humour. On the first day, Jake had to consistently drag his cart up to the door of every house and systematically take each paper out, fold it a certain way, and fix all the other papers that may have gotten shuffled while moving his cart. What was supposed to take an hour was turning out to be a 3-hour adventure. I just smiled and thought that, well, at least he is consistent and thorough – important life skills. Look at me, I thought, mom of the year! I will prove to everyone that I have what it takes to see them through this.

By week two we had a bit of a system, and my patience was still somewhat intact. As I watched my son Clay scurry to each house I beamed like the proudest mom in the world – yes, my boys were working. My thoughts were interrupted with the inevitable cries of “MOM!!!” – the so-very-familiar voice of Jake demanding something. Jake’s papers were curling up in the wind, and he needed that stopped. I explained that he had to deal with it, but he replied that he just couldn’t. We had about 80 houses to do, and after each house we had a meltdown because he could not control the wind. My proud motherly moment was now beginning to get a dark side. I guess it was about house number 70 that I lost it and started yelling to just get it done. Jake was crying, Clay was looking at me with that “not again” look, and the dog was taking a poop on one of the customer’s lawns, which put Jake into a further panic. No, I thought, gain control; we can do this. I ended up cleaning the dog poop, sent Clay to the opposite side of the street, and became Jake’s human wind protector for his papers. Whew, another “successful” week. Then came week three!

ItwasSpringBreakandIhadahorribleflu,butpapershadtobedelivered, so off we went. I knew I had little patience, as my head

ASEA Receives Autism Speaks Canada Community Services GrantDeborah Barrett

Autism Speaks Canada rolled out its very first Family Services Community Grants in early October, and ASEA was proud to be one of the recipients. The grant is for $25,000. ASEA’s project, Working Effectively with Adults with Autism, will involve the adult drama group/Autism Society Players, who will make a DVD that will form the base for workshops designed to train staff who work with adults with autism. We anticipate the finished DVD and training materials will be made available to other autism societies and service providers across Canada. “The board was very excited about this project,” said Suzanne Lanthier, Executive Director of Autism Speaks Canada, “because it is a creative way of addressing a need in the world of adults with autism that can be used across the country.”

Jake’s First JobCathy Lamoureux

The demands placed on parents are incredible on any given day, but the challenges can still increase when a Special Needs child’s future is being thought through. We face some difficult decisions: for example, when is it appropriate to let our kids begin working? I have been faced with that question for a few years now, as my 9-year-old ASD child has been trying to convince the clerks at just about every store we walk into that he is capable of working there. Most just chuckle and say to come back when he is 16. But what they don’t realize is that he has the memory of an elephant, and will probably indeed be back, ready to work, when he turns that magical age. One day, I snapped. As I listened to Jake and his 8-year-old neuro-typical brother Clay ask for just about every item they passed by in the store, I decided that if they are old enough to ask for stuff, then they are old enough to pay for it. Yes, I finally decided a job was a good fit. The next day they were hired to deliver the Gazette twice a week.

Please return your completed form and/or donation to:

AUTISM SOCIETY OF EDMONTON AREA#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

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felt like a lead weight and my nose ached, along with every other part of my body. I already warned the boys I could do very little but walk the dog and watch them. Things were going great: Jake even got a $5.00 tip from one lady he charmed by telling her to have a wonderful day every time he delivered her paper. Then we got to the next crescent. The wind had now picked up to about 60 km/h, and I knew that not only was it cold and miserable, but Jake was going to have issues, too. I prepared myself for battle and hoped for the best. I gave Clay his load of papers, and he was off. This made Jake very upset, as he was afraid that Clay would deliver to his favourite house with the really awesome mail box. As I became increasingly frustrated, I put his papers in the cart the wrong way, and Jake found that unacceptable, as well. I had the dog tied to my waist and my precious coffee in my hand as I tried to fix the papers. I dropped my coffee. I tried to save it, but Jake was focused on Clay screaming “Don’t deliver to #2!” when theunthinkablehappened:allthepapersstartedflying.Thewindgusts were so strong that it was almost slow motion.

IsatthereandwatchedJakeoblivioustoallthepapersflyingpasthim, as he was still fixated on what Clay was doing. Finally, I lost it. I was screaming like a mad woman with a lead head and achy body. Jake was standing there crying because he was not able to process which way to go. I am not sure what sequence of events happened next, but somehow we managed to pick up most of the strewn papers, collect ourselves and continue on. Jake was crying mournfully and repeating how sorry he was. I was feeling about as small a mom as possible for shouting and losing all sense of control. We were about six papers short. Jake would usually have huge problems with an incomplete job, but we were all so emotionally exhausted that I was able to convince Jake that it would all be okay, and we should all just go home.

We will soon be beginning week number 4 and, as a further chuckle, the boys have now decided to each purchase a guinea pig with their hard-earned money. Much to my husband’s horror (he is a farmer who cannot imagine us deliberately bringing rodents into our house), Agent Cuddles and Agent Scuttles have now joined our ridiculously chaotic and loving family. More on that next time!

We Asked. You Responded.Deborah BarrettAt this year’s Annual General Meeting, we wanted to know what you, the members and the experts on having autism or living with kids and adults with autism, could suggest to our Society. Here are your thoughts:

What do you like about ASEA?• Monthlysupportgroups,especiallyforolderkids

• Providingvenueforfamiliestoconnectandshareissuesareas of concern

• Knowledgeablestaffwhoareverysupportiveandaccessible

• Providespositivementoringopportunitiesforfamilies

• Acceptanceandopportunitypresented

• Programsforallagegroups

• Flexibilityofprograms

• Strongfinancialbase

• Voiceofadvocacy

• ValueACT(AutismCollaborationTeammeetings)andAACT (Adult Autism Collaboration Team meetings)

• InformativeandWelcomingenvironment

• Communityawareness

• Supporttofamilies

• Publications(qualityof)

• Informationpackages

• Supportslocalfamilies

• Solidreputationwithgovernment&mediasources

• Parent/Volunteerrun

• Autism Now (quarterly publication)

What could ASEA be doing better?• Increaseattendanceformonthlysupportgroups

• RetainASEAmembershipwitholderfamilieswho are not renewing (why?)


• Lobbygovernmenteffectively

• Increasemediaattention

• PromotethebusinessofASEA

• Providemoresupportforadultsandtheirfamilies

• Appropriatevenueforadultstomeetandnetwork

• Respiteopportunitiesforfamiliesincrisis-develop“Weekend Team” (Respite access before families are in crisis)

• Broaderspreadofprograms,i.e.Art–Music

• Increasecollaborationwithcrossagencies

• Helpfamiliesnavigatethesystem

• Efficientlyandeffectivelydealwithhighvolumeofcallsasking for support

• Housingissuesforolderadults

• Programsforadults

• BuildtheASEABrand

• Developfundraisingcapacity

What is ASEA doing that is the most helpful or of importance to you and your family?

• Advocacy

• Earningfamilies’trustinASEA

• Opportunitiestomeetotherfamilies

• Communityawareness

• Empoweringfamilies

• Capacitybuildingthroughcollaborativeeffortsoffamiliesand professionals

Did You Know?Kara Reed

The City of Edmonton has an Employment Outreach team! The team consists of four consultants who work within four communities across the city. My name is Kara Reed, and I am one of the consultants from the Outreach team. I have a degree in Community Rehabilitation and Disabilities Studies, and have been supporting persons with disabilities in various roles for the last 12 years. I have been working with the City of Edmonton for the past three years, and am excited to share about my role with you.

Part of my job is to work within the community to provide presentations about the initiatives that the Outreach team is working on, to share information on the recruitment process and how to apply for City of Edmonton job opportunities, and to explore possible partnership opportunities. The other part of my role is to work with City departments to provide education and promote the hiring of persons with disabilities, as well as dispel any myths that may exist.

I am always working to increase awareness of the City of Edmonton as an employer of choice, leading various initiatives that promote the hiring of persons with disabilities, and ensuring that the City of Edmonton is inclusive in our hiring practices. I recently met with Dr. Deborah Barrett and Karen Phillips from the Autism Society to discuss ways that the City of Edmonton can help prepare persons with autism to apply for City positions. We plan to continue working closely with ASEA to ensure opportunities for job-seekers with disabilities, including autism.

If you are looking for employment and are interested in seeing what jobs are available through the City of Edmonton, there are two ways to find this information. The first is visiting the website www.edmonton.ca/careers and the second is going to City Hall (#1 Sir Winston Churchill Square) to look at the job postings on the job board. If you see a position that matches your skills and qualifications, you can apply online by creating a profile (with

We asked, you responded

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a username and password) and uploading your resume. If you are having any difficulties applying online you can contact our Employment Assistants at 780-496-7872 or 780-496-7831, and someone will be able to assist you.

Congratulations, Dr. Lynch!

Congratulations to shane lynch, asea secretary of the board of Directors, who recently earned his phD in educational psychology with a specialization in special education from the University of alberta. Dr. lynch has been making big contributions to the world of autism research, and has been a tremendous asset to asea and the local autism community. asea looks forward to working with Dr. lynch and benefiting from his expertise for years to come.

Need A Guide to Adult Life? (Who Doesn't?)Deborah Barrett

Wondering about adult life for yourself or your child with ASD? Autism Calgary Association, in conjunction with the Vocational and Rehabilitation Research Institute, the Autism Society of Central Alberta and the Autism Society of Edmonton Area, has just released Adult Life with Autism Spectrum Disorder: a Self-Help Guide. The Guide is set up to help you get an overview of all areas of adult life for persons with autism, including adult diagnosis and treatment, legal and financial matters for children who will be turning 18, post-secondary educational options, employment opportunities and alternatives, community living, and personal relationships. Beginning with the premise that each person with autism should dare to dream about having a rich, full and meaningful life, the book goes on to provide practical information about resources that will help you or your child put the elements in place to make the vision a reality. The book is available from the Autism Society of Edmonton Area for $29.95. For more information, please contact the ASEA office at (780) 453-3971.

The Poetry of James Langshaw Introduction by Lyda Snyder

For the past several years I have been very fortunate to work as an educational assistant with fascinating and gifted autistic students. One of these students is James Langshaw, who recently began Grade 10. James and his mother Lisa are great advocates of educating the general public about Autism and Sensory Processing Disorder, and his openness and honesty in the classroom have been a great opportunity for both teachers and students to learn more about how his mind expresses itself. It took James many months to get to a point where he felt safe enough to let his personal fears be replaced by his own unique and creative expressions, both social and verbal. His yearly progress was delightful to watch as his true self tentatively emerged.

James graduated from grade nine at D.S. MacKenzie Junior High School this year with excellent marks, including the Ron Krachuck Award for being one of the Most Improved Special Needs Students. One of his favourite classes is Language Arts, where he has displayed a unique ability to write poetry and short stories. With permission and on behalf of James and his family we present this poetry, which offers tremendous insights into the mind of this very special young man.

Just BecauseJames Langshaw

Just because I’m autistic Doesn’t mean I’m selfishDoesn’t mean I’m evil Still try to accept me

Just because I’m autisticI can still do what you askI’m a human being tooI can create and converse

Just because I’m autisticPlease treat me like any other personI’m just as strong as youI laugh, I cry, I feel Just because I’m autistic – love me for my differences


SandJames Langshaw

Sand blows across the wastelandLike a swarm of locusts hungry from birthIt paves the road to the heat of the desertsAnd with the power of wind, it storms and ragesIn the calm, yet scorching savannah heat of the desert

Bull Durham CredoJames Langshaw

I believe in the power of spiritThe strength of courageThe endurance of heartThe wit of intelligenceThe perseverance of dedication Knowledge, patience, kindness

But without belief, we would not be humans, now would we? That has been thrown out the window, which I don’t believe

I believe in the power of loveI believe in the pureness of soulIbelieveintheinfluenceofrespectCourtesy, sympathy, mercy

And I believe in the fact that you must not just follow a path; make it yours and yours alone.

The Difficult WordsErik Cheung

If you’ve ever had difficulty speaking your truth, or advocating for yourself or your child, this poem may speak to you.

The layers are too numb to sense another stimulus. They simply slump against each other and wish a decision be cast by the one above. They collect the painful residue in their inner pockets and seal them with cross stitches of red threads, keeping them in, keeping them still.

Then my mouth began to inhale a silent moment, and the eyes dazed warily from menu to shelf.

The final syllable froze and stood by the lip. There, it pondered momentarily and decided to never take the leap. One that would have explained so clearly the intentions behind, clarifying all doubts, but it is now stuck about,

For a while longer… and another while longer.

Eventually the juggling verbs just jugged up in that moment, that very tiny space, that second so cautiously still, still.

As events began to move away, further and further away from that very speck of hope, or confusion, everything would be insignificant and wander astray. No matter now! We would end up forgetting or hide in ignorance, anyway. There will be others to reprimand and more others to straighten out in days.

Life is stuck with a big ‘IF’ right in the middle, commanding center stage. If… if…only if and more ifs…. If only the few really see and the handful deeply care. If only a few more would howl in unison…if only we never wake, if only we wake in dreams.

A stance that makes me much colder in that blue misty evening, I shiver negative signs all over, and more are on their way.

I step into winter, Exhale and disappear.

Power of wind

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Your generous donations make asea’s work possible!

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Does your Child Have a Diagnosis of Autism or Asperger’s Syndrome?

We need volunteers for a study on quality of life in youths with either diagnosis.

We are looking for youths who are 13-18 years old and their parents. We want to see if quality of life is affected by everyday living skills and if supports at school or in the community help. We will have the youths and complete some questionnaires about quality of life and living skills. We also want to understand the supports each youth has received and how that has helped them. The mailed questionnaires will be filled out at home and interviews will take place over the telephone. it starts right away!

If you want to find out more, please call at 780-735-7921 or e-mail [email protected] and we will send you the information.

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I do not speak without evidence to back up my words. I have both observed and remembered events and situations which demonstrate that wrath is unchained and unchallenged in this world, wreaking pain and destruction as far as humankind can spread it. Over the years, I felt many forms of wrath on many different occasions. Once wrath had broken free from the cage in my mind and had no outlet in the form of someone to blame, punish or vent my anger on, it would overtake me like a wild animal. Unable to control what I did or what I said, I committed many acts of which I am not proud - shattering a glass door by hitting it with all my might and leaving myself with a bleeding palm; wildly kicking and punching a desk until it splintered into parts. The most destructive acts were done to myself when there was nothing or no one to punish for my rage and it turned inward – for this is the nature of wrath. I clawed at my own body with senseless rage until the blinding anger subsided. Wrath in its purest form is self-destructive; this is the lesson I learned.

The worst part of wrath is the way it can change you. On one occasion a young man was in the wrong place, at the wrong time, simply having a giggle at how I was being picked on by a group of bullies. In my state, a blazing tempest of fury, a wild animal with no concern for human life and seeking only revenge against those who wronged me, his laughter was all it took for the animal inside me to see him as the enemy who had caused my pain. I attacked him mercilessly, kicking andpunchinghimuntilhefledfrommeinfear.Oncemyrage had been spent, guilt and fear rushed in to choke me. I had attacked another human being and a fellow brother on this planet, and I hid. I hid from my own emotions, hid from the animal I had become, hid from those who whispered of me attacking another and hid from the teachers who were surprisingly understanding. I had changed from a human being into the beast inside. I had allowed the beast to control me.

The peace officer who was involved learned how I was provoked by the others and, surprisingly, let me off with a warning. He told me not to let my anger get hold of me, no matter how much some junior high school children may deserve it. I nodded glumly. He thought I had learned my lesson and I had, but not from his words, nor from his forgiveness, and not

Wrath - The Demon Within Daniel PhillipsIntroduction by Karen Phillips

My son Daniel is attending Norquest College, taking upgrading so that he can apply for the Child and Youth Studies Program at MacEwan University. He just got his first assignment back from his English 20 course, an essay on Wrath (one of the seven deadly sins). He got 100%. For those of you who know me and have heard me speak of Daniel, you will know what an accomplishment this is. For those of you who do not know me, let me say that Daniel was coded in school for severe behavioural problems related to his ASD, ADHD and anxiety disorder from the earliest days until the end of high school. We actually began to see a shift in his behaviour as he was approaching the age of 15. It was the beginning of impulse control, that small hesitation before he spoke or acted. He is a very different young man at the age of 21 years, and I am a very proud mother. -Karen Phillips

In this twenty-first year of my life, I am a calm, soft-spoken young man who has reached a level of maturity that is common for my peers. I look, sound and appear normal to those around me, but if you had known me during much of my youth, you would not see the same person you see before you now. In my past I struggled against a force inside me which knew no mercy, no reason, no forgiveness, and no compassion for those who provoked it. This force sought to break the barrier that is the person who I am and erase the values which I hold so close to my heart. This creature, this most deadly of sins, is hate incarnate. This sin is wrath, and without the control I have learned over the years and the peace I have imposed upon it, I would not be who I am today. I know now that without peace, without control over wrath, this world is doomed to fall into a cycle of violence, destruction, and even death.

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Push To Open 2010 – Access Challenge in Kananaskis “Everyone Belongs Outside” Jean Ashmore

For the last two summers, our adult son has participated in a new and unique outdoor initiative developed by Alberta Parks. The intent of the Push to Open- Access Challenge is to provide a barrier-free outdoor experience to persons with disabilities. Through this event, our adult son with autism has had the opportunity to take his first trip in a sea kayak, as well as small supported hikes along the barrier-free trails in the Kananaskis area. While excursions like these are normally way out of his comfort zone, we also know opportunities like this are too rare to pass up, so in 2009 we threw caution to the wind and signed him up as a participant. It took some persuading to get him into the kayak, but the smile on his face once he got in was worth all the coaxing! While our son has not been open to much more than trying out the sea kayaks and doing a few short hikes, it is important that we seek out new experiences for him and keep encouraging him to try new things. There are also the great health benefits when we allow ourselves to connect with nature, and we want our son to experience this, too.

While most of the participants to date have issues with regards to mobility, the organizers also welcome individuals with ASDs and other developmental disabilities. They hope to include persons from all walks of life who have any type of disability that prohibits them from being fully included and able to access and enjoy unique outdoor recreational experiences.

from the knowledge that junior high kids could be so cruel. No, these were not my reasons for changing. The fact is, even if I did not know it at the time, I had become pure mindless vengeance seeking any outlet. I had become violence and destruction,andIwassinmadeflesh.Onlymanyyearslater,and with aid, could I learn to control this rage. I always look back on this event and remember, “With control and peace inside my mind and body, I will never again be that man. This control is so important to me and to the people of the world. May they learn through my mistake.”

All of this I take as evidence of the beast of rage, vengeance, revenge and the simple mindless violence that is known as wrath. In my own mind I know that animal is still inside me, deeply guarded and controlled now by years of experience and by my understanding of my weakness. I turn to the world and I wonder, “What if I had such an uncontrolled demon inside me again? What could this demon, which brings mindless rage, destruction of surroundings and hate of all life, do to this world if uncontrolled?” I look inside every time I feel the urgings of that inner demon, and ask myself, “Is it really worth losing who I am to this inner animal?” I pray you take my example and what I have learned to your heart; control the demon inside and find peace in everything you do.

Wrath


The event is hosted out of the William Watson Lodge (a barrier-free accommodation) in Peter Lougheed Provincial Park in Kananaskis. The kickoff event begins early in the week with a 5-day back country trip that is supported with specialized equipment and an enthusiastic group of volunteers. While the 5-day back country excursion doesn’t seem very appealing to our son, we hope this might change over time. The level of support for each participant varies, and many brought along their personal team of support staff where necessary.

This year our family were more volunteers than participants, and we spent the weekend helping prepare the seemingly endless amounts of food needed to feed the 100 volunteers and 9 participants involved in this year’s event. The weekend was both exhausting and fun, as we had the good fortune of spending time with the most amazing group of people who worked together to provide an experience of a lifetime for this year’s lucky participants.

To learn more about the Push to Open Access Challenge and to view the videos, visit the website at http://albertaparks.ca/pushtoopen.aspx

Scouts Canada – Northern Lights Council88th Polaris Scout Group

Are you seeking ways for your kid to connect with other kids?Are you looking for a fun, activity-based social group?

The 88th polaris scout group is geared towards youth with neurological or mental health conditions including sensory processing disorder, aDHD, learning disabilities, OCD, non-verbal learning disability, autism spectrum Disorders (including asperger’s), anxiety, Tourette’s, ODD, bipolar, schizophrenia, etc.

We are very excited about introducing the benefits of the scouting program to youth who may not have had positive experiences in community organizations in the past. Our goal is to follow the scouting program, but structure and support it in a way that ensures that our youth members experience growth, success and fun.

scouts Canada is a volunteer-driven, youth-focused, non-profit organization. Our mission is to contribute to the education of young people through a value system based on the scout promise and law, and to help build a better world where people are self-fulfilled as individuals and play a constructive role in society – a mission which becomes even more important for youth with special needs.

The exact composition and activities of this group will be based on the needs and interests of the participating youth, following the guidelines of scouts Canada. parent or caregiver participation is required to ensure a successful experience for all.

The group meets saturday mornings from 10:00 to 11:30 in the glenrose rehabilitation Hospital gym (10230 - 111 avenue). Feel free to stop by to check out our program, but please call first to ensure that we are on site that week. Our first meeting of the year is saturday, september 18; our group runs most saturdays until June. The cost for the year is $215/youth. We are running a cub section (ages 8-10) and a scout section (ages 11-16). We will only be offering a beaver section (ages 5-7) if someone steps forward to lead this section.

For more information, please contact either Carmen at Scouts Canada, 780-454-8561(email: [email protected]) or the parent liaison/Cub leader Sabrina at 780-461-2178 (email: [email protected])

Make memories you'll keep forever and share the adventure of a lifetime.

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EQ, IQ and Common Sense Tanna Somerfield

You may be aware that children with Asperger’s often score low on IQ tests, especially in the early years. In one test, my son scored an FSIQ (Full Scale IQ) of 76. I have heard and read reports stating that typically, Asperger kids bomb IQ tests the first few times around, then eventually do well. I am not a fan of IQ tests, or formalized testing in general, for that matter. In my opinion formalized testing is culturally biased and divisive. However, I believe Emotional Intelligence test scores are more important in terms of assessing an individual's character and level of moral development. Longitudinal studies also support that EI scores are more accurate indicators of future success and happiness in individuals than IQ test scores (Daniel Goldberg, Theories of Emotional Intelligence). If I were to identify a main area of concern regarding my son's Asperger's, I would have to say I worry most about his total lack of common sense and inability to generalize information across contexts. We have been working with him on common sense things forever, but I am still very reluctant to leave Billy with anyone unless they are not only familiar with Asperger's, but also aware of the unique ways Billy is impacted by his condition. I am not only an advocate for my son, but I feel like an ambassador for the condition itself. It seems I am forever educating the public and cautioning people not to be lulled into false perceptions of Billy. For example, adults often take for granted that Billy is socially and emotionally capable and high-functioning. In fact, he is neither. He is not self-directed, nor is he intuitive. Billy is mostly overwhelmed by interpersonal situations which involve interpretation of social cues, subtle body and facial expressions, idiomatic language skills and turn-taking in conversations. Billy is 10 years old, and wherever we take him, he presents himself as solid, intelligent, socially articulate and charismatic. He wins over the hearts and minds of people younger and older than himself. He dazzles people when he recites lists of birds, dinosaurs, planets, geographical information, and anything else

he loves, ad nauseam – yet he has no common sense. He just might attempt to pull his pants on over his head or dress up for winter in all the necessary apparel except socks and boots. In fact, he has gone out in the dead of winter with bare feet. Unless he is monitored and prompted, one can never assume he will follow the usual sequence of common conventions we neuro-typical people take for granted through the carefully calibrated clockwork of life skills, routines and daily regimes. However, he does have his rituals, and if he is not permitted to observe them, his behaviour escalates. He is a walking contradiction, yet he is not contrary or defiant. He simply lives in a series of his own private contextual frameworks along a spectrum of his own points of reference. His mind must be a marvellous machine. As disorders go, I tell people his is exotic. At times less so a disability and more a design – a design that seldom fits. He is a genre unto himself. So I have to shift shape now and then to make room for his unusual textures, temperament and fundamental design principles. I have found that when I take the time to find the perfect place to accommodate his unique form and function, he, just like a Picasso painting or abstract installation, not only fits in his own way, but always adds more to a room. He will often sweat in the summer until he has a headache and it won't occur to him take off the layers of clothing he wore in the morning when it was chilly; he'll walk into traffic if he sees a piece of garbage blowing; and the list goes on. It took him forever to learn to cross with the patrol guards, and the kids still have to prompt him; he is like a 2-year-old in so many ways. He is heavily medicated; off his meds… well, you cannot even begin to imagine! It takes a whole village to raise a child, and in Billy's case the village has to include a pharmacy and a diagnostic network of clinical psychiatrists and neurologists. I know you know this, but unfortunately very few people do...one second he is Einstein, the next, he is the “village challenge”.


Thank You to Our ASEA Volunteers! Jean ashmore Karen bainanthony barrett Deborah barrettJeff belch Marilyn CarrJordan Doucette linda Dowelllaura Dumas amelia Duplessisglen erickson gino Ferrianita Ferri sonja FjeldstromTeresa gagnon Kristen gillryan guenter Cleo HallsChristian Hansen Terry HarrisMarcy Henschel shane Hewittanita Homan lynn HughesDavid Jardine arif KhanChris Kish Jasmin Kobajicasandra Konrad seada Koralicroma Kurtz Chelsea lordsimonne lougheed David lougheedKelly lucky Mark lynchshane lynch ryan MacDonaldbonnelle Markham Claire McCurdyneil Mikalonis Mallory Morganrobyn Murray roopa MurthyKirsten nadeau srilanka nagelTina naqvi-rota David nicholaseric Oggletree Omair perachaadam peterson Karen phillipsKent phillips Yvette prefontaineCharlene prochnau Jaspreet raieugena rempel-Witten bonnie robsonJackie ryan leslie schmidtTom shand Kelly sheehyJenni shwetz sharon siubonnie stonehouse andrew sungsara symington richard Vanderwellalan Wagner liz Websterleanne Weidmann gail WyattKerri Wynn lonnie zwaigenbaum

Rogue and Her New Puppy Andrea Leland

Our home interview with an agency that provides assistance dogs didn’t go very well. I had high hopes for getting an assistance dog for my daughter Rogue, helping her and our entire family have a better quality of life. When we weren’t able to get a dog, it was a huge letdown and a big disappointment for all of us.

I am very reserved and shy around new people, and I think the interviewers from the agency took that to mean that I was overwhelmed, fearful and unprepared for a dog. They told me that I wouldn’t be able to commit to training a dog since my life is already so full of young children, and that they would consider reviewing us again in a year’s time. Worse still, they mentioned that even after being approved, there is still a 1 to 3 year wait before a dog becomes available.

So after I cried for two days straight, a close family friend took matters into his own hands and had a 12-week-old golden retriever puppy delivered later that week.

Rogue loves her, the kids love her. After just three weeks she can already come, sit, lie down, heel on and off leash, drop items, and fetch. She doesn’t jump up, and she hasn’t had an accident in the house in the last two weeks. I am looking into privatetrainingtohelpRoguewithherflight-riskissueswhenwe are out and about.

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Looks like we did have the time and commitment for a dog after all… it is really too bad that the agency we applied with missed out on an opportunity to help out the beautiful ray of sunshine that we all know as Rogue.

Talk to the Croc, the Kid Doesn’t Care Tanna Somerfield

With his crocodile puppet (A.K.A, Crocky, and don't you dare say he's a puppet), my 10-year-old son Billy has taken anthropomorphism to an entirely new level. He takes that thing (oh, I mean Crocky, his baby – technically my grandson) everywhere he can. He even wears him when he rides his bike, like some kind of Biker Code (if you don't know, don't ask). Crocky goes

everywhere with Billy – oh, if that croc could talk! The saga of Billy and Crocky is inexhaustible. Crocky is a gimmick, a tactic, a catalyst – just good business. When my kid waveshis“freakflag”highwhereverhegoes,it'snicetoknowthat Crocky upstages him. The lengths he goes to in order to include Crocky in his antics proves that the Asperger Wonder Boy, as I sometimes like to call Billy, is nothing if not committed. Commitment, in my opinion, is not only a virtue but a principle, solid as a fundamental law of nature. It’s a lot like gravity: you can not help but respect gravity; there is indisputable proof that we mere mortals are at the mercy of gravity, and anyone who has ever tried to defy gravity has experienced that empirical fact – ouch! Occasionally, however, a kid who does not know Billy will turn to me with a dumb-founded, gob-smacked, gawk, expressing

the unasked question: “what is he doing now?" I respond to these all-too-frequent, neuro-typical inquiries into my son's less-than-conventional behaviour with maturity, dignity and grace, usually saying something like “What, that? Ohhhh, all the cool kids are doing it – you didn't know? Sorry. Don't worry, you'll catch on soon." Having said that, I will share one final piece of practical advice, which I have gained over the years, wisdom I have honed the hard way: soup is not finger food. Oh, sorry; what I meant to say is, I have found that the best toys for Billy are self-contained toys with no moving parts, such as books, DVD collections (i.e. IMAX or Walking With Dinosaurs) and in this case, Crocky, the ultimate hand-puppet. I cannot take the credit for Crocky, though: that credit would go to my sister, Debbie. About 3 years ago she asked me what Billy wanted for Christmas. I was completely exasperated, having spent 2 years carefully wending and wading my way, knee deep, through an endlessassortmentoffloortoyssuchasLego,Zoobs,strawsand any other plastic, hard, thing he could lay his hands on to build with, so I begged her, "Please, no more puzzles, no more Connects, and nothing with moving parts!" "OK," my sister answered, groping for her car keys, looking a little worse for wear, "no problem; no moving parts!" I read her lips, then sank with relief into my couch, wondering why she felt the need to blaze out the door so quickly. Hmm, I thought, she's pretty stressed. I decided that Christmas I would give her a yoga DVD and massage mitt. That Christmas morning, Billy unwrapped my sister's package, and lo and behold, she ended up giving him an astronomy book, a toque, and Crocky. From that day on, Crocky and Billy have been inseparable. For my part, I am happy not to be skating through Lego, stepping on loose toys and constantly reuniting lost pieces with their original sets. But mostly, I am glad Billy has bonded with someone who is a constant companion, a confidant, an ally, and an unconditionally loving buddy – someone who has truly become a part of our family.


Events at a GlanceFor a complete, up-to-date listing of events from asea and the local autism community, please see asea’s web site. Just visit www.autismedmonton.org and click the “news and 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.

In Case You Don’t Know, Here’s What ASEA Does For Youasea offers a wide range of programs and services to improve the lives of people with autism, their families, and our entire community. some of these programs and services are only available to members. if you aren’t one yet, you and your whole family can join for as little as $50 a year— just fill out the membership form on the next page, or visit www.autismedmonton.org to sign up online!

asea relies on people just like you for the funds that keep us working in the community. We don’t receive any money from the United Way. all our revenue comes from memberships, donations, and fundraising events like our Opening Doors gala and Cycle for autism. We hope you will make use of our programs and services, and if you do, please consider making a donation or volunteering at our next fundraising event.

ASEA’s Programs and Services include:

• TheSummerProgramprovidessafe,supportedrecreational and social opportunities for children with

autism, while simultaneously offering families much-needed respite.

• SocialGroupsforChildren,TeensandGirlsgivekidsaged 9 – 17 opportunities to participate in community activities and make some friends.

• TheSupportedWorkandCommunityExperienceandWork experience placement programs give teens and young adults with asDs the chance to participate in employment situations and community activities.

• DiscussionGroupsandSupportGroupsforparentsof individuals with autism, with separate groups for parents of individuals with asperger’s, give parents the chance to share their experiences, network, and watch informative presentations on parenting issues.

• TheDramaGroupgivesyoungadultswithASDsthe chance to write and perform plays about their experiences with autism. Club Quirk and the adults with asperger’s syndrome support group are a chance for adults with as to share experiences and support, and just hang out.

But Wait! There’s More: Services You May Not Know About

While asea has many programs and services, we also work behind the scenes to increase community awareness about autism and provide information to families who suspect or have just received a new diagnosis. asea sends speakers to a variety of organizations to help them learn about autism. We also try to get media coverage for various issues, concerns and programs that are related to autism. asea is involved in initiating and promoting research projects to benefit persons with autism and their families, as well as spreading the information these studies bring to light. perhaps one of asea’s most important – but unseen – functions is our work with community partners, government and families to ensure that quality programs and services will be in place for children and their families throughout their lives, from childhood into adulthood. You may not realize it, but until only a few years ago, the glenrose did not provide services to children of school age. asea worked to change that. Today, we are focusing on creating appropriate community options for older children, teens and adults.

For a complete listing of ASEA’s programs and services, please visit http://www.autismedmonton.org/our-programs-and-services

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Please return your completed form and/or donation to:AUTISM SOCIETY OF EDMONTON AREA#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5 E-mail: [email protected]

Please return your completed form and/or donation to:

AUTISM SOCIETY OF EDMONTON AREA#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

MEMBERSHIP APPLICATION1. 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 ❍ other: ______________________

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 ________________ ❍ 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

Card number __________________________________ Expiry date ____________

Signature ______________________________________________________________

Yes! I’d also like to make a donation to ASEA

❍ $25 ❍ $50 ❍ $100 ❍ $200 ❍ Other _______________________________

❍ Yes! I’d like to volunteer for ASEA – please contact me!

dd/mm/yy

dd/mm/yy

dd/mm/yy

(mm/yy)Please consider giving

of your time or financial resources in addition

to your membership.

All donations over $25 are eligible for a

charitable tax receipt.

www.autismedmonton.org

Return undeliverable Canadian addresses to:Autism Society of Edmonton Area

#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

Canada Post Publications Mailing Number 40020698

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