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Adult Autism Issues in Waterloo-Wellington (AAIWW)

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Adult Autism Issues in Waterloo-Wellington (AAIWW) ADULT AUTISM ISSUES IN WATERLOO-WELLINGTON Joint newsletter of Guelph Services for the Autistic and Waterloo-Wellington Autism Services AAIWW Newsletter No 19, April 2003 Do you wonder …. WWAS BULLETIN BOARD what it’s like to be me? Annual General Meeting of by Andrew who types instead of speaking Waterloo-Wellington Autism Services rd Tuesday 3 June 2003 at the Stanley Park Baptist I’m a bundle of sensations Church, 31 Lorraine Ave, Kitchener. I get the urge Current members of WWAS will also receive formal to touch and pick notices of this meeting. Agenda: and I must follow my urges. 7 pm - Registration 7:30 pm - AGM business meeting Can you see my urges? 8 pm - General discussion of adult autism issues, with I can’t tell you refreshments. Representatives of the three local I just show you. chapters of Autism Society Ontario and of Guelph Services for the Autistic are being invited, so we can share ideas about priorities and problems in our I’m a bundle of nerves region. There will be reports on current WWAS and a jumble of thoughts. projects: the Victoria Bloomfield Bursary program, I’m in constant motion progress of ASPIRE, and the forthcoming launch of and my mind’s always going. the Kitchener Public Library’s Autism Collection. I wonder what it’s like to be you. The WWAS Board invites applications for Victoria Do you wonder what it’s like to be me? Bloomfield bursaries. Since early 1996, WWAS has I’m a time bomb waiting to explode offered one-time grants of up to $2,500 each to individual adults with autism/pdd to help make a We neurotypicals on the sidelines do difference in their lives by developing abilities or wonder what it’s really like. We can learn obtaining therapies for which funds are not otherwise available. The bursaries are named in honour of the more from the growing number of books by WWAS volunteer who helped to plan this project but people who live with autism (see the was killed in a traffic accident in February 1996. commentary and lists on our Books on the More information and an application form are Autism Spectrum pages inside). enclosed and also posted at http://www.ont-autism.uoguelph.ca/wwasbursary.shtml We who are parents, siblings, friends and Please become a member or renew your membership caregivers of persons with autism also need of WWAS. Cheques of $25 or more qualify for tax- to take to heart the good advice of David creditable receipts. As a member, you have and Fay Wetherow about the value of true opportunities to share concerns, ideas and hopes community, in “Keeping the Balance.” about issues relevant to people with autism and their caregivers. You are eligible to vote at general INSIDE THIS ISSUE: pages meetings and to be elected to serve on the WWAS Keeping the Balance 2-3 board of directors. You also receive AAIWW. Books on the Autism Spectrum 4-7 AAIWW Bulletin Board 8, 7 Please make cheques payable to WWAS and send with WWAS Victoria Bloomfield Bursaries 9-10 a note of your name, full address and phone number, to William Barnes, 26 Yellow Birch Drive, Kitchener, AAIWW is published 4 to 6 times a year for N2N 2M2. Waterloo-Wellington Autism Services and Guelph Services for the Autistic. Keeping the Balance by David and Faye Wetherow AAIWW 19, April 2003, p.2 As parents of children with disabilities, one of the vulnerabilities we face is the prospect of personal isolation, a thinning out of relationships to the point where our family’s circle (and ultimately that of our child) narrows down to service providers and 'others like us' – other families who have children who live with disabilities. This ‘narrowing’ stems from four sources: whose lives are anchored in the larger world, the · It is an unhappy fact of contemporary North broader cultural, economic, congregational, American life that people remain uncomfortable cultural and social environment... with disability in general. And people may be q If it is true that our child's development can be particularly uncomfortable when someone close to greatly enhanced by loving and enduring them is ‘struck by’ a disability. We ‘don’t know connections to other children and adults who help what to say’; we ‘don’t want to interfere’; and we us define our identity -- who shape our are afraid that if we open up communication we understanding, expectations, hopes, social will touch a thread of sorrow that may be expressions, etc.... uncontrollable; q Then it is important to focus at least as much of our effort, thinking, learning, and personal action Fear is the mind’s reaction against the inherent in the direction of 'the boundary with community' generosity of the heart. Because the heart knows as we invest in 'the boundary with the service no bounds to its giving, the mind feels called upon system'. to define limits. - Ram Dass What does this mean in practice? · Because our society is uncomfortable, the family is · Working on 'the boundary with community' doesn't likely to feel uncomfortable about the prospect of mean excursions to McDonalds. It means an ‘being a burden’ to their friends; we become intentional pattern of invitation, conversation, deep reluctant to ‘impose’, to ask our friends to extend listening, dreaming together, reflection, sometimes practical assistance; repentance and forgiveness, and always · The family may find themselves overwhelmed in celebration. terms of time, energy and attention by the child’s · Working on 'the boundary with community' doesn't specific needs and the new demands of engaging mean recruiting community members into the with ‘the system’. As any parent can tell you, world of disability. It means remembering caring for a young child seems to take up all of (another form of conversation) that we are all part your time. Caring for a child with a significant of a larger world, and that a great community disability is likely to be even more demanding, and systematically identifies, mobilizes and celebrates the parents may find themselves swamped with the gifts of every one of its members. disability-related appointments, meetings, support · It doesn’t mean just yearning for connection. It group gatherings, and so on; means taking the difficult step of asking for · Finally, in North America, family and community involvement. It means coming to terms with the ties are fragmented at the best of times. Our fact that true friendship is woven of threads of joy society prides itself on being highly mobile, and threads of sorrow. And it means taking the independent, ready to ‘move on’ at the slightest even more difficult step of coming to terms with whim or to relocate quickly in a search for our own self-isolating behavior. solutions to economic, social or family problems. · Finally, it means recognizing and consciously However (and this is a big however)… resisting the powerful magnetic attraction of formal service systems, especially when q If it is true that the quality of our child's life (and his family’s life) will be greatly enhanced by the professionals and other parents keep sending us the presence of a large circle of people who know him, message that "The most important work you can love him, aren't afraid to touch him or to be do as a parent is to get skilled at finding services, touched by him, and know that they will be part of using services, advocating for services" (a his future and he will be part of their future, regrettably consistent emphasis in early forever... intervention services, child guidance clinics, diagnostic and treatment centers, advocacy groups, q If it is true that our child’s opportunities will be and disability 'support' groups). greatly enhanced by long-term, thoughtful, on- · purpose connections with many 'civilians' – people Of course, these conversations are difficult at first. It is difficult to say to our old friends, "I need you more than ever now". It is difficult to say to our AAIWW 19, April 2003, p.3 church, "More than ever, we’re called to be community for each other". The good news is that Ø And where ‘we hear people singing’ because people are yearning to be asked. We’ve so often people are making music, rather than consuming heard people say, “We wanted to do something, music, making art rather than consuming art. but we didn’t know what to do”. The reality is that even with children who do not live Some time ago we developed a graphic of a 'family with disabilities, the family isn't 'big enough' to do pattern' – an intentional pattern of thought and action that, everything alone. Our highly mobile, fragmented society is ideally, should be 'there' for any child, in any family. You living with the consequences of fragmentation, as families can find it on the Internet at: become more and more separated from extended family, http://www.communityworks.info/familypattern.html friends, congregational life, and community life. This is a As we begin to navigate the boundary with the far more pressing reality when a child lives with a community (Faye suggests calling it a shoreline), we make disability – the family just isn't 'big' enough. We may try a discovery. Beyond the ‘sweet places’ of friendship and to fill the gap with 'services', but the truth is that our sons extended family life, there are other places in the and daughters need the ongoing commitment, support, community that can be particularly welcoming and fruitful. devotion and connections that can be offered by true Think about the places where people feel most deeply friends, and which can never really be 'delivered' by formal valued and deeply ‘at home’ – our churches, synagogues services.
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