Three Stressful Mistakes

Kitty Parlby
My name is Kitty Parlby. I am:
  • the mother of a son with severe autism
  • a special needs Educational Assistant
  • a speaker/presenter on the subject of autism
  • a member of the Board of Directors for Autism Alberta
I would like to share with you….

Three Stressful Mistakes Made By Autism Families Who Live in Small or Isolated Towns/Villages and Remote or Rural Communities in Central Alberta

1. Reading up on and using only one type of autism strategy

There are MANY Autism programs, treatments, theories and approaches. Knowledge is power. Read books, listen to webinars, go to workshops, share knowledge and experiences with other autism families. Absorb all you can in whatever way works for you!

2. Not knowing about all the resources that are available to you

When you don’t live in or near a big city, you may be wondering where to get services or assistance for yourself or your family member with autism. Chasing down your available options can cause a huge amount of stress to you and your family. Being connected with the autism community and other members of Autism Alberta allows you to tap into the experience of those who have been there.

3. Going it alone

Are you and your family super-stressed with the challenges you face? Do you have a support network of people you can talk to who understand what you’re going through and won’t judge? We all need support!


Autism Alberta Want To Help!

You can join our Facebook group: Autism Families Rural/Small Town Central Alberta

You can become a member of Autism Alberta (it’s free!) at www.autismalberta.ca

Or … e-mail me at parlbyrw@telusplanet.net

We would like to provide educational webinars or podcasts. Send us your topic ideas.

Autism Alberta has partnerships with Dr. David Nicholas (U of C), Dr. Tony Bailey (UBC) and the Cariboo Chilcotin Child Development Centre to look into ways to better engage individuals with autism and their families in small towns and rural and remote regions.

Jeff’s Marathon Journey – November Update

Jeff Bowers
Well, it’s done. November 6th has come and gone, and I’m happy to say that I made it safe and sound to New York, and completed 42.2km through the five boroughs in what has been confirmed as the largest marathon ever! Our final tally on the fundraising was $4,407. I’m very happy that I was able to raise these funds, and I’m sure they will go a long way in helping the recently re-branded Autism Society of the Regional Municipality of Wood Buffalo (formerly the Fort McMurray Autism Support Group) as they continue their efforts to make life easier for families affected by life on the Autism spectrum in the region.

The marathon itself was definitely everything I expected it to be and more. After planning and training for 16 months, the final 20 weeks of which were an all-out effort to reach marathon fitness, it was a truly surreal experience to approach the start line on Staten Island shortly after 10:30am on Sunday morning. The week leading up to the marathon was a little stressful. Six days out, I woke up with a scratchy throat and a stuffy nose. Fearing the worst, I dropped by the pharmacy on the way home from work and picked up an ample supply of vitamin C, Cold FX, and zinc lozenges. I also made the last-minute decision to give my body a full week of rest leading up to the big day, against the wisdom of the structured program I had been following for the past five months. I figured if there was anything that could possibly derail my run, it was a bad cold, and the best way to try and prevent what I was feeling from worsening was to rest and medicate. The cold didn’t completely go away, and I feel like it did play a factor in my slightly slower-than-hoped-for finish time – more on that near the bottom.

Yeunsuk and I departed from Fort McMurray in the wee hours of Friday morning. We arrived in Manhattan early that same evening and checked into our hotel before quickly heading out for a brief walk through Times Square. Saturday was spent mostly at the race expo, where I picked up my bib and got to meet face-to-face with some of the people I had spent the past twenty weeks virtually training with. Friends of ours arrived from Nova Scotia later Saturday evening, and we checked into our AirBnB condo near Central Park after meeting them for dinner. My rise on Sunday morning was scheduled early at 5:15am, so Saturday night didn’t bring much in the way of excitement. Nonetheless, I didn’t sleep a single wink that night. I gave up on trying and got out of bed at 5am to grab a quick shower before heading off on the “marathon before the marathon” that runners in New York have to deal with. One of the things I had read lots about, and was mentally prepared for, was the nearly six hours of travel and standing around before finally crossing the starting line.

I left the condo we were staying in near Central Park and walked a couple of blocks before catching the subway. I took the subway for about thirty minutes to the South Ferry terminal, where I waited outside to meet a good friend of mine from my days in Korea, Dave. Dave is originally from New Zealand, and had travelled all the way from Australia to run the marathon. After meeting Dave outside the terminal, we proceeded inside to catch our ferry to Staten Island. The lines were huge and slow-moving. We eventually got on the ferry, and were lucky enough to grab a seat for the thirty-minute ride. After hopping off the ferry, we stood in line in the terminal on Staten Island for about 45 minutes before boarding a bus to the athletes’ village. The bus ride was a slow crawl, taking about an hour before reaching our destination near the base of the Verrazano Narrows Bridge on Staten Island. We had a brief wait again before going through airport-level security and entering the village.

My wave was scheduled to cross the start line at 10:40am, and we had arrived at about 9:00am, which gave us plenty of time to find our bearings, chow on some free bananas and bagels, and frequent the port-a-potties. Dave was seeded in an earlier wave than me, so we said our goodbyes and he departed to his corral. I checked my watch and realized I had about 30 minutes before the gun sounded to start my journey. Before I knew it, they were calling my wave, and I entered my corral and started the slow walk to the start. As we rounded the corner, I could see the start line in the distance, right at the bottom of the bridge. After the singing of the national anthem, the canon banged, and we were off. Frank Sinatra serenaded us over the start line with his classic “New York, New York”, as is customary for the NYC Marathon.

The marathon was an amazing experience. Everything you read about this race is true – it really is the world’s biggest block party. The crowds were out in full force at an estimated 2 million(!) and lining the streets of Brooklyn, Queens, The Bronx and Manhattan. Bands were set up in each neighborhood, and the lines of spectators were 3-4 people thick on both sides of the road. The noise was at times deafening, and there was lots to look at and keep busy with as we wound our way through the city. I had planned to meet Yeunsuk, Kirk and Ashley at two separate locations on the run. The first location wasn’t until the 30km mark, and the second was at about the 37km mark. Seeing them in the crowd gave me a much needed boost at the first point, as at that point I was starting to drag a little. The second sighting was even more crucial, as I had hit the dreaded “wall” and was really struggling as I entered the final 5km of the race.

I crossed the finish line in Central park with a time of 4h:38m:45s. My time was slower than I had hoped – I had set a goal for myself of 4h:12m. I didn’t feel too bad about it, however, as there were some circumstances that I hadn’t accounted for. First, there was the cold I was fighting and the resulting lack of training during my final week. Although I did feel OK through most of the race, I do feel like I could have had a better run had I had a completely clear chest, and managed to keep my legs alive during the final week. The complete lack of sleep the night before was probably as damaging to my time as my cold was. Probably the biggest reason I didn’t reach my time was my low seeding at the start line – which, I’ll admit, was completely my own fault. I entered the lottery for the NYC Marathon over a year ago, and upon doing so I was asked to estimate my finish time if I were selected. At the time, I was fresh off my first ever half-marathon run, and had no idea the gains I would make in fitness in the next twelve months. I entered my estimated time of 4h:45m, which resulted in me being seeded at the start with runners of a similar ability. This was probably the most frustrating part of the race for me – I was forced to stick behind some really slow runners in the first 10 km or so of the race, as there was no room for weaving and passing. By the time I was able to open up and try and catch my pace a little, I was already well off my goal time. After realizing this, I decided to just enjoy the race and not worry about the time.

After the race was finished, Yeunsuk and I stuck around New York for a few days to do the tourist thing before returning home the following Thursday. Ben and Jessie had spent the week with my parents, and were already in bed when we arrived late that evening. One of the most stressful things leading up to the trip was not knowing how Ben would react during our absence. He has always had a special bond with my parents, and if there is anybody we are comfortable leaving him with for any amount of time, it’s them. This was unprecedented for all of us however, as the longest we had ever gone away for was 2 days. I’m happy to report that he had a stellar week with Nanny and Poppy. His yo-yo sleeping habits were on their best behaviour, and he slept well through the entire week. He even added a few new words to his ever-growing vocabulary while we were away. When we woke the kids up the following morning, they were very surprised and happy to see that mommy and daddy had returned.

This past Saturday, some of the funds raised through this effort were used to host a “movie day” at the local theater for members of the ASRMWB. Our family had the opportunity to attend one of these movie days a few years ago shortly after Ben’s diagnosis, and we really enjoyed it. When asked if there was anything in particular I would like to see the funds go towards, my first thought was to see a similar event hosted. This time around, the kids got to watch the movie “Trolls”. I was happy that both Ben and Jessie were able to enjoy the entire movie. I really enjoyed the popcorn with butter and a large Coke. It’s the little things you miss while training for a marathon!

If you’ve donated to the Autism Society of the Regional Municipality of Wood Buffalo, thanks again from the bottom of my heart. The society recently opened an office in downtown Fort McMurray, and are looking at increasing fundraising efforts in order to ensure they can keep it running. The goal of the members is to eventually open a centre for Autism in Fort McMurray similar to those that can be found in larger cities around the province. Kirsti Mardell is a local parent who has taken it upon herself to organize the community and make a push to realize this vision. Any support or donations will go a long way in helping all members of the society, myself and my family included.

Lastly, thanks if you’ve taken the time to read my updates over the past eight months. I’m signing off now, but you may hear from me again in the near future. I’ve just entered my name in the lottery for both the Chicago and Berlin marathons in 2017. Neither are guaranteed, but one may be in my future.

There is still time to support Jeff and the Autism Society of the Regional Municipality of Wood Buffalo! Click here to make a donation for Jeff’s Marathon Journey – We’ll be accepting final marathon donations until the end of Monday, November 28.

Introducing the Peace Autism Society

Nicole Collison

My name is Nicole Collison, and I am the president of the Peace Autism Society. We are a small group run out of the Grande Prairie Area, and although the society has been running for two or three years, I feel that we have only just started building our membership! Our vision statement reads:

“We see a world where individuals with Autism Spectrum Disorder (ASD) are valued participating members of their community, regardless of their abilities. All individuals have the potential to thrive and succeed when supported by caring and knowledgeable families and professionals.”
Our immediate focus is on providing support and personal connections for all families dealing with autism. We have monthly meetings to take care of the “business” side of the society, but also to provide an outlet and time for conversation, brainstorming and problem solving around issues affecting our families. In addition, we have social events in which our children – those with ASD as well as their siblings – can play together in a safe environment while their parents socialize with other families. We have found that because we serve families throughout the northern region of Alberta, including Peace River, Sexsmith and Grande Prairie, families often report that they feel very isolated by the effects of autism on their daily life. We are working hard to connect with these families and make them feel less isolated.
Our next meeting will be held December 5, 2016 at 7 p.m. at the Grande Prairie Public Library. If you are interested in becoming involved, please feel free to contact me at peaceautismsociety@hotmail.com.

Fort McMurray Autism Non-Profit Opens with Hopes for Future Centre

Travis McEwan, CBC News
From the CBC News website:

Kirsti Mardell got the keys this week for an office where Fort McMurray’s autism society will soon set up shop, good news that came five months after she and other members fled the wildfire with their children.

Many society members went to Red Deer or Edmonton in the days after the wildfire. The forced evacuation was especially stressful for autistic children, who need specific help and programs most children don’t require.

A handful of society members haven’t returned since the city reopened in June, because the supports and classes for their children were better than those provided in Fort McMurray.

“We evacuated to Red Deer and we were well set up there, and the services we got kicked in right away,” said Mardell, president of the Autism Society of the Regional Municipality of Wood Buffalo. “Our kids had support in school right way. It was amazing how fast and supportive the other communities were compared to Fort McMurray.

“It made me want to do more in Fort McMurray. But because we were so well set up, it was hard to come back.”

Mardell and her family, which includes her autistic son, 6-year-old Quentin, are back in Fort McMurray. Her support group may have lost members since the fire, but she said she’s getting interest from new members and is starting to look for families in the surrounding communities.

Read More

Latest News from ASRMWB

Autism Society of the Regional Municipality of Wood Buffalo is excited to tell Autism Society Alberta about all the things we have been up to since evacuating our city just six months ago. Since our return home, we have formed our new board and started our society. We now have an office and have started our sensory store, lending shelf and our lending library. We will also be starting up our support group meetings again for parents next month in the office.
We also have one of our early education programs, Educare, putting on a support group for parents. Parents can bring their children with them so the children can have time in the sensory room, and the parents can have a break to talk with one another.
The Autism Society has started to reach out to our surrounding communities (Anzac, Janvier, Conklin and Fort McKay) to see what they feel they are lacking in supports and how we can help them. We are also preparing a sensory bin for them to utilize in early entry programs. The next community we are reaching out to will be Fort Chipewyan.
It’s been a busy month! We’ve scheduled the following community events and fundraisers for November and December:
  • Selling poinsettias and wreaths for the month of November
  • Movie night on November 19th

  • Dr. Anthony Bailey

    Disability Day on Nov 26th

  • Christmas market on the December 3rd
  • Christmas party on December 11th
  • Coat check on December 16th
So far we have planned for about one event a month, and are very excited to be preparing for our upcoming visit on November 29th from Dr. Anthony Bailey, who will be giving a talk on Autism 101 and transitioning through school into adulthood. The talk will be followed by a Q and A after for parents and professionals. We are also thrilled to offer another community engagement session in April 2016 with Dr. Deborah Barrett, Dr. David Nicolas and Nancy Gale. All the best from Autism Society of the RMWB – We’re looking forward to keeping you updated on our upcoming activities.
Sincerely,
Autism Society of the Regional Municipality of Wood Buffalo
780-742-4424
AutismSupport@AutismRMWB.org

Little Victories

Jessica Pigeau
Have you ever lost something?

I don’t mean in the sense of losing a phone or losing one’s keys – I mean losing in the sense of being beaten, of trying and failing some challenge or trial. It’s a painful experience, to try and be found wanting. It hurts, to give one’s all and fail. Nonetheless, I recommend it, at least some of the time.

I’ve lost a lot in my life. My youth was that of the unathletic, socially awkward, and often oblivious – unapplauded, lonely, and usually confusing. I was smart, sure. I was always smart, but few outside of my family were willing to invest much time in a strange, dreamy kid who didn’t seem particularly motivated or interested. I didn’t win things – I was at best mediocre at most pursuits where medals are handed out at the end. At worst, I simply didn’t understand how to perform many competitive tasks, particularly those involving some degree of teamwork or cooperation. I have vivid memories of waiting for the rest of the children to pair off during group projects, so that a concerned teacher with sad eyes might ask me if I didn’t mind working alone (a happy outcome) or sitting out (happier yet). More vivid still, of running around a course on track and field day, heart filled with shame and eyes with tears, my lungs burning, long after all the other children had already completed it, my excuse about asthma having been taken as that and that only: an excuse.

Of course, I didn’t stop losing just because I turned 18. I was never anyone’s favourite, never the obvious success story, the up-and-comer, the prodigy. Even so, something changed. A small handful of adults – adultier adults, I suppose – mostly professors, started to talk about my talents, my skills, my future. At 22, I transferred to the University of Alberta and joined the university debate society – a club that became my primary social circle and the first place in my young life where I was ever widely liked. It was the first place I got to be something other than the awkward outcast – never mind popular. I was terrible at it, of course, one of the worst of my year. I had none of the required skills: in addition to an awkward, non-confrontational, plodding personal style, my high social anxiety and pronounced stammer were decided barriers in the fast-paced, aggressive realm of competitive debate. I managed to gain a degree of social capital through being funny – an odd and eccentric sense of humour being one of my few highly developed social skills – but no one ever thought I’d make a good debater one day, not even me.

The next year, and every year after that, I took an interest in novices – that is, first-year debaters. Being ignored by older, more experienced members of the club had hurt, so I tried, as much as I could, to be what I didn’t have when I was in their shoes – a friend, perhaps even a mentor. Most of my closest friends now are people I met in their first year of university, nervous and unsure and so glad to see a friendly face, even if it was an plodding, stammering oddball like me. C., a mature, intelligent young lady from a Christian family tired of being underestimated for being pretty and looked down on in academia for being religious. D., a quiet, solemn, private young man from a small town where he was the only open agnostic at the tiny local elementary school, and someone who has always wanted, deep down, to save the world. A., an aggressive, neuroatypical girl with bleached hair, bold makeup, and scars down her arms and legs who wants to watch that same world burn and remake it. My friends. My dearest, dearest friends.

I’m still part of the club. These days, I’m one of the oldest active members, as befits a grad student – a popular and, if I dare say, respected old pro. (Do excuse the adjective; most novices are 18 when they start, and they have no concept of what old even is. An entire 26 years of life must seem quite stately at that age.) The newbies were strangely impressed with me this year – as a senior member, I usually judge debates at our weekly meetings rather than participate, especially early in the academic year, so I am the kindly figure at the back of the room who doles out advice and encouragement, rather than a competitor. They always seemed surprised – shocked, really – that I have never won a tournament, and that, until this past weekend, I had never even made it into the semi-finals. They had all simply assumed that I was very successful.

The thing is, the kind of people who win tournaments are experienced, aggressive debaters who want to win, and thus choose other experienced, aggressive debaters who want to win as their tournament partners. Early on, I had decided that, although I adored debate and would love to do well enough to break into semi-finals one day, focusing on winning just hurt too much. It made me miserable. Anyway, I didn’t want to be the best, not really. I didn’t want to prove I was better than other people. What I really wanted was to improve and to help others do the same. I didn’t need to win to do that. So my partners were generally inexperienced first and second-years, often weaker than average even compared to the rest of their year’s cohort, or too socially awkward to attract a more discerning, experienced partner. I went out of my way to socialize with the novices who were ranked lowest in terms of speaker-scores, and I communicated a willingness to attend tournaments with them, if they wanted. It’s certainly no way to win, but it’s a good strategy for making friends.

A few weeks ago, driving back from a tournament in Saskatoon, after switching out with the tired driver (a quiet, sweet, sleepy first-year who was quieter than usual that weekend), I noticed the look on his face as he sat in the passenger seat – not so much sad as demoralized and resigned . It was a look I recognized from a reflection of my own face in the car window five years before, after my own first tournament in Saskatchewan, where I had done very badly indeed. So I started talking. I told him how impressed I was, how well he was doing, how much he had improved. I told him how brave it was to go up against debaters with years and years of experience and hold his own, no matter what the score card said. I talked about how hard it was for anxious people like us to stand in front of the room and make our voices heard. I told him the words I probably could have used when I was his age, words I never heard from anyone other than my own mother before the age of 20: “I’m proud of you.” He didn’t say anything for a while and then, quietly so only I could hear, “Thanks, Jessica.”

I’ve never won a debate tournament. I’ve been doing this for four years, and I never have. Don’t know if I ever will. I don’t feel sad about that, though, because that’s not the point – never has been. Very few people get to win, get to be the best or even close to the best at anything. Honestly, I think losing as much as I did early on made me a better person in some ways, made me understand what it’s like at the bottom, made me appreciate when I did succeed just a little more, made me think differently and reassess what success was.

Being the best, being better than everyone else, isn’t as important as being better than the old you, than improving relative to your former self. It’s often toxic to fixate on where we are compared to other people, especially in the case of disability. We tend to obsess on all the “can’t’s” and “won’t ever’s”, to focus on the unlikely and the impossible. It can make the situation seem hopeless. A lot of people with autism won’t ever live independently, won’t ever get married, won’t ever have children of their own, won’t live the lives that others expect as a matter of course. (Though, certainly, some of us do!) But maybe that’s not necessary to happiness, to a fulfilling existence. Maybe that’s besides the point, a distraction from the bigger goals. Life is filled with little victories – learning how to cook, learning how to clean, how to make a friend – and they should be celebrated for what they are. Not everyone can be the best, not everyone can succeed in the way it’s usually understood, but everyone can improve.

We Want to Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the December 2016 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of Friday, December 9.

Autism Families with Adult Children in Central Alberta

Kitty Parlby
As autism has slowly become better understood and better diagnosed over the last few decades, we’ve had a surge in those being identified as autistic. In 1995, 1 in 500 children were being diagnosed with autism; in 2001, 1 in 250; in 2007, 1 in 150; and in 2014, 1 in 68. Those children diagnosed in the earlier years have now become adults. And the numbers of adults are steadily growing, including my 20-year-old son, Eric.

In the online autism support groups that I am part of here in Central Alberta, people often ask what supports and services are available for young adults with autism, or for those approaching and preparing for the transition into adulthood. Sometimes they wonder if there even is a group for these individuals.

As a board member for Autism Alberta, I can tell you that adults with autism are certainly one of the areas that we discuss and advocate for on an ongoing basis. Unfortunately, here in Central Alberta there are not as many services, supports, activities and groups as you may find in Calgary or Edmonton.

I thought it would be great, therefore, if we could start a support group – a place to share our challenges, knowledge of resources, and to give comfort, hope, and a friendly listening ear. We could also help mentor those families with children who are approaching adulthood.

So I invite you to join our Facebook group called Autism Families with Adults – Central Alberta.

Let’s get together and share our ideas, strengths and dreams. Hope to connect with you!

Kitty Parlby is the mother of a son with autism, a public speaker and workshop presenter, a director on the board of Autism Alberta, and works as a special needs educational assistant in an Alberta elementary school.

Autism is a Disability…
…But People Who Have Autism Have Unique Abilities

Ethan P. (Age 13)
People who have autism are sometimes hard to understand, but they can connect with us through activities. For example, someone with autism may really enjoy playing basketball with their brother. Maybe they love to go on hikes with their family. Autism is like a puzzle, because it may be hard to put together, but once it’s put together it truly is a work of art. That’s how I feel about my brother.

If someone is having a hard time, they might be able to calm down by doing something peaceful, like painting a picture or going for a walk. And sometimes people with autism have things that they like very much, like tractors, music or planes. They spend lots of time playing with, listening to or watching these things. Sometimes they will really like to be involved in an activity like swimming or playing an instrument. When it comes to these interests and activities, they should be treated just like everybody else. We all have things that we enjoy doing, and on that level we are all very much alike. Maybe these interests will directly affect their lives later on. For example, if their interest is building with blocks, maybe they will be a construction worker or an engineer. Or if their interest is watching planes, maybe they will become a pilot or an airplane mechanic.

People with autism may sometimes have trouble starting activities by themselves. They may need someone to give them an idea for what to do, or a schedule to tell them what is happening next. My brother definitely works best when he has a schedule. He especially likes school, because his classes are at the same time everyday. It takes repetition to learn new things, but once he’s created a habit he can do it over again easily. When he is doing chores like stacking logs, all he needs to be told is where to get the logs, where to put them, and how to get them there.

People with autism are also very creative: they can come up with an activity that they really enjoy. They can do this by combining other known activities.

Just because they have a disability doesn’t mean they can’t do other things just as well as we can.

Housing Update

John Seigner
We have learned from the experience of the homeless population that quality of life depends upon safe, secure housing. Families and governments must have a long-term, sustainable strategy that will answer the question “what happens when the family is gone?”

The Sinneave Family Foundation facilitated a roundtable discussion in Calgary in June 2012 that led to the development of the Alberta Supported Community Living committee for adolescents (emerging to adulthood) and adults with Autism Spectrum Disorder (ASD).

SFF currently provides some support to the committee through John Seigner, parent Ambassador and Manager of the Resource Centre at The Ability Hub. He and the Alberta Supported Community Living committee co-chairs have met with several housing, property management and development agencies across Canada to become familiar with a variety of options. John also provides some support to the Aspires Housing Committee of Calgary (formed in 2014).

Over the next several months I will provide details of a variety of projects and proposals that are being pursued by the Aspires Housing Group of Calgary, including:

Adult Independent Residence (AIR)

This project is envisioned as a multi-unit residence that will provide independent living units for residents, integrated with market rent units for the general population, that will provide social and community engagement for highly independent individuals who might otherwise be isolated and non-social. This project will include a mechanism to provide funding for ongoing support in the capital design by providing revenue from market rental units as well as retail or commercial spaces. In addition, a rent-free concierge suite would be provided for a caregiver.

Community Housing for Intellectually Disabled

People with intellectual disabilities are often in danger of homelessness, medical or judicial intervention. Appropriate housing can help create both safety and a range of opportunities for independence. This project would be designed to build up to thirty independent accommodation units with technology assisted monitoring from a central office. A mixture of bachelor, single and double bedroom units will be determined by the market requirements, along with a common kitchen and social area for communal events and smaller shared spaces for recreation. Elevator and wheelchair access for all floors will accommodate those with accessibility challenges and allow for aging in place.

A mixed funding model would be used relying heavily on PDD and AHS contributions for the wrap around support. Calgary Community Land Trust would provide the development, design, regulatory and construction expertise as well as being responsible for long term property management, similar to their existing models.

Transitional Living Camp

To provide a short-term program for transitional housing, ten university residence units would be leased on a weekly basis from the University of Calgary. Participants would spend five days living and working with up to 19 other individuals to get some practical experience in the requirements for independent living. Offsite programing can be provided by the Ability Hub.

Family Managed Community Home

This initiative envisions several families combining to purchase or lease a home, select an agency that meets their needs and negotiate a funding agreement with PDD to provide the wrap around support. This model allows much greater co-operation between families and support agencies as well as a greater degree of tenure security.

More Than Just A Fence
When Community Collaboration Changes Lives

Jade Nesvold
This article originally appeared in the Fall-Winter 2016 issue of Autism Now, Autism Edmonton’s magazine. The latest issue of Autism Now is available online for members of Autism Edmonton – click here to join for free!
Interviews condensed and edited for clarity

Wandering is a common feature among kids with autism. Wandering, bolting, or running away can be extremely dangerous for the individual and absolutely terrifying for parents and guardians, who often unfairly blame themselves for contributing to the behaviour. If the individual has any difficulties with communication or social interaction, the risk of danger increases significantly.

In the spring of 2016, Autism Edmonton was introduced to the parents of twin 5-year-old autistic girls who had a major tendency to “bolt” or wander out of the house when no one was looking.

This family had just moved into a house with a spacious yard where the girls might play, but there was a catch… the yard had no fence and they couldn’t afford to build one. Adding to that was a very busy main street just outside their door – so the risk factor for the children was huge.

A fence was very important to the family, as it offered a second line of defense if their girls ever unlocked the front door and wandered out of the house (which they were known to do).

“In the middle of the night they get up,” the girls’ mother said. “They can even open the door- that’s why we’re scared. They are very fast.”

“How many times they almost got hit by a car… it’s my nightmare. Every second they have to be in front of my eyes. Every day and night.”

The family’s school counsellor wasn’t sure what to do and had reached out to us in case we could help. In turn, we called a local company we were connected with, to see if they had any ideas.

The company, Align Fence, generously offered to build the family a fence so the kids would stay safe. Coincidentally, they also happened to have two adult employees who are on the spectrum themselves!

We were able to connect the family with Align Fence to get the project started. They invited us out to meet Brad and Jamie, the two crew members with autism, and watch them put up the fence.

While the crew installed the fence, we chatted with Brad and Jamie’s proud parents…

Brad’s father, Paul, who also works for Align Fence, was thrilled to see his son working, gaining confidence and increasing his employable skills.

“By getting them on the jobsite, it gives them enough confidence that they will be able to continue doing that,” he said. “Just to watch the look on his face when he’s excited to do something and he knows he’s doing it right… to me, that’s priceless.”

Brad is a man of few words, but he seems to like what he does at Align Fence. “It’s pretty good,” he said with a wide smile. “No complaints.”

Paul said there have been surprisingly few problems with communication on site between crew members, despite the fact that Brad’s on the spectrum and Jamie’s deaf.

“If I was to go anywhere – say Taiwan or Cambodia – I would not be able to understand and I would have to go back to gesturing,” Paul told me. “Working with Jamie has made me better at gesturing because I know what he’s looking for. It doesn’t have to be just speech or writing things down… a point, a sign, anything can work.”

“As soon as he understands, he’s eager to get going on it.”

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