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Autism Around Alberta – January 2018 Edition

Siblings

Erika Rowden

Conor, my son on the spectrum, has a younger brother named Shea, age 5. I write so much about Conor that this time I wanted to write something about his brother and how autism has impacted him. I dedicate this article to all the amazing siblings out there – you are not only a brother or sister, but also an advocate, therapy assistant, friend, and so much more to our ASD children!

When Shea was born I knew it would take Conor a little time to adjust to having someone else share the spotlight… but I did not think it would take years! This was pre-diagnosis, and knowing what I know now, I totally get it. The change in his world was so huge that he could not deal with it, and he used behaviour to express those feelings. I could not understand how others would always say that their child just loved being an older brother or sister, when mine was totally the opposite!

For the best part of two years I was concerned for Shea’s safety with Conor. Conor was very aggressive towards his little brother, and would often hit him on the head or choke hold him. Once Shea could stand up for himself a little and was more mobile, things slowly improved. I also got to see how very, very different they were in every way. I can totally remember when Shea first smiled; with Conor, I can’t recall. Shea did so many ‘normal’ baby things, but Conor certainly did not!

Conor was diagnosed when Shea was three years old. From that age Shea became familiar with therapy, respite, and sensory tools, to name just a few. He has totally embraced it all, and has always wanted to be a part of Conor’s therapy sessions. He teaches Conor about appropriate play, behaviour and conversation. Shea

loves to play, and he brings Conor ‘out of himself’, because he won’t take no for an answer! It has been amazing to watch that bond and friendship grow. He loves to watch Conor’s basketball games, and now Conor is happy to watch him play hockey. They encourage and motivate each other, and Shea is a great role model for Conor.

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Autism Around Alberta – December 2017 Edition

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Autism Around Alberta – November 2017 Edition

Autism Alberta Alliance Update

Shino Nakane

On November 3, the Autism Alberta Alliance hosted a stakeholder engagement session with participants from all over Alberta. More than 120 key stakeholders registered to attend the event. Despite severe weather and driving conditions, 56 participants were able to make it to Red Deer.

From a regional perspective, we had exceptional geographical representation. Participants came from Grande Prairie, Fort McMurray, Edmonton, Red Deer, Alex, Olds, Calgary and even Canmore. Although a few individuals from places like Medicine Hat and Lethbridge attempted to brave the roads, the conditions made it unsafe for them to continue their journey.

Marie Renaud, MLA

Stakeholders included some of the main ASD specialist agencies and a wide diversity from other sectors: educators, health professionals, researchers, employment support, housing and intervention specialists, sports/recreation, parents, self-advocates, and many others.

Special guests included Marie Renaud, MLA for St. Albert and Deputy Chair for the Premier’s Council on the Status of Persons with Disabilities, who dazzled guests with her warm welcome and opening remarks to the group. A senior representative from the Inclusion and Accessibility Division of the Ministry of Community and Social Services participated in the day’s activities and networked with other participants. Representatives from the Autism Society Alberta Board and members from the Provincial Parent Advisory Committee were also present, lending their support to the formation of the Autism Alberta Alliance.

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Autism Around Alberta – October 2017 Edition

Engaging About Autism

Kitty Parlby

It’s here – it’s autism awareness month! I really like the idea of sharing information and stories with the world around us; not just the elating and rewarding parts, but also the challenges and struggles. Because I do speaking, training and consulting on autism, I get more chances than most to do this. But any individual or family highly affected by autism can help others learn more, and I’m going to discuss some ways you can do that. Not everyone chooses to share; it’s a very individual choice. But for our family, it’s a year-round, everyday thing.

Eric has what’s often referred to as classical autism, and all the symptoms that go with it. So although autism is called an invisible challenge because you can’t see it, that’s not so much the case with Eric. With his odd noises and voice fluctuations, his offbeat galloping gait, and his ritualistic hand, arm and head movements, you would know within seconds that something is up. It is to Eric’s benefit that people around him have some understanding.

I am not a self-conscious person, and Eric sure isn’t, either. It has never bothered me that people stare at him. I choose to interpret it as a sign of interest, not rudeness; I consider it an invitation to tell them about autism. It’s a perfectly natural reflex to look closely at something you don’t understand. I encourage you to make a conscious choice to not be offended, whether you choose to speak to them about autism or not. A positive point of view can be contagious! As for me, I almost always choose to engage with them. When Eric and I are out and about, and he’s making his startling movements and loud noises, I am smiling in his direction. I am using body language to communicate to the people around us that nothing is wrong; everything is okay.

Eric often wears humorous autism T-shirts when we go out in public. I started this experiment years ago, thinking that people are often more comfortable and understanding if they have more information. The difference was amazing and immediate. People smile instead of frown. I can hear parents tell their children to not worry about the loud noises – he just has autism. Many people come up to us to ask questions or tell Eric they like his t-shirt. Employees at stores, museums, theatres, and zoos are more patient and friendly. Wearing T-shirts like this is not for everyone. Some individuals would rather blend in, or pick and choose who they tell, and that’s okay too!

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Autism Around Alberta – September 2017 Edition

President’s Message

Jason Scheyen

It is with great excitement and pride that I am taking on the role as President of Autism Society Alberta (ASA). I would like to thank our outgoing President, Deborah Barrett, for her dynamic leadership. Deborah has helped develop many great initiatives like Who Will Take Care of Our Kids, Autism Around Alberta, and Autism Alberta Alliance. Her leadership has also seen our organization become more financially viable. I hope we can continue to build on these initiatives, and to develop our strategic direction as our organization changes.

As a board member for the past three years I have learned a great deal more about people with autism, and I have met great people who desire to do great things. I look forward to my time of furthering existing initiatives, as well as taking direction from the board on the other places we wish to progress. Thanks to the groundwork laid by previous ASA boards, I am excited to say that I see tremendous opportunities ahead for our organization to lead the autism community in Alberta.

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Autism Around Alberta – August 2017 Edition

Reflection

Deborah Barrett

It’s the beginning of a long journey when you recognize that something about your child is very different. It’s a shock to hear the diagnosis of autism. It’s so challenging to make sure your child has all the advantages and opportunities he or she deserves. It’s beyond challenging to understand and live with different ways of perceiving, to find ways of coping that work for your child, your family, your community, yourself. And it’s an uphill slog to make sure your adult child has a good life.

You find yourself doing things you never wanted to do and never thought you could do. You find yourself reading about topics that never interested you before. You find yourself educating, advocating, speaking, organizing, creating, leading. You find yourself growing. You discover there’s more to yourself than you’d ever imagined.

And somewhere on the journey, you realize that autism isn’t a scourge – it’s a blessing.

Parenting always asks you to dig deep, to find things in yourself you didn’t know existed. It asks you to figure out how to be there for your child, whether young or old. Autism asks the same. For some of us, autism asks us to participate in the community; it asks us to co-create the future. It asks us to parent more broadly, to help the community understand and develop better options for our loved ones on the spectrum.

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Autism Around Alberta – July 2017 Edition

Moving Mountains – My AGM Experience

Jessica Schurman

With Autism Alberta's Annual General Meeting coming up next month, we wanted to share Jessica's piece from last year, where she talks about why attending our AGM was a meaningful experience for her. We hope we'll see you at this year's meeting on August 26th in Red Deer!

I walked into Autism Alberta's Annual General Meeting feeling lower than low, discouraged; my bucket was empty. Three children, 17 loads of laundry, a van covered in Rice Krispies, and having only 24 hours to prepare for a mini-lake vacation will do that to you. Five hours is a great deal of time for anyone to dedicate and commit to a meeting, but wow, what a five hours it was. Everyone there had their own 17 loads of laundry and cereal covered minivan waiting for them, but they volunteered their time, showed up, and shared! I walked away from the AGM feeling completely inspired by the twenty people from across Alberta who were in attendance at the table and over the phone.

It was not five hours of budgets and reports – it was time spent learning and celebrating the other events and initiatives happening all over Alberta. For myself, on a personal level, it was a chance to spend time and connect with other parents and grandparents from across the province who are actively working to make the lives of all people touched by autism better. They are working tirelessly on policy, fundraising, and awareness. Most importantly (for me), I get the privilege of sitting in a room with parents who have children who are significantly older than my daughter and gaining knowledge and tips from them for when we get there. The advice, in my mind, is invaluable. My Matea is ten years shy of adulthood, but what a fast ten years I know it will be. I am forever thankful to this group of men and women who give of their time and their experience to help me and my daughter.

I would encourage any parent, with a loved one of any age, to attend a future AGM or call in if you ever have the opportunity. Walking away this afternoon, the statement that stuck with me the most was one made by both President Deborah Barrett & Vice President Lyndon Parakin: “we were and are just a group of parents, but if we have learned anything, it is that parents can move mountains.”

Thank you for the inspiration, my autism community friends. We in Red Deer are ready for another amazing year of working together with Autism Society Alberta to move some mountains.

Autism Alberta’s Annual General Meeting

Saturday, August 26, 2017
10:00 AM – 3:00 PM

Board Room
GH Dawe Centre
56 Holt St
Red Deer, Alberta

RSVP to info@autismalberta.ca
by 4:00 PM, Thursday, August 24, 2017

Child Care is available, but please let us know your needs by the RSVP deadline of 4:00 PM on August 24.

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Autism Around Alberta – June 2017 Edition

This Board is Not Boring!

Deborah Barrett

Over the years, I’ve sat on a number of boards and committees. Many of them were, well, boring. They were about budgets and numbers and a lot of what seemed like rubber-stamping.

My three years as President of Autism Alberta have been anything but boring! We’ve met regularly as parents or family members of loved ones on the autism spectrum. We’ve brought up issues, not to whine, but to see how Autism Alberta could use our collective voice to address these issues, bring awareness, and move toward making positive changes for individuals and families affected by autism.

We’ve created a newsletter, updated our website, started several Facebook communities, got funding from Autism Speaks to look into issues in rural and remote communities, and received funding for an Autism Ambassador replication grant in the Fort McMurray area. We’ve started a Social Solvers group in Red Deer and followed up with a play date program so kids could practice their new skills.

Directors of Autism Alberta worked on a committee that got a grant to pilot the first-ever Lifespan Clinic for Adults with Autism, and sat on the advisory committee for the pilot clinic. We've also met with Government of Alberta officials about housing issues and with MLA Marie Renaud about AISH issues that affect many adults on the spectrum. We’ve funded a groundbreaking report called Who Will Take Care of Our Kids (When We Can’t Anymore), and work will go forward there as well. We’ve heard from parents about mental health issues, and we look forward to hearing and doing more.

A meeting of the directors for Autism Alberta leaves me inspired and motivated. To a person, our directors are compassionate, caring and forward thinking. Each director is moved to create a better quality of life for individuals who live with ASD and the families and caregivers who support them. I am always in awe of the deep love and respect that members of this board have for people on the spectrum, and by the good, doable ideas they bring to the table. We don’t ignore budgets and numbers, but we try to use them to make the needs and concerns of Alberta’s ASD community known to the various areas where differences can be made.

Autism Alberta’s Board of Directors is composed of inspired, passionate people who use both head and heart to move Alberta toward a better quality of life for people on the spectrum. The good news is that there is currently room for you to join this forward-thinking board! If you are concerned about the issues surrounding people who are affected by autism, please consider joining our board. I can promise it won’t be dull! Contact dbarrett@interbaun.com, or call Deborah at 780-982-2051.

If you can’t join the board, you can still attend the Annual General Meeting. It is open to all members of Autism Alberta.

Autism Society Alberta

Annual General Meeting

10 AM-3 PM

Saturday, August 26, 2017

GH Dawe Centre

56 Holt St,

Red Deer, AB

Please RSVP by Thursday, August 24, 2017 at jscheyen@hotmail.com

Child Care is available, but please BE SURE to let us know by Thursday, August 24, 2017 at jscheyen@hotmail.com

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Autism Around Alberta – May 2017 Edition

Our Spring Vacation

Erika Rowden

This Spring Break, we were very fortunate to get away on a vacation to Mexico. It was definitely time to escape winter for a bit! We had travelled with Conor and Shea before, so I had picked up a few tips for this upcoming trip.

I made sure we had plenty of activities to choose from on the plane. After all, Conor told me before that plane journeys are the most boring thing in the world! We packed together, so he had lots of say in what he wanted to bring, and he chatted lots about what we would do once we got there. For the first time, he was actually getting excited about the whole adventure!

This time our airport experience was much calmer. The new terminal in Calgary meant we did not have to line up or deal with crowds going through security. That really helped! Choosing where to eat did result in a meltdown, but Conor went along with our group plan and tried a new restaurant. Before boarding, he spent lots of time in the play areas and running up and down the corridor to satisfy his sensory needs!

The flight went great, with no big lineups after we landed, and we arrived at our destination safe and sound after a very long day of travel. Big relief!

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Autism Around Alberta – April 2017 Edition

April Update From The Autism Society of the RMWB

Tina Delainey

Happy Autism Awareness Month from the Autism Society of the RMWB!

We’ve been busy celebrating Autism Awareness Month since March, with plenty of activities going on. For our March Movie Night we watched The Lego Batman Movie. About fifteen families came out for the event, and the kids had a blast!

We were also invited to the Wellness Fair at Peter Pond Mall. Groups from the region that promote mental and physical health were invited to have a booth and do talks about their organizations and what they provide for the community. It was a great to chance for us to share about what we do.

We are fundraising hanging baskets from Meadow Creek Greenhouses until the end of April, for delivery in May. So far the fundraiser is going very well!

We also hosted a Swim for a Toonie event at MacDonald Island on April 2^nd, World Autism Awareness day! We offered sensory items for sale, information packages and displays, pins, and tickets for our Gala. We had a great turnout, and it was a very successful day!

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Autism Around Alberta – March 2017 Edition

Hardly Eating Anything!

Kitty Parlby

Can you count on one hand the foods your child will eat? Perhaps your family has concerns about nutrition. Maybe your child’s weight is below average as a result. I went through the very same thing with Eric when he was younger, and still have to prep him when I want him to give a new food a chance.

There are so many strategies I’ve used over the years. Today let’s just concentrate on one strategy: make food a play thing! Invent a lot of play opportunities that involve food, when there is NO pressure to eat. This is not done at meal time, and maybe not even at the table where you normally eat, but in places in your home that are associated with fun.

For some people with autism, part of the problem is that they need to build up trust and confidence with food. Meaning, they need to have many experiences with food so that they slowly learn to cope with the overwhelming input that comes through their senses. In this way, you help to prevent them from feeling the overpowering fear and stress they may associate with food, and therefore increase their interest and comfort in eating other things.

Don’t tell them what to do in the activities; show all the ways you can think of participating, by doing it yourself. Be expressive with your words and your facial expressions. Show by example that you can touch the food, smell it, lick it, put it some on your nose or chin and laugh. Lay cooked spaghetti over your head to make long hair.
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Autism Around Alberta – February 2017 Edition

February Update from Autism RMWB

Happy Valentine’s Month from the Autism Society of the R.M.W.B.! This month we hosted a family tubing day at our local ski hill. It was great turnout, with 98 people in attendance. Everyone had a blast, weather was great, and the staff at Vista Ridge were amazing!

In other news, a local boy named Josh generously requested that, instead of getting birthday gifts, his friends and family should make donations to the Autism Society of the RMWB. In total $415 was given to us on his behalf. We are so grateful for such a kind gesture from such an amazing kid! A big thank you to Josh!

We are planning several new events for the upcoming months:

March Movie Night
Autism Awareness Art Gala on April 22nd, featuring comedian Don Burnstick
Paint Night fundraiser for Mother's Day on May 14th (Almost sold out!)

We are looking forward to spring just around the corner and all our plans for our community. All the best from Autism Society of the RMWB!

Sincerely,

Autism Society of the Regional Municipality of Wood Buffalo
780-742-4424
AutismSupport@AutismRMWB.org

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Autism Around Alberta – January 2017 Edition

January 2017 Edition

New Year’s Resolutions?

Erika Rowden

Every year, I used to make New Year’s Resolutions for myself. They were the usual stuff: get fit, lose weight, eat better… and after a few weeks, I had broken them all!

This year I have made a few, but I’m not going to call them resolutions; I’d rather call them intentions.

So here is my little list:

It’s OK not to be involved in everything that you feel you should be. Because of Conor’s ASD I feel like I need to be involved in every committee and activity, but in reality it’s just too overwhelming, and is simply not possible.
Stop feeling like Conor has to be busy all the time to help him regulate. With school demands and extracurricular activities he needs that downtime, just like all kids. I have to tell myself that it’s OK to take a break and have a quiet weekend – sometimes that is what we all need.
Spend more quality time with Conor and Shea – we don’t always have to go somewhere. Never be too busy to stop, listen and focus on what they are telling me or showing me.
Take care of me! Making time for the things that I enjoy doing is very important. I am a better person and parent when I can do this. I need to stay healthy for my kids!
Follow Conor’s cues more. Give him more independence to make him feel good about himself.
Stay connected with friends
Continue to learn about ASD – this will be a lifelong intention!
Stop and look at how far Conor has come, and appreciate the amazing progress. Make sure to tell him, too!
When regression hits, remember that he will come out of it and progress. Just be there for him and give him the support he needs.

Wishing everyone a wonderful 2017,

Erika
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Autism Around Alberta – December 2016 Edition

December News from the Autism Society of the RMWB

Tina Delainey

It has been a very busy month for the Autism Society of the Regional Municipality of Wood Buffalo, and we have had great success with all our events since our last update.

We had a great turnout to our movie night! A lot of parents thanked us and asked that we try to put on more of these events, and we are now looking hosting an adult/teen movie night in the new year.

We have also been getting amazing feedback on our visit from Dr. Anthony Bailey, Dr. David Nicolas, Dr. Deborah Barrett and Nancy Gale. Our community is grateful to them for taking the time to come all the way up here to give us some wonderful information and advice.

Our fundraising efforts have been going well, but raising funds is challenging in a community that is still recovering from the events of the summer. A lot of our businesses are still struggling, but we were amazed that we managed to sell twice as many poinsettias as our initial target!

Our Christmas party was a hit, too! We had almost double the kids from last year – almost 70 children had a wonderful time visiting with Santa and enjoying the bouncy castles. They all loved their gifts from Santa, too! Even the parents told us what a great time they had, and that they’re already looking forward to next year’s celebration.

We are all excited for the New Year and all the great things we have planned for 2017. Merry Christmas and a Happy New Year from the Autism Society of the R.M.W.B.!

Sincerely,

Autism Society of the Regional Municipality of Wood Buffalo
780-742-4424
AutismSupport@AutismRMWB.org

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Autism Around Alberta – November 2016 Edition

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!

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Autism Around Alberta Newsletter

Siblings

Autism Alberta Alliance Update

Engaging About Autism

President’s Message

Reflection

Moving Mountains – My AGM Experience

This Board is Not Boring!

Our Spring Vacation

April Update From The Autism Society of the RMWB

Hardly Eating Anything!

February Update from Autism RMWB

January 2017 Edition

New Year’s Resolutions?

December News from the Autism Society of the RMWB

Three Stressful Mistakes