Autism Around Alberta Newsletter

Chinook Autism Society's First Sensory Santa

Hope Rudics

Now my husband may be the pretty face of CAS as the current VP and acting President, but I'm the one who loves doing all the fun behind-the-scenes stuff. As a mother, a Sensory Santa event was something I had always dreamed of in the past, as I had often seen it done in other cities. I was determined to make it happen in my city, and finally, this year I found myself with the perfect opportunity to realize my dream. 

First, I would like to thank Park Place Shopping Center here in Lethbridge Alberta for reaching out to Chinook Autism Society with the offer to collaborate on a Sensory Santa. They had the resources, and we had the tips and tricks. 

Trying on Traditions for Size

Karla Power

Holiday traditions make my heart happy! I love getting together with people in celebration, dressing up and eating yummy food. The only problem is that sometimes my excitement is met with frustration by my child. What should be fun childhood experiences can often lead to overwhelming situations that result in a meltdown.

The exact days that had me popping out of bed in excitement as a child, with me asking “Did Santa come yet?” or waiting at the front door saying “Time to go trick-or-treating!”, are the days that throw my child off. You see, as exciting as these days are, they are not part of the routine that we have come to rely on to keep things calm and predictable for our son.

Over the last two years I have found myself in tears during many festive occasions. At first it was very difficult to wrap my head around the idea that my son’s childhood might be very different than my own childhood was. Before we even had kids, Frank and I talked a lot about our own family traditions, and which ones we would like to pass on to our children. We agreed to try out different traditions with our children, even after Paddy’s diagnosis. We are both firm believers in trying things out to see how they go, rather than avoiding them altogether.

A Call to Action: Forming Provincial Working Groups

On October 11th, over 200 stakeholders from all over Alberta participated in Autism Alberta’s Alliance’s A Call to Action: Forming Provincial Working Groups. 

The event fostered inspiration and sparked dialogue about what possibilities lie in the various themes of Complex Case Care, Housing and Independent Living, and Family Advocacy.

Our amazing Advocates’ Forum encouraged and inspired self advocates to become more engaged in their communities, and offered organizations best practice tips on how to truly embrace inclusion.

Advocates’ Forum
Panelists from left to right: Adam Glendon, Micheal Frost, Aksana Kirton and Adam Kedmy

Autism Society Alberta Rural Pilot Project

Things are happening with Autism Alberta! We strive to be aware of the challenges facing autism families in Alberta, and have seen the number of calls and e-mails from rural and remote regions increase exponentially over the past year compared to recent years. It is clear that geographic distance from autism-related services can be a major barrier for families and individuals living with ASD. 

Therefore, we have begun a pilot project to collect data and better understand the needs and gaps in service for individuals and families living with ASD in rural regions. The pilot project committee has chosen Stettler and the surrounding area (Caster, Coronation, Consort, Alix) in which to conduct our project. We will work to:

• Equip groups, networks, individuals and families with the resources and information they need
• Identify opportunities for greater collaboration and connectivity
• Develop a model that can support other rural/remote regions in the province 

The committee is hard at work putting together a draft ‘tool kit’. Kitty Parlby will be the ‘on the ground’ coordinator, and will be presenting to a variety of groups and organizations in the area throughout October and November. She will also be offering peer-to-peer support to families. Currently Kitty is in the midst of organizing dates and locations with hosting groups in the Stettler area.

Autism Alberta is excited to be taking this action towards empowering families and individuals in rural and remote areas to get the support and services they need.
 

Our Biggest Transition Yet

Hope Rudics

Three years down – that seems like a lot for a six-year-old, doesn’t it? 

One thing with kids on the spectrum, especially those who do not yet verbally communicate, is that early intervention is key. That’s why Jude started school at just three years old. Now, at the age of six, he has already completed two years of EEP and one year of Kindergarten.

When he started, he lacked words, eye contact, and also social skills – even the typical social skills of a three-year-old. He had a very hard time controlling his emotions, and it was nearly impossible for him to sit and enjoy something for longer than just a moment. He did not comprehend the whole potty-training process until later than most. We were back and forth between multiple speech, behaviour and occupational therapies. So EEP, also known as Early Education Programming, was a beautiful and happy mix of everything he needed in a day, including his physical sensory needs.

Autism Alberta's Annual General Meeting

Do you have ideas about how you or your loved one with autism can have a better future and quality of life?

We want to hear your thoughts at the Autism Society Alberta Annual General Meeting! 
 

It’s Not A Processing Error

Tracy Auger

Autism? Yeah, I’ve heard of it. What is it? I have no idea, actually.

That changed after I noticed that my grandson, Jude, wasn’t even attempting to talk at almost two years old. I sensed there could be a problem, and suggested that my daughter have it checked out. After many doctor’s appointments, referrals, and more appointments with multiple other professionals, the diagnosis was in.

My grandson has autism. What? Not my grandson!

Well, now I wanted to know: what is it? What are the signs? What are the symptoms? Was there anything I could do to help?

Adding Acronyms to Acronyms

Hope Rudics

They always say things will change, but they never warn you how!

They told me there would be less frequent meltdowns once we passed the nonverbal stage. They said that communication would be easier, and Jude would be able to voice his wants and needs. He would become less frustrated, and so would I, his dad, and other caregivers around him. Now most of the guesswork would be gone! As it turns out, they were right.

But what they don’t prepare you for is the even bigger roller coaster of the verbal life, and where exactly that leads. When Jude was little, and before we were able to connect with him, we had to work out systems, give him options, and hold him up to point at what he was requesting from us. It started with two-word combos stemming from the basic ASL signs for “more please”. Slowly, we were able to develop that into “Can I have more milk, please?”, with emphasis on the question. Success! But with a major success such as becoming verbal at a late age also come many other challenges. He had a lot of time to soak up language from all around, so even as we were leaning more towards learning “please pass me the crayons”, he had already jumped into “I don’t have time for that, mommy!” Um… OK, then!

Making the Pieces Fit

Nicole Spring

“It takes a village to raise a child.” But what if the village doesn’t understand enough about the child? I often have to explain and even defend why Autism Society Wood Buffalo choose to use the puzzle piece to represent us and the work we do. The use of the puzzle piece to represent autism has been known to cause some controversy. Some see it as depicting a person with autism as broken or not whole. The Autism Society of the RMWB looks at the symbol differently, however.

We do not see autism as a mystery needing to be solved, nor do we believe a person with autism is missing something or needs to be fixed. The pieces of the puzzle, for us, reflect the services, supports and community awareness that need to be put together. You see, the individual is whole already – the whole centre piece. Our goal is to finish the picture around the person. If we can strengthen existing supports and services, create new ones, and raise awareness in our community, our belief is that we can enhance the picture.

 
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Henry (And How Lucky We Are)

Jeff Hanger

Henry is my eldest son. He is eight years old, loves Harry Potter, Star Wars and Batman, and faces every challenge with a smile.

He was born a beautiful boy with a cleft lip, and had his first surgery when he was four months old. He had surgery again at the age of six, and coped with a liquid diet for three weeks afterwards with a cheeky grin on his face.

But we were lucky.

Unlike other children born with a similar feature, he could drink without choking, there was no obvious scar, and he wasn’t likely to die of starvation or humiliation, as he may have in the developing world.

An Executive Dysfunction Sufferer’s Guide to New Year’s Resolutions

Jessica Pigeau

Beginning the year with a reflection on one’s goals and personal direction is an age-old tradition. It is a moment we take to ask ourselves what we want to do, what we want to change, and who we want to be in the coming lap around the sun. The entire concept of a calendar is largely arbitrary and socially constructed – what is a “week”, anyway? – But January is as good a time as any to take stock.

I have never before made a list of New Year’s resolutions, but I have recently developed a fondness for to-do lists. One of the trickiest barriers in my life is executive dysfunction: I struggle with planning, breaking down complex tasks, and responding flexibly when the situation changes. New and unexpected circumstances can derail my thought process entirely.

I therefore find it very helpful to take a quiet moment every morning and write down what I plan to do that day. I keep a running timeline of what needs to be done and when – tasks for the week, the month, the year. This gives me the structure I need to understand the overlapping, constantly moving web of my responsibilities and personal obligations. I write down everything I need to do and set myself constant reminders, even for “easy” stuff like buying groceries and making dinner.

To help you set, maintain, and achieve your New Year’s Resolutions, I would like to lead you through my process for creating a to-do list, using a goal I set for myself last year – to keep in touch better with people I care about.

Season’s Greetings from Autism Alberta

Christmas brings with it the birth of the light. It’s at the darkest time that the light is reborn – a tiny little light that will grow and grow in the coming weeks. Whatever your challenges, whatever your needs, take heart at Christmas. Nurture that tiny little light in your own soul. Feed it. It’s there to help you transform your challenges and help you grow and realize the things you most desire.

At Autism Alberta, we hope that 2019 will help us all take steps that will make a big difference to all people affected by autism in this province.

Happy Holidays to all!

The Ever-Changing World of Caregivers

Kitty Parlby

Usually, I write about positive things in our lives, or share knowledge on practical strategies for autism families, teachers, aides and community workers. This time, however, I want to share something very real and personal with you – a glimpse into our lives, if you will.

As Eric is nearing 22 years old, we continue to learn and navigate the world of care and services for adults with developmental challenges. Through our service provider, we have a community aide worker for Eric Mondays through Thursdays. However, here’s one of the main difficulties we face: typically the aides stay for only 4 to 8 months. Because of this, two years ago I had to quit my job as a special needs Educational Assistant at an elementary school; in one year I had to take two long leaves of absence when Eric’s aides quit. It can take weeks or even months to find a new community aide. I realized that this was going to be an ongoing issue throughout Eric’s adult life, and resigned from my position. I went on to start Autism Inspirations, my own speaking and consulting business, in which I can control when and where I work to coincide with Eric’s life. We just lost another aide a month ago.

One issue is that we live in the country, so the aide must drive out to our place and pick Eric up for the day, and drop him off at the end. The nearest small city is about half an hour away. If I chose, instead, to drop Eric off and pick him up there, that would mean I would be driving an hour in the morning and again in the late afternoon within the 10 am to 4 pm shift. There is no way I would even be able to run my business if I did that.