Autism Around Alberta Newsletter

In This Issue

• ASA’s Response to July 21st Announcement from the Minister of Education
• Please Ask Me About My Son – Karla Power
• Connecting in Lethbridge – Brandon Rudics
• Autistic Self-Expression
• Autism Society Alberta’s Annual General Meeting
• Autism Society Alberta Support Group
• Everyday Learning – Teaching in Context – Kitty Parlby
• Strategies for Better Sleep in Individuals with ASD – Ade Orimalade and Funto Orimalade
• Life Beyond Trauma
• Parenting a Child on the Spectrum, While on the Spectrum – Brandon Rudics
• The Big Announcement – Hope Rudics
• Increased Screen Time in the Age of COVID-19 – Maureen Bennie
• You Can’t Ask That: Autism
• Self-Management 101 – Carmen Moore
• Autism Edmonton is Adding New Board Members
• Occasio – Summer Edition

Let It Go

Karla Power

 
As I write this, I am filled with a sense of pride in my boys and peace in my heart. If you had asked me a month or two ago, I would not have described my heart as being peaceful. In fact, it was quite the opposite.

Just like many people during this difficult time, I was struggling. I was struggling with trying to balance two worlds: that of work and home, all while trying to adjust my family and myself to a brand-new routine. It was definitely stressful!

On top of the regular everyday stress with work and managing a household, my husband and I were both stressing about how to meet our children’s goals. Paddy has goals for speech and communication, dressing goals, and life skills goals, to name a few. We had also just recently been informed that Kelton was not reaching his milestones. So here I am, sitting with lots of time on my hands, thinking it’s a great time to work on all these goals!

WRONG! After several attempts to work on many of these goals, I ended up feeling exhausted and defeated! I started to wonder if perhaps trying to potty train during a pandemic was not the best plan! Yes, we had lots of time, but it was not undivided, and both of our boys were out of their regular routine. So, to expect them to try new things in such a scary and confusing time was a bit much!

The Art of Backing Off

Kitty Parlby

We’ve all heard the phrase ‘quality of life’ quite a bit. Our family works hard to fill our son Eric’s life with a combination of productivity, recreation and relaxation. Although this can be a struggle at times, I have gotten better at it over the last 20 years. It is especially important to give Eric a chance to hone his abilities and learn new skills. However, there is a vital aspect of exploring skills and creativity that I’d like to address.

Have you ever come up with some great task or project for your autistic family member, student or client? Maybe it was a practical skill, or maybe it was creative. Perhaps it was just an everyday chore that you felt they were ready to try, or something they showed an interest in. However, as things got started you found that they were not going as you expected. Maybe it was going very slowly, or it was getting messy, or loud, or went in an entirely unexpected direction. Then, without even being conscious of doing it, you stepped in.

And there it is. Most of us, being human, look at completing tasks through our own experience. That means doing a task our way using the skill and experience we have. I’m no different. Yet we all gained those skills or our creative style through trial, practice and error. Those with autism need that same chance. So it was with great struggle and mindfulness that I had to learn a new skill myself: the art of backing off. It’s a fine balance to be had, and your balance may look different from my balance.

Continuing Autism Society Alberta's Conversation with the Government of Alberta

In the past few weeks, the Government of Alberta has invited representatives of Autism Society Alberta and other community groups representing Albertans with disabilities to learn more about the challenges individuals and families are facing in light of COVID-19. We are encouraged that some recent meetings have been more proactive, and we are being invited to provide our thoughts in advance. This includes a recent discussion with The Honourable Rajan Sawhney, provincial Minister of Community & Social Services, and Dr. Deena Hinshaw, Alberta's Chief Medical Officer of Health. Since the situation continues to evolve every day, we encourage Autism Society Alberta members to continue to share your unique challenges and specific concerns, both with us and through your own network.

As we speak out for our community, we continue to highlight the need to:

• View a designated family member as an Essential Partner in Care (critical to physical health, emotional well-being, and containment/treatment of COVID19)
• Value the life of each Albertan equally (including those with disabilities)
• Understand the greater impact of social distancing measures on our individuals and families, including restrictions and cuts to essential services
• Address financial, social, and circumstantial barriers that restrict individuals on the spectrum in meeting their basic needs during this crisis
• Plan for barriers in post-Covid Alberta regarding disability-related services, housing, employment, and education

Real life experiences are invaluable in demonstrating the actual needs of our community. Please e-mail us at community@autismalberta.ca and keep us up to date on your most pressing issues.
 

Autism Society Alberta is Still Here to Help

During this period of social distancing and self-isolation due to COVID-19, Autism Society Alberta will be available to talk you through challenges you may be having personally or with loved ones with ASD. We can also refer you to your regional autism society. Call us at 1-877-777-7192 or email at info@autismalberta.ca. We are working from home, but will get to you as quickly as we can.

For everyone’s health and well-being, we want to remind you to wash your hands frequently; cough or sneeze into tissues, discard them immediately, and wash your hands afterwards; stay in your home except for essential trips for groceries or medications; and keep a distance of two meters between yourself and anyone you do not live with.

Act of Giving: Glenn Havinga

We are thrilled to spotlight our recently retired treasurer, Glenn Havinga. Glenn has volunteered as a board member with Autism Society Alberta for a total of fourteen years! During that time, he also graciously took on the task of being our treasurer.

Glenn is the father of two, and his youngest son, now 31 years old, is on the Autism Spectrum. Glenn’s professional background includes being a Certified Management Accountant.

When asked what he enjoyed most about volunteering with Autism Society Alberta, he quickly replied, “The people – I appreciate the passion of everyone around the table. To see people give so much of their time and effort when they are already busy with jobs and their own families is inspiring.”

A growing number of individuals and families living with Autism Spectrum Disorder are contacting Autism Society Alberta and our regional partners to express worry and concern regarding our province’s current political climate. The pending 2020 budget has our community in a heightened state of anxiety.

Needless to say, individuals and families are fearing for the vulnerability of government programs that are critical to supporting themselves or their family members to lead more independent lives. Of particular concern are Program Unit Funding, Special Education, Family Support for Children with Disabilities, Assured Income for the Severely Handicapped, and the Persons with Developmental Disabilities program. There is also serious concern that the known gaps in Alberta`s systems of support may grow, such as the known problem with PDD IQ cutoff. There is fear that some programs may introduce more restrictive eligibility criteria, and that the number of Albertans experiencing hardship may increase.

We are also hearing issues regarding some recent policy changes and system challenges. Families in some regions are reporting a wait of 9 months for FSCD intake. Individuals are expressing hardship associated with the deindexing of AISH, and the pending shift of AISH payments to the first of each month. Also, local autism community groups are investigating some denied PDD applications from families with clear and immediate need.

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!