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Autism Around Alberta – November 2018 Edition
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.
Autism Around Alberta – October 2018 Edition
I Would Like to Start the GF/CF Diet with My Child. Where Do I Begin?
Maureen Bennie
From the Autism Awareness Centre Inc. Blog:
As parents of children with autism, we try everything we can to help our kids. In my family, moving my oldest child Marc into a gluten free/dairy free diet helped enormously with his sleep, got rid of his gastrointestinal comfort and elimination issues, and improved his mood.
Although moving to a gluten-free/casein- (or dairy) free diet may not be the answer to all of your child’s challenges, it can help in a variety of ways in about 20% of children with ASD. The good news is you’ll know within about 6 weeks of starting the diet if it is having a positive effect on your child.
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Autism Around Alberta – September 2018 Edition
Can't, Won't, Shouldn't
Jessica Pigeau
I am a pedestrian. I walk nearly everywhere – approximately 2-3 hours a day. Today, I walked 50 minutes to work, 20 minutes to the grocery store, and 40 minutes home. Then, when I arrived at my building, I still took the elevator up to my apartment on the third floor.
Close friends of mine know that I do this because asthma and an old leg injury mean that I struggle with stairs and steep inclines in a way that I don’t with flat, urban terrain. It’s not that I can’t climb the three flights of stairs leading to my apartment – I can get up there as well as any typical able-bodied person can. The problem is that when I reach the final landing I will likely be winded, light-headed, and shaky on my legs like a newborn lamb. I will be tired and exhausted in a way that will require me to rest for several minutes before I start breathing normally again. If I do it often enough, I risk hurting my joints or re-injuring my ankle.
For this reason, I am cautious about when and where I choose to take the stairs. I try to maintain physical fitness in other ways that don't impact me as negatively. I walk, I swim, I lift weights. I try to recognize and accommodate a permanent physical issue that impacts my day-to-day mobility, rather than pushing it and hurting myself. When it comes to climbing the stairs to my apartment, it’s not that I can’t, it’s not that I won’t – it’s that I probably shouldn’t.
Autism Around Alberta – August 2018 Edition
The Transition Room
Erin Peden
Getting out of our house is a task; a huge task. I know a lot of you can feel me when I say this: people who can put their shoes on and walk out the door like it’s nothing, and who don’t look up to the heavens above and thank them for the obstacle-free-transition-life they’re living, are taking it for granted.
Our son, who is now eight years old, really struggles with getting out the door. And it’s not like you can bribe him with ice cream to get him moving faster – the transition itself is his road block. Going from Point A to Point B is straight up daunting.
And I promise you, I do appreciate that he requires extra time to process all impending change – as simple and as routine as that change may appear. Realistically, however, not being able to leave the house without chaos, tears and unexpected behaviour is a hurdle that I am tired of tripping over. I’m not sure how many times in my life I’ve begged the universe to give us just one smooth exit from our home.
Last August I started to work outside of the house again. With school beginning in one short month from my start date, I knew I had to come up with a strategy to be able to get the kids out of the house to school, and myself to work, in a timely fashion.
We do nothing in a timely fashion.
What I came up with was an easy concept, and the freedom it has given me each morning – not to mention the stress it has alleviated from my son – has been worth every speck of space I had to surrender.
Because that’s what I did. I surrendered my home office. The one, beautiful, quiet space in my house I could consider my own was handed over to my son. (And it’s perhaps the only thing I can claim to have done right since I started this parenting gig.)
Autism Around Alberta – July 2018 Edition
DATE CHANGE
Autism Alberta’s
Annual General Meeting
Do you want changes to be made so you or your loved one with autism will have a better future? What’s important to you?
Do you have thoughts about what Autism Alberta should be doing?
We want to hear your ideas at the Autism Alberta AGM! All members are invited to attend and to share their thoughts. If you have ideas you want to share, but cannot attend the AGM, please email them to president@autismalberta.ca.
Join Us For
Autism Alberta’s Annual General Meeting
Saturday, September 15 (NEW DATE)
10:00 AM – 3:00 PM
56 Holt St
Red Deer, Alberta
by 4:00 PM, Thursday, September 13, 2018
Child Care is available, but please let us know your needs by the RSVP deadline of 4:00 PM on September 13.
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Autism Around Alberta – June 2018 Edition
Traveling with Eric
Kitty Parlby
This spring our family of four went for a long-overdue vacation. Eric had been asking for YEARS to go back to Orlando. We went when he was around twelve years old; now he is twenty-one and a solid 6 foot guy. I clearly remember the challenges of the flight and the trip back then, and was not sure what to expect now that he is much older.
To start with, we picked the first two weeks of May to travel, when our older son Adam finished his term at university. In this way we succeeded in avoiding the most crowded times at attractions in Orlando. I did a lot of travel prep with Eric, including watching YouTube videos of attractions and rides, looking at photos of where we’d be staying, checking the weather in Orlando, and including him in packing for the trip.
Autism Around Alberta – May 2018 Edition
My Autism, Buried and Unearthed: How I Forgot and Learned to Remember Myself
A.J. Wells
I was diagnosed with Asperger’s Syndrome in 1995, at age eleven. At that time, I was going through a lot of difficulties: relentlessly bullied at school, and having no idea how to properly respond to what was happening to me. Prone to meltdowns and breakdowns, it should have been liberating to know more about myself, but the next twenty years were one long attempt to outrun my diagnosis, or forget about it entirely.
In my preteen years, my family discussed putting me on Prozac, but I went un-medicated through my teens and twenties. There was never any hard “no” to the use of medication; it just never happened, and I didn’t try to bring it up again. I did get aid from counsellors and support groups, but at the same time, I didn’t actually start to think differently about myself. There was never any conscious decision, but I gradually decided not to act as if I had Asperger’s. I decided that it would have no impact on my day-to-day life, or require other interventions.
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Autism Around Alberta – April 2018 Edition
Our New Look
If you are a new Autism Alberta member and an Autism Around Alberta subscriber, welcome. If you are already a member and subscriber, you will notice we have a new look. It was inspired by an easier way to put each issue together. We hope you will like the new look and that it will be easier than ever to enjoy Autism Around Alberta.
If you’d like to tell us what you think about our new look, or if you have any other feedback about Autism Around Alberta, please send us an e-mail at AAA@autismalberta.ca, Tweet @AutismSocietyAB, or visit our Facebook page. (more…)
Autism Around Alberta – March 2018 Edition
Proposed AISH Act Changes Allow Financial Security
Government of Alberta press release – March 19, 2018
New legislation would ensure that parents and guardians have more options to plan for the long-term financial needs of family members with disabilities.
Minister Sabir with families of Albertans with disabilities and advocates speaking to the introduction of Bill 5: Act to Strengthen Financial Security for Persons with Disabilities.
Autism Around Alberta – February 2018 Edition
#MakeDTCFair
On Thursday, February 1, 2018, Autism Canada testified at the Senate Standing Committee on Social Affairs, Science and Technology regarding the Disability Tax Credit (DTC) and the Registered Disability Savings Plan (RDSP). During this meeting, Autism Canada discussed our five recommendations for improving accessibility to the DTC and RDSP:
- Create clear, transparent and informed processes for applications, reviews and appeals;
- Develop clear, consistent and universally accepted classification criteria for disabilities;
- Uncouple the RDSP from the DTC;
- Monitor and evaluate population-based disability data at the federal level; and,
- Include the neurodevelopmental community on the Disability Advisory Committee.
Read the full Senate Committee Submission here.
Autism Around Alberta – January 2018 Edition
Siblings
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!
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.Autism Around Alberta – November 2017 Edition
Autism Alberta Alliance Update
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.
Marie Renaud, MLA
Autism Around Alberta – October 2017 Edition
Engaging About Autism
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.Autism Around Alberta – September 2017 Edition
President’s Message
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.
