Autism Around Alberta – May 2019 Edition
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!
Autism Around Alberta – April 2019 Edition
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.
Autism Around Alberta – March 2019 Edition
Life's A Journey – Enjoy the Ride
Nicole Park
A parent's journey – Childhood to youth
In 2008, it was clear to me that if I wanted to ensure my son had as many positive experiences as possible, I needed to make it happen. My community had a great track record of strong parents of children on the autism spectrum who strived to organize resources, provide support for other parents, advocate, solidify community partnerships, and create opportunities for their children. These were the people I would follow. At the time, I didn't know why their society folded; sadly I understand now: they were burnt out.
With one parent, in particular, I wanted to pick her brain. Our sons were much the same, although her son is seven years older than mine. Both of them are moderately-to-severely affected by ASD.
Some days dogs barking really are the best!
For about seven years, I worked hard to ensure that my son, and all children with autism in my community, had opportunitities for new experiences and recreational activities. I opened my home and made myself available for parent support. My initial burnout came when I realized that the opportunities I had worked on and implemented for years were not what my now-adolescent son needed – he was now a (very) young man. Anxiety set in… and to say the very least, I didn't handle it well. I tried many constructive and not-so-constructive ways to move forward and on to what my son needed next. Today I am coming out of the fog of panic, depression and feelings of isolation; my strength is growing. Today I am grateful for my healthy, smart, full-of-personality son who is now almost 14.
Autism Around Alberta – February 2019 Edition
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.
Autism Around Alberta – January 2019 Edition
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.
Autism Around Alberta – December 2018 Edition
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!
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.
