A volunteer, parent-led support group for individuals and their loved ones with exceptionalities.
Author: Lennox & Addington County Autism Network
My name is Mandy Stapley, I reside in Napanee, Ontario. I am a mother and an advocate. Allow me to tell you why I started this community.
My passion is my child.
He has autism, severe autism.
He has been labelled non-verbal.
There are many labels.
But, I like his name best: Hank.
A few years ago, I met some amazing people.
The Blais, Piontek and Ross families.
They befriended me during a time I really needed someone, anyone to understand what I was going through as a parent of a extrodinary needs child.
These friendships grew into something greater than I couldn't have imagined.
It grew into a grassroots organization: The Lennox & Addington County Autism Network.
We began networking to build support, acceptance and awareness among ourselves as well as in our community.
Changes to the (OAP) Ontario Autism Program were (and still) are uncertain.
We wanted to begin something positive, while supporting people in our community.
The Lennox & Addington County Autism Network is a nonprofit organization providing opportunities to individuals living with Autism Spectrum Disorder (ASD), family/caregiver support, allowing everyone to achieve their fullest potential.
Autism Awareness Month October 2020, Feature Friday.
My name is Justin and I am 45 years old. I live with Autism Spectrum Disorder but there’s a lot more to learn about me then just an autism label.
I have many hobbies like; doing crafts, listening to music and volunteering.
My ultimate past-time is making collages. My favourite collages to make are ones including MyFM radio station. MyFM holds a special place in my heart and I really love spending time there.
Before COVID I did some volunteering at MyFM and I can’t wait to be able to go back. During my time at MyFM everyone was welcoming and nice to me, that’s what made it so very special.
Being able to volunteer was fun because I got to try new things. This was really fulfilling to me because it gave me responsibilities that were meaningful. I love being able to work and be a part of a team.
I have been living with Community Living since 2002 and I’ve been doing well there. There is a house cat named Taj where I live, he’s a good friend to me.
(Community Living supports individuals with intellectual disabilities live to their fullest potential within their community as independently as possible.)
When I go to social events, with family or friends I like it but only for a little bit then I like to recharge alone. I prefer to do things alone compared to groups of people. Being with people makes me feel tired, just being around a lot of people is exhausting.
(Masking is when an autistic person hides their feelings and discomfort in situations from others. Keeping secret what’s really going on inside them to “blend-in”.)
There is one thing I would like everyone to know about me, especially my neighbours, is that I am a very happy person. I’m a nice person and no different than anyone else really.
If someone wanted to be my friend, they could ask me how I am doing. It’s nice to have friends to make sure I am doing well and check in on me to see that I am doing ok, and I would do the same for them.
Special mention goes to Becky Hinch Photography, for making these portraits possible. By contributing her time and talent in such an amazing way this campaign allowed us to raise awareness of ASD in a beautiful way.
Thank you for making our community a better place!
If you want to see more of her great work, check out the Facebook link attached below.
Tonight our walk was beautiful, but not without its challenges.
The leaves on the trees were changing colour and dropping to the ground. There is so much beauty in seeing the change in this season and watching the earth prepare for winter.
As Hank and I walked along the path, I could hear the all too familiar sounds of fall. Leaves crunching under my feet, grass being mowed, water rushing down the river and fishermen chatting over salmon running up river.
These sounds so familiar and soothing to some are harsh and new to some. Hank, immediately grabbed for his ears and I knew in that instant ‘mom forgot the headphones’.
The cycle begins, Hank starts stimming to drown-out the busy unfamiliar noises. Humming and whistling familiar Thomas track sounds from YouTube videos that seem to bring him comfort in times of stress.
I instantly felt like a failure, ‘how could you forget the headphones’. We had to try, so we pressed on.
Hank began to enjoy the sensory-seeking feel of walking backwards down the path.
Most passers-by were friendly and warm. One gentleman did a “boo-scare-tactic” that had little to no effect on Mr. Hank. He continued walking backward as if no one said a word. I couldn’t help but chuckle, the man was so proud of his “boo” sound and action.
As soon a Hank wandered onto the boardwalk section, I could feel my heart pound a little faster and there it was – HELLO ANXIETY old friend.
You see, Hank LOVES water.
He is drawn to it. He craves its sensory.
Only problem, Hank can’t swim.
Hank is often unpredictable around water.
He is fast.
He doesn’t understand reasoning.
‘If you go in the water, you will be all wet and cold’
‘The water is deep, and Hank can’t swim’
Hank has always had a habit of splashing/sitting in EVERY puddle. The where, when or why doesn’t really matter.
We took the boardwalk slow, lots of prompting and first/then coaching moments. Unfortunately there was some blocking of behaviours along the way, thankfully they didn’t last long and were easily redirected.
Not all stories are perfect stories, we have hard times.
I struggle with sharing these hard times, the down right heart wrenching times. It vulnerable, but also not fair to Hank.
To all the exceptional families out there. I see you. 💙
Today was mostly a good day and I’m so thankful for that.
Many parents and caregivers are learning for the first time what an individualized educational plan or IEP is used for.
I’m not going to sugar coat it, it’s been quite scary for me. Each time I enter these meetings I feel just as anxious as the last. Somehow wondering if I’ve done enough to make sure educators and support staff know everything they can to ensure my son is safe and cared for to be able to learn in his own way.
I for one, have at times, felt in the dark and powerless in what has gone into my sons IEP.
It has taken several years for me to discover parents and caregivers have a lot of say in what goes into these plans.
Things to keep in mind when looking over your IEP and heading into a meeting:
1. Write a list of issues that you feel are important.
2. Prepare your own questions and items to address.
3. To be prepared for the process, request the school provide you with evaluations, proposed goals, objectives, and placement recommendations prior to the meeting.
4. Written notice of the IEP meeting will include a list of participants. If you’d like a speech therapist (or any other person) who works with your child there regularly that is your right.
5. Keep in mind this year may look differently and may be a virtual meeting.
You can request a meeting to discuss an IEP at any time. If you feel it is not being followed, speak up and put it in writing, this is important. There is a legal obligation to follow an IEP.
My name is Noah. I am almost 16 years old. I will be getting my drivers license this winter.
I have four cats and two dogs. My favourite pet is Arwyn (cat). I love spending time with her because she’s very cuddly and she makes me feel calm. When I was 5 years old I was diagnosed with Asperger’s Syndrome with ADHD. If I could explain to my neighbours what it’s like having Autism, I would tell them it’s been hard making friends and I feel overwhelmed when I have too many things to try and focus on at one time.
Autism has also been good for me because I’m very smart and am really good at things that I’m interested in, like computers and hockey. Since we were able to have an early diagnosis and intervention, I have been able to work towards better social skills and learning how to push myself out of my comfort zones.
A lot of people do not realize I’m ASD but it doesn’t mean I still don’t have struggles every day. The day can be extra exhausting trying to keep myself together for other people. This is why I enjoy alone time. In my spare time I like to play games on my phone, draw and play hockey. I have been a house league goalie for Napanee Stars for about 7 years. I prefer to do things alone but sometimes I enjoy hanging out with friends.
Something about myself I would like to share is that I have awesome curly hair and usually like having it long. In a few years, I hope to go to college and have a career in Computer Technologies.
Special mention goes out to Becky Hinch Photography, for making these portraits possible. By contributing her time and talent in such an amazing way this campaign allowed us to raise awareness of ASD in a beautiful way. Thank you for making our community a better place!
If you want to see more of her great work, check out the Facebook link attached below.
When it was first announced back in July, Netflix’s Love on the Spectrum caused a big stir in the autistic community. The show follows a group of young adults on the spectrum as they navigate the world of relationships and dating. While these things are challenging for neurotypicals, they can be even more so for people on the spectrum. How would the show’s producers treat their subjects? Would they present a balanced and realistic view? Or would it be overly sentimental to the point of being saccharine?
As part of Autism Ontario’s broader initiative to examine how autistic people are portrayed in the media, we assembled a focus group of adults on the spectrum to review Love on the Spectrum. The group consisted of self-advocates Aaron Lenc, an employee of the City of Brampton; Matthew Lemay, professional writer; Courtney Weaver, freelance writer; and, David Moloney Autism Ontario Board Member. Michael Cnudde, self-advocate and Specialist Communications and Project Development, Autism Ontario, moderated the panel. Aaron’s mother, Tania White was also present.
“I was enthusiastic about it when I first heard about it,” says Courtney Weaver. “There are unfortunate stereotypes that autistic people are incapable of romantic love, or just don’t want romantic love. It was interesting to debunk this stereotype.”
Aaron Lenc looked forward to the show for another reason. “I really liked this show because I want a girlfriend, but I want to learn how to date. I learned from it and it was a good start.”
Other panelists commented on the presence of Jodi Rogers, a relationship expert who works with people on the on the spectrum on the show and provided guidance and support where it was needed.
“I personally really liked Jodi. I have worked with people like her in the past,” said Matthew Lemay. “I feel like the general population thinks that after a certain age people with autism don’t need help, and that’s not necessarily true. She was a wonderful addition to the show as she was able to bridge the gap between what people were needing.”
The idea of having someone acting as mentor is important, said David Moloney. “They need to proceed with the utmost of care, and really listen to the people they are profiling.”
“I thought it was easy to watch, refreshing, and the candidness of the participants on the show was so good,” said Courtney. “I laughed out loud when one of the established couples said, ‘When it comes to the two of us as a couple, I am fire, and he is water. When we are together it gets steamy.’
Aaron found the series very accessible. He watched all five episodes first by himself, and again with his family. “We paused and talked about what was happening,” said Aaron’s mother Tania White. “That was very helpful and a great resource for us as a whole family.”
Each panel member seemed to have their own favourite cast member. For Matthew it was Michael, whom he expressed a kinship for. “I had a few that I liked… I enjoyed Jimmy and Shenae. They were cute as a couple and their experience was lovely. It made me teary.”
“My favourite person in the show was Olivia Sharp,” said Courtney. “When she said, ‘Living on the spectrum was like living in a transparent box.’ Mentioning that barrier between people was an astute observation.”
Aaron found the show very relatable. “I liked Kelvin because his autism was like mine, he noted. “I hope there is a second season.”
All the participants agreed the series was worthy of another season and hoped its producers would expand its cast to make it more diverse to include Black, Indigenous and people of colour as well as more LBGTQIA2S+ representation.
A second season would be especially useful, said Aaron’s mother Tania because it might also explore understanding rejection and picking up social cues. “Even being able read the cues so it doesn’t cross the line when experiencing rejection is a necessary skill.”
An issue for many portrayals of autistics in the media was inclusion, fairness, and realism, which the panelists discussed. “I agree that people were portrayed fairly,” said Courtney. “With the genre of reality TV, there is a certain narrative and 1:1 interviews and editing take place within this genre. This was done as organically as you can do this.”
Matthew agreed with Courtney, adding, “There are certain editing and narrative decisions in a show that are unavoidable, but people were treated and portrayed as organically and fairly as possible.”
It is important for producers and writers to listen to people on the spectrum, said David when portraying people with autism. “Often people cast individuals who aren’t representing people on the spectrum as they should be…We should be represented as diverse, appreciated, hard-working, welcomed in society, and enhancing the social framework. Inclusion everywhere.”
In the midst of all that’s happening around the world right now, we still have so much to be grateful for. Thanks to your generosity and support, our network and events have continued to make an impact in the lives of people living with ASD.
From the bottom of our hearts, thank you! The team at the Autism Network Lennox & Addington County. (LACAN)