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Recognizing Autism Awareness Day During COVID-19

· autism,COVID-19,disability,light it up blue,advocacy

“.... Since we first learned of COVID-19 as an emerging public health issue, Ontario has been diligently monitoring the developing situation to protect the health and well-being of all Ontarians. We have also taken decisive action to ensure the province's health care system is positioned to be ready for any scenario. Given the latest developments both internationally and here at home, today we are taking further action. Based on advice from Dr. David Williams, Ontario's Chief Medical Officer of Health, and the experts at the COVID-19 Command Table, the Minister of Education has issued a Ministerial Order to close all publicly funded schools in Ontario for two weeks following March break, in response to the emergence in Ontario of COVID-19. This order was approved by the Lieutenant Governor in Council. This means that Ontario schools have been ordered to remain closed from March 14 through to April 5, 2020...”

“... Public schools will remain closed to teachers until Friday, May 1, 2020, and to students until Monday, May 4, 2020. As these dates come closer, this decision will be re-evaluated based on public health advice. The closure may be extended if necessary to protect the health and safety of students, families and staff. Private schools, licensed child care centres and EarlyON programs will also remain closed until April 13, according to the Declaration of Emergency, which only allows closures to be extended for one 14-day period at a time. Select centres designated to support frontline health care workers and first responders will remain open…”

MOM BEHIND THE LABEL: I feel like I am suspended in time. For once in my life I am not feeling like a taxi driver, shuttling one kid to an extracurricular activity while hurrying the other kid to their countless therapy sessions and appointments. For once in my life I am finding myself away from my inbox, because I have no funding application to follow up on, or need to follow up on a request I advocated for to ensure that my daughter receives the appropriate resources and support she requires. For once in my life, I am forced to pause and to be okay with what is happening in the now. For once in my life, I am forced to find a reason to smile, as this is the only way to cope with what is happening in the world today.

To be honest, after being at home over the past 2 (going on 3) weeks, my family and I have found our new norm. We wake up when our eyes want to open, we eat when we feel like we are hungry (or not), and we are learning to just be in the company of each other. Just like you we are also learning to enjoy being suspended in time, practicing patience and presence.

LAURA: I am writing from the perspective of an ASD Community Class Teacher and a new parent. As I head into the home stretch of my maternity leave, I am travelling through this COVID-19 pandemic with an additional set of eyes. As a mom of 15 month old twins, I look back at the past year and sometimes joke that I invented social distancing before it became mainstream. It takes a mountain of physical and mental effort to pack up two babies in snowsuits, boots and hats to go for a walk in the neighbourhood or go to a baby class - but I do it sometimes more for my socialization than theirs. Lucky for me, my kids are never lonely. They have a built in friend/enemy/wrestling partner all day long whether they like it or not, and therefore I have never really felt the dreaded mom guilt of "under programming" or "staying home" that so many others have shared.

The first few days of the pandemic I spent scouring Pinterest like many other moms (something I vow to almost never do as a special education teacher ;) for a way to make learning in a pandemic different. But like Andrea, I came to realize quickly that these ARE different times that cannot be ignored and should be embraced in any small or positive way that we can find. For that reason, we nap when we are tired, spend lots of time with our Dad and watch way too much Wiggles than I'd care to admit. Within these parameters I think I have seen the biggest degree of social change within my kids that I have seen over the course of the last year.

MOM BEHIND THE LABEL: Today is the thirteenth annual World Autism Awareness Day. Every year, international communities, hundreds of thousands of landmarks, buildings, homes and communities around the world come together on April 2nd, Autism Awareness Day, to Light It Up Blue in recognition of people with autism and those who love and support them. However with today’s global pandemic, are our children and families who live with autism remembered? Will the teachers, educational assistants, support workers, remember us during these uncertain times? Today I am writing this joint blog post with my colleague, Laura Seckington (aka @asd_teach) as we join forces to share our thoughts on how our roles as a parent and educator intersect. Let us all unload our worries for the immediate and distant future. Let's find a way to meet our own needs while dealing with those of our families that feel overwhelming.

~ Time Out ~

MOM BEIND THE LABEL: So what have I been doing for the last 2 weeks? To be honest… nothing. We play inside, we play outside, and when it's raining we play upstairs and then go downstairs. And YES, we do screens too! For the first time I was able to let Bella and Petie just be, as we were all learning how to be bored together.

If you want me to put this in edu-babble, I was unintentionally taking this time to know my learners. This time is not only allowing me to slow down and to let Bella just play, wander, stim (and stim some more), but it has turned into an opportunity to build my mindset of having no plans, whatsoever; and that is okay! Yes there are countless points during the day where I’m singing Old MacDonald for the hundredth time, but as I sit here in silence writing this post I’m realizing that in order for effective learning to take place now (and in the upcoming months), both my kids need a break from routine too.

LAURA: I often find parallels between my life as a Mom of young children and a teacher of students with ASD. I want to program for them and teach them myself and I am constantly awe struck when they pick up skills organically. I remember the first time they started moving their bodies to music. I thought, "wait...who taught them that?" Before realizing that kids just learn this stuff all by themselves without programming, repetition or direct teaching.

So why are parents afraid to slow down and turn off? As a teacher of exceptional students, my summers run 3 months long. There is July and August where my students are at home, at camp, with cousins, on play dates, watching iPad for hours a day maybe - and then there is the third month of summer, September, when my students come back to structure, expectations and rules that they must "re-learn" before really finding their groove in October.

I am generalizing here, this may not be the case for all students but in my experience it is a very real and totally acceptable truth. Does learning sometimes take two steps forward and one step backwards when programming takes a pause for months at a time? Sure, maybe. A student may need some time to get back into the routine of changing into indoor shoes or walking in the hallways again, but let's consider the small yet mighty social gains they may have made while at camp, their cousins house, and spending more time with family. Maybe they now take their plate to the sink after lunch or have finally kicked the habit of leaving the washroom door wide open. Parents, it is OK to NOT be an educator. It is OK to let some skills lapse, they will come back quicker than before. Focus on creating meaningful experiences for YOU and your children during these trying times. They will still grow, they will still evolve. Trust me, we notice and appreciate this every September.

~ Tag You're It ~

MOM BEHIND THE LABEL: For the past few years I’ve depended heavily on Bella’s IBI clinic and her Community Class team at school to foster her academic learning. I have always raved about Bella’s Breakthrough Autism team, as they continue to be a strong pillar in building her foundational knowledge with life skills to help her become more independent in her communication, social relationships, play, self care. At school, Bella’s teacher and support staff have always provided multiple opportunities for her to demonstrate her learning from a clinical environment into a practical environment, allowing her learning to be intentional and purposeful.

As the March ‘break’ quickly came to an end, and as the COVID-19 global pandemic is constantly changing day to day, what does April (and beyond) look like for our family? Bella’s IBI therapy, education, and social interactions have quickly come to a halt, and many families like ours are now assuming the daunting task of creating a physically and emotionally safe environment where learning is dependent on the parent/guardian/caretaker.

Shit…. I’m IT. It’s all on me.

Here’s a picture of Bella this past Monday, as I attempted to deliver some of Bella’s IBI programs. Please give me some props for trying...

LAURA: As educators across the world try to figure out how to feasibly reach an audience of students without face-to-face interaction, there is a harsh reality. Parents are not off the hook. For students with exceptional learning needs (and even those without), parents will need to be the messenger of programming as it is translated from the teacher in their home to the student in theirs. While I'm still on a leave I will be an innocent onlooker in this science experiment, but I have one small word of encouragement for Andrea and those parents out there who have been 'tagged.' You ARE it, but come've always been IT. From the moment your child was born, entered school, got their first diagnosis, their second, their third - YOU have been their parent, teacher, advocate, SLP, OT, personal assistant and best friend. You've been doing it all along and you can do this, with the help and guidance of your child's school network. We've got your back but we know you have ours as well.

Deep breath in, and slow breath out.

~ Play ~

MOM BEHIND THE LABEL: Play can look, sound, and feel very different for people with autism, as it may be a very different experience for their visual, kinaesthetic, and auditory learning. Sensory issues often accompany autism, where the person may have difficulties processing information taken in through their senses. This might include:

  • Being overly sensitive or under-reactive to touch, movement, sights or sounds.

  • Activity level that is unusually high or low.

  • Difficulties with coordination and/or motor skills.

  • And even a presentation of challenging behaviours.

Since I’ve learned about Bella’s severe autism diagnosis at the age of 3 years old, I have always been on a constant hunt to Feeding Her Sensory Diet to learn more about the value of how she plays. I enjoy looking through the weekly toy flyers, and harassing my fellow mom-friends who are ready to let go of their toys.

“My name is Andrea, and I am a hoarder of baby cause-and-effect toys.”

So how much is too much toy stimulation for a child at home right now? Where do I draw the line for banging/licking/spinning toys?

LAURA: Play is a skill that we take for granted in neurotypical children. Another anecdote from my own kids was the first time they picked up a spoon and pretended to feed their doll. I was floored. I had a task box in my classroom once that contained only a baby doll and a bottle and photos of kids feeding dolls as picture prompts. For some of my students this task took an entire year to learn. Play is important, but knowing your learners, or your child, is more important. A Grade 5 boy probably does not want to play with a doll - but if he does, do you provide that opportunity? Just because your child has ASD doesn't mean they are going to love a box of beads or play-doh, nor will your living room rug if they don't have the experience and rules associated with it.

Here are some things to consider:

  • Is the play age appropriate? Do we care if it's not? (Not a black and white answer and differs greatly for each individual child)
  • Is the play monopolizing time away from other activities, such as joining the family for a meal or socializing with family members? On the other hand, does it give you a solid half hour of work or time for yourself?
  • Does the play give way for social interaction with a caregiver or sibling?
  • Is independent vs. parallel/turn taking play more of a priority for your child to work on? This may guide your activity - iPads are not evil and with parameters can be a great way to teach independent play skills.
  • Can the play involve physical activity? Getting your child up and moving will have great benefits for their mood, sleep and attention
  • Parents, don't do this all on your own. Contact your child's teacher (they are available now!) and ask them for direction on what activities to provide for your child. 

For a lot of kids, the classroom can be their favourite place with their favourite things where they probably do a lot more than you think. Find out which iPad activities their teacher recommends or which sensory materials they have had success with first.

~ Survival Of The Fittest ~

MOM BEHIND THE LABEL: As a parent, there is no prep time. No time for a break where you can program, plan and reassess your next steps. So here’s my million dollar question for you… If you had to choose one activity for your child to do everyday, what would this activity be? What area of academic, social or life skills programming would be your priority?

For me, my million dollar answer to survive in this pandemic, is physical activity. Watch yourself, I see you rolling your eyes at me! Everyday, I make it my mission to get my kids outside. From riding their bikes, playing basketball on the driveway, and even letting Bella stim between the fences so that I can just get a break.

With the current social distancing guidelines, we are now all forced to stay at home. I don’t know about you, but on those rainy days I kept looking out my windows to find just a break of dry pavement to gear up the kids to get a breath of fresh air, as I’ve learned the moving kids = happy kids!

The Ability Toolkit was developed to help parents and guardians support their child or teen with a disability meet the Canadian 24-Hour Movement Guidelines for Children and Youth. The Ability Toolkit provides information relevant to adapting the guidelines to the unique movement abilities of children or teenagers with any type of disability. As young children grow and develop, they need to work towards high levels of physical activity, low levels of sedentary behaviour and sufficient sleep each day to be healthy — they need to Move, Sleep and Sit the right amounts.

So what are your current beliefs about physical activity? Is physical activity an important part of your life? How important is your wellness to last through this COVID-19 pandemic? How do you create an environment to support a culture at home that values physical activity?

LAURA: People with ASD can thrive in predictable environments where they know they are in control and have access to the things they need and the things they want. To provide comfort and routine, parents can reach out to teachers for support in setting up the following basic systems to support their child at home. All are fairly easy to setup and use and can be used in multiple ways. Your child might be OK with you setting up a schedule in your own way, but they (and you) may prefer to copycat a system that is already being used successfully at school.

Your ASD COVID-19 Survival Guide:

  • A daily schedule that is predictable and leaves room for flexibility and choice throughout the day
  • A simple first/then board to lay out tasks that may be harder for your child to complete (I.e. first shower/then TV)
  • If it fits your child, a weekly schedule that outlines bigger events for them to look forward to (I.e. FaceTime with Grandma, bike ride, cooking day)

  • Reinforcement (can be structured such as a token board or unstructured - consult with your child's teacher for ideas on when/how they are reinforced at school and for how long)

Every spring we gather our family, friends, colleagues and students to celebrate World Autism Day on April 2nd. On this day in 2020, we are thankful yet again for our exceptional children and students and the extraordinary systems we have in place to support them.

But most importantly, we are grateful for the health of our families and friends and for the opportunity we have to remain safely at home with our loved ones during COVID-19. If you know someone who has Autism or is living with someone with Autism, reach out to them and see how their days are going. Ask if their child has access to their favourite food to make the days a little more predictable, or connect with a non-verbal child or their parent through video.

We are all struggling to adapt to this temporary reality together in an attempt to stay afloat in the waves of newness.

For more resources & supports for children with and without disabilities, check out Holland Bloorview's COVID-19: Tip Sheets & Resources.

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