Are you struggling as an ASD caregiver during COVID? Let’s check in.

2020 is chalking up to be a most (the most?) unprecedented year – full of many twists and turns, ups and downs and head scratching “what should we do” moments.

So, I wanted to check with all of you. How are things are going in your world?

How is remote learning working for our kids, you as parents and caregivers? From what I am hearing from many of you, and maybe even most, I take it not too well. For me, like so many parents, I did not have an expectation that in-person school would be back right away, but I did think that remote learning would be better than what we experienced last spring. Well, our experience certainly hasn’t been, and I say this with huge compassion and empathy for teachers and districts. But the reality is, this is hard for everyone!

While the struggle is certainly real, I have found reasons to be hopeful. I want to share Maci’s (my 15 year old daughter with ASD) experience so far this school year and share the lessons I have learned in the hopes it can help you too.

At the end of August, I received the email about Maci’s school starting in September. Our school is private, so we did have a choice of either remote learning with a support person coming to the house or in person learning at the school. Initially, I chose the remote learning with support or, as they called it, Telecube learning (I mentioned in my last blog). However, when it came time for this Telecube learning to start, it really didn’t. As you can imagine, at the time, I was extremely frustrated. The lack of structure left me feeling huge anxiety and frustration over how much time had been lost. I decided to send Maci back in person to see if that is better.

So, Maci started back to school and even with the masks, taking temperatures and fewer people, it was wonderful to feel something was back to somewhat normal again. The transition was good and I felt a sense of relief.

Now, you are probably thinking ‘wow how awesome you get to go back to school. We are still in remote learning, dang!!’ I was thinking that same thing until last week when, sure enough, Maci’s behavior started changing and her sensory needs began to surface. At first, I wasn’t too concerned but after about a week of every afternoon’s activities staying the same – play with sand, play with a bowl of beads, jump around… all afternoon long – I knew it was a problem and a sign that something wasn’t going well.

I pondered and thought long and hard about what I should do. Coincidentally, I had signed up for a 3-series conference through the Profectum Organization – a resource I highly recommend and trust. The timing could not have been more perfect. The topic was Feeling Connected: Strategies for increasing your child’s engagement during remote learning and teletherapy sessions. It was a great series focusing on my favorite strategy (remember my blog?) the 5 C’s.

One of the areas we discussed in the session (and I was 100% feeling for myself) was worry and anxiety over Maci’s growing behaviors. I was observing that she was

  • Acting more aggressive
  • Sleeping poorly
  • Restricting her eating
  • Acting less independently
  • Becoming more rigid and oppositional
  • Acutely more sensitive to sensory input (especially for me)
  • Unable to manage her emotions – unpredictably up and down
  • Struggling with attention and focus
  • Not able to communicate or relate to me
  • Tending toward isolation and wanting to be left alone

Super challenging and frustrating. Especially since I strongly felt we had blown past these behaviors and Maci had moved beyond to a better “place.” Answer???? The Profectum sessions reminded me that we needed to get back to the 5 C’s!

The 5 C’s tell us that we need to give ourselves permission to let things go and focusing on the things that truly matter. This is a great illustration.

So I share my story and my “aha” moment with you in the hopes it will bring some sense of calm and direction. This is a unique time. An opportunity to make this a journey with your child – explore it together. Be open to:

  • Observing without judgment, be curious, open to learning together as you go
  • Being mindful of our child’s unique developmental needs and learning style, PLUS finding a style that is workable for you
  • Giving yourself permission NOT to do everything…perfectly
  • Putting the quality of the learning experience ahead of performance/productivity (my favorite!)
  • Doing things for yourself/taking care of yourself

I am checking in with you to find out how you are doing 7 months into the unprecedented times of COVID. You should be checking in with yourself and your child regularly. That is the most important. As I did this for our family, I realized the ways I can help Maci’s school, teachers, therapists and our family manage better is through the 5 C’s.

I am spending more time sharing information with Maci’s “team,” writing down each day what I see in her behaviors, what things are working well and things that cause her behaviors to regress.

I’m choosing to believe the silver lining to this year of chaos and uncertainty is truly learning what my child needs to thrive. Her behavior tells me what she needs. I encourage you to be observant and focus on what lessens your child’s anxiety and brings them joy. There are so many things that threaten to take us away from our family, health and wellbeing; things that too often only give way to anxiety and disruption.

The Profectum Organization is offering several more sessions and mini online conferences during this time for free. Wonderful topics and outstanding speakers.

Sending each and every one all my best for your wellbeing, health and safety.


Marikay Cuthill is mother of Maci, a vibrant, curious 15-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com


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