Autism Awareness Month 2020

Originally published on http://www.itsybitsybalebusta.com
04/2020

When online learning started in March, I shared on Instagram how I was having a hard time finding a reflection of our reality as I scrolled through my feed. Seven weeks later, it’s almost weird to feel like this is our norm. Mornings spent getting through showers, laying out uniforms, making lunches, updating communication books and filling up backpacks have been exchanged for a much slower pace. We’ve settled into our new routine which includes zoom sessions and tele-therapy. While N is able to (for the most part) sit and participate in virtual circle time and lessons with his class multiple times per day, the photo above is what online learning looks like for Y.

For the past three years, he has received intensive therapy through the autism program offered in his school. When the school closures were announced, my fears of regression grew exponentially. Without the necessary consistency required of his program, consistency we had done everything to maintain for the last 3+ years, I couldn’t see how regression would be avoidable. While the last five years of this journey has thrown multiple learning curves my way, learning how to advocate through a pandemic has definitely been one of the most interesting. M & I are very involved in Y’s programming and with all aspects of his therapy. With the school closures, we didn’t just have to adapt to the pandemic version of homeschooling, supporting our three children under six through a chaotic and confusing time, working from home and navigating our way through Pesach, basic errands, groceries and more, we also suddenly became stand-in therapists. Together we developed our own “Get Y Ready For Pesach” program! We used techniques and strategies we had learned over the years and began to fade out chametz and prepare for a three-day yuntif (where routines would be further changed out of their norm than they already had been). I’m so proud to say our preparation and “program” was successful! Y’s resiliency and ability to adapt is astounding. 

Now that school is back in session so to speak, the above photo is what e-learning looks like in our home. It just so happens that Autism Awareness Month fell during quarantine. While the phrase, “If you’ve met one person with autism, you’ve met one person with autism,” stands true, I feel like it’s important to share what learning right now may look like for families like ours.

Basically from birth, Y has always responded to music. Although he was colicky, over time, certain songs and sounds began to soothe him. Over this past summer, Y’s ability to communicate really began to pick up. We would frequently hear back from his team about how attentive he was during his group music sessions as well as how he’d participate and was more willing to put into practice different strategies he was learning in other areas specifically during this therapy. M & I spoke about it and although we were concerned with how full his schedule already was, we decided to go ahead and add music therapy. I was very clear that I didn’t want this to be work for him. I didn’t want him to have a ton of expectations and I didn’t want the other therapies to overtly partner here, as they did in other areas. I wanted this to be a space where he could enjoy music and where it could soothe him and help him continue to put into practice everything he had been learning naturally and, for the most part, independently (or at least more so than we had seen in other forms of therapy). I wanted him to know that we had “heard” him, so to speak, and understood that music had an impact on him and that we wanted to embrace and encourage it!

I could not have anticipated the results we’ve seen. I’ve learned (and frequently been told) to remain realistic. It’s not a phrase I like, but it is something I’ve come to at least partially understand. I truly believe Y is capable of everything and anything and will always advocate as

such. When it came to music therapy I had two motives – I wanted him to be happy and feel heard. N can tell us that he likes certain activities and expresses his hobbies and interests clearly. I strongly felt that Y was attempting to do the same through his engagement with music and I wanted him to know we recognized that. Months later, not only does he absolutely love these sessions, but the following three words speak for themselves – he is thriving.

Quarantine has been HARD, don’t get me wrong. When you go from 36 hours of professional intensive therapy a week to almost nothing for 5+ weeks, it’s definitely a shock and challenge. Behaviours that had been addressed begin to emerge again and the fear of regression hangs overhead like an ominous cloud. Given all that, without quarantine I would never have attended or participated in a music therapy session the way I’ve been able to these past few weeks. It may seem an odd thing to be grateful for, but I am nonetheless. 

We are beyond blessed to have an incredible therapist working with Y. Her patience, sensitivity, encouragement, warmth, and undeniable skill are extraordinary. Our family has known and loved her for years, but working with her directly through these sessions (and through a pandemic) has only further solidified how in awe we are of her. She has not only supported Y these past few weeks, she has provided me with endless amounts of hope, encouragement and kindness. I have cried during more than one session. I have been completely amazed at how motivating music is for my son. How through it he attempts to form words, how he is able to follow instructions, understand expectations, and participate appropriately and meaningfully. How he doesn’t want it to end and will work even harder those last few minutes to extend the session, even attempting to verbalize “more”. How he gets past the difficulty of working virtually and will connect with his music therapist through a screen. How he listens to her and will look right at her on that screen. How he has the freedom to make choices and guide the session through selection of instrument or song. I have watched my son flourish and thrive during these sessions. 

I would be lying if I said it was without challenges. There are moments that are more difficult than others, but on the whole, it’s an undeniably positive experience for him and one which has effects that filter into so many other areas. Because of these sessions I know he understands his visuals, he knows that he is able to make choices and be heard through using them and he puts into practice taking turns, following instructions, understanding expectations and so much more!

Having Autism Awareness Month fall during quarantine this year highlighted so much for me personally. Regardless of the fact that we’ve been helping our son navigate this journey for the last 5 years, being able to see his resilience has been inspiring and has taught me so much. Being able to attend his virtual therapy sessions has been so eye opening, both in terms of how hard he works and how much prouder I am of him and every single one of his results, seeing the effort and determination first hand. Usually I feel like this month is reserved for sharing awareness with friends, family and across social media, but given the circumstances this year, I’m the one who, over the past month, has gained the most awareness in so many ways – ways that I hope will better shape the way I not only relate to my son but also to his therapy going forward! It’s one thing to be on top of the therapy and communicate with the team, attend meetings, request and view data, adjust programming here and there or attend parent training or host in-home sessions. It’s something else altogether to help carry out a session, to witness his resilience, determination, and ability to adapt and work through regardless of the chaos and upheaval to his routine, schedule and structure. Each day I say I couldn’t be more proud, but that’s quickly disproved the next day as my pride only continues to grow! Virtual learning is by no means easy for our family, but we’re adapting where we can, advocating for alternatives where we can’t, and learning more about each other and our strengths than ever before. And while it’s not the Autism Awareness post I was planning to write this year, it couldn’t be more fitting. Potential, capability and resiliency through determination are three concepts that should be synonymous with our son’s diagnosis and, if nothing else, I hope that is what you’re able to take from this post and what I’ve shared today!

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