On March 12th school abruptly stopped. COVID took over our lives. Here we are almost 6 months later and it’s hard to believe all of these months have passed and we are still essentially locked down with no answers or solutions for going back to school. I assume you, like me, have waited patiently to find out what going back to school would look like and what, if any, options were available for our “special needs” kids.
So here we are, and at least in the Seattle area, we are relegated to remote learning for an unforeseeable future. The jury is still out on whether this really works or not. In my experience, and others that I have spoken with, this seems to be hit or miss depending on who is implementing the program and how they are executing it. I remind myself that it is all new and never been done before so we shouldn’t be judging this format, the goods and bads, so quickly.
Rationally, with the virus still threatening, I suppose this conservative approach makes sense. However, when you have a 15-year-old, special needs kid, already far behind educationally, I struggle not to be extremely frustrated, concerned and worried. Does no one care?? Do you feel it too?
In two days, it will be the first day of school. Our school sent a calendar and schedule last week. I reviewed it expecting to get more information and see a full day of classes. Instead, I saw a thin outline: 9:00-10:00 am group class, 10:00 break, 10:15-10:45 – 1:1 learning and then nothing? The entire week was just this, 1 hour and 45 minutes a day. Again, I was left thinking, does no one care?
During these past 6 unprecedented months, we have carefully provided support for Maci. At our own expense, we explored options for in home educational therapies; some online, some home-based programs. We incorporated social play dates and activities.
The burden has fallen primarily on me and I did it without complaint. I put my life on hold because this is what needed to be done. I practiced patience and understanding because the situation was what it was. All along I have listened, waited, followed all the rules, not complained (well mostly not complained), while trying to see the bright side of getting more time at home with our family.
However, I am struggling with decisions made by others that ultimately impact my daughter and her quality of life and further education. When I watch masses of people gathering with little regard for the safety of others, no consequences for their actions, and, for some, no punishment for their unlawful behaviors and total disregard for law and order in our communities, it makes me angry.
I can’t help myself thinking does no one care about the ones that are getting left behind? Before the virus, special needs kids and our families were playing the game of catch up everyday. Everything we do for our kids is to help them to one day, God willing, be independent, self suﬃcient and happy. We drive our kids to therapies, programs and activities and they work very hard to improve their skills. What happens to them when, like now, this all stops? Does no one care?
6 months has passed but it feels like 6 years. As I watch this evolve – beyond just our special needs kids — all parents are told their children can’t go back to school, we can’t go back to work, we can’t go to restaurants, we can’t support small businesses and our economy and people’s lives are ruined.
What toll is this taking on the future lives of all of our children – especially those whose parents are not able to manage remote learning; those whose parents can’t work remotely, who have to work to pay the bills, single parents? They are sure to be left behind. Does no one care?
Back to Maci’s education…
A couple of months ago, our school sent me information on an option for remote learning with an in-home aide called Telecubes. Looking at the program, I definitely liked the opportunity for in home support and the interaction with an educator while online. Granted, remote learning isn’t the best, but it also doesn’t have to be the worst. On the positive side, the environment is familiar since we are at home; the anxiety is lessened. There are little to no distractions, so attention and regulation during the learning period is better. If you have a special needs child, you know this can be diﬃcult to manage at school.
So, we gave the green light for Telecube learning – stay tuned for my report on its effectiveness.
Socialization is important too…
With all the isolation, I wanted to find a way for Maci to connect with her peers socially. Last week, Maci joined remote social all girls teen group offered through Aspiring Youth. It’s such a fantastic group. Maci was engaged, involved and excited the entire hour and half.
Here’s a video on how a successful online group looks and uses the platform eﬀectively.
And finally, you’re not alone…
There is definitely a pandemic going on, and it is not just COVID. I do care, which is why I created this website, blog, newsletter and resources. I want every person to have the best opportunity and life they possible can have regardless of their ability. While Black lives matter, I believe every life matters.
We have created a Facebook group for everyone to share our thoughts, ideas, resources and information. I hope you will join us! We can all care together!
Marikay Cuthill is mother of Maci, a vibrant, curious 14-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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