An autism mom reflects on the struggles her family faced when school came to a stop and virtual learning began.
“Having a child with autism can mess with your head. You feel like you can move mountains for them yet you’re powerless at the same time.” – Stuart Duncan
I am writing this article not as a columnist or reporter. I am simply known to my children as “Mom” or “Momma.” This mom is writing an article because I have a voice, as we all do, and this voice wants to inform you, the reader, about a problem that is affecting our children, whether they have a disability or not.
But first, let me introduce you to my son, Alex. Alex is a lovable, social, inquisitive 4-year-old boy. This little guy loves being outdoors, building things, playing with his siblings and cousins, and especially enjoying the water. Whether it’s the ocean, pool, or sprinkler, he loves it.
This is my story about how this pandemic affected not just my son, but other children with disabilities. When I learned that the COVID-19 virus had arrived in the US, I was like any other parent—I was nervous, but cautious. We had a trip planned to Walt Disney World in March, which we decided to go ahead with. But honestly, the virus was the least of my worries at that point. My biggest fear was Alex being on a plane. He had never been on a plane, but to both my surprise and my husband’s surprise, Alex loved the flight—he was calm, happy and very interested in everything going on. Once at Disney, he loved to walk around Magic Kingdom, and the mere sight of him hugging Mickey Mouse or Minnie Mouse was worth a million dollars. He loves anything Mickey Mouse.
Once we returned home, everything changed. Gone was the somewhat relaxing trip we had just had. Now, we were faced with major changes, disruption, and stress. Everything was closed except supermarkets. Alex’s school went into remote learning almost immediately. Now I have an older daughter, Katelyn, 7, and she did remote learning but it was a challenge because she’s very social and didn’t fully understand what was going on.
Alex wanted nothing to do with remote learning. He would only sit for five to ten minutes. My complaints to his teachers, who offered to send material to work with him, fell on deaf ears. I was told repetitively, “I know this is hard.” Alex was offered a “virtual” summer camp for four to five hours a day but I declined. I have talked to a lot of people and most, if not all, said that “camp” didn’t work. I have said over and over that children like Alex, need all-day stimulation and reinforcement. I was worried, very worried, because I started to see signs of him regressing.
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So, the duration of the summer he received no services. I called a bunch of places to get him home-based services and unsurprisingly, everyone was either unable to come due to the coronavirus or there was an extremely long wait list.
Unless you have a child who is disabled, you can’t fully understand how stressful it can be to see your child not progressing and actually going backwards. I spent many times so stressed that I would cry and I had many sleepless nights because I knew he needed help. I was powerless and couldn’t get it for him. No one would listen and my complaints again were falling on deaf ears. In early August, we learned that his school would go back to remote learning for six hours a day then move onto the hybrid method.
I was shocked. I was angry. I made several phone calls and emails to my local school committee – but yet again, I was told “that is the plan.” I made a few more calls to some other schools that specifically dealt with autistic children, and one of them was taking new students and could start in a few weeks – not “months” like I had been told by other schools and home-based services. So, I’m happy to say he is enrolled in this new school and starts in a few weeks.
My advice to parents who are in the same boat as me is to remind yourself that this is temporary and it won’t last forever. Another strong piece of advice is don’t just sit back and let them dictate that “this is the plan” for your child’s education.This is your child and your child’s future—you have a say in what you think is best for your child. Fight for what you believe in and what you know is the best for your child. Not all disabled children fit the same mold; each is different and unique in their own way. Always question the teachers, school districts, politicians, anyone who is making decisions as to what they “think” is best for your child. You know your child and what works – they don’t. You have the right to question anyone if you feel they are not experienced in making decisions for children with special needs.
I hope that my article can give you an insight into my ordeal these past months. I am trying to get the word out that children with disabilities were left behind during the pandemic and helping them should be our top priority because we, the parents, are their voice.
“Never give up, for that is just the place and time that the tide will turn.” – Harriet Beecher Stowe
This article was featured in Issue 118 – Reframing Education in the New Normal