CC's Story
My disabled child was given not choice but to stay home in order to protect her health.
We live in a small northern Ontario town with my 2 children, husband and mother-in-law. Both my children are disabled and require various support services that we have been getting primarily through the schools. My mother-in-law is a cancer survivor and is elderly, although she helps out the best she can with our 2 children. We’re a small family and rely on each other for support, especially in regards to the my younger daughter who needs more help than my eldest.
I’m a PSW. We live in a small northern Ontario town near Sudbury. In our home, there is myself, my fiancé, our 6 years old daughter, and my 13-year-old from a previous relationship. We also had my mother-in-law living in our basement apartment/in-law suite.
My fiancé was a heavy equipment welder for a local road construction company for over 10 years. I am a certified esthetician who struggled to find stable work, so I decided to take an opportunity in 2019 to work for a local Healthcare staffing agency that offered to pay for my college PSW training in exchange for 1-year work contract. I graduated with honors in November 2019 and immediately started working in several LTC homes in the Sudbury area that were short-staffed and needed last-minute support.
Our daughter was diagnosed with severe developmental delays and nonverbal Autism Spectrum Disorder level 3 in June 2018. She has been on the Ontario Autism Program waitlist since then with little to no support from the Ontario provincial government.
My mother-in-law moved in with us when we bought our first home at the end of 2018. At that time she was struggling to live off her monthly ODSP payments so we wanted to help her and she helped us tremendously with childcare so I could complete my PSW program and/or gives us a little respite.
My oldest child was diagnosed with ADHD & Oppositional Defiant Disorder at age 5. She primarily lived with us until she wanted to go live with her biological father in September 2020 due to the isolation we have lived in for several years without proper support for her little sister. Broke my heart, but I understood her point of view. We couldn’t go to many places or do many things, and that took a toll on her.
My autistic daughter has been very isolated since we couldn’t afford to put her in daycare, and I suffer from social anxiety myself. She has rarely had a chance to play with other children her age. That’s one of the many reasons being at school in person is so important for her and her development. We enrolled her in French public school because we want her to learn our French culture, and we knew this school board had hired a Board Certified Behaviour Analyst who would be an asset to our daughter’s learning experience at school. Her school did not have a special needs class set up, but they created one for our daughter and another child in September 2019 with help from the BCBA, SLP, OT, and PT. I was also impressed that most EA’s working for this school board were also Registered Behaviour Specialists. I couldn’t ask for a better learning setting for our child. We had an IEP meeting to discuss her goals at school with included life skills such as toileting, communication with PECS or her ACC device, desensitizing her to using a hairbrush and nail clippers along with other academic learning. If we couldn’t get ABA through the OAP, we were happy she was at least making slow progress at school with an amazing team of professionals.
Then we were hit with the unknown of a new virus called COVID 19, and the world changed overnight. We were worried about how COVID would affect my 65-year-old mother-in-law who is a breast cancer survivor since 2015. We also worried about our disabled daughter who can’t speak and verbally tell us her symptoms, and she is very sensitive to allergens outside, such as mosquito bites. I was concerned about everyone, including the vulnerable seniors I worked for in LTC homes.
Then we were hit with the unknown of a new virus called COVID 19, and the world changed overnight. We were worried about how COVID would affect my 65-year-old mother-in-law who is a breast cancer survivor since 2015. We also worried about our disabled daughter who can’t speak and verbally tell us her symptoms, and she is very sensitive to allergens outside, such as mosquito bites. I was concerned about everyone, including the vulnerable seniors I worked for in LTC homes.
Every time there was a school lockdown, and kids had to pivot to online learning, my child could not participate. She has not completed one full year of school yet. When schools opened again in September 2020, we were very cautious. We tied to get her to wear a mask to school, but it only stayed on for 0.2 seconds before she took it off as she couldn’t tolerate having something on her face and didn’t understand why she should be wearing one due to her disabilities or what a global pandemic is. Therefore we relied heavily on PCR testing and local COVID-19-positive case counts to make an informed decision to send her to school or not each and every day! We also relied on everyone else who can wear a mask around her to protect her. We would have preferred N95 respirators, but at least the majority of the school had a mask on, and class cohort’s helped. We’ve managed to keep COVID-19 out of our home thus far, even while I worked in LTC outbreaks because I wore my N95 religiously at work along with other PPE such as a face shield, hand sanitizer, gown, and gloves when interacting with residents. I was also PCR tested weekly and RATS tested daily at work.
In November and December 2021, my child was coming home from school with COVID symptoms often and missing a lot of school due to that. I continued to work in LTC outbreaks and get tested, which was always negative, so we figured it wasn’t COVID-19 and kept her home until she felt better. A day or 2 after returning to school, she would be sick again, so when the Ford government removed PCR testing in December 2021, and her EA’s refused to wear KN95 masks that were made available to them instead opting for a blue surgical mask, I decided it wasn’t safe to send her to school anymore. I did not want the responsibility of being the cause of another outbreak at my LTC home because my child can’t wear a mask to protect herself at school and could bring the virus home to us or vice versa I bring the virus home from work and my child brings it to her school to infect her vulnerable classmates and education workers. From December 2021 to September 2022 my child was denied her right to a safe education. Has a PSW in a similar role as EA’s, I could not understand why they wouldn’t wear a better mask to protect my vulnerable child and her classmates. Then in March 2022, mask mandates in schools were removed completely, and now no one in my child’s special needs class is wearing a mask at all. I tried my best to advocate for her to have accommodations such has EA’s wearing KN95 masks but was told the EA’s have rights and the principal, superintendent, and school board could not force the EA’s to wear a certain mask. They have a choice, and there was nothing they could do. They said they weren’t denying my child an education since it was my choice to keep her home.
My daughter doesn’t have a choice. She can not wear a mask to protect herself so it was send her to school to get sick with COVID 19 or give up my job/income to stay home with her and no education.
My daughter doesn’t have a choice. She can not wear a mask to protect herself so it was send her to school to get sick with COVID 19 or give up my job/income to stay home with her and no education. Trust me neither option worked for us, but I had to choose one so she stayed home, and we struggled physically, emotionally, mentally, and financially big time! 2020 and 2021 we were able to live with COVID and avoid it completely. In 2022, we have never been more isolated at home and felt like our family can’t participate in society at all now that mask mandates were dropped everywhere. We’ve still avoided COVID, but it cost my child tremendously socially and academically. She’ll be 7 years old in December, and she is still in JK instead of grade 2. She regressed and lost all the progress we had made with toilet training and using her ACC device has I spent months in a deep depression from losing my job to feeling like the people I adored at her school could care less about our our child and our families’ struggles. I completely lost my trust in the people who were responsible for my child’s well-being throughout the day. When you have a child that is nonverbal, trust is everything! Why won’t they wear a mask???
Like I mentioned, I was forced to take a stress leave from work by my doctor. I stayed home for 3 months but nothing changed. No amount of meds prescribed by my doctor would help me feel better because her EA’s were now not wearing a mask at all. I wasn’t ready to go back to work so I’m June 2022 I have my resignation and hoped my fiancé’s income would be enough for us to survive. I was wrong! He got injured at work at the end of June so we then had no income for several months and had to rely on our credit to get by. My mental health just reached breaking point has now everything is one me. My fiancé couldn’t even change our daughters pull up due to his injury so it was on me to do that plus, cook, clean, groceries shopping, find another job or we would be homeless soon and lose our home and be unable to afford rent at todays rates which are much higher then our mortgage payments. I felt hopeless in August 2022 and called crisis has I was having suicidal thoughts. There was no light at the end of the tunnel has everyone around us was fine with their kids bringing COVID home from school and pretending COVID was over. I watched everyone of my friends and family post in social media all their summer adventures with no masks while we couldn’t even afford to go camping in a tent. Crisis advised me yo go to the ER. I couldn’t stop crying for over 10hrs. The ER physician admitted me to in-patient psych hospital. During my stay at the psych hospital, I was told by the psychiatrist that I need to learn how to live. So even those professionals can’t even empathize with our family.
I shouldn’t have to be an expert in education law to ensure my child’s human right to a safe education are met.
I shouldn’t have to be an expert in education law to ensure my child’s human right to a safe education are met.
I don’t understand why children especially those with severe disabilities can’t have the same level of protection has the vulnerable seniors I used to care for in LTC or why peanut butter allergies and lice are taken more seriously that a virus that attacks your organs?
I thought about filling a human right complaint but felt I couldn’t do it alone and could not find a lawyer willing to help without an hourly fee of $700 which we definitely can’t afford right now.
After I was discharged from the hospital I sent my resume everywhere to try and help our family dig out of the hole of debt we are now in and gave up fighting with the school. My child missed too much valuable time in class with professionals she needs and her development is so far behind that I felt I could no longer keep her home with me and had no choice but to send her back to school in September 2022.
I got a new job with an amazingly supportive homecare company that has their own mental health wellness team for both clients, employees and their family members. I was starting to feel better working again until my daughters first day of school. When I showed up to drop her off on the first day, I was told because she has been out of school for so long she can only stay for an hour per day which limited how many hours I could work throwing me back into depression again.
It’s October 13th 2022, my child still doesn’t have any special needs transportation and can only stay at school until noon. If something doesn’t change very soon we will be homeless has I can only work evenings 5-10pm and that’s not enough income to support our families monthly bills. Couldn’t even afford to buy our daughter new clothes for school and that hurt!
So that’s our story and I would love to join in any efforts to bring masks back into our schools and even return PCR testing and contract tracing has that was a valuable tool in keeping us safe this far.
Thank you for listening!