As the pandemic ends, I wanted to write about my personal experience as a caregiver and parent of an autistic. There’s a lot that needs to change with how we deal with the disabled, not just on a federal level, but specifically in Ontario as well. The first part of this two-part series will be outlining my personal journey as a caregiver through COVID.
At the very beginning of the pandemic, I felt I could trust the information that was coming out of Ontario’s Chief Medical Officer of Heath Dr. David Williams (we nicked named him Mr. Potato Head in this family) but being a trained journalist and glued to his pressers towards the beginning of May 2020 I found that the information coming from Potato Head started to differ between what the federal officials were saying. Dr. Tam became way more credible during the early days. Potato Head also kept pivoting off clear questions regarding COVID and what the experts were saying.
What kept us healthy and safe during the pandemic, did not come from Potato Head or Dr. Tam but through social media. I formed a team of three verified specialists over social media to help keep this family safe. Jonathan Mesiano-Crookston (who is a lawyer and also a bioengineer). I relied on Johnathan for scientific research papers related to COVID-19, Ryan Imgrund (who happens to be local to me) for statistics and expert commentary, and Mike Gibbs (who used to be a political staffer at the Ministry of Health during SARS). Mike was one of the first people to point out that something wasn’t right with Potato Head. Potato Head was later caught on a hot mic that he just says what “they” tell him too.
I learned a lot about COVID in the early days. I just want to extend a HUGE thank you to all of the above mentioned who have helped to cut through the politics thrown in by the Ford Government in their response to COVID and to provide this family with facts used to survive this pandemic. There shouldn’t have been any politics involved in the response to COVID. It should have been all science, not based on the what the PC party donors think.
My son is non-verbal and autistic. At the very beginning of the pandemic, I pulled him from in-person learning at school as a result of me being high risk. It was the only logical decision I could make. My son’s education vs. death. I chose to sacrifice my son’s in-person education for a year. I felt a tremendous amount of guilt for this decision. I felt at the time I was being very selfish and putting myself above the needs of my son. I know it sounds silly, but it took me quite a few months to come to terms with that decision. As a caregiver or parent, we’re always putting those in our care above our own needs, and health.
We tried virtual leaning, and that didn’t happen as my son refused to sit for virtual class or ABA sessions. We developed a plan instead to work on life skills at home and move to virtual consultation with ABA. in which has given my son a new purpose in life because he’s earning an allowance and gets to shop on amazon for what he wants.
In the early days of the pandemic, we were doing well mental health wise as a family. I had my team of experts lined up, and we were managing quite well. That started to change towards the end of August 2020. I was starting to feel the isolation, the pain of working 24/7 as a caregiver and not having any break. Not having anyone to talk to, then my son got ill. Not with COVID but developed a bad rash. It took quite a few weeks to get under control, and of course a huge uptick in challenging behaviours because he wasn’t feeling well.
Coming out of the rash situation completely exhausted, and still feeling incredibly guilty for pulling my son out of the school for a year, I ended up with a case manager who became too close to this family (to me specifically), and I didn’t know how to deal with her when she started pushing me over the edge with emails, calls, etc. No matter what I said, she wouldn’t leave me alone, and then towards the middle of October I got fed up and I let her go.
I emailed the ministry for direction because I needed to put services on hold to save my sanity and recover from the stress I was under, because our case manager (before I let her go) kept coming back with my son being discharged from services rather than being put on hold until I was recovered. Discharging indicates we would be placed on a wait list should we need these services again, including services through the Ontario Autism Program were put at risk by this case manager.
The Ministry than told these services they must accommodate our situation during COVID and to be flexible. The Ministry also acknowledged that us families of the disabled were going through a particularly rough time during the pandemic. This is the sixth level of hell us families have to go through when dealing with provincially funded regional providers. It shouldn’t have taken the Ministry intervening to get the people who are on the front lines to understand that services need to be flexible during the pandemic and the pain we all went through as parents in making tough decisions in order to cope with survival. Yes that literally means life or death decisions!
We were involved with CTN’s Coordinated Service Planning which is the highest level of case management offered in the province. We’ve since requested discharge and have been transferred down a tier from the service as a result of this situation and CTN trying to sweep what happened to us under the rug, rather than learn from it, adapt policy and regularly audit their employees for policy and ethical compliance.
With the blessing of the Ministry, I decided to put everything on hold until after the pandemic. The day I did that, I got a call from Children’s Aid (CAS) asking why? After speaking with CAS, they promptly closed our file without investigating. After requesting our records from CTN, it was the case manager I let go who called it in. If I didn’t know the Youth, Child and Family Services Act as well as I do, CAS would have had a significantly negative impact on my mental health during the pandemic and we’d probably still be dealing with them.
Serious questions need to be posed by all levels of government why the regionals (CTN in our case) were not adapting policy to situations on the ground, and why caregivers were treated with disrespect and ignorance when asking for flexibility in services in order to cope. Perhaps this might be something the auditor general should investigate. A value for money audit on these regional service providers is way overdue.
In the middle of all of this I took an online course offered through ARCH disability law on the UN Convention of the Rights of People with Disabilities (CRPD). It was a welcome respite to the chaos CTN created with our services. I also noticed after the course was completed that I was slowly starting to slip into a depression. When the second lock down hit in November, that’s when things started to get very dark with me. I just felt so alone, so isolated, so anxious, and so sad.
I’m often the shoulder to lean on for many in the autism/disability community. I don’t mind that at all. I’m a good listener and enjoy talking about autism and sharing experiences and advocacy. Learning through others is important to me. That’s how I grow as a parent and advocate. The one thing I found in my advocacy that there aren’t very many fathers that step up to the plate when it comes to dealing with a disabled child. The moms are usually the ones upfront and center advocating. I never really understood why that was.
For me, a lot of those I help support in the community are single women. There was this fear I had at the time, had I opened up to these women about what I was going through, they would have come back and stated to me that at least I’m married and have someone there, they don’t. I look up to a lot of these women and the strength they have, and I didn’t want to burden anyone with my heavy emotional load. I learned that was the wrong thing to do. I’ve since opened up to many of them regarding my experiences through COVID to find out almost everyone in our community was going through the exact same thing!
In fact, so were a lot of the autism warrior dads. Everyone of us parents and caregivers had some sort of emotional break down during the pandemic due to the lack of services, ignorance from regional service providers, lack of direct emotional support, and human connections. Both levels of government left us to basically rot during the pandemic, not to mention the province’s service providers. We were on our own. Every week I’d get reports into me about quite a few moms and dads in the autism community melting down. I’ve seen quite a few do this on social media and very publicly. We’ve all banned together to help support one another through this crisis. It’s been heart warming.
I’ve emerged from this pandemic a different man than I used to be months if not years before COVID. It’s been a journey of self-discovery, survival, and learning that if I don’t start to put myself first, I will be of no use to anyone. I’ve emerged with a new sense of humour (it will be warped at times and in full display in future blogs) and a promise to myself I will laugh and make others smile more. A promise to myself to have a more positive outlook on life. Accept the things I can not change and change the things I can not accept. I can not accept the way both levels of government have treated the disabled and their families through this pandemic, and in the coming months I’m committed to changing that. That will be outlined in part 2 of this series.