I Haven't Seen My Son Aidan For 158 Days & Counting: This Is My Pandemic Story
/158 Days. Five months and counting. That’s how long it’s been since I held my 17-year-old son, Aidan.
I mean, I suppose many Moms of teenage boys don’t get regular hugs and kisses from their teenage sons, so maybe that doesn’t sound too shocking. The difference is, my son is very generous with his affection and doesn’t care if his peers don’t think it’s cool.
All he knows is love.
Aidan has Autism and an intellectual exceptionality. Due to his very high needs and limited resources here that will help to support him and provide him with the life skills and opportunities as he approaches adulthood, he resides in a wonderful congregate living facility in York Region.
We have been so thankful that we are able to have him home very often for weekend visits to Peterborough. On March 14th, he was home for a regular weekend visit. Our Minister of Education, Stephen Lecce, had already announced the two week closure of schools after March Break.
The Wells family: Kate, Aidan, Emma & Jason
We were so lucky to have Aidan home that weekend, but to be honest, there wasn’t much fear and concern at that point about COVID-19. I mean, we certainly were more than aware about it, but we had no way of knowing what was around the corner. In fact, that last weekend Aidan was home was totally uneventful.
We picked him up from the home like we always do, and stopped at McDonalds for him as per his lunch request. We listened to Queen and sang along all the way home like we always do. He smiled and said hello to the cat and the dog as he walked in the front door.
He asked to play Minecraft and showered us all with hugs and kisses. Like most boys his age, his days centers around food and electronics and our weekends with him are all about what he wants to do. Our time with him is precious and we soak it all in.
That Sunday, we dropped him off back to the home as we always do. Big hugs and kisses and drove home to Peterborough excited to do it all again soon.
We had no idea how quickly things would turn.
The week of March Break, like the rest of the world, Ontario came to a screeching halt. Families who were vacationing outside of the Country soon panicked and were scrambling trying to get home. Big box stores started closing. The mall, restaurants—all empty. It all happened so fast.
Suddenly toilet paper, Lysol and flour were luxury items that were impossible to find. Everyone hung up their work clothes in exchange for track pants.
The world just stopped.
We clapped for our heroes who work in healthcare, decorated our windows to help spread cheer and well wishes for those who went to work so that we could stay safely home.
Even with all of these bizarre goings-on, I was still so naive. Then I got the letter: ALL VISITATIONS AND HOME VISITS ARE HALTED UNTIL FURTHER NOTICE.
I was shocked. It never occurred to me that this would be a reality.
I mean, maybe it should have, but I was still in shock over the fact that we were living through a global pandemic.
Aidan
So here we are, 158 days later.
We’re now at what we hope is the other side of COVID-19. We know the scientific realities, but there’s still so much unknowns. It has been so hard. For so many of us. We’ve all made sacrifices, a lot of families have been separated from loved ones. We are not alone. We know this.
Like many who have special needs, Aidan has no idea why he isn’t able to go home. He doesn’t know why he can't see his Mom and Dad or his sister whom he adores so much.
We have worked so hard with his incredible team of support, utilizing resources such as visual supports, stories in simple terms, hoping that it will help him to understand. We have no way of knowing. All we know is that he asks for Mommy and Daddy every day.
For several months, we had no communication with him. Talking on the phone is very difficult for him because hearing our voices is upsetting and confusing as he wants us there at that moment. He started to retreat to his bedroom in the Group Home.
The incredibly hardworking staff worked tirelessly to revamp his programming in order to help to “pull” him out of his funk and worked closely with professionals in order support his emotional needs. We got very creative. We wrote a book, we provided care packages of stuffed animals and small toys that would help to lift his spirits.
Some weeks he would be very receptive and would surprise us all, other weeks his behaviours would spike and he wouldn’t let anyone get close to him.
In July, he was starting to spiral back down. My once joyous, giggly boy, was becoming very depressed. He wanted to come home.
Why don’t you just go and get him and bring him home? He’s your son. They can’t stop you.
I imagine that is a common thought from well-intentioned people who don’t understand.
I wish it was that simple. We could bring him home, yes, but we wouldn’t be able to work. We would have to keep him home until there was a vaccine, or if sooner, he would have to be quarantined for 14 days. Impossible in a group home setting.
He needs his programming, he needs his resources that are so precious and necessary for his success. He needs the trained staff that support his very physical behaviours. He needs his routine. Bringing him home would be selfish of us. We would not be putting his needs first.
Facetiming with Aidan
We are now Facetiming with him every single morning. We sing, we make silly jokes, and we show him his beloved dog and cat while they sleep and play in the background. We keep it light and, in those moments, he is happy and our hearts are so full. Still, he is struggling. We are struggling. We want him home.
In the first week of August, we excitedly listened to more and more announcements as the Province continued to re-open. Spas, indoor seating at restaurants, and even bars. More and more people were able to return to work, and more were reunited with loved ones.
Group Homes were able to have outdoor visits, 6 feet apart, supervised, wearing masks and must have a negative COVID test. All very promising, but not possible for Aidan nor for his peers in his home. This is very confusing and would be emotionally and physically more harm than good. As much as we wanted to jump in the car and see him, we had to think of what’s best for him.
So we wait.
158 days and counting.
School starts in a few weeks. In September, hundreds of thousands of students will flood the halls of school across Ontario. My son attends a Complex Special Needs classroom in a regular high school. Just like every single student, he has the right to an education.
I was so hopeful that the announcement of school openings would surely mean that Aidan and his peers would be able to go home to see their families.
No.
There has been no update for families whose loved ones reside in congregate living facilities.
None.
I have emailed and contacted every single MPP, Minister, the Premier, Prime Minister and many others. So far, a few have replied and are willing to listen.
We know we are not alone. Many other families and Caregivers are doing the same thing. We are heartbroken and we all feel like the disability sector have been forgotten and left behind.
Our loved ones matter.
My son matters.
He is loved, he is valued and he has rights.
He should not see his (wonderful) teachers and strangers at school, before he sees his immediate family.
I’m not writing this for sympathy, I’m wanting to spread awareness to this important issue.
I want my son to come home.
Now.
—guest post by Kate Wells
