Thoughts from the past

Two years ago, I sat down and drafted this blog post. I couldn’t bring myself to publish it. Reading back on it now is like reading an old journal entry, and I wanted to share it with you. This was written when there was much uncertainty around covid and before I had 4 children. It feels incomplete, but I’m not in that space right now, and I think the words are important, even if the writing is unpolished.

Photo by Dom J on Pexels.com

December 2020 – A friend and I were recently talking about the impact COVID has had on our identities as mothers. Like me, she works full-time from home while her husband works outside of the house. Like me, she is raising three children of similar ages to mine. Like me, she has immunocompromised family members she is worried about.

She said to me, “I miss missing my kids.”

And that hit the nail on the head. That phrase was one I felt I had been searching for.

I remember when I was on maternity leave with Robert and later with the little guys. I remember feeling like I wanted to be home and be present for my children as we raised them. I wanted them to know that Mom could always come on their field trips or pick them up after school. That I was a safety net in that way, ever-present and forever cheering them on. When I had these thoughts, I never dreamed that the world would shut down and provide me with a twisted way to accomplish this.

Because raising kids and caring for a home is a full-time job.

Because working from home during the pandemic is my full-time job.

And doing both simultaneously doesn’t allow me to feel like I am a safe space for my kids. It doesn’t provide me with the opportunity to be present and engaging.

I miss missing my kids.

It Takes A Village

We’ve all heard that saying, “It takes a village to raise a child,” but when you’re parenting a child with a disability, you’re often left wondering, “but where’s my village?”

You look around and ask yourself who else understands what it’s like to change your child’s diaper in a public restroom without an accessible change table, cramped in a stall and fumbling. You wonder who else can relate to constantly scanning the playground to account for your child while simultaneously watching for the potential escape routes your runner might take, never really being able to sit down and relax or read a book while your child plays.

Photo by Pixabay on Pexels.com

We are incredibly fortunate to have the local community we have. We have found other parents who can share their struggles, successes, fears and dreams with us. These other parents understand what we mean when we say, “this is hard.” Online, where most of us communicate with each other, we ask the questions it feels like no one else can answer.

Questions like :
What supports have you found for your children this summer?
Do you know where we can enrol our child in programs that will also offer an adaptive and inclusive environment?
My child is starting school; what do I need to do to prepare the school, our family and our child for this huge transition?
How do you handle trips to the dentist? Is our only option sedation for treatment?

While online support and community are vital in making caregivers feel less alone, we lack that neighbourhood community vibe. The one where the kids from 3 doors down come knocking and invite Robert to play, and we know he will be safe with them.

We have worked hard to create a network to help us in raising our children. We have a loving and supportive family who understand how to keep Robert safe.

Sometimes as caregivers, we grieve the life our children might not have. The life we’ve imagined for them is where we don’t need to plan for meltdowns. A life where we don’t need to fight for inclusion and acceptance because the world has understood that accommodations serve more than a minority.

Instead, we see a bumpy road ahead, one with many hurdles.

We look for allies, people who help us carry the weight of our worries. We look for others who are clearing hurdles and reducing our stress.

We welcome people who look around and say, “This could be better. I can make it better.” They act, without the need for families to advocate (again and again).

On the heels of the previous post, I urge you to consider how you can be part of the village we hope to have to help us raise our children. We’d love to have you.

Friendships and Social Skills

Photo by Andrea Piacquadio on Pexels.com

We all want our children to have friends. We want them to develop healthy social skills, get along with others, and have someone they can trust to play with and confide in.

Knowing our son is different, we anticipated he’d have trouble making and keeping friends. That didn’t make this morning easier.

We saw a friend from last year walking into the schoolyard, and I urged him to catch up to her. He ran after her, yelling her name to grab her attention. She didn’t hear him, but he dashed towards her. I watched as he caught up to her while she was chatting with another classmate. I expected the two girls to include him.

I watched as they continued their conversation and walked away from him. My heart sank.

Grade 3 is tough. This year, even more so for Robert, as the core group of his friends from last year were all paired off in different classrooms. He has one classmate who is a wonderful friend, but I’m not even sure if he is developing friendships within his classroom this year.

I watched as he put his backpack down outside and looked for a friendly face. He tried to encourage another boy to put his bag down and went to another small group of girls to join their conversation. They were patient, joining in his excitement as he jumped up and down, but it quickly became apparent that they didn’t know how to interact with him.

The gap in social skills seems to have opened so wide it could swallow everything around it. I wasn’t ready for this.

I could feel my heart breaking and tears welling up as I watched him try to find his place. Ever the brave boy, he kept trying. He looked around him, and he kept trying.

I left the school drop-off zone after watching him round the corner of a school portable. My mind raced as I tried to think about how he must be feeling and how to handle my emotions. I wondered about what this means for him as he gets older.

I desperately want him to have friendships and community around him. I want the world to turn to him and others like him with disabilities and say, I see you. You are Valued. You can sit with me.

Please talk to your children about inclusion. Cultivate their empathy and remind them that everyone wants to feel as though they belong. Next month we will celebrate Canadian Down Syndrome Week from 23-29 October 2022, but I want my child to be celebrated and welcomed every day.

It starts with us.

Strike a pose

Photo credit: One-12 Photography | Photo appears in the Mom&Caregiver Magazine

When Robert was selected to be on the Mom & Caregiver magazine cover, I didn’t know what to expect. Kids can be so unpredictable, and we were coming out of Covid restrictions. How would he react? Would he participate willingly? What were they expecting of him?

The magazine called me and gave us some ideas of what they would be doing that day and what we could expect. I was asked accommodation questions, such as “does Robert have any sound or light aversions?”. Clearly, we were going to a location staffed by empathetic and accepting people. They suggested we dress Robert in a blazer, graphic tee and cool shoes. I looked in his closet for the perfect outfit and even did a Pinterest tutorial on cool ways to tie laces for his shoes. I was going to make sure he looked the part of the model they wanted.

When the day arrived, Robert was very nervous. He had started to believe in these Covid-times he was only going to get needles when we brought him to unknown places. While I did my best to reassure him, he didn’t believe me. Eventually, he trusted me enough to walk to the studio, where he was greeted like a celebrity.

The staff all made him feel comfortable and confident. They laughed at his antics, and he proudly showed off his baby sister. He posed and loved every minute of the experience. In fact, it took nearly as much work to encourage him to leave the studio as it did to take him into the studio!

When the magazine was released, I was blown away. Robert’s personality shines, and it’s clear he is made to be a cover model. I don’t know if this is just my bias showing…

While the world is becoming more diverse, there is still a long way to go. Magazines that feature kids who look like Robert are essential to help remove the stigma of disabilities. When people with disabilities are featured, not as tokens but as humans, it makes it easier for people to feel comfortable around disabilities. Disability is not a bad word, and there is no shame in being disabled. If it makes you uncomfortable, ask yourself ‘why?’ and sit with that answer and reflect on it.

So thank you to the Mom & Caregiver magazine and all those who voted to feature Robert on the cover. It was an excellent experience, and it brings me joy to know that my son can bring a smile to others. After all, representation matters, wouldn’t you agree?

Eight

Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com

How is it possible to look at you and immediately be taken back to those first breaths you took? Or, to think it’s only been a few weeks since you took your first tentative steps? It’s been 8 wonderful years, but I remember each one still so clearly.

When Robert was born, I was given a birth diagnosis of Down syndrome. The hospital staff looked at me with pity. I still remember feeling confused by their reactions. I had volunteered in high school working with youth with disabilities. I actually did some 1:1 volunteer work with a girl with Down syndrome (I wonder how she is? She’d be about 30 years old now..). I had written a paper for grade 10 science on down syndrome, and again another in a university course I took. While I didn’t know much, I do remember thinking it was going to be OK.

I told our social worker that raising a child with down syndrome was going to be like raising a child who is left-handed in a right-handed world. The world isn’t designed for him, but we will adapt, change and do everything necessary to support him.

Never did I imagine when he was born that he’d be learning to play the violin. Or playing math games just for fun. I didn’t think he’d take a shining about learning our solar system or facts on dinosaurs.

I had hoped he’d be included and have friends, but I didn’t realize that he’d have such a solid group of friends who look out for him already.

Through raising Robert, we’ve discovered a community we didn’t know existed. One of parents and allies who understand that it’s the world that needs to be changed, not our children.

I think about how lucky we are to enjoy each stage a little longer, a little deeper and how we appreciate each milestone achieved in a different way. We certainly don’t take for granted that we are part of the lucky few.

So here we are. With an 8-year-old world changer, who is as funny and sweet as he is stubborn and sassy.

Bonne fête, Robert. Je t’aime.