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?

Salut, Bob!

Teach him to be kind.
Teach him to be a nurturer.
Teach him to have empathy.

Sullivan recently turned 3. I’m not sure how time seems to pass so slowly, especially these ‘groundhog days’ we seem to be living, but in the blink of an eye, 9 months has passed and we’re celebrating Sully’s 3rd birthday.

One of his favourite gifts this year is a beautiful doll from minimono.ca – this miniland doll has Down syndrome features. Yes! You read that correctly – there are features commonly associated with someone having down syndrome apparent on this doll. The eyes are slightly almond shaped, the nose a little flatter and a slight separation of toes are some examples.

This doll has become a prized possession in our home. It’s not uncommon to see the doll being lugged around under one of the boys’ arms, some days more gently than others.

Pictured is Sullivan, the author's blonde haired, grey eyed, 3 year old boy, wearing a sweater and jeans. He holds a toy miniland doll that has realistic features of a child with down syndrome. In front of him is a toy John Deere tractor.
Proof that boys can play with dolls AND trucks. After all, toys aren’t gender specific!


Teach him to cherish.
Teach him how to practice emotional-regulation.
Teach him to be caring.

One of the best parts of having this new toy in our home is hearing the boys playing with it. You can hear them practicing social skills as they interact with the doll, replaying some of the things they’ve learned or experienced recently as though they are processing the situation out-loud. And that’s apparent in the name they chose for the doll.

When Sullivan opened his gift and saw the doll, he was excited to begin playing with it. Almost immediately, he said “Salut, Bob!” to the toy.

Yes, Bob.

You might think that it’s because he understands that Robert has Down syndrome, and the doll represents a little boy with down syndrome. But you’d be wrong, the name isn’t (to him) a nickname for Robert.

In the event that your children aren’t being babysat by AmazonPrime or Netflix during Covid-Days while you are trying to work-full time from home and hopping on your umpteenth video conference call of the day – there is a show called Bob le train that airs on AmazonPrime. Bob le train rides through a city landscape and picks up the letters of the alphabet (in alphabetical order) to take them to their destination. Nearly every letter cheerfully greets the train with “Salut, Bob!”. And so, my children when playing can often be heard saying “Salut Bob!” to their toys.

As much as I would love to make up some sweet story about how Bob the doll was named, this story is so much more authentic (and representative of the times we are living).

Teach him to be gentle.
Teach him that toys are not gender-specific.
Teach him to be loving.

And while some may say that the dangers of our son having been gifted a doll for his birthday might include taunting by ignorant adults, we know that the benefits far outweigh those potential dangers. This doll is offering our boys the chance to practice compassion, kindness and empathy, which we try to model daily at home for them. And more importantly, it’s providing Robert with the chance to see himself represented in the toys we have in our home.

Common Connection

Sometimes, being a parent to a child who isn’t neurotypical is lonely.

Sometimes, you can feel isolated in your thoughts and emotions.

That’s not always the case.

Having a child with Down syndrome is a ticket into one of the most incredible and supportive communities.

It’s unbelievable how that extra chromosome is able to connect families around the globe.

When we have questions about what to expect after a diagnosis, this community is there.

When we wonder what resources might be available for our kids, this community is there.

When we feel overwhelmed, and just need SOMEONE who understands, this community is there.

We are a global community.

We are family.

We truly are The Lucky Few.

—-

In order of appearance, our global community members are:

Ava, 2.5 @mrskyliesamson
Ariana, 3
Charlie and Milo, 5 @chucklesandmeatloaf
Emma, 2 @the.sassmcleans
Evalyn, 8 months @extraevalyn
Gavin, 6 @cwoods1212
Israel, 17 months @lor_ee @les_ismore9
Eli, 2 @duke.party.of.6
Ariyah, 18 months @upsidedownmomto
Caleb, 12 @karenjp0915
Jackson, 2 @michelecasal
Norah, 8 months @chodaks
Micah, 6 @lifewithmicah
Sofia, 3.5 @mvzlettysol
Ivy, 2 @myincredibleivy
Grayson, 5 @hugedork
Matthew, 21 @inthisopenbook
Olivia, 5 @ashleycharlton
Evorly, 11 months @kay_boin
Braelah, 16 months @beautifulbraelah
Genevieve, 17 months @theupsidedownfamily
Connor, 7 @basketsofloveds
Ava and Cora, 2 @raynisivley
Joshua, 24 @karebearmac8
Addison, 3 @addisonremy @pattysneddon
Christian, 6 @pdotanderson
Telmo, 19 months @telmucho
Jordan Grace, 6 @mommytor_az
Frankie, 3 @321ofakind
Lochlyn, 22 months @walkwithloch
Gabi, 3 @achown
Isla, 2.5
Harper, 15 months @stronglikeharper
Robert, 6 @luckymama.ca
Abel, 18 @abel.the.lionking
Thomas, 2.5 @jessicapollmanselden
Lili, 3 @courtkauai
Ryann, 2 @rys_wonderful_journey
Miah, 6 @sandra_alnakkash