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.

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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.

Le 21 mars

Le 21 mars… Une journée qui se trouve au tout début du printemps.

Une journée qui est aussi écrit 3.21.

Une journée très spéciale pour notre famille.

Le 21 mars nous célébrons la journée mondiale de la trisomie-21.

Nous apportons une sensibilisation aux différences marquer par cette troisième copie du 21e chromosome.

Que savez-vous au sujet de la trisomie-21? Pensez-vous que les personnes atteints du syndrome de Down sont toujours contents? Ou, peut-être vous les voyez comme des personnes qui sont considérablement retardées, et qui ne peuvent jamais être indépendantes?

C’est vrai, celles atteints de la trisomie-21 sourient souvent. Mais, elles peuvent ressentir beaucoup d’émotions. Robert se fâche parfois, et il peut devenir frustré, ou enthousiaste, tout comme toi et moi.

C’est vrai, celles atteints de la trisomie-21 ont une déficience intellectuelle. Mais cette déficience varie de personne à personne.

C’est vrai, celles atteints de la trisomie-21 ont des délais (des retards) au niveau du développement. Mais, ceux-ci varies personne à personne.

Alors pourquoi, s’il y existe une telle variance entre personnes, on les peints avec le même pinceau? Pourquoi avons-nous une idée qu’elles sont incapables d’être indépendantes, ou bien qu’elles soient toujours contentes? Pourquoi se font-elles réduites aux stéréotypes dès la naissance?

Lorsque Robert est né, quelques heures après que je l’avais accoucher, je me suis faites informer qu’on soupçionnait qu’il était atteint du syndrome de Down. J’ai immédiatement poser la question “Que devrais-je faire pour lui?”, et on m’a répondu “Rien. Aimez-le.”

Mon mari et moi, nous avons faits exactement ça.

Robert est très aimé. Non seulement par ses parents, ses frères, et sa famille élargie, mais par la communauté où on vit dans son ensemble.

Comme parents, nous n’approchons pas la trisomie-21 avec l’attitude que Robert souffre, ni par l’attitude qu’il ne sera jamais capable de vivre une vie indépendante. Nous l’élevons avec une attitude qu’il est très capable, qu’il est très intelligent, et qu’il atteindra ses objectifs dans sa vie.

Ceux qui connaissent Robert le voit… Ils voient que c’est un garçon plein d’amour et d’intelligence, qu’il est un peu coquin et qu’il adore faire rire les autres.

Le 21 mars, nous célébrons Robert. Nous faisons une campagne pour sensibiliser le monde au large que les personnes tels que Robert qui sont atteints du syndrome de Down, sont capables et bienvenues dans leurs familles et leurs communautés. Elles ne sont pas des fardeaux. Changeons ensemble le récit, et montrons au grand publique que les trisomiques sont valorisés dans notre société.

Joignez-vous à nous!

Le 21 mars nous vous demandons de porter des bas dépareillés. Comme les chromosomes ressemblent un peu les bas, et comme il y a un nombre impaire de chromosomes pour ceux atteint de la trisomie-21, les bas dépareillés représentent facilement la trisomie-21 .

Laissez-nous savoir que vous avez participer en publiant vos photos aux réseaux sociaux (insta, facebook, etc) avec #RockYourSocksForRobert

Merci,

More Alike Than Different

You often hear parents of children with special needs, especially parents of children with Down Syndrome, say “more alike than different” when raising awareness about their child and a diagnosis.

It’s true. My son Robert is more like a typical 5-almost-6 year old, than he is different from his peers.

He gets frustrated when things are “too hard”, he gets mad at his brothers when they take a toy from him, and he lights up and starts grooving to a good dance song.

There’s an advert going around right now that moved me to tears. While it doesn’t seem to include someone with visible disabilities, it does remind us that we are more alike than different as a general population.

Have a tissue ready, this one brought tears to my eyes ♡

All of the awareness posts I make come down to this – be kind to others, don’t judge a book by it’s cover, and embrace our differences.

Have a great week, everyone!

Denise

Christmas

Merry Christmas!

What are your favourite Christmas traditions?

I love that we celebrate Christmas as a family on December 24th. We gather at my parents home, eat appetizers instead of dinner, let the kids open and enjoy their gifts while we open our gifts to each other. It’s casual, relaxed, full of chaos and love.

This leaves us time after Christmas day to spend with my husband’s family, where the kids are cherished and spoiled and adored by their grandparents and friends who are like family.

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On Christmas morning, we get to take things slowly as our small family unit. Next year, this will change. Robert is finally beginning to understand Santa and next year Sullivan will, too. We will have to make sure Santa stops at our home on Christmas morning, instead of only at my parents on Christmas eve. We’ve already purchased different wrapping paper for Santa’s elves to use for next season.

It’s interesting to have a 5 year old who is just starting to understand who Santa is. I hear other friends’ talk about their kids and the wish lists they are mailing Santa. They are waiting to leave carrots for the reindeer, cookies and milk for Santa, and talk about the magic of Christmas.

We haven’t really experienced that awe feeling yet around Santa, and while I wish that little bit of extra magic was present for this Christmas, knowing that we can enjoy another year of simple family time together makes up for it in spades.

So from our family to yours, wishing you a Christmas full of love, laughter, and joy.

The Tooth Fairy

Early autumn we noticed that Robert was growing “shark teeth”. This happens when adult teeth grow in behind the baby teeth. I looked it up out of concern, only to discover it is a fairly common phenomenon for children. The search results indicated that it was best to encourage the child to wiggle free their baby tooth, and that the adult tooth would naturally go into place as the tongue pushed against it.

We checked Robert’s front bottom teeth, where a ‘shark tooth’ was growing in, and noticed that he did indeed have a loose tooth. We would periodically check it, but he didn’t seem bothered by it and was not interested in wiggling it loose, or having us wiggle it loose for him. I even tried wiggling it for him in his sleep (he swatted me away, even mid-dream)!

We were eating dinner with family one evening and I decided to show my brother Robert’s shark teeth. Only… Robert was missing a tooth! He no longer had shark teeth!

When I asked Robert about it, he just said “Partie!” (French for “Left”, or in this case “Gone”). He wouldn’t (couldn’t?) tell me what he did with it. We frantically searched his bedroom when we got home, and decided he must have swallowed it.

We told him the Tooth Fairy would not be able to visit him because she didn’t have a tooth to collect. He seemed unphased, and unaware of who this tooth fairy was.

Fast forward a few weeks… and Robert has another loose tooth!

This time I am determined to keep track of the tooth. The tooth fairy was going to finally make an appearance in our home. Day after day, morning noon and night, I would say to Robert “Is your tooth still there?” (yes) “What do you do if you lose your tooth?” (Give it to mom/dad/grandparent/teacher/EA).

I felt as though I was a broken record, and that he was getting annoyed by my constant questions. “Surely this must mean he’ll hand over the tooth when it falls out!” I thought to myself.

One day, after what seemed like an eternity of peppering him with questions, Robert was on the toilet. I quickly ran downstairs to put some laundry in the machine, telling him I would be right back. I came back upstairs not 30 seconds later to find a proud Robert who announced that his tooth was in the toilet.

The toilet full of poop.

It was a poop tooth now. And there was no way that I was reaching in to the full toilet bowl to fish that tooth out. Because poop floats, and the tooth sunk to the bottom of the toilet.

So, no visit from the tooth fairy once again.

Photo by Tú Nguyễn on Pexels.com

I know he doesn’t understand the concept of the Tooth Fairy, but I can’t help but feel as though he is missing out on a magical piece of childhood. I remember being at a family event at a legion hall and losing my tooth in the woman’s washroom, only to have it fall down the drain as I washed it in the sink. I was devastated to say the least, and begged my dad and uncles to take apart the drain and find my tooth (and they did!). I don’t remember how much the tooth fairy brought me per tooth, I just remember the magic and excitement surrounding the missing tooth.

It’s in those moments I find it difficult to parent my boy with Down Syndrome. I want him to experience these magical, social mores with his peers, but when he doesn’t understand, I struggle to find ways to make the moments important and to recognize this coming of age.

In hopes that the next tooth brings excitement, we’ve purchased a book for him that features the tooth fairy. Fingers crossed that the tooth fairy will bring her magic to our home in 2020!