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 disabilitiesand 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.
Sometimes, something happens and it’s not really a big deal, but the weight of that moment feels like so much to bare. One more thing on an already full plate.
Report card season? It’s not just looking over one report card, it’s looking at two. It’s trying to figure out how the report card and the education plan for your child line up.
Doctor’s appointment? It’s not just one quick visit to the family doctor, it’s an appointment with the pediatrician, followed by blood work, followed by a follow-up visit or call.
And usually, these ‘little extras’ aren’t a big deal. But sometimes, it’s just one more thing on a full plate.
Recently, we’ve been pretty quiet on the blog. It’s been a succession of events that have felt like “one more thing” on an already full plate. And blogging about it, while typically therapeutic, just wasn’t a priority.
But summer is here. School is nearly out. The return to normalcy feels imminent and possible this summer.
We’ve registered Robert for some private swimming lessons at a local pool. He starts next month, and fingers crossed that it’s a wonderful experience for us! He’s been partnered with an instructor who has conversational level French skills, and he has been so excited to swim all year (the overflowing bathtub as he attempts the freestyle in the tub are proof of that).
Our boys are forever keeping us on our toes, challenging us to become better parents, more patient people and (most importantly) safe places for them to process emotions. And just when we think that we’re at our breaking point, someone comes over and gives us the sweetest hug or says the sweetest thing.
Making “soup” together
For Father’s Day, I asked the boys to draw something for their Pépère. Robert drew one of his dolls, complete with her wild hair, big eyes and shoes. I’ve wondered when he’d begin drawing people. It’s a skill that’s been broached with his OT before. “Tadpole” people are typically drawn by children between 3 and 5 years old, with more details emerging the older they get. You know, the head with legs and arms directly attached to it. This is where Robert’s at – and while some parents might think “ah, it’s just stick people drawing, not a big deal!”… for us, it’s ONE MORE THING.
It’s one more thing to celebrate! One more thing to marvel at! One more step in his development and understanding!
It’s one more thing for us to be proud of. It’s one more thing for Robert to do with confidence.
So while sometimes, one more thing is heavy and feels like the breaking point is near, other times, that one more thing is simply marvellous!
What’s that one more thing your child has done this month that’s made you proud?
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.
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.
I have nothing especially poignant to write about.
Like many others, I’ve struggled some days more than others.
I tried to remind myself in the hard moments how lucky I am. I have family near by who is able to help us out a tremendous amount. My husband and I are both working. My kids are doing alright, and for the most part they ground me.
But boy… Momming in a pandemic is something else, isn’t it?
I’ve felt this weight on my shoulders for a week or so.
I tried to ignore it. It was still ther.e
I tried to lighten it. It felt heavier.
I tried commiseration with friends and family. That helped me to feel less alone…but it didn’t really help me feel better when I realized that they are also carrying a weight on their shoulders – they, too, are trying to balance their load while they stay upright.
I’m tired but I can’t sleep. When I do sleep, it’s restless.
I am constantly questioning every choice, wondering after each one if I made the right choice. Questioning and second guessing. Again and again.
Social media updates on my feed show me friends’ kids going back to school. Parents back at work. The images leave me feeling like I’m missing out on something. We are keeping our kids home. I’m working from home. Studying from home.
When I became a mama, instead of losing my sense of self, I felt more certain of it. This pandemic has taken that away and replaced it with questions.
The pandemic didn’t help me become more organized around the house, even though I watched The Home Edit on Netflix. My house didn’t get a floor to ceiling clean, even though I follow @GoCleanCo on instagram. It didn’t give me time to pick up a new hobby, even though the memes on Facebook suggested now, more than ever, was the time!
The pandemic has given me more time to think about planning, organizing, and really, just reminding me to remember every little thing that needs remembering. That mental load is real.
There is worry about my children falling behind in fundamental skills. After-all, I always relied on daycare to teach my kids how to eat yogurt and soup! It was the ECEs who taught my sons how to “flip” their jackets to get ready to go play outside…And now I worry that socially my kids will miss out on important phases and stages because they don’t see others their own age to help correct some behaviour (or encourage others).
I’m still wondering what school will look like for Robert this year – we’re still waiting to hear what the plan is to enhance and support his learning.
Those worries and questions… that weight. It’s always there.
It’s a lot.
So, I have nothing especially poignant to write about today. Maybe I’m stuck wondering about purpose. Maybe I’m just tired.
Or… Maybe.. Just maybe… this is exactly what every mom out there is feeling right now, too.
As my oldest son is about to embark on his journey as a first grader, I’ve been thinking about the first 6 years of his life, and reflecting on what’s it been like to raise a child with down syndrome.
Robert, 8 months old
When Robert was born, we didn’t know he had Down syndrome. We received a birth diagnosis – I was alone in the hospital room faced with minor surgery to close a tear near my cervix. I remember feeling as though the staff felt that his diagnosis meant that our son wasn’t going to be capable. We were mostly warned of all that could go wrong, and it didn’t seem as though there was anyone to champion what our journey might look like.
I remember that Robert was born just before World Down Syndrome Day, and the video circulating that year was “Dear Future Mom”. I cried watching it. Alone in mother care I cried for my son who was down the hall, alone in a NICU room. That video gave me hope, it countered the messages the health care workers were giving me.
“dear future mom” video, posted to youtube.com
In the video, there is reference to how similar kids with down syndrome are to their peers with 46 chromosomes. The similarities are juxtaposed with a message that at times things will be incredibly difficult.
We spent the first year of Robert’s life much the same as the way we spent the first year of our other boys’ lives – sleep deprived, happy and full of wonder that this child was ours. We marvelled at his growth and celebrated all of his accomplishments.
We learned sign language and made a point to use it in order to open up the lines of communication with him as soon as possible.
We were hard on ourselves when we compared the milestones he had yet to achieve with those his (typical) peers were surpassing. He always surprised us, achieving the milestones on his on terms and in his own time.
He reminded us daily that he was capable.
When Robert was 2 and 3, we had many appointments. He was closely monitored to ensure he was growing well and his body was healthy. The ophthalmologist prescribed him glasses. He had bloodwork done, as he will continue to have done on a yearly basis.
Robert, age 2
Just before his second birthday, he took his first steps. We knew he needed as many opportunities to move and strengthen his muscles, so we enrolled him in all sorts of activities. Gymnastics was his favourite.
He made friends at daycare, despite being speech delayed. Kids in his class learned the signs he used most often. We participated in research studies that exposed him to therapies typically reserved for children with autism, in an effort to help him learn to speak and master new skills.
Robert, age 3
He went to music therapy. Had audiology appointments every 3 months or so to ensure his hearing was progressing well. We went to provincially funded speech language therapy appointments.
Then, at 4 years old Robert, had an explosion of growth and skills. He started junior kindergarten, and in the 2 years since he learned to walk, he became a flight risk with no concept of danger. Then, like now, his ability to assess a situation to determine if it’s dangerous wasn’t developed. On a field trip to the sugar shack, the educators saw how quickly he can become distracted by a playground.
Robert, age 4 photocredit: Lace&Lavender Photography
He had an echocardiogram. More blood work. More eye appointments.
And as his language exploded, his personality became even bigger.
He began his potty training journey, and was night and day trained before the age of 5, with few accidents. He started to learn how to play interactively with others (and not just next to them).
Just before he turned 4, he became a big brother. He took to that like a fish to water, and was so proud to be a big brother.
At 5, Robert began to play violin. He became a big brother twice over – not nearly as excited about the second brother as he was about the first, but still asked to hold “his” baby every chance he could. 5 year old Robert loved to help, to perform, to play and to read. His early reading skills began to emerge, and he had a thirst for all books, especially early reader books.
Our 5 year old Robert could count in French and English, he knew his alphabet in both languages, and he began to test boundaries in new ways (which meant he was getting into mischief).
Robert, 5 ans
And now Robert is 6, and he has become a teacher. He loves to show his little brothers what he knows. He will sit next to them and read early reader books en français out loud, pointing out what he finds funny in the images. He gets frustrated when he is made to exercise and stretch new brain muscles, preferring, like many of us, to do easier things.
At 6, Robert is still playing the violin. He loves putting on concert after concert for the family on the back deck, and he can often be found singing and playing air guitar on a makeshift stage.
Robert, 6 ans Photo credit: Ruckle Photography+Video
6 year old Robert still has annual bloodwork and hearing appointments. He still loves being a big brother. He is still looking for ways to get into trouble (ask me about acrylic paint…). He thinks pirates are the best, he loves to make people laugh, and he’ll take to you instantly if you play “le foot” (soccer) with him.
While Covid has prevented him from learning how to better interact with his peers, it has allowed him to learn how to kick a ball over a tall fence, to learn how to play a variety of board and card games, and he has been fortunate enough to develop a deeper relationship and bond with his grandparents.
And I watch all he can do, and how much love he gives, I think back to what those health care workers told us.
They said when he was born that there would be so much he wouldn’t be able to do.
They tried to cast shame and doubt over the newborn I had just birthed.
They didn’t know the first words I ever whispered to him, “you made a lot of people very happy just by being born.”
They didn’t know that we would reject the ideas they tried to plant in our minds, accepting only that he was capable, loved and ours.
LuckyMama 