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.
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.
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.
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.
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.
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).
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.
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.
They didn’t know us.
They didn’t know him.