Why you don’t see parents of older children with Down syndrome
As I scroll through my Instagram feed, my screen is flooded with adorable photos of children with Down syndrome: babies and toddlers with their chubby cheeks and button noses. Their almond shaped eyes and joyful smiles are enough to make your heart melt. I remember when Ella was one of those babies but as the years have passed by, I see fewer and fewer stories of children her age with Down syndrome.
When Ella was born, I wrote out her story for our friends and family, but because it was on the internet and word spreads fast in Down syndrome circles, I suddenly became part of a global community I never knew I wanted to be a part of: the lucky few. Our story, which back then was on a blog, (back when blogs were a thing), was passed around, liked and shared and our circle grew. I also met other parents through the Down syndrome clinic at Alberta Children’s hospital and through the PREP program in Calgary. Eventually, we started a Facebook group for Canadian parents of children with DS. It grew rapidly and new parents were constantly being added to our numbers. And while I still keep in touch with many of those original families, I see less and less of them in person and online. Many of us had blogs and would blog regularly, but, posts became few and far between (much like this blog) and eventually disappeared altogether. But why? Where did they all go?
I would like to suggest four reasons why parents of older children with Down syndrome go offline.
We grieve differently
For those of us who process through writing, blogging was therapy. I could have written a post every single day in Ella’s early years. I was constantly learning something new, finding something else to worry about and recognising the realities of this new paradigm. I was so afraid she would die. I was afraid she would get cancer or stop breathing. I saw Ella’s face in every angel who gained their wings and every orphan waiting for a forever family.
I don’t think like that anymore. Of course I still worry. Hello!? We are living in the time of Coronavirus but I worry less and about different things. Anxiety is like an old enemy who sits uncomfortably in the corner giving you the stink eye every once and a while. You learn to live with it. Disappointment is sitting with him. In the beginning, I grieved for Ella’s death, before she ever really got on with living. Now, I grieve when I realise she may never know how to tie her shoes or when she forgets how to put her hair in a ponytail.
The future is now
This brings me to point number two. The future is now. When our kids were younger, we could dream whatever dreams we wanted and wrote about them. When Ella was a baby I would say, “I expect the same of her as I do of my older son”. Well, I can tell you now that that’s probably unrealistic. When Ella was a baby, I didn’t know what kind of cognitive or physical impairments she would have. I also didn’t know what talents she would possess either. I remember saying that my goal was that Ella would graduate with a regular diploma. Who the hell says that when their child is two?! I know now that that’s probably unrealistic too. Ella is a smart cookie, but as she slips further behind her grade level with each passing term, I need to be fair to her.
The academic ability of children with Down syndrome varies just as it does with neurotypical children. Sometimes, I find it really difficult to watch other children with Down syndrome doing grade level math or reading because I forget just that. Ella is her own person with her own strengths and weaknesses. She can sink 9 out of 10 baskets but struggles with telling time. I don’t know what to expect anymore, so I just take it a day at a time.
We are immersed in practicalities
I also take things a day at a time because I am immersed in practicalities. Ella is busy just like most kids her age. When your kids are older, you are a different kind of busy than when they are a toddler. Ella, being my socialite is especially busy. When it isn’t Coronavirus, she does swimming, horseback riding, Girl Guides and football club. She is also little miss popular so as her personal assistant, it is my job to manage her social calendar. Then there is homework to attend to, which we need to sit down and do together. She isn’t like her brother, whom I can leave to do his work on his own. Ella still needs one-to-one help. Life is hands on, full on and all the time.
We are trying to respect our child’s privacy
Finally, we need to respect our child’s privacy. Ella is her own person. Sometimes, there are things we just don’t want to share with the general public about our private lives. Our kids are no different. Sometimes, we share things so that others can be inspired or learn from our experience but other times, it’s okay just to keep things to ourselves.
Any parents of older children out there? Did I miss something?
Why did you stop writing?
This is such a good post and I’ve noticed it too. There aren’t too many moms writing about their adult children who have DS. I belong to a Facebook group for parents of adults with DS and they eventually opened it up to those with young children as well. They said it’s so young moms can get an idea of what life might be like but I’ve wondered if it was just because we don’t post that often.
My daughter Beth is 35. She gets acne. She’s overweight. She’s not ‘cute’ like she was at 3 years old. None of us are! 🙂
And like you said, when our kids are little, much of our lives are spent thinking and preparing for their future. But now? Now we’re living that future and the fear is gone. The newness of the diagnosis is gone and now this is just our life. Like most typical adults she’s not learning magnificent new things every day, the milestones slow down so there’s not a lot TO post about.
And Beth has two younger sisters (29 and 33) who have felt a little neglected throughout their lives (although I can make you a long list of things we’ve done for them that we never did for Beth) so posting too often about Beth could bring hurt feelings and division to our family. But they definitely don’t want me posting about them! It’s a delicate balance. So for me, it’s not worth it.
Another reason may just be technology in general. We didn’t raise our kids with social media so we aren’t used to sharing all the little details. Beth learned to walk without anyone else knowing. I don’t have one single picture of her tying her shoes. And most adults with DS do not care what they look like. And they won’t care what you look like either. They don’t care if your shoes cost $100 or $10. Or if your coat is from Nordstrom’s or Walmart. And unfortunately social media is ALL ABOUT what you look like on the outside.
Every person that I know who has DS cares about your character. How do you speak to your friends? Do you help others? Are you kind? They know what’s truly important.