A common narrative around a Down syndrome diagnosis: A new parent finds out, whether in utero or at birth, the child they’ve been expecting has Down syndrome. The news is followed by feelings of shock, confusion, anger, grief, and devastation, just to name a few. When the diagnosis is given in utero, the majority of parents choose to terminate the pregnancy. For the parents who choose to parent their child the feelings don’t just go away. Everyone has their own ways of working through grief and eventually, usually within the first year of the child’s life, the parent(s) does a complete 180, often feeling lucky to have a child with Down syndrome.
I know this is not the narrative for every parent having a child with Down syndrome. But by now I’ve met or interacted with thousands of those parents and it is a very, very common narrative.
Shortly after we brought August home, a mom who followed our journey via Instagram reached out to me. She had a one year old daughter with Down syndrome. She was reaching out to say she loved how we embraced August’s Down syndrome diagnosis from day one. She said she looked back on the first year of her daughter's life and felt distraught about the sadness and grief she felt about her child. A year down the road her love and adoration for her daughter with Down syndrome was so pronounced, she was having a difficult time understanding why she felt so sad in the beginning. She told me, “I wish I could go back in time and enjoy her instead of feeling so sad about who she was!”
I don’t share any of this to make any parent feel badly about their feelings and reactions about their child’s Down syndrome diagnosis. When it comes to how new parents need to navigate it, there is no judgment, only grace, upon grace, upon grace.
Both my eldest and youngest have Down syndrome. They also both came to me through adoption, adoptions which would not have taken place if they did not have their diagnosis. Although my children came to me through adoption, as a human in our society, I was not immune to the grief and devastation attached to a Down syndrome diagnosis. I did not want a child with Down syndrome and clearly stated that on my adoption forms. How Macyn came to be my daughter is a story too long for a blog post (I actually wrote a book about it!). She was not the first, second or third choice for my baby. Still, she managed to make it into my arms and the narrative of grief and sadness, which is tragically attached to a Down syndrome diagnosis, left me very quickly. In fact, before she even came home I did a complete 180 and started telling everyone who would listen just how amazing and wonderful my child with Down syndrome was, and how lucky I was to be her mama.
As the years have passed I have spent a lot of time thinking about, and researching, why exactly it is new moms getting a Down syndrome diagnosis still feel such a strong negative reaction when the majority of the parents who have children with Down syndrome no longer feel that deep sense of sadness connected to the diagnosis. My first conclusion was that sadness is attached to a missed expectation. Parents are expecting and dreaming about one thing and then it is something different. There is grief found in the loss of our expectations. I still believe this to be true, but I think it’s a much smaller piece of the negative narrative attached to a Down syndrome diagnosis.
The fact of the matter remains, babies with Down syndrome are born into a world saturated with ableism, the West, arguably, the most infected. And once we hold our new baby in our arms the ableism doesn’t just disappear from our lives. Parents who have made that 180 degree turn and who have gone on to shout the worth of people with Down syndrome may still be doing so without having addressed the ableism in their own lives. Because one of the greatest tragedies when it comes to ableism is that it is so deeply rooted in our society it’s extremely easy to miss. Even for, and maybe especially for, people who love a person with Down syndrome.
You may not like what I have to say here, but please hear me out:
I’m concerned the Down syndrome community is perpetuating the very ableism we believe we are combating. Ableism can disguise itself in words such as “can still do” and “but.” The perpetuation may begin when a family member offers condolences quickly followed by hope, “I’m sorry your baby has Down syndrome. But, did you know people with Down syndrome go to college?” Or when a doctor says something like, “They will have challenges but they can still do all the things other kids can do.” It’s when people in the world, including those of us raising a child with Down syndrome look at new parents, eyes swollen from tears of grief and disbelief, holding their tiny baby in their arms hearing things like, “but look at this person with Down syndrome who is going to college, driving a car, owning a business, modeling, reading, writing and speaking so clearly.” We share with them the success stories going viral on social media or the people with Down syndrome on the cover of magazines and say, “Have hope! People with Down syndrome can still do anything!”
We take this ablistic idea that our value and worth are tied to what we can and can’t do, and we place it on our children with Down syndrome.
Please don’t hear what I am not saying. I am not saying we shouldn’t help our children be the best version of themselves. I believe this is good for all our kids regardless of a disability or not. And for some people with Down syndrome their best self is opening a restaurant, completing an Ironman or starring in a movie. The harm is found when we strive for our children with Down syndrome to be more like people without Down syndrome, convinced their worth is found in what they can or cannot do instead of recognizing their worth as intrinsic.
For years, I have said I hope for a world where a parent with a new Down syndrome diagnosis is only congratulated and no longer consoled. Congratulated not because of what their child is capable of doing, but congratulated because their child is magic. Just as they are. Period. Full Stop. I want us to come alongside not just new parents, but all of those parents who are infected by ableism and say, “your kid is amazing because they are alive.” Isn’t that a relief? You don’t have to do anything more for your child to have value and worth. Your child doesn't have to be or do anything more to be so freaking worthy!
I believe it’s time to shift all the energy we put into making our kids with Down syndrome more like people without Down syndrome, towards dismantling the ableism in our world and in our own lives. I think it would do us some good to spend less time sharing, reporting on and celebrating people with Down syndrome who are successful and more time sharing, reporting on and celebrating people with Down syndrome just because they are so freaking rad. Period.
Not rad because they can, but rad because they are.
On a recent episode of The Lucky Few Podcast, we talked with a woman with Down syndrome named Karen Gaffney. Karen Gaffney is a legend. She’s accomplished so much in her life including being the first person with Down syndrome to swim the English Channel. Something Karen said while on the podcast was, “Down syndrome is a life meant to be lived.” Yes and amen. Down syndrome is not a life meant to be lived only if the person with Down syndrome can attend college, live independently, hold a job, read a book, write their name, drive a car, star in a movie, swim the English Channel etc. No! Down syndrome is a life meant to be lived. Period. Full stop.
I want us to know about Karen Gaffney. Not because of all she has done, but because of who she is: a woman with Down syndrome living her best life. I want us to always have hope in the fact that our child is a person with Down syndrome who will be their best self. And we get to play a key role in that. So embrace who they are. May every breath they breathe be a testimony of their value and worth.
