A vent. A vent I’ve been meaning to write for years, but haven’t had the right words until now.
Down syndrome community: our kids are ok because they are our fellow human beings. Period. Full stop. No further justification required.
I used to help moderate the Down syndrome board over on Baby Center and used to be involved in other groups online. I backed away long ago (long before Rowenna started to regress) because I just couldn’t read post after post of “it’s ok that your kid has Ds – look at my three year old who is reading and talking!” instead of just “my kid is awesome, your kid is awesome, and you’ll get there, too.”
Let me state right off the bat here that I don’t expect anyone to shade the truth about their child. I also don’t expect our community to take parents in a state of shock and share only the challenges and never the things that are oh-so-typical about our lives. We are all sharing our reality. Many of our kids follow a relatively typical developmental curve, and for the most part our lives overall are pretty normal.
But it’s the undercurrent of “it’s ok because it’s going to be normal” message that I find challenging, and what I’m venting about today. What does it say about families and children whose diagnoses (both inside and outside the Ds community) manifest in something that is outside the norm? Is it not ok, are these stories that shouldn’t be shared? Of course not. But the language we use sure can give that impression sometimes.
It’s going to be ok simply because it’s going to be ok. We all fall in love with our children no matter how the extra chromosome expresses itself. Those for whom Down syndrome looks pretty “typical” do not love their children more because of it, nor is their life more normal or better or more acceptable. Those of us whose children are on a different path do not love our children less, accept the diagnosis less, or have lives that are “not ok” because of the differences.
For a while now I’ve been withholding quite a bit of Rowenna’s story because she is no longer following a typical-but-slower growth curve like most of her peers with Ds. She no longer fits into the preferred Down syndrome narrative. I’ve done less reaching out to new families. I’ve done less reaching out to other Down syndrome families, except to ask and learn about autism and to share some of the fun moments my family has had this summer.
I get why I do it. Frankly, if someone had told me when Rowenna was two weeks old that it was possible she may never talk, or that she’ll talk for a while and then that skill will leave us, I wouldn’t have known what to do with that information. I do, however, think I would have responded positively to a message of “no matter what, no matter the abilities, you are going to love this child and be fiercely proud.”
So maybe we should consider spending some time spreading the message that acceptance comes with time and love and understanding, not just when milestones are met on time, and that acceptance eventually comes to all of us no matter what the extra chromosome presents to our children. Spread the message that our lives, and our children’s lives, are full and valid and good and challenging not because of how “normal” our kids have turned out to be, how “alike” their peers they are, but because we are families raising children and by definition that is simply a ball of love and chaos all mashed together.