I think the biggest learning experience we have as parents of a person with Down syndrome (or people with Down syndrome, as is my case) is in the years it takes to realize that our child’s individuality is what we have to defend in this world. We learn to avoid talking about them in an abstract or plural sense, or believing the falsehood that their condition will define their futures or unique personalities and we learn that this is unacceptable from others as well.
This Down Syndrome Awareness Day, my children are 14 and 12 years of age. Both of them have Down syndrome. I celebrate both every day of my life, but this year I want to put a special emphasis on my daughter`s experience of becoming a young lady. When Ayelen was born twelve years ago, she showed me from the very beginning that she would take no part in being a statistic, ever. Yes, she has Down syndrome but she has never been held back by her challenges. She has always been strongly motivated by her strengths, of which she has many. Something that I find amazing about Ayelen is her unapologetic ability to create stories in which she is always the heroin or princess.
Today I want to share one which talks about her transition from a little girl to pre-teen.
As I share this message, I consider it extremely important to remind parents that we are our children’s best advocates. That in the path of seeing them grow, we face prejudice and stigma. Professionals and people with experience in the field will make suggestions about what they believe to be their best educational placement, their futures, and even their bodies. We as parents must be always aware of the difference between those individuals and ourselves: they may have information about the syndrome or the diagnosis, we know our kids best. We, as it turns out, have all we need based on our child’s individuality and that is what it counts.
Your child, because of her or his diagnosis or his or her humanity, may face challenges and hard times in life, but that is not an immediate call to deprive a human being of their right to live, to learn, and to have a full range of experiences while on this planet. We must keep fighting with love and faith in their abilities. Not every child will have the same strengths or gain the same abilities just because, again, everyone is different. And that is just fine. However, before making a decision about our children’s bodies (or anything else), we must give them a chance to grow, rise to meet the challenge, try our best to give them the educational tools to succeed, and it is then and only then, if they do in fact require our interference, should we make a choice for them. We need to keep our expectations high to understand that no, you don’t choose to deprive a human being of their basic human rights based on speculation or out of fear. It doesn’t work like that.
I am saying all this because when my daughter got her period, we faced it naturally. Of course, she needed more time to process, more time to face it, and probably more supports to get used to it. But that never meant she can’t gain the ability to manage a monthly menstrual cycle, but that would never justify a decision to take away a natural experience which any girl her age has as they grow physically and psychologically. I was shocked by people’s reactions and unsolicited advice when my daughter started menstruating. I was naïve to how much prejudice still exists and how normal it is to believe a woman with a disability doesn’t have the right to menstruate because the stigma holds that she doesn’t have the ability (or human right) to ever become a mother. And perhaps even worse, we assume she doesn’t have the ability to take care of her own body or understand or develop personal boundaries. As a society, we feel it doesn’t even make sense to give these young women the chance to grow and show us who they can be and what they are capable of.
That said, my daughter made up this story as part of the process of accepting the fact that her body and her world were changing. I wasn’t planning on sharing any of this but she wants to share her story, and I believe that is awesome. This is the story of a strong princess armed with strength and passion to face it all. The story of a girl becoming a real princess after facing all the natural challenges that the period brings. A friend of ours illustrated her words. Yaya approved every picture, and that is how this short story came to life.
We hope this is going to help families understand the value of growing up along with their children to help them make the best possible choices about their bodies and to be there to support as needed based on their individual needs. In the end, we cannot determine their abilities or futures based on the Down syndrome. On days like this one, March 21st, we have to speak about individuality, and over and over again, about people first and always, with a right to write their own stories. Most importantly, we need to defend our children’s right to have the time and tools to move through this world at their own pace as they write their stories with their own voices.
