October is Down syndrome awareness month and this year, October is more special than ever to me. I have a teenager at home who acts like a typical teenager, which I love! He wants privacy and independence, is constantly looking for challenges, and like any other teenager in the world, finds joy in challenging me.
I also have a female tween at home: a tween who started her period a couple of months ago. She is a smart girl who has written her own mental story in order to face this big reality. The fact is that we women bleed and we need to accept this in order to truly grow up. In her case, even living with Down syndrome, she has the exact same need to live with and overcome these transitions. Because my daughter is so bright in her individuality, she has decided to turn entering this phase of womanhood into another magical chapter of her life. In her eyes, all this is just a sign that a girl is becoming a princess, and becoming a princess is sometimes uncomfortable.
This October is different, just like every new October, honestly. I find myself living through a phase that long ago would have scared me to death. The teenage years. I re-read some articles from the very beginning and all of them have something in common: fear. I still have fear but in a completely different way. To be honest, my only fear now is related to death, my own death, specifically, because I feel is the only thing I will never be able to control. Everything else seems excitingly possible, achievable and worth facing.
This October, I am mature and strong enough to believe that my children can, that my children will, and that my children have the right to be. The world hasn’t changed as much but I have changed myself. Even though it is never enough, it’s a great beginning to provoke systemic, widespread change in this world. There is one piece though that remains static, I still cringe when people feel they have the right to make assumptions about my children’s future. I still wince when, based on their disability, they pretend to know their ability. My evolution is most prominent here because I don’t feel the need to apologize about this anymore. I have connected to my deeper self and I have regained the ability to effectively communicate that I don’t give a sh** about your opinion if you don’t invest the necessary time and respect to get to know my children as they are, as unique individuals.
I have worked hard in building dignity for my family. Thanks to that, I would have thought some old stories would stop repeating themselves, but this is not the case. There is a very common tale that surrounds women with Down syndrome that I never imagined was going to hit home, but it did. We’ve received some unsolicited advice about my daughter’s sexuality.
Who in the world feels special enough to approach me, the parent, with a speech about why girls “like mine” must be sterilized? Who in the world feels superior enough to suggest medical treatments which would “relieve” her of the natural and strengthening gift of becoming a grown woman?
These encounters never stop surprising me. When these things happen, I look at myself in the mirror to reflect,
- “Do I look like the kind of parent who wants or needs to be told what to do to her children?
- Does my daughter look like the kind of human being who depends on people’s opinions regarding her most intimate choice in relation to her body and her sexuality?”
I guess people still fail to see us as individuals because they choose to see the extra chromosome first – which in their eyes seems to define my needs as a mom too. Is this the “Down syndrome mom” effect? I respectfully inform you that it doesn’t apply to my case, nor the case of anyone else. We are all different. We are all unique human beings.
And because I am human, I am not the same as I used to be. This, I find normal. My Down syndrome awareness articles are still about love and faith but they have a powerful component: higher expectations. I have more love and faith than ever, and that is maybe why I have realized that the only way to change the world is by choosing to speak up. Once upon a time, I didn’t want to react and make people feel bad about their intrusions. I still don’t want them to feel bad but I want them to learn so we all feel better around one another and so that my children, and other children, are challenged, accepted and truly seen for who they are.
So this awareness month has a very special message:
- If you don’t know this experience from the inside,
- Don’t offer unsolicited advice.
- Don’t choose to speak from a place of prejudice
- Don’t you dare to assume what my children need based on their physical characteristics
- Don’t disrespect my role as a mother and don’t disrespect their right to make choices about their bodies, their futures, and their dreams as individuals
I know. I’m so rude! You don’t want to be told what to do, of course. So just imagine then how it feels when you as a parent or as an individual with Down syndrome or any other disability, are supposed to be lectured by the world just because they’re trying to be nice to you and your cute children. Thank you, but no thank you.
This is my 2018 Down syndrome month message! My children have a voice and my children have a choice. Respect it!
