Tuesday, September 11, 2012

Its called Up syndrome

Writing this took a lot of consideration. I pray I made the right decision.

I had an unexpected surprise. One that I was less prepared for then I thought. I met the 29 year old.

I had planned to get together with her mom and was pleasantly surprised to see the mom wasn't alone when she got to my house. I opened my door to two smiling faces, one whom was younger, slightly shorter with beautiful long brown hair. She stood outside my door with her arms tightly wrapped around a very thick book, a tee-length dress and perfect posture. And as I reached out to shake her hand my excitement was quickly accompanied by fear. I didn't know what to say.

I know how to talk to fellow parents about Down syndrome. I know I to engage with children. But an adult, my age? Older then me actually. Should I talk about Down syndrome? Or Up syndrome, as she insists it be called. She made me feel tense about mentioning it directly because of her adversity towards it. I could hear it in her voice, how she just detest that she has it. Herself, on the other hand, she loves. I have never met someone who was so confident in themselves. No need to tell her that she is beautiful and smart, of that she is sure of. But she also likes to think that others cannot tell she has Up syndrome, as if she relates ugly and dumb to the extra chromosome. And gets very upset when people knows she has it.

I found it incredibly difficult to talk to her in a way she could comprehend well yet not talking down to her. Her manners were impeccable. Her speech, elegant. She spoke slowly and articulated every word with great concentration... there is no doubt in my mind that her mind isn't brilliant beyond her speech. But there was also many times I found myself having to reword things or repeat in a different way so that she understood. The whole time trying to choke back tears pushing to stream for many different reasons.

I felt like I was talking to Fiona in 20 some years. I was hearing the pain Fiona has a head of her from a first hand account and it was clear why this girl had her guard up about Up syndrome.... she knows that people treat her differently because of it. She knows she is excluded from things. She knows people look down on her. She has been hit, pushed, left out, left behind and ignored. And I could tell exactly what she was thinking.... If I am good enough, smart enough, pretty enough, I can fool them. And if I can fool them, then I will be accepted. I wanted to cry because I knew there was nothing I could do for her or for Fiona... the only thing to prevent this pain is for others to do something. And that, readers, is a big dream to think that everyone will all of a sudden understand compassion and inclusion between now and when Fiona enters the school system.

This girl was included, well, at least her family had her included. Normal schools, hung out with typical peers... but she wasn't really included. She re-accounted for me a time when she was at the beach with her younger sister and how people would act like she wasn't even there. How one boy walked with her for a few minutes, but she could tell it was out of pity. She was so nervous, she kept asking him the same question and eventually he got annoyed and left her to walk alone. Inclusion is a big part of what made her dislike Up syndrome. How do you make people like and understand your kid? You can't. That comes from compassionate hearts, understanding and educating... but there just isn't enough of that in the world.

Its important to remember this pain isn't what rules her life. She loves her life, she loves her family, she has big dreams of publishing a book and being on Ellen. She is confident, smart, able to live on her own. Although her mom lives with her in her apartment, she says she prefers this because she likes spending time with her mom. Couldn't control the tears with that one, let a few slip with a prayer that Fiona says the same thing when she is 29. She is able. She is worthy. She is perfect. I am praying she just understands she is perfect even with that extra chromosome she so badly wants to hide.

I hope that she becomes a bigger part of my life. For two reasons... because she is a pleasure to be around and that she can see how I embrace Up syndrome and be more proud of who she is, 47 chromosomes and all. Not that her family doesn't already do this, but I sense not too many people out side of her family let off that Up syndrome is a good thing. It is interesting and difficult at times navigating how to talk with her. That's something, though, I am sure will get easier with each conversation. It gave me a better understanding of how people may have trouble interacting with Fiona as she ages. Its hard to explain to those who don't understand how people with Down syndrome can be so smart while yet have a hard time comprehending. But without a doubt, every person I have met with Down syndrome, smart would be one of the words I use to describe them. You just have to actually engage with them to see it.


  1. What an amazing post. Thanks and as the mother of a 9yo with Down Syndrome I know exactly what you mean.

  2. Thanks for sharing. I think conversation will also come more naturally as you get to know and get used to each other.


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