Mae’s Story: “What Can I Say About Mae?”
Happy World Down Syndrome Day! The following is written by Leah, a wonderful, caring, advocate - and mom to Mae and Annie. Leah helps give words to how Mae takes in the world and breaks apart some of the stereotypes that are common for those with down syndrome.
“What Can I say about Mae”
Written by: Leah
What can I say about Mae? She is dynamic, artistic, imaginative, empathetic, impulsive,
and silly. Ah she is so great! I love the way she sees and experiences the world. She loves music
from movies- not the music that you might initially associate with the movie, like “Let It
Go” or “You’ve Got A Friend In Me”, but the instrumental music that is playing
throughout the movie, in the background. It’s the music that my brain never even
registered was there, but Mae, even as young as three, was listening to that while also
watching the story unfold. You can play any of the instrumental music from her favorite
movies and she will tell you what is going on in that scene. She is a big fan of Toy Story
and just tonight she got upset because she wanted to listen to Toy Story 3’s soundtrack,
not Toy Story 2’s which was currently playing.
She picks up on things- notices people’s emotions, their preferences, their body
language. She seems to understand people deeply. As a big sister, she has a keen
understanding of her baby sister, Annie’s, needs. She seems to be able to differentiate
her cries, which no adult has been able to do, and can accurately gauge what her sister
is asking for. It has been beautiful to see her blossom in her role as a big sister- she
worries for Annie when she cries, gets her pacifier if she thinks it might be helpful, reads
her stories, and sings her songs. Mae can get her sister to belly-laugh better than
anyone and she enjoys every minute of it.
Her 4K peers described her during their friendship day celebration as ‘sweet’, ‘nice’,
‘silly’, and ‘funny’. Her big cousin loves playing with her and says “she’s a good friend,
a gooder friend than I’ve ever had. She’s a very nice friend and kid.”
Her verbal language is still catching up to her understanding of the world around her.
This can be frustrating for her at times, and honestly, frustrating for me when I see
people underestimating her. She may not always speak up when she knows the
answer or contribute to a fast-paced conversation, but when asked about it later, she
will show you in various ways that she knows what was said, and what she thinks about
it. Some people may look at some of Mae’s impulsive actions and see that as an
example of “who” she is. But this is just one small aspect of her whole self, as is true for
anyone. She herself can get frustrated with her impulsiveness, which honestly makes
me a little sad as I want her to love her whole self- even the parts that are a little rough.
She can get down on herself when she does something wrong, like hit her beloved
sister out of impulsive excitement, and it is obvious that she hopes she won’t ever do it
again. I just have to hope that as she gets older, people won’t deduce her to these
actions alone, but will see her for her full, dynamic self.
I guess I am writing all of this to show a broader picture of who Mae is as a way to break
apart some of the stereotypes that are common for those with Down syndrome. Their
personalities can be narrowed to various assumptions and biases which are inaccurate
and hurtful. An individual is not defined by a diagnosis- each person is their own- with
their own joys, struggles, quirks, and nuances.
Raising Mae has been such a beautiful adventure, and we are just getting started.
Happy World Down syndrome Day! May we see the beauty in others and their
differences.
