Friday, October 31, 2014

Ending a month of Down Syndrome Awareness posts

October 28 - 31 for 21: That Gap next to the big toe

There are a bunch of common physical characteristics in people with Down syndrome. Some of the most common are:

- those beautiful slanted eyes
- a flat nasal bridge
- a single crease across the palm of the hand (transverse palmar crease)
- excessive space between big toe and second toe
- short stature
- low muscle tone
- excessive flexibility
- lower set ears
- Brushfield spots in the iris of the eye
- stabismus (crossed eyes)

I love looking at Sofia's feet. That large gap seems to awesome to me. It looks as if her feet are trying to spread out and grab more of the world.

In her eyes, the beautiful Brushfield spots look like stars in the sky.

Sofia's nasal bridge is not very flat - she is able to wear regular eyeglasses. But many of our DS friends get their eyeglasses from Specs4Us, specially designed for both the flatter nose and lower ears.

Often a maternity ward nurse will look at the single crease across the palm of a newborn's hand and know for sure, before the genetic tests come back, that this baby has the extra special chromosome of Down syndrome.

I look at Sofia, and at others with Down syndrome, and sometimes their beauty just takes my breath away.

October 29 - 31 for 21: Processing

I'm always fascinated with what Sofia notices and how she processes things.

First, there is her skill at naming things. She's very creative with words. She likes to walk "footprints" (rather than barefoot). My favorite Sofia word is "Snowmatoes" - you know, mini-marshmallows!
When a movie or TV show might be a little scary but she still wants to watch it, she'll say "No Scared No Glad". We're not sure where the Glad came in, but in her mind it's very linked with Scared. Yesterday I said I was Glad about something, and she argued vehemently that I was not Glad.

When she IS scared about something, she tells us the way things SHOULD be. Tomorrow is the "Spooky Run" at her school - apparently the teachers will dress up in costumes and the kids will chase them through the woods by the school. Sofia's not into it. "No costumes. Just clothes." over and over this evening. She does NOT like adults in costume!

It's also interesting to see the things that she does notice and focus on when learning. Today she went on a field trip to Plimoth Plantation (for you non-locals, it's a living museum in Plymouth that shows the original settlement of the Plymouth Colony established in the 17th century by English colonists.) Yesterday, in preparation, they watched a video about the Pilgrims and the Wampanoag Indians. She came home all excited that she was going to see "Boys with Tattoos. Girls just skins and feathers. Cooking. Boats."

(Oh, and we found an Elsa costume - poor Rapunzel has been tossed aside...)

October 30 - 31 for 21: Facts and Things about Down Syndrome

(mostly gathered from a pamphlet by the National Down Syndrome Congress)

- Down syndrome is a chromosome variation with no known cause

- It is not related to race, nationality, religion or socio-economic status

- in the US, approximately 1 in every 800 to 1000 children is born with DS

- About 80% of babies with DS are born to women UNDER age 35

- People with Down syndrome vary widely in mental abilities, physical development, and behavior. Most people with DS experience some degree of cognitive delay, but there is a wide spectrum of mental abilities, developmental progress and behavior

- Adults with Down syndrome can hold jobs, live independently, and enjoy community life just like anyone else. They can attend college and get married, too!

- The chance of having a child with Down syndrome increases with the mother's age

- The chance of having a SECOND baby with DS in a future pregnancy is only about 1%

- 95% of people with DS have an extra 21st chromosome in every cell in their body - Trisomy 21 (this is what Sofia has)

- 3% - 4% have an additional 21st chromosome attached to another chromosome. This is called Translocation Down syndrome

- 1% have an extra 21st chromosome in some cells but not in others - this is Mosaic Down syndrome

October 31 - 31 for 21: A Whole Month of Down Syndrome Awareness

Would I change anything?

I would not change Sofia. She is Sofia, in all her glory.

I would change society.

I would change how people - strangers - see my daughter. Because anyone who does know her knows how incredible she is.

I would change how many play dates and parties she is invited to. (Although thankfully she is invited to the parties from the day school crowd, which more than makes up for not being invited from the public school kids).

I would change how hard she has to work to learn things. Reading and math take a very long time. But she is getting there.

I would change old fashioned or closed-minded opinions (oh, wait, I do that already!).

I would change the Milestone "charts" that tell me that my daughter is Delayed. Instead, I would add in more "Savor that time" so that each milestone reached is cause for celebration.

I would change society's need for people to be The Same, and instead make sure we value Difference and Diversity.

I would change access to excellent health care, support services and educational assistance for anyone who needs it. Everywhere.

I would change the world.

I would NOT change Sofia.

I would not remove that extra chromosome from every cell of her body. It is part of her, and what makes her Sofia.

I might sometimes be tempted to change her more challenging behaviors. Or I can just accept the challenge, and do my best to see things from her point of view.

Thank you for reading these 31 for 21 posts. It's been fun and challenging. And I'm REALLY glad it's over!