October is Down Syndrome Awareness & Acceptance Month!
There are still SO many misconceptions about what DS is or isn't and education makes all the difference in the world.
I'd like to have my life together enough to post daily on social media, but facts are facts and I do not. shrug emoji.
I figured a blog post would cover most of it in one fell swoop.
I just want to point out a few things about DS that you may not know and share a bit about our girls. I have a feeling you will see that they have a LOT more in common with the kiddos in your life, than not.
(Most facts copied/pasted from National Down Syndrome Society. Too tired/lazy/busy to attempt to put them in my own words.)
(Most facts copied/pasted from National Down Syndrome Society. Too tired/lazy/busy to attempt to put them in my own words.)
- Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
This is Lincoln's actual karotype... isn't it precious?! I cried the first time I saw it because it was so beautiful to me.
- Down syndrome occurs in people of all races and economic levels.
Both abandoned at birth because of their extra chromosome (that's only the beginning of the explanation fyi's).
Don't think for a second that this isn't also happening in the U.S.
It absolutely is. About 6,000 babies are born with DS each year in the U.S.but.... 67 percent of pregnancies with a prenatal DS diagnosis are terminated. Some countries it's nearly 100 percent.
Some common physical traits in DS include:
- Flattened facial profile and nose
- Small head, ears, and mouth
- Upward slanting eyes, often with a skin fold that comes out from the upper eyelid and covers the inner corner of the eye
- White spots on the colored part of the eye (called Brushfield spots)
- Wide, short hands with short fingers
- A single, deep, crease across the palm of the hand
- A deep groove between the first and second toes
Some folks say you "can hardly tell she has 'Downs'!" or "She must not have it much.", especially toward Anna Gray. Guys.
1) These are offensive. More or less visible traits is not better or worse. She just looks how she looks (and most likely favors her birth parents more than another person with DS).
2) You can't have a "little bit" of Down syndrome. A person either has it or they don't.
In addition to facial features of DS, both our girls have long torsos and shorter legs, round bellies and no booty to hold up their pants. They have shorter fingers and sweet sweet feet- all common.
Anna Gray also has long golden hair, the brightest smile, sparkling blue eyes and she's strong as an ox. None of which are related to her having DS.
Lincoln has big brown eyes with the longest lashes, baby doll kissable lips, and the most precious hands I've ever seen.
Other characteristics associated with DS are even more of a spectrum; they can show up in all kinds of ways or not at all.
Individuals with Down syndrome are just that- individuals.
Every person has strengths and weaknesses, extra chromies or not!
- Decreased muscle tone and hyperflexibility
ANNA GRAY:
While it took her a little bit longer to start walking than a typical child, she quickly went from the penguin waddle to running... climbing... you name it. We spend a signifant amount of time chasing this child, ha.
She particulary loves climbing kitchen cabinets. We put up a baby gate, but she went over it. And then under it.
She's mastered stairs and pumping her legs in a swing (when she wants) and pedaling a bike/trike (when she wants) and perfect splits. Last week she did the seated zip line on her field trip, holding on herself without any kind of buckle or strap :)
LINCOLN:
Lincoln will be four this month and still does not walk. Partly because of low musle tone and less practice time, only being home nine months so far. Partly because too many people want to carry her everywhere, ha. She crawls super duper fast, cruises furniture and she is verrryyyy close to taking steps. She's just enjoying this new family-lovin-on-ya business for now; also known as "spoiled rotten" and we know it.
She has learned to climb out of her baby bed (she lands on Brynn's mattress and thinks it is hilarious). I am trying to convince her that if she's going to continue to climb out, she might as well stand up and march around ... soon :)
- Poor fine motor skills
ANNA GRAY:
This is an area AG still needs work in. Writing letters, numbers, etc has been a struggle and big goal for her/us. Feeding herself is a bit messy. We work on buttoning jackets, attempting zippers and laces. She unbuckles her carseat ::side eye::
Anna Gray LOVES to cook. It's great practice for fine motor skills! She can make entire meals by herself and she is soooo proud (sames)!
Recently, she has shown us that she can get herself ready for bed from start to finish: Taking off her clothes, putting on a pull up and pajamas all by herself! So proud!
LINCOLN:
Lincoln has the tee-tiniest hands and they are working out just great for her. She has fantastic fine motor skills!
She is still working on control/strength when it comes to feeding herself, painting etc. but pointing, pushing buttons, grip are all awesome. She loves to brush her own teeth after I brush them!
Her ASL precision is impressive, I think, and she has no trouble removing her clothes and diapers lickitysplit ;)
- Delayed speech and language development
ANNA GRAY:
Anna Gray was chatty from the day we met her. She has pretty strong verbal skills (um... in three languages). I would say any given person could understand 75% of her speech and it's getting better all the time.
She has been speaking in 4-5 word sentences/long phrases for a while and has gotten really conversational lately. Some of it is mimmicked conversation still - every time she leaves the house she says "Have a good day! Love you!" or when I pick her up from school she immediately asks, "How was your day?" because that's what she's heard. Her independent conversation has really grown though!
For example, I asked her what she wanted for lunch. She thought about it (always tapping the chin or else it's not really thinking...) and then said, "I want saaam-wich, peanut buttaahh,,, and honeyyy.. and graaaapes aaaannnd pretzels." SO EXCITING.
She loves to bless our food. I took a picture this night because she said, "Thank you my food, my baby sister, my mommy, Maui- shapeshifter, demi-god, hero of men. Amen."
LINCOLN:
Lincoln's receptive language seems pretty good. Meaning, she usually understands what is being said to her. However, she is totally nonverbal at this time. She makes noises and she has started mimmicking some early sounds, but nothing recognizable yet.
Reminder: not using words does NOT mean not communicating! She is constantly communicating in a variety of ways. Grunting, pointing, facial expressions, ASL (she uses about ten signs consistenly but learning more all the time), fussing, laughing are all communication!
Clearly "saying" Gimme that popsicle...
- Sensory needs
Neither of our girls are super sensory seekers or avoiders. They both LOVE vestibular input (the vestibular system helps with movement, balance, spatial awareness, vision, and emotional regulation.) They both love swinging, spinning, etc but don't seem to crave it necessarily.
When tired, Anna Gray takes the ends of her hair and pokes herself all over, ha. Somehow that's soothing to her. She also chews her thumb. And Lincoln does not like the grass to touch her feet ever!
- Attention span and impulse control
So far, we have not seen this to be an issue for Lincoln at all. Anna Gray on the other had, has some top-notch (diagnosed) ADHD, that again, may or may not be related to having Down syndrome. While it's true she is very busy and wiggly and all those things, the biggest issue is SAFETY. She is extremely impulsive and completely unaware of consequences. We have gates, locks, alarms and all kinds of business- she's quick. We are all-hands-on-deck all the time.
Even with all of those preventions, we were finding her in various places in the night and wee hours of the morning doing who-knows-what. Usually eating food from the freezer... which she opened after climbing the counters to get scissiors or knives that are "out of reach". She has snuck outside (fenced in, but still...) to pick flowers or feed the chickens. Terrifying kinda.
Now she sleeps in a bed tent to keep her safe. She loves it and three of our other kids want one, ha. She's sleeping better and so are we!
This is my favorite "work" to come home from school ever.
"Draw a picture of yourself showing self-control."
This one is tricky! Yes, our girls love hard. No, they are not happy "all the time." Because, you know, they're humans with a full range of human emotions. They (and by "they" I mean, my daughters... can't speak for anyone else ....) do forgive easily though so I think that quick recovery gives off an overall positive vibe. And the hugs. They hug freely and sometimes aggressively :) This sometimes gets even trickier with attachment in play due to their adoptions. It's a fine line between letting that light shine and teaching them that hugging strangers is not always appropriate. Or that not everyone wants to be hugged! We practice both asking permission AND saying no to someone else's unwanted touch.
When AG knows she is wrong, she whispers. It is the cutest thing. Whether she is talking to you or to herself, she does it everytime she knows she's being rotten AND I LOVE IT. She also corrects her own behavior or answers her own questions in the same sing-songy voice her important adults do. Toooo cute.
True in our house! For both girls. However, there's a good chance this is tied to frustration/anxiety when they can't effectively communicate their needs or wants. And the more the frustration builds, the harder it is to communicate (applicable to all people, no?)
The classic "flop and drop" haha. I made her 'Doc McStuffins pancakes' for her birthday, but I didn't have a regular candle- she was not having my improvised fix!
Both of our girls wear....err, have... glasses. Lincoln is legally blind and has pretty severe nystagmus. (go HERE if you're unfamiliar and curious.) And just for some fun eyeball facts: Lincoln's eyes often look "crossed" or moving as if she has ocular weakness. They aren't, actually. She has virtually no nasal bridge at all from the Chinese-DS combo, so it changes *OUR* perception of her eye placement. It looks to us as if her eye(s) cross, but it's actually because she doesn't have a bridge to give us comparison while looking at her. Interesting huh?
Ana Gray may have slight hearing loss, but it's sure not slowing her down. Lincoln hasn't passed a hearing test and recently had an ABR (auditory brainstem response testing) which was normal. So, for now, "she's not not deaf but she can't hear". Not sure what it will mean yet. It's likely that their ear canals are just too small (Li's are especially teeny tiny, even for her size.), making it harder to hear.
Both of our girls have been cleared by cardiac with no issues and get regular thyroid check ups, but so far so good!
Again, such a wide range of abilities. Overall, it takes the girls longer to learn some things or they need to learn it differently but... they learn it. Let me tell you something, these girls are smart as whips! Both of them learn best by what they see modeled.
Lincoln started helping fold laundry her first week home... just copying what she saw us doing. She "chases" people down the hallway to give them things that belong to them, puts the kids' backpacks and shoes on herself, and reclines on the couch while pointing the remote at the TV haha
We didn't teach Anna Gray to flush a toilet with her foot, she did what we did. There's a bedtime song I sing to her when I tuck her in that has her name in. She's been singing it with me for a few years, but now she sings my name instead, and then sings it with Lincoln's name next. So smart!
Learning by watching others is why inclusion matters so much. In addition to positive peer relationships, if AG is in a class with children who sit at their desks to do their work, following directions, sit on the rug for carpet time... then those are the behaviors she will also do. She wants to be like her friends! TYPICAL STUDENTS BENEFIT TOO. They learn to celebrate differences, not hide them away in a separate classroom, ultimately preparing them for a diverse society outside of school. Which is only scratching the surface of research backing up why this is best for all, really.....
Basically, Down syndrome has some stuff... but in a lot of ways, our little girls are like lots of other little girls. Gray loves singing and dancing, Disney movies, football, PIZZA AND ICE CREAM HOLY COW, playing dress up, and going to the park. Lincoln loves to pretend- she pats her babies on the back after feeding them bottles and cooks plastic food in her play kitchen. She likes snuggling and making people laugh and patty-cake a whole whole lot.
Some of my favorite things about Anna Gray:
She's in a fake-selfie phase. She takes fake selfies daily.
She constantly gets caught stealing veggies before dinner.
Her dive. She worked on it all summer which was terrifying and hilarious. This child LOVES to swim!
She wears her rainboots with everything she can. Everything. You may have noticed them several times throughout this post.
She's fiercly independent. It creates some... challenges... at six, but I have no doubt that she will thrive in the future likely living on her own or possibly running the world.
I did not put her on the counter or ask her to wash the breakfast dishes ;)
Some of my favorite things about Lincoln:
Her "I want a kiss" face when she's already in bed.
Her love of drinking (anything) through a straw.
Her version of peek-a-boo is the cutest thing ever.
She plays piano all day every day.
And she always breaks it down to 90's hip hop.
Honestly, it baffles me how anyone could look at my girls (or any child/person) as see them as LESS. While there is definitely a more extreme rejection in other parts of the globe, it's also happened right in my own living room.
I'll keep sharing bc I believe education can be so valuable, but... if you've chosen not to see the beauty in what God created, I promise YOU ARE MISSING OUT.
I look at them and see that they are
BEAUTIFUL
ABLE
STRONG
SILLY
JOYFUL
KIND... EXCEPT SOMETIMES NOT BECAUSE THAT'S KIDS
FUNNY
FEARFULLY & WONDERFULLY MADE.
I wouldn't change a single thing about them, not even one little chromosome.
I'll keep sharing bc I believe education can be so valuable, but... if you've chosen not to see the beauty in what God created, I promise YOU ARE MISSING OUT.
I look at them and see that they are
BEAUTIFUL
ABLE
STRONG
SILLY
JOYFUL
KIND... EXCEPT SOMETIMES NOT BECAUSE THAT'S KIDS
FUNNY
FEARFULLY & WONDERFULLY MADE.
I wouldn't change a single thing about them, not even one little chromosome.
