And ignorant I was when it came to Down Syndrome. Other than occasionally seeing children or adults in public here and there, I have never really had much exposure to it. In fact, I often deliberately avoided exposure. Even while going to school to acquire my elementary teacher's license, I largely steered clear of any special education classes. I was, admittedly, as ignorant as they come, and often by choice.
But then came our baby girl with her extra chromosome, and my fearful reaction was directly related to my ignorance. I had no idea what we were being handed. None.
We saw what the world largely sees: the child who would be completely dependent upon us for life; the child who others would shy away from; the child with the diagnosis that doctors discovered "too late to do something about;" the child who would have trouble learning; and we'd forever be labeled as the family with the "Down's kid."
Now here we are, at the end of Down Syndrome Awareness month and the end of Annie's first year of life (so hard to believe!!!), and although we've only just begun, I want to share some of the things we've learned along the way. I want you to be aware of what you're missing when you don't know someone like Annie.
Down Syndrome is the most common chromosomal defect, affecting some 400,000 people. Nearly 6,000 people are born with DS each year (nearly 1 in 700 births). It is a condition in which a person has an extra chromosome. While a typical person has 46 chromosomes, people with Down Syndrome have an extra copy of chromosome 21. It is also referred to as Trisomy ("extra copy") 21. This extra chromosome changes how the baby’s body and brain develop, which causes both mental and physical challenges that range in degree. (National Down Syndrome Society (NDSS))
People with Down Syndrome are at greater risk for certain health conditions than the general population, including heart defects (Annie's is an AVSD defect, successfully repaired 7 months ago!); blood diseases (especially leukemia); Alzheimers; Autism, ear, nose and throat issues; gastrointestinal tract disorders, and others. Thanks be to God her heart looks good, and she has had no other health concerns thusfar.
Some of the physical features common with Down Syndrome are:
* An overall smaller stature and shorter limbs. Finding clothes that fit right is definitely going to be a challenge (join the club, Annie girl! Short like your Mama!) She's still in 3-6 month clothes (almost ready to move to 9 month though! yay!), and sometimes the sleeves are still too long!
*A flattened face, especially the bridge of the nose. Sometimes you can really notice this on Annie, and other times not so much. It was her lack of nasal bone/bridge that was one of the red flags of her Down Syndrome during my ultrasounds. I for one LOVE her little button nose!!
*Almond-shaped eyes that slant up, and tiny white spots on the iris (the colored part of the eye). Her eyes are among my favorite features. (well, to be honest, I love the whole package!) They literally sparkle sometimes, and her penetrating looks communicate volumes! See those dots?? They're like diamonds! The girls got BLING!
* A short neck
* Small ears. I've never see ears like hers, and a photo doesn't do them justice. You have to see them in person. I'm not sure her little lobes could be pierced, even if we wanted to! They are so teeny. (but soooooo darn cute!)
* A tongue that tends to stick out of the mouth. Every once in a while, I will catch Annie with her tongue out (their tongues tend to be larger), but I have to say, I'm not concerned about it yet. We've been told we are lucky with how well she eats. She has always been good at "chewing" her food, doesn't gag, and doesn't have any texture aversions (other common issues associated with the larger tongue). It's often the tongue that impacts poor speech development as well as the weak muscle tone around the face. Only time will tell....but for now, I think her tongue is a,wfully cute. (Think I like this child?? This coming from the woman who was AFRAID of Down Syndrome??)
* Small feet and hands, a single line across the palm of the hand (palmar crease), and small pinky fingers that sometimes curve toward the thumb (can't see it in the pic, but it's there!) The little feet part is rather ironic in this family, since a signature sign of our children are their large feet (their dad wears a 13!) Our 11 year old son wears a men's 8 already, and showing no signs of slowing. Annie? Still wears infant size 2. Teeny tiny feet. Her second toe in her left foot has a little kink in it too. If she ever keeps still long enough, I'll get a picture of it! And I love her short little fingers. Here is her little hand (blurry, again because it's always in motion), sporting her Down Syndrome Awareness bracelet! All of her fingers are the same length. Each of her perfect imperfections are simply adorable.
* Poor muscle tone or loose joints. The girl is like Gumby! This is her favorite sleeping position. I tell you, she's like a potato bug--folds right in half when she's had enough. But this is not necessarily a great feature, or one that means she'll be the next Mary Lou Retton (wait...Do people know who she is anymore, or am I getting old?)
Hypotonia (the fancy term for low tone) causes delays in gross motor skills (Annie started sitting at nine months and has only started crawling in the last week or so), fine motor skills (grasping small objects), a decrease in strength (Annie has always had a weaker upper body, which is why crawling has been difficult. She'd get up on her knees, her arms would give out, and she'd face plant.), lower endurance, and speech difficulties (again, tbd...but she already sees a speech therapist, and has a nifty vibrating contraption that we use daily to stimulate the muscles around her mouth. She says "ba-ba" "ma-ma" and makes a Chewbaka-like noise when she's really excited)!) She also continues to sees her PT once a week.
Check out these awesome pants she gets to wear! They are tight fitting and sewn together to the knees, to help keep her hips in line. She's not a fan, but they've definitely helped! I tell her they're like skinny jeans, only shorts! ;)
.....and perhaps one of the most interesting (and surprising) developmental delays that we've learned is the eruption (or lack thereof) of teeth! It's not unheard of for these kiddos to be 2 before they get their first tooth (Annie doesn't have any yet, and none on the horizon), and they often come in random order. I read about one little girl whose first tooth was a molar! Wow-za! That takes teething pain to a whole new level!! But for now, I love this little gummy smile!!!
You see, kiddos with DS (and they are kiddos with DS, not DS kiddos! DS does NOT define Annie) will develop like any other typical kid, just at a little slower pace. They are more alike than different. And with 6 children and a pretty fast-paced life, I've rather enjoyed slowing down and keeping my baby a baby just a little while longer.....and celebrating every new milestone along the way.
Annie girl, you are my life's greatest teacher. I had no idea what I was missing.......
Happy Fall, Happy Halloween, and Happy Down Syndrome Awareness Month from our family to yours!
