Eyes Like Sapphires

Life with Down Syndrome

Page 2 of 6

Down Syndrome Awareness Month: Day 5

This is not meant to be political, but it feels so timely, and so important, and frankly, so scary… According to NPR, unpublished data from the US Justice Department pertaining to sex crimes revealed that people with intellectual disabilities are 7 times more likely to be the victims of sexual assault. That data shows that they are more likely to be assaulted by someone they know and during daytime hours.

“Predators target people with intellectual disabilities because they know they are easily manipulated and will have difficulty testifying later. These crimes go mostly unrecognized, unprosecuted and unpunished…Police and prosecutors are often reluctant to take these cases because they are difficult to win in court.”

It is frightening to think that the very situations that we hope will be opportunities for Frankie to grow and learn the most – ones where she is not in my direct supervision all day long – might be the ones that put her at risk throughout her life. How do we strike that balance between letting her expand her horizons and keeping her safe?

I don’t know the answer to that. But my only tool right now is education – teaching her what to watch out for and what to say or do in certain situations and recruiting trusted allies who have her best interests at heart that can look out for her when I can’t. I hope with all my heart that it’s enough. In the meantime, it is my biggest wish that you are all willing to be those allies, not only for Frankie, but for all of your friends and acquaintances with disabilities, too.

Down Syndrome Awareness Month: Day 4

This is the bulletin board hanging in the hallway outside of Frankie’s classroom. Her drawing is in the top row, second from the right.
I can’t say I wasn’t disappointed when I saw her work compared to the others. Almost all of the other kids managed some semblance of a face. Hers is unidentifiable scribble.

I know you will all say “My kid couldn’t even hold a crayon at 3yo” etc and I will love you for it 😊 But moments like these are hard because her delays are so obvious and they bring on a realization that we’re always going to be dealing with this. Truthfully, it makes me tired to think of all the work we will need to do just to keep her bringing up the rear. If she’s behind on drawing a face what will it be like with reading, writing or math in just a few years’ time?

But I’ve always been a sucker for the underdog. I know her skills will ebb and flow. And when she makes those leaps I know we will cheer like crazy! In the meantime, we celebrate the ways in which she already excels – this morning when I dropped her off at school a teacher who wasn’t hers greeted her with a genuine smile. “She already owns the place. We all just love her.” Her ability to capture hearts far outweighs her drawing skills at the moment and that’s more than ok.

Down Syndrome Awareness Month: Day 3

“She Downs?…Well, seems like she can get on almost like normal.” This from a dad at the soccer field a couple of weeks ago. I could only laugh nervously and say “Yes, she has Down syndrome ” and “Yeah she does well.” Imagine for a second that someone expressed surprise – to your face – that your child was almost normal…! Part of me is just proud of myself that I didn’t totally lose my shit on him. But I’m also disappointed that I was so taken aback that I missed an opportunity to properly advocate for my girl.

If I had my wits about me this is what I would’ve told him: “She is not Downs or even Down syndrome. She has Down syndrome. She is so much more than just her diagnosis. And she is not normal she is EXTRAORDINARY and I bet she blows your definition of normal right out of the water.” But I’m not too worried I didn’t say that because Frankie will show him soon enough ❤

Down Syndrome Awareness Month: Day 2

The other day Tristan and I were talking about Frankie having a family of her own. I told him she might not. But he was insisting, in the way that he does, that she could. Knowing that he was not understanding the bigger picture, I blurted out “Tristan, sometimes people with Down syndrome are not able to live on their own and take care of themselves.” To which he replied: “Mom, I am more than willing to live with this little girl when we grow up.” Cue the tears…!

Of course this has crossed my mind. Who will take care of Frankie when Seb or I are not able to? I have thought for a long time that that is not something I would want to ask Tristan to do. I want him to be able to live a life that is full and meaningful to him as much as I want that for her. I know we must do our best to provide and plan for her adulthood so she is not a burden to him. I would hate to think that his choices in life – whether they be career or family oriented – would be dictated by having to care for a sibling. Shamefully, I worry that potential partners might be scared off by a man who comes as a package deal with his disabled sister.

I hate to admit that, but that’s the reality. My silver lining? He is becoming such an exemplary human being just by loving her, that I know his path through life will include her and I’m positive that the person he chooses to give his heart  to will be the type of person who welcomes her with open arms, too.

World Down Syndrome Day 2018: More Alike Than Different

Just a little something we whipped up for World Down Syndrome Day! Love these kiddos!

How Do I Love Her – Video Version

A mom friend and fellow blogger flagged up this website to me that allows you to turn your blog posts into videos. I gave it a try with this post that I had written for World Down Syndrome Day last year and really loved the way it came out. It got great response on my Facebook page and I’ve been asked to post it here. So here it is….! How Do I Love Her? Just like you love your kids

#morealikethandifferent

Down Syndrome Awareness Month: Day 30

So I know I’ve gone on about ballet class quite a bit, but bear with me. The term is coming to an end and I have to make the decision about whether or not we’re going to re-enlist in the trenches. I’ve thought a lot about what Frankie’s getting out of the class, does she enjoy it, what it means for her in the grand scheme of things…and then I realized maybe the person who is learning the most in ballet class is ME… As I’ve been watching her each Saturday morning, I’ve come to realize that she’s a very visual learner. When the teacher demonstrates something, Frankie is ace at copying and following along. When she’s TOLD to do something, she needs more time to hear it, process it and perform it (see video). She is very engaged when she is contained and the movement is small and entrenched in song and direction. When the children are encouraged to move about the room, she loses interest and strays. I’ve been concerned about how this looks to other parents, wondering if they’re attributing it to her disability and I thought maybe she wasn’t really ready for such a class. But then it occurred to me – if I don’t keep giving her opportunities to understand, she will never learn. Like any child, exposure, routine and repetition are great tools for her.

And finally, I’ve realized that inclusion means more than just having her in the room at an activity geared toward typical children. Frankly, she’s not just sitting there waiting for the class to include her. It’s more about drawing her in and engaging her.

Though we have attended classes before, this is really the first chance I’ve had to sit back and observe her in a classroom setting. I’m shocked at how much I’ve taken away from the class and excited to apply all of this to what we do at home.

Needless to say, we are in for another 10 weeks. Take all of my money, Rose Academy of Ballet!

Down Syndrome Awareness Month: Day 29

I’ve said before that I do not look too far into the future where Frankie is concerned. Try not to might be a more accurate way to put it. I don’t usually go hunting for the stories of adults with Down syndrome doing amazing things, but sometimes they just fall into my lap (thank you social media!) and I feel compelled to share and shout about them.

The original video that I saw was a few years old, but it showed a well spoken young woman named Bryann Burgess. She was then a student at University of South Carolina’s LIFE program and a certified Kindermusik teacher. I was so impressed, I googled some more and found she has since graduated from USC and is a wonderful piano and guitar player. She is just all around awesome.

Do I think Frankie is going to be a musician? Probably not…we’re not particularly musical in this house… But I kind of feel like, with a typical child, you start off with a whole realm of possibilities of what your kid can grow up to be and you cross things off as you go along and your child’s talents and interests develop. With a child with Down syndrome, I’ve found it to be the opposite. Many of us parents didn’t know all that much when we first got that diagnosis, so we started off from a place where stereotypes dictate what we believe; stereotypes which include a lot of can’ts and nevers.

Now, as I come across young adults soaring at all sorts of careers, I kind of collect their stories and file them away as “possible” and “maybe.” As she grows and as we learn, that file is expanding all the time! The future is bright!

Down Syndrome Awareness Month: Day 28

In the weeks following Frankie’s birth I had a series of encounters that gave me such peace and made me realize everything was going to be alright.

One such encounter was with the woman who evaluated Frankie for Early Intervention services. We had an instant connection as she told me, with tears in her eyes, about her own baby that had died from a broken neck during child birth. A baby that also had Down syndrome. She spent much more than her allotted time with us and when she left, I couldn’t help but hug her when she assured me that Frankie would be amazing.

A few weeks later, Frankie rolled over all on her own at 1 month old. I excitedly texted Sylvia to let her know her prediction was already coming true! She wrote back and sent me a picture of a teenage girl with Down syndrome she had been mentoring. She had just passed her driver’s test. “The sky’s the limit!” she wrote. And for the first time since Frankie was born I believed it.

I wish she could see our girl now.

Down Syndrome Awareness Month: Day 27

About half of all children with Down syndrome are born with a congenital heart defect. Most common are holes between the chambers which can range from mild to severe. Symptoms include heart failure, difficulty breathing and failure to thrive in the newborn period.

Heart surgery is often recommended before the age of 5-6 months in order to prevent lung damage, though some babies have a difficult time putting on enough weight for the surgery because of the CHD. By all accounts it is the scariest experience in the world to hand your baby over for open heart surgery, especially when their heart is about the size of a walnut, but thankfully the procedure success rates hover around 99%.

Frankie was born with a very tiny Atrioventricular Septal Defect – a small hole between the top two chambers of her heart. According to her cardiologist most everyone has this in utero but it usually closes by the time a baby is born. Sometimes it doesn’t, even in the typical population. Frankie’s ASD was seen at her first echocardiogram at 3 weeks old and we’ve been keeping an eye on it ever since. This morning’s exam showed it still hasn’t closed but the doctor said it’s so tiny it doesn’t require any intervention. He also said that if we’re curious we could come back to have it checked out in a year or two…

Um, no thanks! Because holding your toddler down for an echo is about as fun as wrestling an alligator! But it’s worth it because we are now cleared from cardio!!!

Page 2 of 6

Powered by WordPress & Theme by Anders Norén