Eyes Like Sapphires

Down Syndrome without health complications (so far)

Author: Farah (Page 1 of 2)

Empowering My Daughter with Down Syndrome

When I was a little girl, I had a poster on my closet door. It had a picture of Smurfette, briefcase in hand, headed into a door marked “President” with the tagline “Girls Can Do Anything.”

I’m not sure I’d call myself a feminist, but I’ve always believed that – girls can do anything. I so admire friends who are aligning their careers with their beliefs to turn empowering women into their way of life. Even before Frankie was born, I had made it a mission to teach my son that the girls he went to school with or played sports with were just as capable as him.

I’ve always loved reading those internet shares about how to raise strong girls and I daydreamed about teaching a daughter how to be independent, how to be self-reliant, how to get it done. I imagined the pride both of us would feel as she made her way through the world, a truly free young woman. Girl Power. Girls Rule. Girls Can Do Anything…

So flash forward to the present. Like so many other moms, when I first got that diagnosis, I was plunged into a world of can’ts and nevers and negatives. But, as Frankie has grown, it’s becoming apparent that this little one has an iron will. I don’t think a desire for independence is going to be lacking. Which brings me to my point…

How do you encourage and preserve that independence in a person who will most likely need a significant amount of help in their every day life? How do you empower a girl, tell her she can do anything, when there are obvious limitations?

I want to be clear – I don’t want this to be a farce. I don’t want to lie to her. I don’t want to tell her she can do everything and then do it all for her and make it out to be her accomplishment. But I don’t want to crush her spirit either. I don’t want to limit her. And I definitely don’t want to tell her she can’t because only she knows if she can.

So what’s a mom to do?

Well, Down syndrome has a way of making you re-evaluate everything – decisions, plans, beliefs, parenting and even very definitions. I’m not even going to pretend I know the answers to this one but my gut is telling me maybe I’ve got the meaning of EMPOWERING all wrong…

I don’t see empowering as telling her she can do everything and anything all by herself anymore. Now I realize that in order to empower her and foster her independence, I need to help her discover her strengths and to develop them. I need to teach her to recognize what she does well without dwelling on what she can’t do. And perhaps most importantly, I need her to know that being truly independent means that you can recognize when you need help and you can ask for it.

It’s not enough to just tell her she’s strong and smart and powerful and send her on her way. She has to be shown how she’s strong or why she’s smart or when she’s powerful. I don’t think it’s about telling her she can do anything if she puts her mind to it. It’s about helping her decide what exactly she wants to put her mind to. She needs to know that making decisions with input from those who truly love you and have your best interests at heart is not forfeiting independence.

Interestingly, I wrote a similar blog post when Tristan was about Frankie’s age. It was full of all of my hopes and dreams for him and details about the man I hoped he would become and the successes that I hoped he would achieve. The differences in the posts show how I’ve grown as a mother thanks to my baby girl. The sentiment is still the same, but the specifics couldn’t be any more different. It’s not because I don’t want the same things for her or because I don’t think she’s as capable as him. On the contrary, I’ve realized that now more than ever that it’s just not about me and what I want for her or what I define as success or what makes me happy. It’s about providing her with the tools to discover her own definitions of success. And I know she will. This girl can do anything!

 

How do I love her…

Sometimes when we’re out walking I see people look at Frankie “in that way.” They look down at her, up to my face and back down to her. Their smiles are tight. Without teeth. Patronizing and full of pity.

I wonder what they’re thinking? Why do they feel so bad for us?

Because she’s not very cute? Um, that’s a negative…

Because she’s not very smart? They haven’t seen her stack cups, do a puzzle or fake cry to get her way.

Because she’s different from other children? Because we might love her a little less? Well…

You know how there’s that spot where their jaw meets their neck, right under the ear, that you kiss over and over just to hear them giggle?

We do that, too.

You know how at the end of the day, you sit and share with your spouse all of the cute, smart, funny things your child did today?

We do that, too.

You know when your kid says or does something that you really should reprimand them for but you have to hide your smirk and turn away so you don’t burst into laughter?

We do that, too.

You know when you watch your child being showered with love by their grandparents, aunts, uncles, cousins, and friends and you feel like your heart might burst?

We do that, too.

You know when you lay awake in the middle of the night stressing about your child’s future – school, doctors appointments, job opportunities, will they ever find love?

We do that, too.

You know how you cheer like crazy when your child achieves and kiss away their tears when they fall?

We do that, too.

You know when you peek in on your child when they’re asleep and marvel at the sheer beauty that you and your partner created?

We do that, too.

You know how you love your child so deep within your being that the feeling is actually physical. Palpable. Tangible.

We do too.

This is what we mean when we say “More alike than different”…

Happy World Down Syndrome Day

 

She’s on her way!

So this has been happening! So proud of our girl. Her strength and determination are always surprising me. Never underestimate!

 

 

Dear Internet

13007090_10101105244433255_4263170959660688263_nDear Internet:

A couple of months ago the website The Mighty published one of my posts and it went on to be shared on social media over 14,000 times! I was super excited and more than a little curious as to where all of these shares were coming from. So I took to Google searching for that picture of my gorgeous girl in the white dress featured in the post.

In hindsight, I should’ve known better. Of course you had lovely photos of kids with beautiful brushfields and links to blogs championing the successes of people with Down syndrome. But then there were the memes – pages after pages of images of people with DS plastered with hurtful phrases.

“My mom calls me special”

“I can count to potato”

“Mom said I have Get Down syndrome”

Those are the tame ones. My stomach flooded with fear, rage and sadness. The kind of sadness that stays with you even after you’ve moved onto another thought and you’re forced to remind yourself why you feel so bad. I also felt ashamed – had I ever found anything like that funny before?

13695897_10154305299191354_448363181_nInternet, since having a child with Down syndrome I’ve known you to be a source of information, education, reassurance and comraderie. I guess I always knew the opposite was out there, but, Internet, why do you have to be so demeaning and hurtful? Will people who are innocently searching your pages see the Down syndrome I know or the one portrayed by these memes? I guess it’s naive to think that we might eradicate them all, but I wish people would see our side of it.

I wish they would see Baby Emily, a heart warrior showing her amazing strength as she fights to recover from her multiple surgeries. Or sweet Josee, 3 years old and full of confidence, working the camera as she reads and counts for her Facebook audience of over 20,000. Or Sam and Mattie, best friends who, with the help of a Kickstarter campaign, just made a Spring Break zombie movie that is professional and gloriously mainstream and just as vulgar and rude as you would expect from teenage boys!

I wish they would see my little Frankie. See her steal grandma’s phone and knowingly run her pointer finger over the screen. Watch her determination as she fits pegs into little holes during OT. Watch her shove her unwanted dinner underneath her highchair’s tray as if she’s fooling us. Witness her triumphant first steps.

I know people sometimes question why a lot of us parents of children with Down syndrome choose to share so much of our little one’s lives. Is it safe? they wonder. To them, I say, It’s necessary.

It’s essential to show the adorable photos, the accomplishments and the milestones. The public needs to see our kids reading and playing, attending school, making friends and generally being kids. It needs to know that the person in that photo that someone stole to make a hateful meme has a mother and a father, siblings, grandparents, friends and often an entire community that love them and that stand behind them.

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No one can hope to control you, Internet. But we can continue to feed you the wonderful stories and positive images that make up our lives in the spirit of hope and education. So that next time one of your users stumbles across a derogatory photo, they will simply shake their head and move along, knowing that people with Down syndrome are not to be laughed at.

Sincerely,

Francesca’s Mom

 

16 Month Progress Report

My intention for starting this blog was to give those parents whose children with Down syndrome have no health concerns – ie congenital heart defects, gastrointestinal issues, thyroid problems, etc – an indication of what’s to come. I remember hitting Google in the hours after Frankie was born, frantically searching phrases like “Down syndrome, healthy” or “Down syndrome, no health problems” and turning up nothing.  I’m not sure what exactly I was looking for, but my guess is some sort of reassurance that everything was going to be okay if I just found that one case that was exactly like ours.

The reality is, it doesn’t matter. Your baby will develop at their own pace and you will celebrate every milestone as and when it comes. And even if you do find that one case at birth, that’s no guarantee that your child will follow the same path. We know little heart warriors who went on to walk at 15 months and others with no health concerns who have taken longer. One of Down syndrome’s lessons is patience – it’s ALL in their own time.

That said, I know the power and comfort of reassurance. And if I can offer that to a parent who needs it while bragging on my girl…well, it’s a win-win situation, isn’t it? So, here is a little run down of where we are at 16 months.

I should say I have been feeling a little down lately as I watch the typical babies we’re friends with surpass Frankie in the milestones department. Walking and talking are the most obvious. But it’s important to focus on everything your baby CAN do. And this little one doesn’t have to walk to light up a room!

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So we are pulling up to stand on EVERYTHING and cruising like a star. But balance is still an issue and she can’t manage standing on her own for more than a few seconds. Her attempts to walk unassisted consist of lurching forward with feet firmly planted. Not so safe. She can walk with her walker or baby stroller and is even learning to turn it around when she bashes into the furniture and is at an impasse.

Previously, Frankie was a butt scooter and was pretty efficient. The physical therapist was satisfied with that, but surprisingly, the occupational therapist was adamant she learned how to crawl on all fours as it’s good for bearing weight on and therefore strengthening her hands, and essential for right brain/left brain coordination. In the past two months she has become a complete crawling convert and has gotten pretty darn quick, too.

She can climb up the stairs on her own – especially when she knows her big brother is in his room up there. Seriously, the FOMO is strong in this one! We’re working on getting down them by either sliding on her behind or turning onto her stomach. TIP: Taking the couch seat cushions off and letting her climb up and down is good practice and according to our PT a great way to work on transferring skills from one apparatus to another.

Fine motor skills are coming along nicely, as evidenced by this video that is included here purely because it melts my heart! She used to fling the pieces to various toys and is now doing that a lot less. I have figured out that she does still do it when she’s working with a toy that she hasn’t yet mastered. She’s fine with the rings, and with the ball drop and a few others, but she still chucks the puzzle pieces because it’s harder for her to do. Interesting…!

I feel we have the most work to do with her speech and communication skills. We sometimes get what look like signs – specifically “give me” and “eat” but she mostly just grunts and/or manipulates our hands to indicate what she wants. We’re not getting any discernible words and though she is pretty sharp, there’s not much indication she understands. I’m told it’s early for speech, I just have to remind myself to be patient.

I could go on and on about her, but suffice it to say that she is a toddler in every sense of the word and is keeping us on our toes! She is into everything and, out of necessity, I don’t underestimate her for a second anymore!

 

 

My Most Perfect Moment: Happy Mother’s Day!

I was going to give the sappy posts a rest for a while, but suddenly, it’s Mother’s Day and seems sort of required…

So there’s this moment that just so happens to be the best one of my entire life. And I’m so lucky to have a picture of it. This is it. The exact moment my babies met for the first time.

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Though I had dreamt of it for so long, I was nervous and anxious. We have a big gap between our two. It wasn’t what we wanted, it wasn’t what we planned, but if we’ve learned nothing else we know that we have little, if any, control. We had wanted Frankie with all of our hearts and souls, but during my pregnancy I kept thinking What 5.5 year old wants a baby sibling? The consolation was we were *sure* it was a boy!

Oops.

I called my parents in the morning to tell Tristan the news. “Mommy had the baby! You have a little sister.” A sister? He seemed unfazed, but he’s not good on the phone. He gets that from his dad.

So with the doom and gloom of a Down syndrome diagnosis already hanging thick in the air – by this time the hospital pediatrician had visited us and had told us it was suspected – I was now anxiously waiting for my parents to bring Tristan up to the hospital to meet his baby sister. A moment that I was sure would bring indifference, uncertainty and at worst, disappointment.

But then this happened. He came over to my bed side, I held her out to him and he – unprompted – bent over and kissed her forehead so sweetly and so tenderly. My heart nearly burst.

In just one gesture my little boy showed me the very definition of love and acceptance. He welcomed her into our little family without the slightest hesitation, like he had known her his entire life. He knew in an instant what we were struggling with since she arrived early that morning – she belonged with us.

You know I’d be lying if I said that this meeting of these two beautiful souls put ALL of my fears about Francesca’s future to rest. But, at that moment, I was sure she had a brother, a friend and a protector like no other for all of her life. And I felt a sense of peace enter my heart.

In case I haven’t said it my children are pretty amazing. But yours are, too.

Happy Mother’s Day!

 

 

Why Are We So Afraid of Down Syndrome?

Why are we so afraid of Down syndrome?

It keeps me up at night. This question. I lie there and try to put my finger on it. I try to remember what it was like before Frankie was “just Frankie.” When “My baby has Down syndrome” was still my first thought when I opened my eyes every morning.

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Photo by Wendy Wang

I look at Frankie’s face, her body, her movement, her features. I scrutinize her.  Can people tell? I think. Are they scared of her? Why would they be? Is it her nose? Cute as a button. Her eyes? So gorgeous. The way she scoots? Adorable and innovative. The way she pulls to stand? So strong. The way she smiles hugely as she manages to wiggle away from her therapist? So smart and so cheeky!  I look at all these features that people associate with Down syndrome and think Nothing scary here.

And yet…

“I can’t do this,” I said when we got her diagnosis a week after she was born.
“You can. We will,” my mother replied.
“I don’t want to do this.”
“You have to do this,” she said.

I hope you don’t think I’m the terrible person I sounded like. I was shocked. I was uneducated. I was scared.

Now I see a pretty, determined little girl making her way from baby towards toddler. Maybe a little slower than others, but fiercely nonetheless. But then I saw limits, dead ends, unteachability. Exclusion. Slowness. I saw only failure. I was ignorant and that made me afraid.

The truth is, I shudder to think what I might’ve done if I had had a prenatal diagnosis and therefore had known Frankie was going to be born with Down syndrome. If I was presented with tons of “she will nevers” and had a grim future laid out for us by some doctor who couldn’t possibly know HER. Some figures estimate that 90% of pre-natal diagnoses end in termination. Yes, I was scared when she was born, but she began educating me the moment I held her. I was lucky I had the most beautiful distraction from my thoughts of utter doom.

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But it’s easy to love a little baby, right? What about teenagers and adults with Down syndrome? Are they scarier? In the beginning, as I was still processing things, I remember saying that I was sure Frankie would be an adorable child, I was more worried about what she would be like as an adult.

We are a society always striving for bigger, faster, stronger, smarter and when you’re faced with a diagnosis where you think none of that is ever going to be achievable, you start to panic. What if my child needs help – possibly a lot of help – to walk, to talk, in school, at work, in life? What am I supposed to do? Will we ever be happy again? What will people think?

I think I was mostly afraid of that stereotype of an adult with Down syndrome, bagging groceries with garbled speech and a big smile. Let’s forget for a minute that that is not necessarily a reality for many, many people with DS. Let’s think instead – what exactly is wrong with that? What is wrong with a person who is doing an honest job and doing it well, doing their best with what they’ve got and doing it with a smile? If that person is happy and if that person is loved, what does it matter what anyone else thinks?

I think a lot about how we got this way. How we came to a place where we’re afraid of people who are not at the top of their class, who are not prom queen, who don’t go on to earn a six figure salary with a higher degree from a prestigious university. People who live ordinary lives and do ordinary jobs. The reality is that very few people actually go on to do those grand things, but there’s something about knowing from the get-go that they’re not even possible that makes it all a game changer.

But I’ll be completely honest – if I had read this when we first got Frankie’s diagnosis, I wouldn’t have been comforted. I was still unable to accept that my child might be less than the best. Less than successful. Or what I had defined as successful at that point. I was very much “that’s fine for you, but that’s not us.” I was scared that Frankie wouldn’t be smart or pretty or regarded in any way. That her life would be lived under the radar basically unrecognized by anyone but her immediate family.

If you’re that mom right now, let me assure that your baby’s future is as bright as anyone else’s. That he or she has options. There are people with Down syndrome blazing trails! Madeline Stuart: Beautiful Model! Tim Harris: Successful Businessman! Jamie Brewer: Talented Actress! Megan Bomgaars: Savvy Entrepreneur! Chris Burke: Respected Advocate! Karen Gaffney: Intelligent speaker, inspiring athlete and all around star! People who are very much ON the radar!

There are protocols to help your family with everything from thyroid function to congenital heart defects to cognitive ability should you choose them. There is education from Early Intervention through to college programs for your child. We are all learning as a community every day and it’s a great time to be a person with Down syndrome. Take it one day at a time, and let your child blossom. I promise they will.

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In the meantime, be comforted by what you already know: Our babies are not scary. They are not broken, or less than, or substandard. They can do nothing with anyone’s pity or prejudice or patronizing or fear. But they can do everything with our encouragement, our support and our love.

The Downright Blessed series

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We’re really honored to be featured on another rockin’ mom’s webpage! Stefanie of Lexie Loo, Lily, Liam & Dylan Too contacted me shortly after I started blogging and asked me if I would contribute to her Downright Blessed column, which features a story by a mother with a child with Down syndrome each month.  Of course I said yes! Please have a look at our post and have a poke around her excellent site!

 

Special Needs Moms Unite!

We’ve been to the doctor three times in the past two weeks (once for Tristan, twice for Frankie). It’s become a bit routine. Get there, check in, chat with receptionist, wait to be seen, see doctor, come out, pack up, check out.  This time it was pink eye for Miss F and as we were packing up and getting ready to go, another mom in the waiting room was smiling and engaging with her.  She gushed over her and asked how old she was. I told her and we got to talking.

Her baby was 6 months. She was born prematurely, she said. She has hearing loss. Her voice cracked. Oh. Maybe she expected me to say I was sorry, I don’t know. Did you know? she asked me. About the Down syndrome? I asked. Um, well, yes, she said shyly.

It’s the fourth time someone has mentioned it without me first saying so. Usually my heart skips a beat. But this time…it didn’t. I felt a sort of kindred spirit. And that this mom needed me. I told her our story. Then it was her turn.

Her daughter didn’t have Down syndrome, but she confessed to me that they thought she might during her pregnancy. She said that she has hearing aids but needs a cochlear implant. She took it very hard and it’s taken her a long time to be okay about it. You want your baby to be perfect, you know, she said.  I know, I nodded. But – she smiled hugely – she’s started to read lips, she moves her mouth when we talk to her! Then she looked shy again. Sometimes I swear she can hear me.

You’re her Mommy, I said. She knows what you’re saying. And she’s going to be awesome.

She smiled. Your’s too, she said.

The receptionist came back to check me and Frankie out and we were on our way. The mom and I said goodbye and I know I probably won’t see her again.

But I was left feeling so light, so happy and so…fortified. I hope it was the same for her. Because I think what we both confirmed to one another was that we all want our babies to be “perfect” – sometimes it just takes us a little bit longer to define perfect.

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World Down Syndrome Day – Decoding Cliches

If you’ve recently become immersed in the world of Down syndrome, you will probably have come across what seems like a few cliches.  There are phrases and sayings that parents and organizations that advocate for people with Down syndrome say a lot, but I think to the uninitiated it is sometimes difficult to put real meaning to them.  I might not even be qualified to translate them for you, but in the past year we have learned a lot about what they mean – we have the best teacher! So what follows is my attempt at decoding the “cliches” for you so you can understand what they really mean to those of us who love someone with DS.

People with Down Syndrome are NOT always happy!

This one bothers Frankie’s grandma to no end, so we’ll start here. We get it A LOT – “She’s so sweet” or “She’s always so happy.” Let me tell you something, Frankie is NOT always happy. This girl is FIERCE! She knows exactly what she wants and if you make her do something she doesn’t want to, she will unleash the beast! She’s only 1, but we’ve seen her happy, angry, upset, grumpy, silly, coy, shy, crazy and manipulative all in equal measure. But I guess what is underlying here is whether or not people with DS “know enough” to have any kind of reaction other than happy. That this extra chromosome somehow erases the whole spectrum of emotions that make us human. People with Down syndrome are just as complex as everyone else and if you have trouble believing that, please take a look at Karen Gaffney’s TED Talk. She is an amazing speaker and this particular speech is full of passion, humor and emotion, not to mention intelligence.

More Alike Than Different

People with Down syndrome are more like their typically developing peers than they are different. Frankie and I are part of a very large mommy and baby group and there is very little that sets her apart from the other one year olds in the group. When we moms natter on about sleep issues and have questions about starting solids, dirty diapers and the finer points of Super Simple Songs (Frankie’s favorite!), I don’t ever have to bow out of the conversation. We may face some challenges that others may not, but, you know what? They will face some that we don’t have to as well. That’s not Down syndrome, that’s life! And as Francesca grows, she will have hopes and dreams and fears the same as you and me. She will have friends and struggles with school work, a yearning to be independent, she will find love. She will live a life. Her life. And it holds as much value as anyone else’s does. And she’s lucky to start it off with these guys, who will hopefully not blink an eye when they meet a person with DS in the future, because they already know they’re more alike than different.

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On a related note, we often say that though people with Down syndrome may share some common physical features, they look more like their families than one another. Here’s our proof…

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…enough said…

People with Down Syndrome are NOT a diagnosis!

Francesca is first and foremost Francesca. The majority of her traits, her personality, her habits, etc are NOT attributable to Down syndrome.  An example: She doesn’t crawl, she scoots around on her bottom. It’s very cute. Lots of kids do it, typical or otherwise, and yet it surprises people.  They will say Oh, look at her! And then they may continue to stare or talk about it for so long that I sometimes feel the need to explain that she has low muscle tone that makes crawling on all fours difficult. But recently it occurred to me – she doesn’t scoot because she has Down syndrome, she scoots because that’s how she figured out how to best use her body to get around. DS doesn’t define the way she moves, or the way she thinks or the way she acts. She’s just doing the best she can with what she’s got. As we all are.

But, most importantly, she is loved and loved and loved. By many.
Not because of her diagnosis, or even in spite of it.
But just because she’s our Frankie Cat.

Happy World Down Syndrome Day!

 

 

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