Eyes Like Sapphires

Life with Down Syndrome

Author: Farah Page 2 of 5

Down Syndrome Awareness Month: Day 22

Speech is often the last skill to develop in children with Down syndrome, but most will learn to speak and use speech as their primary means of communication. Low tone is once again one of the main culprits behind the delays, as are difficulties with oral motor planning and with the coordination of breathing, vocalizing and producing speech sounds.

Speech is definitely Frankie’s Achille’s heel. When her therapist gives me a pep talk, she assures me that she is only about 25% delayed. I try to keep calm about it – after all, Tristan was not an early talker by any means and now he does. not. shut. up! But it’s the area I see her falling behind her peers in the most.

Although it is what I’m most concerned about, I feel like we recently turned a corner. In the past month or so, Frankie will often dutifully repeat what we ask her to. This is huge for us – we always knew her receptive language was excellent and she understood everything we were telling her, but we think it was her stubborn streak that kept her from approximating the words we asked her to try. In the past we would hear her say some words, but they were inconsistent and even when we thought she had something down, it might disappear from her vocabulary without warning. But her willingness to try has made all the difference in the world and is resulting in spontaneous language as well.

This morning after her bath, I wrapped her in a towel and sang a song to her. She giggled hysterically as I rocked her as if she were a baby. Looking down at her perfect, happy face I said “I love you.” And then it happened.

“Ah wuv oo.”

The milestones can take longer to achieve, but boy are the highs high!

Down Syndrome Awareness Month: Day 21

A long time ago, before kids, I had a conversation about the state of the world with a good friend. I told her I wasn’t even sure it was a good idea to bring children into such a mess! She said “Yeah, but there’s love and marriage and children and family” – the wonderful things that make life worth living.

After Frankie was born, I was starting to come to terms with her diagnosis when this memory came back to me. I suddenly was depressed all over again thinking she’d never have any of these things; things that supposedly make it all worthwhile. But another wise friend, Melissa, said to me “She will find the things that make her life worthwhile.”

Women with Down syndrome have had children, but it’s very rare. If they do achieve pregnancy, their child has a 50% chance of being born with DS. Men with DS are largely thought to be infertile, but it is a difficult statistic to measure. Throw in the fact that historically adults with DS have not been encouraged to date, marry or have sex and you can see why there is little information available.

We struggle with this a lot. In fact, the only time Seb has shed a tear about her diagnosis is when we talked about how she probably could not have a family of her own. It is heartbreaking to think that such a momentous choice in life has been taken away from your child right off the bat. I used to think that I would do anything in my power to help her have a baby. But now as I learn more and as she grows, I’m not sure. The few people with Down syndrome who have had children have required a trememdous amount of support. We have to be realistic.

BUT, that is such a long way away. We don’t know how she will develop, we don’t know the advances that will be made in the lives of people with DS, we don’t know if she’ll even WANT children of her own. This is exactly how and why I have learned a huge lesson in being present and living in the moment since Frankie was born – we just can’t know what the future holds so there’s no point in worrying about it.

In the meantime, I hold my friend Melissa’s words in my heart. I have to trust that Frankie will pave her own path to happiness.

Down Syndrome Awareness Month: Day 20

A 2011 study of siblings of children with Down syndrome conducted by Childrens’ Hospital Boston found that:

96% had affection towards their sibling
94% were proud of their brother or sister
88% felt they were better people because of their sibling with Down syndrome

Last night after dinner, I interviewed Tristan about Down syndrome. Our conversation went something like this:

ME: When you look at other kids Frankie’s age, what differences do you see?

HIM: You mean other babies? Nothing. Except maybe she doesn’t talk as much as other babies, I think. But really, can they say TA-CO like her??

ME: If you could change something about her, what would it be?

HIM: About this little girl? Nothing. She’s my perfect little sissy.

ME: How much do you love her?

HIM: The most! You and Daddy and her.

ME: How do you think our life has changed since Frankie was born?

HIM: Well, the easiness factor has probably gone down – for YOU, because well, you know she cries and stuff like that. But the happiness factor has gone way up!

Down Syndrome Awareness Month: Day 19

Most people would say that when you receive a diagnosis like Down syndrome you go through a whole range of emotions. That was certainly true for me.

Looking back there are so many things I wish I understood, but I really believe that there is nothing anyone can say or do that will make everything all okay for you in an instant. It’s a journey with many stages. There is no way around it, you have to go through it. You have to live it.

Ahead of Down Syndrome Awareness Month, the DSDN asked us moms to share a letter written to our diagnosis day self. None of this is news to those who know us, but here is ours

Down Syndrome Diagnosis Network: Dear Me

Down Syndrome Awareness Month: Day 18

I really love sharing about Down syndrome for October and I so appreciate all of your wonderful feedback about Frankie and how well she is doing. But sometimes I get the impression that people feel that because she is doing so awesomely, she is somehow an exception to the Down syndrome rule and that our experience is rare.

So I just wanted to take a minute to say she’s not and it’s not. Social media has been an invaluable tool for us in so many ways, but mostly it brings a global DS community right into our home and allows us to cheer the successes of our “friends” all over the world. These kids impress us every day with their strength, their intellect and their abilities. We watch videos of them climbing and running and jumping and talking and singing and reading (yes, reading at 2.5!). The range of accomplishments is staggering and it’s a joy to see each one discover their own strengths and weaknesses.

Yes, we have been blessed in many ways, but Frankie is definitely not some kind of Down syndrome prodigy. I’m not sure if it’s because we are seeing more about kids with DS online and in the media. Or maybe constantly improving health care, research and therapy has something to do with it. I would bet that it’s probably a combination of both, but people with Down syndrome are so much more capable than they’re given credit for.

So, please take a second to just look at these beautiful little faces who are all around the same age as Frankie and know that they are absolutely rocking their extra chromosome too!

Down Syndrome Awareness Month: Day 17

Children with Down syndrome often have tiny ear and nasal passages. And that low tone I mentioned yesterday actually affects internal organs as well. It can make airways, that are already smaller than average, floppy.

When Frankie was a newborn, she made a horrible and scary noise when she was sleeping – it was called stridor and was a symptom of her narrow esophagus. She has had a few bouts of croup – the first of which came on 2 hours into an 8 hour flight from London to New York. And perhaps most scary, she has had several choking incidents. The worst one earned us an ambulance ride to the ER. Thankfully she was fine but it was terrifying.

Frankie regularly sees the ENT to make sure all is well, but all of the above, as well as apnea, chronic ear infections and enlarged tonsils/adenoids, are all par for the course with DS and compounded by those tiny ear and nasal passages.

These are all things that typical children can experience as well, but they seem to grow out of them quicker than kids with DS. Thankfully I think we are finally coming out the other end for most of these inflictions…but don’t be surprised if you see me still cutting tangerines segments in half!

Down Syndrome Awareness Month: Day 16

Frankie has low muscle tone, as do almost all children with Down syndrome. It also affects many kids on the autism spectrum and sometimes even the typical population. If you imagine the fibers that make up a muscle, in people with low tone they’re just not as dense. It doesn’t mean she’s not strong. She just has to work harder to achieve the same results. She is actually really physical and walked relatively early for a baby with DS – first steps at 16 months and full-time walker from 18 months.

Frankie is terrific at motor planning as well – she is great at figuring things out. The other day I stood in front of her, legs spread wide in order to block her way. She looked to my left, then to my right and then gave me one of her sly little smiles, tipped back her doll stroller and pushed it and herself right through my legs.

She also has a surprising sense of spatial awareness. Just seconds after I took this video the stroller veered toward a car parked next to the sidewalk. I panicked and lunged, but she righted herself and continued on her way. As she pretty much always does.

Down Syndrome Awareness Month: Day 15

The other night I was showing Seb the pictures of the kids that I had taken that day on my phone, as we do almost every night. He got to this one and zoomed in. “Gosh, she’s beautiful, isn’t she?” he said.

First off, if you know him, you know things like that don’t come out of his mouth very often. And I’m sure several of you are going to pipe in and say how gorgeous she is (I’m looking at you, Mom!). But that’s not what this is about.

You know what surprised me most about having a child with Down syndrome? It’s just how “normal” life is. How we spend our evenings talking about the smart, funny, adorable things BOTH our kids did today. How we are so proud of their accomplishments big and small. How we are still so taken aback by just how beautiful they are! Probably exactly the way you feel about your kids, too.

I’m ashamed to admit that when Frankie was born, I was worried she wouldn’t be pretty. I let my heart and mind be ruled by what I thought I knew about Down syndrome. But the reality is beauty and Down syndrome have nothing to do with one another. I think she’s breathtaking because she’s got an unbreakable spirit and a fire in her eyes. And because she’s mine.

Down Syndrome Awareness Month: Day 14

This picture perfectly sums up ballet class this morning. For the first half, Frankie was super engaged and following along so well and so enthusiastically. But half way through she lost interest. She kept getting up from her spot, rifling through the props in the corner, even snuck into the neighboring class. Chasing after her was physically exhausting. But even more draining was the feeling that the other parents attribute this behavior to her having Down syndrome.

I know in my heart that this is not a DS thing – she is just that uber curious 2 year old I posted about earlier this month. And it’s true I’m just making assumptions about what the other parents think. But it’s something I feel self conscious about – when she is not a perfect angel people think it’s because of DS.

But here’s the thing – when Frankie is a beastie, it’s because Frankie. Is. A. Beastie. Anyone who knows her can attest to that. She can turn it on and off at will – if it weren’t so funny it’d be scary! Down syndrome doesn’t define her. She is a Terrible Two Year Old first!

As for me, I’ve got to work on letting it go and not worrying what other people think. Soon enough those other parents will see her range of abilities too…or maybe their kid will sneak into the class next door and I won’t feel so bad anymore!

Down Syndrome Awareness Month: Day 13

This morning a grandmother in one of the Facebook groups I belong to posted about how proud she was of her talented granddaughter and included a link to a piece by an NBC affiliate. Intrigued, I clicked. It was a story about Sophia Pineda and showed her creating some amazingly stunning paintings, like the one of this hummingbird. Sophia is just 14 years old. And she happens to have Down syndrome.

14 years old!

With Down syndrome!

I know, right?!?! I love stories like this because it makes the point so beautifully: Having DS does NOT preclude someone from having talent – and prodigious talent at that! I can’t wait to see where Frankie’s talents lie. Her future is as bright as anyone else’s.

Sophia’s website is live, unfortunately the shop won’t be up until 2018. But I really hope you’ll remember her name if and when you need to buy a teacher’s gift or need some stationary or art for your home.

Check out her gallery for the hummingbird and more at www.sophiola.com

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