Eyes Like Sapphires

Life with Down Syndrome

Category: Down Syndrome Awareness Month 2018 Page 1 of 2

Down Syndrome Awareness Month: Day 13

Speech. It’s our Achilles heel.
Frankie says a lot of “jargon” – meaning she babbles conversationally with excellent intonation but the “words” are essentially gibberish. It is a normal stage of speech development and is considered a precursor to language in all children.

Except it feels like we’ve been stuck in this stage for a looooooong time. Which apparently is not uncommon in children with DS and a lot of other families are feeling the same frustrations we are. Anecdotally it seems many kids with DS start talking in earnest around age 5. And according to the National Down Syndrome Society most children with DS learn to speak and will use speech as their primary means of communication.

I had a long chat with Frankie’s speech therapist yesterday. She feels we are on the right track and we do hear more words emerging from the jargon. She cites Frankie’s stubborn streak as a reason we’re not hearing much yet…she says she’s a smartie and knows a lot more than she lets on. We both feel like she has GOT to be a talker one day, because she seems to have so much to say. But as with pretty much all things DS the process will require lots of hard work and LOTS of patience.

I don’t usually ask for prayers but I’m going to need you all to pray for me when it does happen because between her and her brother my head might just explode!! 😉

Down Syndrome Awareness Month: Day 12

Sometimes I catch people staring at Frankie. I mean like REALLY staring. It used to make me super uncomfortable and offended. But lately I’ve got a new motto:

Let them stare.

Because honestly what is there to see? A beautiful little girl with golden hair and eyes like a starry sky. A funny, silly 3 year old with a sense of humor all her own and an irresistible laugh to match. A child full of wonder at the world around her and the determination of a bull.

Most of all they will see she is loved. It is not love that comes from pity or a place of disappointment or consolation. It is genuine love for HER, just as she is.

Undoubtedly they will see her almond shaped eyes and the flat bridge of her nose. They will see Down syndrome. And that’s totally okay. But I hope that the longer they stare the more they will understand that all of these things coexist. Down syndrome doesn’t steal away beauty or a vibrant personality. And it certainly does not mean she is not loved.

So, let them stare. Let them learn

Down Syndrome Awareness Month: Day 11

It was only this morning that I said that being Frankie’s mama has been a revelatory experience. It has changed me from the inside out, making me more patient, more kind, more passionate. It has helped me find my voice.

I love watching this transformation happen to other people, too. I get to see moms and dads who are just a wee bit behind us on this journey, come from a place of fear and insecurity and just blossom into the most incredible advocates. They are bringing their passions together in extraordinary ways that spread awareness and education and make the world a better place for our children.

Just recently Veronica Mateo, a mother of a little girl with DS, posted in one of the groups I belong to about her husband’s new business. Reynaldo Mateo was a professional baseball player for 8 years before he got injured and according to her his passion for the game is out of this world. The birth of their daughter Sofia in 2016 was a life changing event for him and the pride that he feels for her and the DS community is so palpable that he decided to name his company T21 Bats. He says he is proud to represent the DS community in everything he is involved with and now when people ask why T21, he has an opportunity to educate people on what DS is. I am so humbled by the way he is using his unique voice to shout the worth of people with Down syndrome and to educate a population that might not have given it a second thought.
So if you’re in the market for a beautiful, high quality wooden bat, please check out T21 Bats on Facebook. Awesome business and incredible people.

Down Syndrome Awareness Month: Day 10

Before Frankie I might’ve panicked if my typical son had been placed in an inclusion classroom. I didn’t have any personal experience but everyone knows that kids with special needs take up all of the teacher’s attention and cause distractions in class, right?

Then Frankie came along and I was suddenly aware of how untrue and unfair this outlook was. She had as much right as any kid to be educated alongside her peers. I knew inclusion would help her thrive, but I still worried that other parents would never want her in their child’s classroom.

Then I saw this – according to a recent study, students who are educated alongside their disabled peers performed 15% higher in academics than students educated without their disabled peers. Further, these students are more aware of diverse styles of learning among themselves as well as their disabled peers and report a general feeling of inclusivity within their school day. They also enjoy the resources and support of special education teachers who are trained to look out for not only their academic growth but their social, emotional and behavioral wellbeing as well. In short, inclusion benefits everyone.

As for Frankie, when I dropped her off this morning, she was tackle-hugged by a classmate before she even got in the door. She adds so much more to a classroom than she takes away. 

Down Syndrome Awareness Month: Day 9

Down syndrome is not a spectrum. You can’t have a “severe case” or even “just a little bit.” Whether or not you have an extra chromosome is pretty definitive!

But how that extra chromosome affects different people is a very individual thing. There is surprisingly little information about what the 21st chromosome controls. We know generalities like people with DS are prone to low muscle tone, intellectual disabilities, certain physical features and heart defects, but the specifics vary from person to person.

There are 3 types of Down syndrome. All involve an extra copy of the 21st chromosome – Trisomy 21 denotes that it is present in all cells, while with Mosiacism it is present in a percentage of cells throughout the body. In people with Translocation, a portion of the 21st chromosome breaks off during cell division and attaches to another chromosome.

I have come to learn that it doesn’t matter one bit how any one person is affected by that extra chromosome or what kind of Down syndrome they have. Frankie’s needs are her needs no matter what, and we can best serve her by addressing her as an individual ❤

Down Syndrome Awareness Month: Day 8

So I think I’ve convinced you all over the past 3 years that Frankie and her friends are amazing and beautiful and fierce! But what are your thoughts on teens and adults with Down syndrome? I hope you’re not thinking they’re anything less than!

I mean check out these guys!!! They are gorgeous and stylish and vivacious and living their best lives!!!! They are gymnasts, models, actors, philosophers and just teens rocking the high school life. They make me so excited for Frankie’s future! I hope that you understand that when you say she is tearing down stereotypes, you must acknowledge all of these stars who have gone before her and done the real work!

Down Syndrome Awareness Month: Day 7

I’ve said before that when Frankie was born all of my dreams of the perfect little girl crumbled. It was a silly notion anyway but nothing I was feeling was measured or sensical in those early days.

Flash forward to yesterday when we had to spend a full 15 minutes in the girls toy aisle at Target. She grabbed that little princess case and made a bee line for the register the same way Tristan did with a set of construction vehicles when he was a similar age.

As much as I enjoy it, I’m not actually reveling in her girlyness. It’s just that I’m surprised and impressed at how well she knows her own mind. I think I was worried that DS meant a life of complacency or apathy. Our house was covered in cars and trains when she was born (before Minecraft insanity set in, obvs) and yet from the beginning she has chosen dolls and ballet and princesses. Point being – this girl has known what she wants from the beginning.

Now I have no doubt that her future will be filled with wants and desires and aspirations that extend beyond the Target toy aisle. And I can’t wait to watch her achieve them.

Down Syndrome Awareness Month: Day 6

Frankie is 3.5 years old now and we’re starting to emerge from the Mommy & Me phase – the one where I accompany her to activities, guide her through participation and redirect her when she loses interest.
You know by now that we advocate and push for inclusion wherever and whenever possible. But as we go I’m learning a lot about what that looks like for her when I step out of the room. I think I’ve thought that just putting her in inclusive settings was the bulk of the battle and resulted in actual inclusion. Turns out that that’s just the beginning.

Most of the time Frankie is great in school, extracurricular activities and various classes. She enjoys being there and loves participating. But sometimes I notice her quietly sitting out, or straying or otherwise doing her own thing. One reason for this is she’s a very visual learner – she needs to see things done, often several times, before she understands HOW to participate and what she’s expected to do. Because she can’t express herself particularly well right now, I can only guess at other reasons, but I suspect that it’s sometimes because when she’s there no one is actually and purposely including her. I totally get it, no one teacher or class leader can devote all of their attention to keeping her engaged. And to be honest that type of support is almost more exclusive than inclusive.

I hate to ask other parents to make special considerations for Frankie – I mean, we’re trying to fit in here! 😉 But one way you can help us in our journey into full and meaningful inclusion is to talk to your children and lead by example in how to engage and draw in friends like Frankie who might be hovering on the fringe. We will of course keep on putting her inclusive settings from our end, but we so appreciate when other parents and children embrace inclusion from their end too ❤

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.

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