This video is long, but I think it’s such a beautiful example of inclusion. We don’t know what Frankie’s school experience is going be, but I’m hoping it can look something like this. I’ve already been in touch with our local school – Tristan’s school – about her and so far they’ve been really welcoming and talk as if it’s a given that she’ll go there. Our fingers are tightly crossed.
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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!
We are hyper aware of just how lucky we have been regarding Frankie’s health. But even the healthiest of kids with Down syndrome require extra care in the form of regular doctor and specialist appointments, lots of research on the part of the parents, and especially, therapy.
We are so fortunate that New York City has an excellent and very comprehensive Early Intervention program and because DS is such a cut and dried diagnosis, we have met with little resistance in getting her the services she needs. She was evaluated at 3 weeks old, began therapy at 8 weeks old and currently has 7 sessions of PT, OT and speech therapy, as well as 3 mornings in a preschool type program each week.
There is tons of research to support the benefits of early intervention and Frankie has beyond flourished in the program. So you can imagine the conflict I feel when I admit that sometimes we just get burnt out.
This past summer I was able to condense everything into 3 days each week so we had our Mondays and Fridays free to do what we wanted. We had playdates and went to the beach, we visited Grandma’s and we stayed up late. It was truly the best balance I’ve so far been able to achieve. She learned so much from friends and family, she built strength walking on the sand and the surf tested her balance, hugs and kisses nourished her from the inside out.
Frankie will officially start full-time preschool after she turns 3. My current plan is to have her start next September and to take the summer off from therapy completely. I’m petrified I’m doing the wrong thing but I think this little girl has earned the right to be “just a kid” for just a little while. I really believe there is SO much therapuetic value in every day experiences – or else what’s all the therapy for? Besides I think this beauty can live and learn at the same time.
So, even though we are constantly talking about and advocating for inclusion with Frankie’s typical peers, sometimes it’s amazingly comforting to be around other families that share our experiences with Down syndrome.
I found an incredible source of information, education, friendship and empathy in the online community. I initially found the NYC Down Syndrome Families group on Facebook on a whim while I was searching for local support when Frankie was almost a month old. I was then introduced to the Down Syndrome Diagnosis Network by a fellow Queens mom, which offers small, intimate groups based on your child’s birth year.
I first met the moms of these girls last year. All are in the 2015 DSDN FB group. Even I was surprised at the undeniable connection we all felt literally the minute we met. And when we hugged for the first time, it felt like home. And there are so many more that I haven’t met in person yet that I’m just dying to!
With all of the bad things the internet is blamed for, I can’t help but feel totally indebted to it for giving me a family beyond my flesh and blood. One that understands our unique perspective and one that provides so much information, comraderie and love. I truly believe this generation of children with Down syndrome are destined to lead better lives because their parents are more connected and learning from one another every day.
While I definitely do see Down Syndrome Awareness Month as a great opportunity to educate my friends, family and community about DS, it’s also a great opportunity for me to learn! Today I was reading a post over on @rubysrainbow on Instagram and I came across this quote from @aliciagraf90 about her teenage daughter Kirsta:
“All of Kirsta’s life we invited kids in to our world. We invited them over for birthday parties and church stuff, Young Life and cast parties…any time we could. So I think because we included them all along the way in our journey. They naturally included her. Inclusion goes both ways.”
WOW…how true is that? Inclusion does go both ways! I like to think we do this quite naturally. This picture is from a playdate we had for Frankie’s 1st birthday. She is literally surrounded by her peers, and now 18 months later they ask for her, want to go to her house, want to be her partner in ballet… I hope with all my heart it will always continue, but this quote made me realize the part I have to play in inclusion too.
People are always amazed by Frankie’s eyes. They say they’re like the ocean or a starry sky. I like to think they look like sparkly sapphires – my birthstone and favorite gem! I remember being besotted with them the moment I looked into them. I found solace and salvation from all of my fears in their deep blue and that glint hinted at the mischievious little fireball she was to become.
The sparkly effect is due to Brushfield spots, which are actually areas of her eye where the connective tissue has gathered, making the colored iris thinner and thus less blue. Although Brushfields do occur in the typical population, they are much more common in those with Down syndrome. The lighter the eyes the more pronounced the spots will appear.
Today was a DS Day. It’s what I call those days where Down syndrome is at the forefront of our lives. For the most part I can overlook the daily therapies, the delays, the lack of speech…those things are part of our every day reality. It’s the specialist appointments that get me. They’re a punch in the gut reminder that she’s not “a regular kid”
Fortunately, we don’t have to go too often. Today we had an appointment with a new endocrinologist. He’s mostly checking for thyroid function because kids with DS are susceptible to hypothyroidism. Interestingly, though it’s always gone hand in hand with DS, it’s only fairly recently that it’s being treated as the drugs have gotten better and more readily available. The results have been truly fascinating – not only are those patients able to better control their weight, they are also seeing more steady growth patterns and an increase in cognitive ability.
We are not particularly concerned with Frankie’s thyroid right now, but it’s important to check once or twice a year. We also did a CBC to make sure she’s as healthy as she can be – children with Down syndrome are also at greater risk of Leukemia. Again, not of particular concern for us right now but important to have regular checks.
Now we wait the nervewracking week for the results…the Wonder Woman bandaid helps.
Monkey see, monkey do…🙈
We have to be verrrry careful around this little one lately. She is a great imitator and will copy nearly everything we do, down to the littlest detail.
This morning she insisted on walking the mile to the playground. When I stopped to look at my phone to give her some time to catch up, I turned around to find this…
BTW, the water bottle dangling from her handle bars was deemed an ok substitute for Mommy’s coffee and cup holder.
Last week, Frankie and I were walking down the street when she stopped. She saw a crispy brown leaf and she stomped on it, squarely and deliberately. She was clearly delighted by the audible crunch.
A woman was approaching from the opposite direction. A huge smile spread across her face as she passed by us and said “Smart!” It wasn’t something I would’ve considered “smart” for a 2.5 year old. Funny? Silly? Maybe. Beastly? Probably! But this woman made me look at it differently.
There was no way she could’ve seen Frankie’s face through her curtain of blond hair and I bet she didn’t know she has an intellectual disability. She simply watched a toddler exploring her world, testing principals of cause and effect, experiencing her own moment of joy in completing the simplest of tasks.
When Frankie looked up she was beaming and it got me. It is *always* amazing to watch someone learning, to watch your child “figure it out” or to watch them reach that next level. No matter her age, no matter the milestone. I am proud of her every day.
I had something completely different prepared for today’s post but then this, originally posted 3 years ago today, showed up in my timehop with the caption “20 weeks and all is well!”
When Frankie was tiny we got a lot of questions. “Didn’t you *know*?” people would ask incredulously. No. We didn’t. Nasal bone was present, nuchal fold was in range, limbs were proportional. There were no red flags, no markers, no indications. I used to wonder What if the sono equipment had been a little bit better? Or what if the technician was a little bit keener? Would that have made a difference? Would we have known?
But that opens a whole other can of worms. What would we have done with that information? What decision would we make if we were counseled on all of the things she wouldn’t do instead of what she could? If we were told about all of the complications without any of the insights? If we were led to believe there would only be lows but no highs?
Personally I am glad that decision was taken out of my hands. But many families do have that information and must make that decision. And I truly believe it is theirs to make. But that is exactly why I share so much of Frankie – because she and so many others like her are the CAN to the CAN’T and the BEAUTY to the UGLY and the JOY to the DESPAIR. She is not scary or broken or less than. She is just a perfect little person.