Farah Lyner

@farah-lyner | contributor
New York-based Farah Lyner is mom to Tristan and the chromosomally enhanced Francesca. She blogs about their journey with Down syndrome at Eyes Like Sapphires.
Farah Lyner

Helping My Child With Down Syndrome Develop at Her Own Pace

If someone were to ask me what has changed most for me since having a child with a disability, I could sum it up in one word: time. That’s it. It’s time. The way I think of it, the way I use it, the way I value it. It has become my most precious commodity, a cross to bear, a penalty to pay and a gift to give. There are days you spend wishing it away. Counting down the hours until a particularly stubborn toddler can be put to bed. Multiplying minutes by milliliters as you attempt to get valuable ounces of milk into your newborn. Willing time to fly as you wait for your child to come out of surgery. Watching days tick by while you wait for that all-important paperwork to come back from the school, the doctor, the insurance company, the government… But mostly you just want more of it. Or you want it to go more slowly. Last year, when we were discussing the most appropriate classroom placement for my 4-year-old daughter with Down syndrome, her teacher said I needed to give her the gift of time. She meant I needed to slow down and be patient. She meant I needed to let her develop at her own pace. And here is where time is both my cross to bear and my gift to give. Because I try. I try so hard to let her blossom in her own time. But it is so hard to slow down a world that is spinning so fast, and so our instinct is that it’s easier to speed one person up than to slow everyone else down. It’s as if we’re running for a bus and I want so much to let her walk, to let her be independent and get there in her own time. But I also know if I don’t scoop her up and carry her, we will miss the bus. Parents of children with disabilities are often perpetually straddling a line, wanting so much for their child to be able to participate and fit in. We work so hard to bring them up to speed and to give them an edge and then watch, crestfallen as the goalposts are moved over and over. We bring our kids to special classes and tutors and therapies, hoping to catch them up. But then we see parents of typical kids investing in apps and test prep and preschool from 2 years old, and we know there is no way we can “catch up” and it is exhausting and defeating. We stand in one place yelling out to those ahead “Wait! Wait for us!” while at the same time calling behind to our child, “Come on! Hurry up!” What’s the answer? Do I want typically developing kids to be… less “smart?” Well, no. I mean, I have a neurotypical kid as well. I don’t want him to be at a disadvantage either. Do I wish the world would slow down in order for kids like my daughter to keep up? In a perfect world, yes I do. But I know that’s not realistic. So what exactly do I want? I want people to learn to value time like we do since having a child with Down syndrome. I want them to know that life is not a race. I want them to know there is so much beauty in the journey, and that a plateau is a wonderful place to sit and take in the view. I want them to understand that really, in the end, time is all we have and love is all we need.

Farah Lyner

Raising a Child With a Disability Has Made Me Stronger

I learned something last weekend and it goes like this: Motherhood has revealed my strengths. It’s not rocket science I guess, but it was something I needed to hear. Because when my daughter with Down syndrome was first born, my first thought was I can’t do this, I don’t want to do this. I feel such shame reliving that, but it’s essential that I own up to it in order to see how far I’ve come and how much I’ve grown. I have always been the type of person who gets easily frustrated by the silliest things – the wind blowing my umbrella or an unsteerable shopping cart in the grocery store. I thought for sure I’d be the worst mother, with no tolerance for toddler tantrums or wiggly babies. But I have talked my daughter through echocardiograms, retaught concepts I thought she had learned months ago and deciphered unintelligible words and gestures to make sure her wants and needs get met. Sometimes it is difficult to remain calm and focused, but it is my strength. I am patient. Having my daughter has made me reexamine and recognize my innate prejudices. Had I laughed at an R-word joke before? Did I worry about my typically developing son being in an integrated classroom? Had I made assumptions about someone based on their race or disability? Was I condescending? The answer to all of these things is yes, but I am aware now and I work hard to check my biases and see past differences. It is hard to put a name to bad feelings within ourselves and to learn from them, but it is my strength. I am respectful, kind and less judgmental. I don’t like conflict. I used to accept the answer I was given without question, not wanting to rock the boat. But there have been instances involving her care – both medical and academic – where I knew the answer I was given was not in her best interest. In those instances I have had to dig up the answers I needed, no matter how many dead ends I encountered. You need confidence and faith in yourself in order to pursue the truth. It is outside my comfort zone, but it is my strength. I am persistent. Parenting my son is enjoyable. He is a good student, he is a good friend, he is determined and capable. Parenting my daughter is harder – not because she is not any and all of those things, but because the outside world needs to be told to look for those qualities within her. People don’t presume competence and we are working to change that. Shouting about her worth – sometimes literally – can be exhausting, but it is my strength. I am an advocate. Every day we are up against people who have not learned all of these things yet. They do not acknowledge who she is or who she can become. It is scary to challenge society’s ingrained thoughts, or to think we can change hearts and minds, but it is my strength. I am brave. I feel very fortunate that this girl has been able to mold me into the mother she needs and she deserves. Were these qualities always inside of me, just waiting for a particular passion to ignite them and turn them into strengths? Or could it only have been because of her? Either way I am grateful for the chance to become a better person and a strong mother. I am grateful I am her mother.

Community Voices

the final piece #DownSyndrome

Today we got the official results back from the chromosome testing, we knew it was likely from the blood test during my wife's pregnancy. I've spent 4 months trying to convince myself its not true, then I spent 7 days waiting for results trying to convince myself I couldn't see it, which sometimes it was true, I still don't always see it. But today I found out my son carries an extra chromosome and now I find myself grieving once again. I don't need a comment, or a recommendation of what read, see, or do; Im not ready to hear any, I hope you understand.

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Farah Lyner

How to Read Your Child's Progress Report Without Freaking Out

We were doing great. Frankie, my 3-year-old daughter with Down syndrome, was rocking the school thing. At nearly every school pick-up I was told, “She had a great day!” and she was the virtual mayor of the hallways. She was drawing circles like a boss, taking those stairs with alternating feet and we were even hearing a lot more speech lately. I felt like we were in a really good place. And then the progress reports came. Her teacher called to prepare me. “I don’t want you to panic,” she said, “I don’t feel that the testing is accurate, it relies on verbal communication and Frankie was distracted. There is one age equivalency in particular…” “Oh, I know,” I had said at the time. By now I just let these things roll off my back. But then I sat down to read it. Page after page on how my little girl was not measuring up. Goals that were not met. Distraction. Self-directed behavior. And that age equivalency? One area had her at 9 months. She’s almost 4!  Needless to say, it didn’t roll off my back nearly as easily as I claimed it would. Join in the conversation. Can you answer the question below? Like many parents of children with disabilities, I’ve been through this a few times. And every time I’m reminded that this is a process. But I have realized there are steps that help take the edge off just a little bit. So here is my take on how to read a progress report without freaking out: 1. Read them thoroughly. I know it hurts, but you have to read them carefully. They will be the documents that inform the decision makers throughout your child’s educational career. They deserve your attention. Learn the lingo and what it “really” means and ask questions about what you don’t understand. 2. Feel your feelings. It’s OK to cry, to feel sad and angry and frustrated. It is virtually impossible to separate your emotions from your child’s progress. You have a vested interest in their success from the moment they are born and we are often fiercely protective of them. Maybe even more so when your child has disabilities. In fact, I think your emotions can be a valuable spark in starting the fire necessary to sustain lifelong advocacy for your child. So give your feelings an outlet, whether it be to a partner or fellow parent or trusted friend. 3. Leave them alone. Walk away from the reports, shove them in the drawer and forget about them for a while. Give yourself some time and distance. Remind yourself that there is a whole life outside of the world of special education and that your child’s diagnosis does not define them. Live in the world that does not revolve around therapies and special education and progress reports for as long as you need to and then revisit the reports when you’re ready. 4. Accept their validity. It’s true that these reports only tell part of your child’s story. You may disagree with the details, but it’s important to accept that they reflect the experience that your child’s teachers and therapists have had with him or her. Maybe you feel the reports do not accurately describe your child, but unless you are working with a team that is intentionally malicious and falsifying evaluations, then these reports are a snapshot of him or her that you can learn something from. 5. Get some perspective. Meet with your child’s teachers to get the bigger picture. Often the reports don’t detail the actual progress your child has made. They will measure your child’s success against “the norm” but not how he or she is doing according to his or her own path. Ask their teacher to tell you about your child’s strengths within the classroom. Ask about what they add to the environment. And then talk about how you both can support him or her consistently, both in school and at home. 6. Recover your passion. After reading Frankie’s most recent reports I felt… tired. I was frustrated and exhausted thinking that all of this work we were putting in was making no difference at all. In fact, seeing as I thought we were in a good place before, I felt like the reports were a giant step backwards. I didn’t see any point in continuing to push and advocate; I felt like giving up. It took a few days of feeling like this before I snapped out of it. But I met with her teachers and talked with some friends, who all gave me a much needed perspective. Then one day later that week, when I went to pick Frankie up from school, she ran to me with a huge smile and melted into my arms in a big hug. I was reminded that she is worth every single ounce of my effort and that she deserves to have me in her corner, fighting to clear a path toward success for her. The next week I attended an Advocacy in Education seminar and my passion was reignited. This will undoubtedly look different for everyone. But I think it’s important to find that which reminds you that the only way is forward. Not helping your child to progress toward success is not really even an option. 7. Make a plan. Frankie’s reports raised a red flag for me regarding her classroom placement. Speaking to her teachers made me realize we were having the same concerns. Moving forward, we have made a plan to make a few adjustments, both at home and at school, and we will observe her for a while to see if they make a difference. In the meantime, we are working on securing another placement should we decide to move her. Nothing is set in stone — I’ve learned it is so important to remain flexible. Whatever you decide to do, remember that though they may seem hurtful at the time, progress reports are actually a valuable tool for you to discover what works best for your child and to ultimately get him or her the supports they need to thrive.

Farah Lyner

The Importance of Positive Peer Models for Girls With Down Syndrome

Last fall I was put in contact with author, Sharita Manickam, and photographer, Jennifer Bruno. They were in the infancy stages of creating a children’s book. Their concept was to photograph young girls as professionals in fields that have been traditionally dominated by men. They were particularly interested in showing as much diversity among the girls as possible and the person who put us in touch thought my daughter, Frankie, who has Down syndrome, would be a perfect fit. I could see why she thought that. I had recently written a post for The Mighty on how important it was for Frankie to be empowered the same way every girl should, and I was interviewed for a podcast on the same topic. This thought of, how do we help girls with Down syndrome to feel strong and smart and powerful in order to set them up for future success, has very much been on my mind. But to be honest, when offered the opportunity to show her as just that, I hesitated. I worried about what people would think. Would they disregard a photo of her as a professional as unrealistic? Would they think it was laughable? Would it ruin the credibility of the project? Luckily, I set myself straight almost immediately as I realized this apprehension that the public might not be able to see past her disability is the very thing that continually holds people with Down syndrome back, both socially and professionally. I am supposed to be her advocate, and here I was playing into the stereotype myself. I think people with Down syndrome are in a really unique position at this point in time. Previous generations have fought fiercely for the right to be included in all settings, and especially for educational opportunities from preschool through to post-secondary programs. The children we are raising now, finally have the chance to reap the rewards of these hard won battles. Their futures are bright, and so many doors have been opened into meaningful employment. But public perception still dictates the roles they have access to. Now is the perfect time to put images of people with Down syndrome achieving professional success into the mainstream — both to combat stereotypes and to inspire young people with Down syndrome. When we talk about empowering young girls, we often say “If they can see it, they can be it.” This is also, and especially, true of those with disabilities. Participating in this project offered a chance to reach beyond our inner circle to show a child with a disability in a viable profession. It will hopefully challenge the preconceptions of its readers and make them think: “Actually, why not?” But I still wanted to be thoughtful as to what Frankie was to be photographed as. After conversations with Jen and taking some inspiration from a news piece I recently saw on Sophia Pineda, a teen with Down syndrome who paints stunning watercolors, we agreed Frankie would be an artist. Being included in the book titled, “Rad Girl Revolution,” where Rad stands for Rise Above Doubt and Reach Any Dream, sends a message that all girls can be successful in their chosen job. In the book you will see Frankie pictured as an artist, which is totally achievable, as disability does not preclude talent. You will see her among her peers, disproving the idea that girls with Down syndrome do not have the same aspirations typical kids do and cannot work hard to achieve their dreams. You will see her appear as a functioning member of a society, dispelling the myth that people with Down syndrome are a burden to their communities and that they cannot “give back.” You will be challenged to look beyond her disability to see her as successful, inspiring and included. At first glance, she may stand out among the other girls in “Rad Girl Revolution” because you may make assumptions about her abilities based on her diagnosis, but I can attest, she is more alike than different. She may have Down syndrome, but she has ceilings to shatter, too. “Rad Girl Revolution” is available for pre-order until May 8.

Farah Lyner

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, maybe it’s just the poster talking, 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 my daughter, Frankie, was born, I had made it my mission to teach my son 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 we first got her Down syndrome 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 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 in order to empower her and foster her independence, I need to help her discover her strengths and how 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 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 about my son when he 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 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, it’s 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 happiness. And I know she will. This girl can do anything! We want to hear your story. Become a Mighty contributor here .

Farah Lyner

Down Syndrome Memes: What You Need to Know About That Person

Dear Internet, A couple of months ago 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 spots in their eyes 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 Down syndrome 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? Internet, 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 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 what you would expect from any 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. Listen to her giddy laugh as she and her brother play. 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, as well as the ordinary moments. The public needs to see our kids reading and playing, attending school, making friends and just being kids. It needs to know 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 stand behind them. It needs to know they are more alike than different. 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 people with Down syndrome are not to be laughed at. Sincerely,Francesca’s Mom Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .

Farah Lyner

Worrying About the Future of Your Child With Down Syndrome

Why are we so afraid of Down syndrome? This question keeps me up at night. I lie there and try to put my finger on it. I try to remember what it was like before my daughter Frankie was “just Frankie” and when my first thought in the morning was, “My baby has Down syndrome.” 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 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 a baby to a toddler. Maybe a little slower than others but fierce nonetheless. But then I saw limits, dead ends, 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, would 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. 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. But it’s easy to love a little baby, right? What about teenagers and adults with Down syndrome? In the beginning as I was still processing things, I remember saying I was sure Frankie would be an adorable child, but I was more worried about what she would be like as an adult. Society always seems to be striving for bigger, faster, stronger and 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 and to talk and in school, work and 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. Let’s forget for a minute that this isn’t necessarily a reality for many people with Down syndrome. Let’s think this instead: What exactly is wrong with that? What’s wrong with a person who is doing an honest job and doing it well? What’s wrong with them doing their best 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 aren’t at the top of their class, who aren’t prom queens and 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 it may not be 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 in “that’s fine for you, but that’s not us” mode. I was scared 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 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’re 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. In the meantime, be comforted by what you already know: Our babies are not scary. They’re 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. Follow this journey on Eyes Like Sapphires. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines. Photo of Farah Lyner’s daughter, Frankie, by Wendy Wang Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .