brittany and her friend smiling

A Love Letter to My Sister-in-Spirit With Down Syndrome

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The following is a love letter to a friend who has lit me up with joy and friendship and laughter. She feels like a sister. But don’t mistake her infectious laugh and bright smile as playfulness without purpose; this woman’s got impact.

I met Brittany Schiavone two years ago. Today, she’s a 27-year-old woman thriving with Down syndrome, and the creator of a nonprofit called Brittany’s Baskets of Hope. Her mission is to spread resources, support and, of course, love to families that have newly welcomed a child with Down syndrome into their lives.

I remember meeting her two years ago and thinking to myself, “How many 25-year-olds are living their purpose, or even know what it is?” And there she was, 25 and refusing to let anyone shrink or diminish her.

Brittany, this is my love letter to you. You always remind me that we’re not alone: “I want every baby with Down syndrome to know she can do anything, really, really anything,” you say. So my wish is that this letter celebrates not only you, but reminds every girl or boy of every different ability that she or he is worthy and oh so mighty!

To my sister-in-spirit with Down syndrome,

Do you know how lucky I feel to have you in my life? Thank you for all the heart and star and flower emojis you text me and, of course, your favorite smiley face with the cool shades. Yeah, you’ve got style, too. 

I hope you never stop expressing who you are and how you feel, even if words sometimes feel complicated to get out. You’ve taught me that hugs and hand-holding run deeper than words.

brittany and her friend smiling

Have you noticed, my friend, that your laugh always lights up mine and that your joy never fails to spill over out of you and into everyone else? You steal the room, girl. Every time. Your laughter is not contagious; it’s magnetic. And so are you. Remember that.

Remember, my dear sister-in-spirit, you have purpose. We need your purpose for the world to be full. What your friendship has taught me is that we are connected (even when we can’t see it). For all of us to soar, each one of us needs to soar. I am amazed that, every day, not only do you know your purpose, but you live it. When we are ourselves, we shine so much brighter.

Dear sister, do you know you are a queen? Do you know you should always take up the space you deserve, that you should always use your voice or your song or your dance to express your essence in its fullness? Never shrink, my friend. You are worth too much.

And never let anyone dismiss you based on how you walk, how you talk, how you perceive the world, or how you look. You are beautiful. Exactly as you are. Embrace your gorgeousness.

And, finally, thank you, my friend, for your humor and creativity. Thank you for always singing in the car with me and reaching over to raise the volume every time Meghan Trainor comes on the radio. Thank you for rocking hair brushes as microphones with me and for always ad-libbing Derek Hough’s name for us when Meghan sings, “Dear future husband…”

After meeting you, I know for sure that love and friendship move the world. There is no room for hurtful words between us, for mean language that divides us. This is our chance to stand up together and know that, together, we are stronger. When we’re not afraid to be ourselves — or let anyone else be who they are — and we join forces, we all rise, all people of all abilities.

brittany making a heart with her hands

May you continue reminding everyone you come across that we all deserve to be seen, heard, and loved. You are worthy, my friend. Thank you for your light.


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.

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To My Son With Down Syndrome as You Start Kindergarten

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Dear Evan,

I cannot believe we’re finally here. We’ve spent the last five years preparing for this. You’re starting kindergarten, and we’re so proud of you and love you so much!

When you were first born, your daddy and I knew only a little bit about Down syndrome, and we were so worried for you. We were afraid that learning would be hard for you, and we wondered what you would be able to do. Would you be able to read? Would you be able to use a computer? Would you be able to communicate with us?

It didn’t take us long to figure out that those worries were silly. You began amazing us as a baby, and you continue to do so today. You’ve shown us your love for learning. You already know your letters and their sounds. You’re starting to figure out how to sound out words, and you’re already reading several words. You’re even spelling your name and a few other words, and all of this seems to have come so easily to you. You figured out how to scroll through pictures on my phone when you were only a year and a half, and you are a whiz with the iPad. Speaking has proven to be your biggest challenge, but you’re putting three to four words together, and when you really want something or are really upset, you manage full sentences nicely.

You have an amazing sense of independence, and you know what you’re capable of. You’re making your bed, sometimes without being asked. Last weekend, when I tried to help you on the soccer field, you dismissed me, telling me to sit down. What you were really saying was you were ready to do this on your own, and you were right. It’s not the first time you’ve done something like that, and I’ve learned you are the best judge of what you’re able to do. When you tell me you don’t need me, you don’t need me. I’ve learned to trust your instincts.

The author's son standing behind a frame that says "My 1st Day of Kindergarten"

I am not worried at all about your kindergarten readiness. I know you’re prepared for this and that you belong in that classroom fully included with “typical” children. You’ve worked hard. You learn fast. You are capable. You are competent.

But I do worry about other things, like whether everyone in the school will believe in you as much as your daddy and I do, whether kids will be nice to you or tease you, or whether you will be invited to the birthday parties the other children will be invited to. We will navigate all that together.

We expect so much from you, Evan, because we know you and we know your capabilities. You can achieve so much and can be successful in school. We know there are so many possibilities for you as long as we all work hard together. Your mommy and daddy are committed to working with your team at school to ensure that high but reasonable expectations are placed on you, and we’re prepared to challenge those who don’t have those high expectations.

Kindergarten will be the first step in this big-kid journey, and I am so excited to be on this journey with you.

Love,
Mommy

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Woman With Down Syndrome Retires After Working at McDonald's for 32 Years

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Freia David has been working the fry station at McDonald’s since 1984. Now, after 32 years, David, who was born with Down syndrome, is retiring. David, now 52, has been a regular fixture at the fast food restaurant in Needham, Massachusetts, since she was 22, working five days a week from 11 a.m. to 2 p.m.

As part of her job, David worked during the lunch time rush manning the fry station as well as cleaning-up and interacting with customers. “Freia’s smile, her enthusiasm, and her daily hugs made our restaurant more than just a restaurant,” Timothy McCoy, Owner Operator of the Needham McDonald’s, said. “She is loved and respected by all of our employees, customers, and anyone she has come into contact with. We are so sad that she is retiring, but very happy for the time we had to work with her.”

Freia David and friend Christopher Sheehan 2015

David began working at McDonald’s with the help of the Charles River Center, the group home where she lives. Today, the center continues to help people with developmental disabilities find jobs. More than 80 of its clients  hold jobs at companies such as TJ Maxx, CVS, Bertucci’s and other local businesses.

“Her long-term employment is a fantastic example of how people with developmental disabilities such as Down syndrome can lead productive and fulfilling lives and contribute to their communities,” said Anne-Marie Bajwa, chief operating officer at the Charles River Center.

Now that she is retiring, David will be participating in the center’s day habilitation program, which provides physical, occupational, speech and music therapies as well as cooking, art and exercise programs.

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To My Daughter With Down Syndrome on Your First Day of School

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To my 2-year-old on your first day of school,

I remember the day we found out we were finally pregnant with you. We had been trying for such a long time. I couldn’t help but think you were going to be a true angel sent from above.

Weeks went by, and I began to feel you inside, turning, hiccuping and growing. I remember the morning we were going to see you on that little screen at the ultrasound appointment, we could not contain our excitement. We were quickly brought to our knees when the doctor gave us the news that you had a heart defect.

The next weeks followed with tests and more tests. We also found out you would have an extra chromosome.

I’m sorry to say I was scared. I’m sorry to say the tears rolled down easily because I didn’t know what your future would be like. I didn’t know what you would be like.

Months went by, and we prepared for you to come and join us in this world. I begged and pleaded with God that he would make you healthy.

On the day you were born, there was a sign on the wall with the words “Miracles happen here.”

We were so excited to meet you. Your sissy was at school, and she had no idea you were coming on that beautiful day. You came pretty fast.

I believe God actually made our dreams come true and answered our prayers. You were healthy. A team from NICU checked you out for about five minutes, and they said your heart was good and you wouldn’t need surgery for a few months. And guess what? You were perfect, you were perfect to us!

When I think of the day we finally met you, I remember how tiny you were. That day, I promised I would always love you, protect you and guide you, and I would teach the world about you. Because my biggest fear was that this world wasn’t ready for you.

The author's daughter

I never thought your first day of school would come so quickly. Now that it’s only a couple of weeks away, I don’t know if my heart can handle it. 

You will be meeting new people, and I have to trust the world to take care of you. I have to trust that you will be safe, that you will be cared for and treated with love and respect. That this world will look at who you are and not diss your ability. That this world will see all you are capable of and build your wings with gentle, loving care, the way we have. That you will be given the opportunity to thrive in your own unique way.

I hope I have prepared you for this big stepping stone in your life. If anything, I know we’ve all shown you how much we adore you, how we treasure who you are and that we love you for being you!

I take comfort in sending you to school. I know you need more time to learn, that you may require more help. And though I want you with me always, because I don’t know if the world is ready for you, I do this for you, for you to be able to fly, to be able to succeed, to be able to communicate, and for you to show the world you can do anything you dream of with a little extra help.

I know I will be a mess on your first day of school, your very first day without me. I hope your teacher can see the potential I see in you, your determination, your silliness, your passion for life, your yearning to learn, your sweet soul and your loving heart. That she will guide you and teach you, because I know it takes a village.

I pray one day you may be independent and lead a beautiful life the way we have imagined for you. I know you will shine bright like the biggest star. The sky is the limit!

May your sweet guardian angel protect you through this new journey, my precious one. We believe in you more than you will ever know. You take a huge piece of my heart everywhere you go. Mama loves you to heaven and back times infinity and beyond, forever.

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When My Son Asked If His Sister With Down Syndrome Will Get Her License

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How should I answer this?

Taking a second to think, I chose to be open and real with my son.

“I don’t know if sissy will ever drive a car. Taking a written driver’s test would be hard for your sister since reading is hard for her and writing is even more difficult. So, I am not sure if she will ever drive. But, she’s only 10, so that’s a few years away.”

“That’s what I thought,” my son replied.

My 7-year-old son is a thinker and a planner. He is more of a planner than I ever was as a child. He talks about getting his driver’s license when he’s 16 and buying a truck. He talks about going to college and having his own house one day. He talks about fixing motorcycles and riding dirt bikes as possible professional options.

Sometimes, these talks lead him to reflect about his sister. “I wonder if Jaycee will go to college,” he mentioned one day.

“I am not sure. Some people with Down syndrome do, but Jaycee has difficulty learning and speaking. So, I am really not sure. It’s OK if she goes to college, and it’s fine if she doesn’t,” I replied.

“Going to college is a choice,” he replied in agreement.

Another day when we were talking about his future in building motorcycles, I asked Elijah what job he thought his sister may have one day. He couldn’t think of anything.

I told him I thought she might make a good pizza maker at a restaurant because she loves pizza and helps us make it at home. He wasn’t sure if she could follow the directions or if she could resist eating the pizza. He has a point there.

Later that day, he came to me and said, “Mom, I have been thinking. I know one job Jaycee could never do.”

I wasn’t sure what he was about to say next.

“She can’t be like you mom. She can’t teach people to talk.”

True, being minimally verbal, I doubt Jaycee could ever be a pediatric speech-language pathologist. But, I was happy that my son continued to think about possible jobs for his sister long after our conversation ended.

These conversations happen ever so often. I encourage them. We have always been open about Jaycee’s Down syndrome within our family. It is not looked at as something that is “bad.” We don’t shy around the subject. We encourage questions, and we talk about Jaycee’s difficulties as he sees them.

family of four in a car

I am grateful my son thinks of his sister. It has always been my hope that they would have a strong relationship where they consider each other’s needs. My son is on that track. He wonders what her life will be like years from now, as I do too. Jaycee may not be able to verbalize these questions about her brother’s future, but I do know she cares deeply about him. Whenever we go to the doctor without my son, Jaycee will ask throughout the day, “Bubba?” She wants to know why her brother isn’t there with her.

I don’t know what the future holds for Jaycee. I don’t exactly know what her life will look like in 10 years. But my hope is that Jaycee and her brother will have that connection and concern for each other that lasts a lifetime.

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10 Things This Special Needs Mom Wishes You Knew

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What is the definition of a special needs mom? We are the silent armies for our children. We are the unsung heroes who may never get public recognition, but continue to fight the good fight for our kids day and night. A special needs mom is the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins. For our kids, we aren’t just supermoms. We are their cheerleaders, their advocates, their nurses and their therapists.

My newest addition, Asher, made me a special needs mom. We all know the endless job titles and duties that go along with being a mom in general, but I wanted to share 10 things I wish you knew about my life as a special needs mom.

1. I tend to have a smile on my face when surrounded by friends and family, but on the inside, I’m constantly battling being exhausted, uncomfortable and at times, lonely. We all love our children immensely, but it wont take the pain away because we know we can’t always take away the hurt they may feel.

2. My son shows an enormous amount of love, and he needs the same shown to him. He brings joy and laughter to those who know him, but he is definitely capable of expressing other feelings. He cries and screams just as much as he laughs and smiles.

3. Knowing other children with special needs doesn’t make you an expert on my child’s diagnosis. So please don’t tell me my son is “high-functioning” or only has a “mild” case of Down syndrome. And please refrain from telling me my son looks “normal,” because who really gets to decide what’s normal in the world today? Children with special needs are all born different and develop at different paces, just like “typical” children do.

4. Even though we have moments of loneliness, we moms are able to be a part of a supportive community, whether it be on social media or right next door. It takes a village to raise any children. When you do find that mom who just “gets it,” well, it’s pretty transforming!

5. My son is smart, creative and talented. It might take him a little longer to learn things, but with help from his therapist and doctors, he will get there. Don’t ever assume my son can’t do what your children do. I don’t, and I will always motivate him to do whatever he wants in life.

6. We moms are more alike than different. I start my morning the same as you likely do. I have my coffee, shower, and fight to get everyone ready for the day. I worry about the laundry and dishes piling up, and stress over the house looking like someone ransacked it. I bicker with my spouse and all the other experiences that go along with being married. There are plenty of things we can find common ground on, and I want you to know that at the end of the day, we are all still moms.

7. My child might make noises, bang his head on me, flail his arms and legs, or even randomly start crying while strolling through the grocery store. I don’t mind if you look, but please don’t stare with your mouth wide open. He can’t help when he feels anxious or frightened, and his environment strongly affects his behavior.

8. I know my son touches other people’s lives every day. His influence on others is much greater than mine could ever be.

9. I want you to talk to your children about my child. I understand they have questions about people with disabilities, but you aren’t doing anyone a favor by not answering them. Teach them not to stare, point, whisper, ignore, or bully. Teach them to use respectful words amongst their peers. Teach them that using the R-word is not OK and is offensive to our children. Talk to them about how alike people are with disabilities to them, and encourage your child to interact with my son and even befriend him.

10. I want you to know how hard I am on myself even before all the questions asking if we could do more to help him hit his milestones come my way. I know I’m not perfect, but I’m the perfect parent for my children, and that’s good enough for me at the end of the day.

A version of this post originally appeared on My Atlanta Moms Club.

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