Dream Planning and Future Opportunities for Special Needs

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This post is sponsored by Daymark Living.

I grew up in a family of people who pray. While those prayers were rooted in deep faith and accompanied with a history of tradition and church, the premise of the prayers were to let our thoughts be known–to speak our gratitude out loud and to unleash the deepest desires of our heart and give them wings; transform them from hidden thoughts to something bigger–spoken words empowered with the belief that what we asked could be granted. I remember countless prayers for babies, my grandpa adding “our grandchild on the way” to the line-up of other grandkids’ names in his prayers before they were even born. Intentions for these little lives were spoken out loud: “Please give them health, protect them, let them grow up to be kind,” and later continued into more specific prayers: “Let her find the right college, please help him do well on his test, keep him safe on this trip.”

I believe in the power of making our wishes known and unleashing dreams into spoken words. In parenting, it’s often what saves us from worrying too much but also what fuels us for the future and excites us for what’s possible. We talk about dreams as our children pull stethoscopes from their plastic doctor kits and we hint, “Maybe you’ll be a doctor someday!” Or when they swaddle their dolls and we tell them, “You’re going to make the best mama.”

When Nella was born, it took me a little while to figure out what those prayers look like–how to speak dreams out loud. I’d watch her gently nestle babies into her arms, patting them softly, and go to say, “You’re going to make the best mama someday” but stop myself, knowing it was highly unlikely.

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I believe in dreaming big and “nothing’s impossible,” but I also want to be responsibly realistic. Sometimes that’s hard with Down syndrome when we understand legitimate limitations that will impact her future and yet are also living in a time when people with Down syndrome are accomplishing things they never have before.

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And so how do we dream? How do we speak intentions out loud, get excited about opportunities that will be available to her and follow a path toward real goals?

I’ve found three things that help me:

1. I focus on this: I want Nella to be happy, to contribute and to feel fulfilled in life. Period.
And what makes her happy and how she contributes or feels fulfilled might be different than what I think should fulfill her and make her happy. Brett used to love the possibility that Nella would live with us forever, and I frequently remind him, “She probably isn’t going to want to live with us.” She might want to live with other people who have Down syndrome. She might want to live alone. All I know is that whatever makes her happy and whatever she dreams of doing, we will work hard to support her in achieving that.

2. Knowledge is power.
There didn’t used to be very many options for the future. In fact institution and living at home were about it fifty years ago. But there are so many different ways to dream about the future for our kids now, thanks to new programs, opportunities and creative minds that are forging new paths. We know now that college is an option from working with Ruby’s Rainbow and that there are nearly 250 different college programs around the country for people with intellectual disabilities.

And there are new options. Daymark Living is one of them–an entire community dedicated to helping the developmentally disabled thrive.

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Daymark Living will be breaking ground soon in Waxahachie, Texas–a growing town (near Dallas/Ft. Worth) of 40,000 people that offers a historic walkable downtown, a welcoming community and something critical to people with disabilities–employment opportunities. And while Daymark Living might not be a “forever” option for many families, it can be a great fit for a specific time period and a perfect “away from home” college experience.

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Residents will increase independence while living at Daymark while having a huge support group of friends and staff along the journey. Daymark’s beautiful homes come with numerous amenities from daily resident programming and on-site healthcare to transportation into town, social events, pools, fire pits and monitored fitness rooms–all to increase quality of life and encourage greater independence and meaningful relationships.

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The Daymark Living dream started from a dad who has a son with Down syndrome and, like us, believes in the power of saying his dreams out loud. (I’m so glad he did)

Thinking about Nella’s future can sometimes be daunting, but knowing new opportunities like Daymark Living exist and clicking through their website? It gives me so much peace and direction toward realistic possibilities.

Which brings me to my third thing that helps me:

3. Plan for Greatness.
When we think about the future of our kids and plan for college and opportunities, we plan for ALL of them. Nella’s future isn’t exempt in that big dream pile for our kids. They will each find ways to fly away from the nest and experience the beauty the world offers, and we want to support all of them in their dreams.

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With that said, I have a little dream for Nella’s future. It might not be what she wants, and if that’s the case, we’ll follow her lead, but I believe in saying these dreams out loud. If just for me. I’ll throw it into the universe, like my grandpa did in those long prayers he made every single morning, pouring out the deepest desires of his heart for the grand kids he loved.

I dream of our house in the mountains–it’s small and charming with ivy crawling up the face of it, and there’s a red front door, but my favorite thing about it is the little mother-in-law house behind it, far enough away that it has its own space. That’s Nella’s house. She’s close enough to us that she can borrow a cup of sugar or ask for some help if she needs it, but she runs that precious space on her own…with her husband, of course. There are wildflowers in their front yard–Black-eyed Susans by the hundreds, and they don’t mind when I run over to cut some for my vases before dinner parties. I invite them to all my dinner parties and love when they come, but most of the time they are having fun with their own friends–and that makes me happy. I own a children’s bookstore in our little downtown, and Nella works there part time. She runs story hour every weekday at 10 a.m. for all the little kids, and they love to hear her read stories but mostly love the hugs she gives them after. She has another part time job–with benefits–in town and loves her work friends–and being a beloved aunt to her nieces and nephews. We’ve watched our kids grow up and follow their passions, and we’ve supported Nella as she’s tried new things, went to school, lived on her own and eventually fell in love and moved in to the little house out back. She is surrounded by love and people who will help support her when we are gone. We have worked hard, experienced challenges, overcome them together and learned a lot over the years. But we are here…and she is happy. And all those who know her are better for it. 

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I don’t know what the future holds, but I am grateful for more opportunities. Thank you Daymark Living for being one more star in the sky for our dreamers. If you are a parent who’s dreaming of more for your child, follow Daymark Living’s growth and feel free to inquire about the possibilities they hold.

First and Last Impressions

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The hallway is empty now–bare bulletin boards that, just last week, were covered with colorful projects and pictures and sign-up sheets for the end-of-the-year party. The emptiness speaks of the fullness that’s been here the past nine months. This hallway is usually Main Street in the morning, a steady stream of in and out–parents leading the way and little ones following behind, dragging their tote bags, stopping in front of bulletin boards to find their hand print, their leaf project, their construction paper kite with the yellow yarn string.  There it is! The pink one! You made that? It’s beautiful!  Classroom drop-offs and hugs and Have-a-Great-Day!’s. Moms in yoga pants shuffling away to workouts and e-mail boxes, stopping outside the door to catch up–let’s do breakfast, let’s have a play date, let’s remember these preschool mornings forever.

Today it’s different. Classrooms have been cleaned out, projects sent home and the name tags that have personalized desks and job lists and cubbies have been removed to transition this sacred room for next year’s lucky students. The only last bits of this year reside at the table in the center of the room, covered in a summer table cloth, scattered with party treats. There are games, crafts, pizza and cookies; and I volley between Nella and Dash’s classrooms for events–a class photo picture frame craft and a montage slideshow to that ukulele version of Somewhere Over the Rainbow that always makes me cry. Today is no different.

I realize how much I truly love this place–for its smallness and coziness but mostly its greatness: behind each classroom door is a world leader. A preschool teacher who holds the key to an individual’s entire world of education with the power of a first impression. There will be many teachers that follow–classrooms, policies, tests, memories of projects and field trips, routines, and over the years a cumulative folder that grows fatter with reports. But there’s something about that very first classroom, that very first person who believed in you and knew you not by a student number–but by your first name. Your favorite book. The way you hold your pencil. How you learn. What grabs your attention. How it takes you a little more time but, man, how you shine when you’ve got it.

I learned about the power of a first impression working in health care. In college, I had a number of jobs at the hospital where my dad worked–a hospital well-known for its incredible patient satisfaction reviews. Every employee, from valet parking assistants to cardiac surgeons, went through extensive training to provide exceptional patient and visitor service–to recognize that walking into a hospital automatically presented vulnerability and to recognize and respond to that vulnerability with utmost attention for every single hospital guest. I see you. I know that you might be anxious or scared and that you don’t really want to be here. I’m here to make it better. Assure you, support you, offer you a warm blanket, listen to you, connect you to the right place that can help. As a patient transporter, I was paid a lot less than, say, a doctor. but I was often one of the first people patients encountered as I picked them up from waiting lounges and patient rooms to take them to their procedures. I remember being told–and believing–that I might be the most important person that patient interacted with; that my presence, words and care could be the ones that changed that person’s entire hospital experience into a comforting and calm one. I had the power of a first impression. We learned that patients, without even thinking about it, expect that doctors are licensed, nurses are trained and that machines that keep your heart beating are working properly, but what they judge you on–what their entire health care experience is truly about–comes down to being seen. Feeling valued, listened to, loved.

Education is a lot like health care in that sense. I assume and hope I can certainly expect that my children’s schools are up to code–that teachers are properly trained and text books are up to date.  But what their entire educational experience is truly about comes down to being seen. Feeling valued, listened to, loved. I was reminded of that recently by another teacher and a parent of a child with Down syndrome when I had IEP Tunnel Vision: the document. Make sure it covers everything. Focus on the plan. The wording. The accommodations. The legal rights.

“Remember,” she wrote me, “an IEP is a fluid document that can be changed at any time. What’s better than a great IEP is a great team of teachers behind your student.”

Like health care, I know that I can’t control everything and that little minds are a lot like little bodies. But as we prepare for Nella to go to kindergarten and enter a much bigger world of friends, teachers and experiences that will continue to shape her entire world of learning, I’m comforted by the foundation that’s been laid by a lasting first impression–this little school and a teacher who has taught my child that she is incredibly capable of very big things, and that she is valued, listened to and loved.

I hug her teacher one last time yesterday, unable to let go. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

We’re now in the bridge between two sides–the ground that launched Nella into the public school system and the side that will receive her next year. And this week, we venture into another first impression as the principal of the school she’ll attend next year takes her hand and leads her to the kindergarten classrooms so she can explore and get comfortable. “We cannot wait to have her here next year,” the principal assures me. “We’re ready for her, Kelle. She’s going to do great here. We love her already.” With tears, I hug her before we leave. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

I know there is much to be done across the country in the world of education, especially when it comes to special needs. I’m prepared for setbacks and frustrations in coming years and understand the power of advocacy and the importance of growth and change. It gets harder every year, I know, and as the gap between learning pace becomes more prevalent and she’s more aware of her differences, I’m expecting it won’t be easy. But right now I have two powerful first impressions that drive our next step and cushion our new beginning.

I wipe my tears after our last goodbye yesterday and take Nella and Dash’s hand as we make our last walk of the year down the empty hallway of the preschool. But wait–I forgot to take a picture. We turn around and pop back into the classroom one more time. “Can I get one last picture of you two together?” I ask her teacher.

“Of course,” she answers as she kneels down and hugs Nella. And just before I hit the button, Nella shifts her eyes to her teacher and I see it–the all powerful look. Her worth, reflected by the one who’s revealed it to her this year.

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Teachers, you hold the keys to our everything. How you see them is how they see themselves.

Later at home, I read the letter Nella’s teacher wrote to next year’s teacher and rifle through projects and reports from the last few weeks. “She is wise enough to know that she’s at a different level than her friends, but smart enough to know that she can fit in,” her teacher writes. “She has a wonderful stubborn streak that reminds you that she knows herself well and won’t settle for less. She is most comfortable being treated as equal and being given the same responsibilities as her friends.” Oh, to have your children seen for who they truly are.

For this little one, I’m so thankful that her launch has her sails full spread, pushed by the wind, guided by those who love her.

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Our Children’s Future, an Investment with Guaranteed Returns: 3.21 Pledge

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It’s been five days since I returned home from visiting the students at Vanderbilt University’s Next Steps program. I never know how to tell these stories, especially when they’re as important as this one. I always hope for one of those writing experiences where I’ll sit down and the simple act of resting my fingers on the keys will complete some magic circuit, and the words will write themselves like they’re alive and have been waiting for someone to open the gate. It hardly ever works that way for me though. I have to think about it–scribble notes, cross them out, type, delete, type, delete, stare at the screen a lot.

And this one? This one’s important.

To begin, let’s go back to 2010. In a hospital bed where I had just been told, “We think she has Down syndrome,” I sat holding my tiny perfect baby girl, so consumed with fear and heartache that I could barely breathe. What could I hope for her? Everything you’d hope for your child. I soon realized that most of the things I want my children to have–happiness, opportunity, friendship, afternoons pedaling red tricycles in the driveway and evenings curled up next to me, laughing over the funny part in their favorite book–are available to Nella too, given extra time and some accommodations. But she only just blew out six candles on her cake, and we’re still cocooned by youth, the next step laid out for us on a clear path I can still see. The flailing feeling of “what next?” when the path disappears and you have to forge your own? While it feels far away for us, I know it’s there because too many parents have told me how hard it is to watch their child graduate high school and want the same next step their friends have–to go to college, keep learning, stretch their wings further to fly into the world of contribution and fulfillment and independence–only to be told, “You can’t. You’re limited. Your path stops here.” And for a long time, that was true. But in this great progressive world of big ideas and brave ones who believe in them and work hard for change, there’s a new path being paved. And you get to be one of the first investors. As a smart investor, you’ll need to know your returns, so come with me. Let me take you to Nashville, Tennessee where you get a first hand look at what this new path looks like.

This is my second trip with Liz, the founder of Ruby’s Rainbow, an organization that grants scholarships to people with Down syndrome. Last year we visited two students with Down syndrome attending West Carolina University, and this year we have a hefty schedule packed into two full days of observations, work visits and interviews, following a current student in Vanderbilt University’s Next Steps program as well as a recent graduate.

We begin our trip in the home of Matt Moore, a 26-year-old graduate of the Next Steps program who currently works at Best Buy, volunteers at Best Buddies and lives at home. We’re warmly welcomed early Monday morning by his mom who offers us coffee and hollers for Matt to come downstairs. We say hello and hug and explain to Matt that we want to see what a typical day is like and want to know all about his college program and how it’s prepared him for his current experiences. He knows why we’re here though–he’s been waiting for us.

The separation of time and different worlds between my little family at home and Matt’s grown-up life quickly disappears when I walk into Matt’s bedroom and see a giant photo of him as a toddler, propped against the wall. Somewhere along the journey, we’re all just parents in love, hanging pictures of our babies, dreaming of what their world holds for them, hoping it’s grand.

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The connection continues with all the photographs displayed in Matt’s home–so many of him and his sister.

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“That’s Katie,” Matt’s mom Sheila tells me. “She’s getting married this summer. She’s finishing school to be a special education teacher.”

I smile. “I hear that a lot from siblings with kids with Down syndrome.”

“I asked her, ‘Are you sure you want to do that?'” Sheila went on, “‘It’s a lot of work.’ But she’s determined. She said, ‘It’s where I can make a difference.'” Sheila chokes up which makes me choke up, and I’m glad somebody gets choking up out of the way this early in the morning because I’m emotional and don’t want to be the first one.

Matt continues his daily routine as we ask him questions, snap pictures and roll video. He’s unphased by our hoopla yet proud to talk about his job and his recent college experience.

“How did you feel walking across the stage when you graduated?” we ask him.

“I felt proud my family was there with me,” he answers.

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“And we are so proud of you,” his mom adds.

Matt tells us all about the Next Steps college program–about the courage he gained, the skills he learned, the student ambassadors who helped him with planning and friends, homework and tests.

“The program changed Matt drastically,” his mom tells us. “I remember picking him up after his first day and he said, ‘Oh man, I want to live here. I want to stay on weekends.’ He wasn’t the same young man coming out of that program two years later than he was going in. He’s more confident. Independent. Loves life.”

“We have to work our schedules out just so he can get to all the events he’s invited to,” his mom continues. “And 26 years ago? We had no idea. We just didn’t know what to expect.” Sheila stops and starts to cry. “It’s amazing. We never dreamed this would be the way it is.”

I hear more crying next to me and look up to see Matt. He pulls his glasses off, wipes his tears, and looks at his mom with a look of love I know so well now. “You did good, Mommy,” he tells her.

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Matt finishes packing his lunch and grabs his Best Buddies shirt for his volunteer job he’ll be doing after work. He proudly points to the back of his shirt, “It says STAFF. That’s me.”

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We drive him to work and follow him in to the chorus of high fives and “Good Mornings!” as his coworkers welcome him at the entrance.

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“Hey Matt! What’s up?”
“Saw you at the Vanderbilt game the other night. Did you see me? I was waving and yelling your name.”

Matt introduces us to his friends and leads us to the employee lounge where he tucks his lunch away and prepares for work.

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Taped next to the door in the lounge is a newspaper article about Matt, and if you look closely, you can see where he signed it–MATT, right there in the corner.

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He wastes no time–clocks in, looks at his schedule and heads to customer service where a stack of inventory is waiting to be sorted and taken to the back warehouse.

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From watching Matt and talking to his coworkers, there is no doubt that he is a valued contributor to his workplace.

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He admits it can be overwhelming when customers stop and ask him a lot of questions, but his manager has a game plan for when that happens–find someone who can answer the questions he can’t. But for the job he’s hired to do? Move inventory, stock product, help customer service employees keep a smooth-running ship? He does his job well.

“Let me put this way,” one of his managers tells us. “I have a budget for labor, and I take hours away from someone else to give them to Matt. I wouldn’t do that if he didn’t perform his job well.”

“He is the highlight of my day,” says Scarlet, one of his coworkers.

“Employees love him because he stops to say hi and ask if they need anything,” Kyle, another manager explains. “And he’s been asking to learn some new skills. He knows how to do the job he’s been assigned to well and he says he wants to expand what he’s able to do here.”

“Are you going to take him up on that challenge?” I ask.

“Absolutely,” Kyle answers. “I’ve already been thinking about where else he can put his skills to use.”

From our morning at his home and workplace, it’s clear Matt feels fulfilled by his work and contributions. This theme continues when we visit Best Buddies later where Matt stops by to finish a job he had started earlier–some handwritten letters to sponsors. He has his own desk, surrounded by framed pictures of friends and family, and tells us Best Buddies is where he met his girlfriend, Olivia.

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We connect with Olivia later that evening when we meet up with other Next Steps students and their families at BB Kings in downtown Nashville. Olivia enters the restaurant, and Matt lights up, excusing himself from the table to welcome her.

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The parents sit at one end of the table and we join the students at the other but aren’t sitting long before the music calls us, and we’re on the dance floor, shakin’ it to a Blues band. This is my church, by the way. This is where all the sleeping parts of me are awake.

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I ask Matt and Olivia and Jason, another student in the Next Steps program, the same questions I’d ask any other college student or young dreamer in love. What’s your favorite class? How’d you fall in love? How often do you see each other? Where are you working right now? What’s your dream job?  They are proud to tell me about their classes, what they’ve learned, where they work, and when it comes to the big question of “Where do you want to be?,” they all answer with hope: I want to be independent.  

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That goal is clearly becoming closer with college programs like Next Steps at Vanderbilt University. We start our day early Tuesday morning on the campus of Vanderbilt where we see the program in action. Jason, a current first-year Next Steps student, is meeting with Taylor, one of his student ambassadors who helps him with homework. They are watching a TED talk on Jason’s computer, a weekly assignment for Next Steps followed by journal writing about what they learned.

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“Next Steps is one of my favorite things I’ve done at Vanderbilt,” another ambassador tells us later at lunch. “These students have become my friends. I’m not just here to help. This is a mutual relationship.”

It’s the mutual relationship that interests Dr. Carter, a special education professor we meet with later in the day. Dr. Carter not only teaches regular classes (some, like “Transition to Adulthood,” of which Next Steps students have chosen as their regular ed classes to attend) but is involved in research that captures the impact of university programs for individuals with intellectual disabilities.

“I’m interested not only in the story of why it matters to students, but as a campus as a whole,” he explains. “How is this good for peers? How does it make the university experience?”

As one of the leading research facilities for individuals with disabilities, professors and students at Vanderbilt University’s Kennedy Center are conducting research in hundreds of study fields that involve disability. For years, Dr. Carter has studied work places, faith communities, K-12 schools and colleges that practice inclusion.

And what they’re finding? “This is changing perspectives and outcomes of everyone,” Dr. Carter reports. “It’s proven that peers who learn along side students with significant disabilities go up a letter grade and a half or stay an A if they were already an A.” Research involves years of data collection, classroom observation and now includes follow-up studies with students who are involved with peer mentoring. Peer mentors report new friendships, a heightened sense of self-awareness and many times an experience that changes their career path.

“Of course we have to get our faculty on board,” Dr. Carter explains, “but it’s happening.”

Fifty plus professors have agreed to let Next Steps students be a part of their classes and make accommodations for their learning and while not all classes are suitable, most of the professors who have agreed to include students with intellectual disabilities report that the experience made their classes better.

As Dr. Carter explains, “Having a student with intellectual disabilities in a college class helps professors make a universal design for instruction and change their ways of teaching that ultimately benefits ALL students. It reveals things you might have overlooked in your teaching and brings a great sense of satisfaction when you see those students thrive. This is shaping the entire undergrad professional experience.”

I ask Dr. Carter the question I ask everyone in special needs education: “Why special education? What brought you here?” I expect the same answer I hear from so many–someone they met who changed their life.

“It’s a long story,” he answers, “But yes–there was someone I met. A friendship years ago. For once, someone didn’t care about my accomplishments or anything else I did.”

The current employment rate for adults with disabilities in our country is 15%. Graduates of the Next Steps program? 87% paid community-based employment. It’s working.

“Studies show that if a parent truly expects their child to grow up, contribute and work,” Dr. Carter tells us, “the odds of that happening increase 6-12 times.”

To grow up and contribute. To be known. To be needed. We all want that.

Success with Next Steps has opened new doors for Vanderbilt University. The program recently received a $1.93 million grant from the U.S. Department of Education’s Office of Post-secondary Education to expand the 2-year non-residential program to a 4-year residential program.

What do the students think about that? Well, we had dinner with them Tuesday night, and it was unanimous. They all chanted, “We want dorms! We want dorms!”

It’s those chants that stay with me as a mom. The voices from so many students who’ve told me they want to go to college, they want jobs, they want to live on their own. The parents ahead of me on this journey who’ve prepared me: “Nella’s going to want this too. They just want more.”

And my friend Liz and Ruby’s Rainbow? They’re giving them more–$85,000 to 32 scholarship recipients last year and with your help, even more this year. You should see Liz in action. She lives and breathes this organization. She knows all the recipient names by heart–where they’re going to school, what job they’re pursuing. She talks about them like they’re her own kids, and in a way, they are. One of last year’s recipients, Paige, called Liz at 10:00 the other night, and Liz excitedly took the call from our hotel room. “It’s Paige! I’m taking this. I know why she’s calling–she wants to read me her essay.”

You should see the way these students and their families hug Liz when they see her–the thank yous for believing in them.

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It’s the most beautiful, promising thing to be a part of.

And YOU? You get to be a part of this too. The path to change and a better life and more hugs like these and stories like Matt’s need more opportunities, and we can help provide them. For everything you’ve ever dreamed for your child, for any emotion you’ve ever felt reading here, for the way you can possibly relate to a mom in a hospital bed holding a new baby, hoping for her happiness or for a young man dreaming of going to college like all of his friends–can you funnel that into a small donation of $21 to help Ruby’s Rainbow grant more scholarships this year?

 

Here’s how the 3-21 Pledge works. World Down Syndrome Awareness Day is March 21–so we have two weeks here.

1. Click here to make a $21 pledge.
2. Pledge to be kind and considerate to people of all abilities (I know you got this one!).
3. Share your pledge with 3 people (or more!) and ask them to do the same.

This year, the 3-21 Pledge visually tracks your donation and people who donate from your link, so you can see exactly how much your pledge grows, a true testament to the fact that one person can make a huge difference. Social media creates wonderful momentum for missions like Ruby’s Rainbow and the 3-21 Pledge, and they can’t make this happen without you. So, would you please share? Make it personal–tell your friends why it matters. It’s not just for our kids–it’s for ALL kids.

If you click on one link on this blog, please make it this one. As Dr. Carter said, this is changing perspectives and outcomes of everyone. We get to to this, together. Invest in this, and your returns are guaranteed.

The future for my girl is looking brighter.

Do I still worry? You bet. But I know we’re not alone.

Thank you, thank you, thank you for coming with us. 

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