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If You Build It, They Will Come: If you read any post here this year, please make it this one.

When Nella was born, I quickly reorganized my expectations for her life with a lot of okays.
It’s okay if she doesn’t go to college.
It’s okay if she doesn’t drive a car.
It’s okay if she doesn’t live on her own or have children or check off all the boxes on “The Life of a Successful Adult” list that the world has created.
Because what matters most is love, we told ourselves. Let her be happy, let her feel included, let her learn, live a fulfilling life and, above all else, let her feel loved .

We were inundated with beautiful stories from families who love someone with Down syndrome–positive stories, hopeful stories, stories that told us we were going to be fine, that Nella was going to be fine. I hung on to those stories and to the pictures of children’s smiling faces that parents sent me. I saved them in my phone and pulled them up when I needed to be reminded that everything was going to be okay. See Lilah. She’s happy, her mama says. She has friends and is loved and look how beautiful she is! Everything’s going to be just fine.

As I talked to more parents and was slowly introduced to the world of adults with Down syndrome, I heard the same–that the joy outweighs the pain. But there’s definitely a change of tone when you talk to parents of adults–a wisdom perhaps, laced with a present sorrow for a deeper understanding of what their children have to work so hard for–good jobs, a social life, independence.

We’re cheerleaders, the new parents, bound by optimism and fueled for a good several years by jetpacks of love that are refueled simply by our child saying a new phrase or busting some dance moves or curling up to us on the couch for that embrace we know too well–the one “low muscle tone” can only begin to describe because it’s less about a physical explanation and more about a staggering feeling that’s meant to remain mystical.

Those parents of adults are the varsity team. They too cheer us on and share our optimism, but they know things, things we can’t understand until we get there. I know from talking to them that there’s a lot of support for little kids, that schools provide many educational and social opportunities, but that about the time kids normally start teetering on the edge of the nest, sniffing out the world that whispers to them to fly, it gets hard. It gets hard because they want to fly, they were born to fly, but suddenly support is harder to find. Or it says “fly a different way.” While friends have been excitedly opening acceptance letters, meeting roommates and packing boxes for life at college, kids with Down syndrome have been waving goodbye from the front porch, often wishing for that same excitement but believing that it’s not available to the them.

But what if it was?

I’m going to ask you to come with me on an adventure for a moment.

Come with me to North Carolina, to Western Carolina University, a college campus tucked in a valley of the Tuckasegee River between the Blue Ridge and the Great Smoky Mountains.

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Several years ago, a young woman attending a special needs graduate course there piped up at the end of class and asked her professor, “What is this college doing for inclusion?” The professor thought a moment and then turned it into a homework assignment (“The other students hated me,” she laughed.): Design and write out what you think a college program for special needs should look like.

If Field of Dreams taught us anything…

If you build it, they will come.

The students designed what became the University Participant (UP) Program, a fully inclusive 2-year program–full residence, dorms, classes, work, support, communication, goals, accountability–and soon found one student with special needs who wanted to come. “We were building the airplane as we were flying it,” Dr. Kelly Kelley remembers.

“So you built it,” I asked, “but how did you fund it?”

“Passion,” she quickly answered.

Speaking of passion, let me explain how I landed in North Carolina last week.

Right before Nella’s birthday this year, I received an e-mail from Liz, another mom of a little girl with Down syndrome. I had written a post expressing interest in organizations helping adults with Down syndrome, specifically in relation to post secondary educational opportunities. Liz responded, telling me about Ruby’s Rainbow, the organization she and her husband had just started in 2011, providing scholarships for people with Down syndrome to attend college. In four years, Ruby’s Rainbow has already helped fund 42 people’s college dreams.

The thing is, a lot of people don’t realize that “people with Down syndrome attending college” is even a phrase. And how can we raise money for it if people don’t know it exists?

I wanted to help bring attention to the incredible work Liz and Ruby’s Rainbow is doing, but I was also curious–what does this even look like?

One phone call with Liz, and we were scheming. Let’s go to college. Let’s go visit two Ruby’s Rainbow scholarship recipients and let them tell the story. Let’s peek into the window of possibilities for our own girls. Let’s see what can happen when one person begins with a question: “What are we doing to help?
Thanks to an incredibly accommodating college that quickly set up a full day’s agenda to give us a thorough day-in-the-life experience, and two individuals who were eager to share their story with us, we were on our way early Wednesday morning last week to make the two-hour drive from our hotel to Cullowhee, North Carolina.

Our first stop: The Office of Residential Living where Zach gets paid to work 10 hours a week as an office assistant to supplement his college experience. A handsome young man, sharply dressed, stepped away from his computer to greet us when we arrived. He shook our hands and introduced himself, answered our questions about what he does and paused to answer the phone when it rang or tend to the front desk when his officemate asked for help.

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Promising to meet up with him later at his karate class, we left Zach at work and headed out to meet Ali, another UP Program participant with Down syndrome who works as a preschool teaching assistant. She warmly greeted us in the hallway, but didn’t let the introduction break her focus from the more important people there–the students who adored her. Together with Miss Charlotte, the preschool teacher who kindly shared instructional and guidance duties, Ali led her beloved preschool students in from recess and settled them down for a lesson she had prepared on polar bears.

“Polar Bear, Polar Bear, what do you hear?” Ali read each page with enthusiasm, stopping to look at pictures, carefully scanning the pages so that each child could see, and the students quietly followed her lead. After the story, she modeled how to make a polar bear craft from a styrofoam cup and guided the students through each step, kneeling to help them apply glue or add a googly eye when needed.

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When one student called for help, Ali walked over to assist. She stood behind the little girl and reached around her shoulders, like a hug, to help her glue a nose on. I caught a moment–as quick as a blink–but I saw it. The little girl turned her neck to look straight up at Ali above her, and she smiled this loving little thank you. I’ve seen that look with my own girls and their teachers before, so I’m qualified to spot it, but this one? It was so special.

It’s okay if she doesn’t have children.

Another teacher told us that they call Ali “the baby whisperer.” “You should see her at naptime. The little ones love her, and she can get them all to fall asleep.”

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We showed up at Zach’s karate class later.

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It was a long class in a warm gym, so we eventually sat down against the wall to watch, but Zach? He was focused. He completed the class just as good as anyone else, receiving feedback on his form and gentle adjustments from the teachers when necessary–just like the other students.

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From karate, we went to lunch at Which Wich? where ordering a sandwich isn’t the easiest task–so many choices, boxes to check off, paper bags to fill out. “Do you need help?” I asked Zach. “No, do you?” he asked. I did. Our table was soon filled with friends who stopped to chat. I had made a note to ask Dr. Kelley about how they made friends and if socializing was a problem, but it was clear that wasn’t an issue. Zach excused himself early from the table because he had a finance test in his budgeting class. “Good luck on your test!” a crowd of students hollered. One of his friends and an UP Program student employee pointed out that, while classes are audited for UP Program participants, for the most part, course work isn’t modified. “And Zach doesn’t want it modified. He wants to do the same assignment, the same test, the same projects as everyone else.”

Later we met with Dr. Westling who oversees WCU’s UP Program with Dr. Kelley. With decades of research and development under his belt, there’s no doubt the man is well-versed in special needs education, but it’s his passion that stands out.  “It’s a good fight, what we’re doing here,” he says.

“Forty to fifty years ago,” he explained, “even at the beginning of my career, adults with Down syndrome were living in institutions or, at best, group living accommodations.” Look where we are. “People are capable of having a very full life if you’ll let them and give them the guidance.”

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WCU’s UP Program focuses on person-centered planning, individualization and self-determination. “We don’t want to tell someone they can’t do what they want to do,” Dr. Westling added. So they help them, combining education with natural supports and people living on campus to provide a fully inclusive educational experience aimed at preparing individuals for employment and independent living. An entire network of volunteer students as well as students employed by the UP Program help provide support to the eight students with special needs who attend WCU every year.

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UP Program student volunteers and employees help with scheduling (the most impressive thing I’ve seen–a computerized, color-coded system that could run the world), homework, life skills and test support. This isn’t just a job or volunteer opportunity for these students. These people are their friends.

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“This UP Program made my college experience worth something,” Abby, an UP Program student employee, explained. “College isn’t just about hanging out. I feel like I’m helping a cause.”

Ashley, another UP student employee majoring in speech with a special ed minor added, “This gives me so much encouragement to go into my field of work. And it’s so great to watch their independence grow.”

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The students involved in running UP aren’t just special ed majors either. Augaly, a political science and international studies major and UP worker described perhaps one of the best things UP has to offer: “This has made me more aware of people’s differences. And not just disabilities–it’s not just about that–but people’s differences in general. We’re all different.”

Imagine a whole world of people who function like WCU’s UP Program: What is it that you want to do? I will help you get there. And it’s working. Most UP Program participants are matched with customized employment opportunities before they graduate. And not only that, if we continue to invest in these programs, state and federal governments will save money on group homes, work and assisted living programs (they’ve done the math) for overall success–less money, better lives, better living.

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Do the program participants get homesick? I wondered. Are they ever sad? Is it hard? Dr. Kelley smiled at my questions, “You’d be surprised. Most of them don’t want to go home. Ask them.” Jaylen, another program participant, answered, “This place is my family.” Later in the day, I watched Ali and Jaylen make plans with a few other kids to hit Hot Wing Night the following evening at a nearby bar. I listened as Ali and Abby made plans to study later, saw numerous hugs and fist bumps and overall observed the natural course of what happens when kids are given permission to freely fly.

I asked a lot of questions and took a lot of notes while I was at WCU. I thought about how we could help Ruby’s Rainbow provide more scholarships so that more students who want to can join their friends at colleges that have these programs instead of waving goodbye from the front porch. I thought about how I could tell you all the story of our trip, how I could gather all the necessary information, and I didn’t know how to do that.

And then we visited Ali in her dorm, and suddenly I knew how to tell this story. I can tell it as a mom because that’s what I know. That’s how this whole adventure began–holding my baby in the dark of the night, so desperately in love with her but so deeply hurting for the future I thought she lost.

I was that mom again when we knocked on Ali’s door and she opened it smiling. Hope spilled out of that room like a tidal wave, practically bringing me to my knees.

She was just like any other college student, showing us her room which, she admitted, she had cleaned up just for us. Jewel tones–a hot pink bed spread, a color block rug, a fringe heart pillow, with her name embroidered on it, that looked like a child’s lovie.

“This from when you were a kid?” I asked.

“Yeah,” she smiled.

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She was just like any other college student with her alarm clock and iPod dock, text books neatly organized on a bookshelf, pictures on her desk. I picked up a photo block and pointed to a pretty lady hugging her in a picture. “Who’s this?”

“That’s my mom.”

She was just like any other college student with her laptop and mini fridge with the scattered magnetic poetry. With her shared bathroom and her loft bed–the one she volunteered to climb up and sit on to show us what it looked like.

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She was just like any other college student until I saw, taped to her wall, a newspaper article with her photo. That’s when I lost it. That’s when I was a mom, standing in a field of dreams, knowing exactly how we would share their story, all of our stories…

…Dreams Coming True for Hickory Youth.

It could be Lainey. It could be Nella. It could be Dash. It could be anyone. And it hurts so good to know that dreams come true for youth.

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WCU isn’t the only college building fields of dreams. There’s more. And there will be more if we continue to ask, like Dr. Kelley, “What are we doing to help?”

Here’s the thing. Today, there is something you can do to help. Liz and her husband have been working so hard to raise money for scholarships. They dream of more “Dreams Come True for Youth” newspaper articles taped to dorm room walls and maybe someday a world where news like that doesn’t even make the papers because it happens everyday. They want to call more families to tell them, “We can help you!”

World Down Syndrome Celebration Day is in 11 days–3/21 for three copies of the 21st chromosome.
Ruby’s Rainbow wants to raise money for 21 new scholarships by March 21st, and we need your help. They’ve created an easy way for you to donate and share–take the 3/21 Pledge.

3 Easy Steps.

1. Donate just $21 to Ruby’s Rainbow.
2. Pledge to be kind and compassionate to individuals of all abilities.
3. Spread the word. Ask three friends to take the 3/21 pledge and donate $21.

Share it in your social media channels, send it in your e-mails. If you build it, they will come.

Fifty years ago, adults with Down syndrome were living in institutions. Wednesday night, I cheered two on in a basketball game with their college friends.

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Fifty years ago, parents were told that their child might never talk or go to school. Wednesday night, I watched a room fill up with students who came to hear their peers with Down syndrome deliver speeches they wrote about ending the R-word. I listened to Zach tell me about the half marathon he’s planning to run. I watched Ali read a book to a captive audience of preschoolers.

Fifty years ago, parents feared bullying and a lack of support. Wednesday evening, I watched 100 students sign a pledge to stop using the R-word. I cried as they turned their backs to face a wall so that their friend’s nervousness would subside as she started her speech. I marched with a passionate group of young people across campus as they cheered for their friends, for the truth that everyone matters.

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Five years ago, I cried with the news of my own daughter’s diagnosis because I thought our dreams for her had been shattered. Wednesday night, after an emotional day, Liz and I held up two plastic cups in our hotel room, shared a tearful hug and made a toast: “To the future of Ruby’s Rainbow. And for Nella and Ruby and their friends and all their dreams.” Last week, my friend picked me up from the airport after my trip and dropped me off in my driveway where I could see Nella peeking through the window of the front door. She jumped and smiled and waved, realizing I was home. I couldn’t open the door fast enough and was greeted with a hug that felt like hope. I pressed my lips against her hair and held them there. Sweet baby, I love you. You would have loved what I just saw. 

I’m so thankful for the questions people are asking and for the great work they are doing to respond to needs. I’m grateful for Dr. Kelley who believed that passion was enough to get a dream rolling and for Liz and Ruby’s Rainbow who know that passion needs some back-up.

Can we back them up? Will you please help us build a bigger field of dreams and make the 3/21 pledge to celebrate World Down Syndrome Awareness Day? 

We can do great things, we’ve done them before.

It’s quick and easy. Click on the 3/21 Pledge, fill in your name and e-mail address on the bottom, click submit and a page will pop up requesting your credit card information. Click submit. Done. Then share with three people and ask them to do the same. You just helped change the future.

Thank you so much for coming on this journey with us. Anything is possible. Dreams come true for Hickory youth…for any of us who follow through with our passion to help.

Fly away, little birds. Fly away.

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Comments

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  1. Thanks for for taking us on that beautiful college tour, Kelle. It is such a blessing to travel on this journey with you and Nella, learning that world is more flexible, kind, and redeemed than we often think. Thank you for inviting us into this good work.

  2. Hey Kelle! Great post! As a WCU alum, I just wanted to clarify that it’s Western Carolina (not West) for anyone who might be googling or searching for more information. Anyway, keep being awesome! I love reading your posts from here in North Carolina – and I’m even more proud of my alma mater. Gooooo Catamounts!

  3. I am crying at my desk at work. I am so happy that dreams can come true for every single person on the planet. No matter what.

  4. Thank you for taking us with you on this beautiful journey! I’m also crying at my desk. Off to check out the 3/21 Pledge!

  5. well. so much for my mascara. we volunteered for years for Special Olympics, and this? this is so much more than special. thank you for bringing it to the interwebs so we can all share!!!

  6. I am SO excited to see my Alma Mater here! Long time reader of yours and Western Carolina is my heartbeat- so much pride in seeing this program being offered to give each student opportunity and a college experience.

  7. As a mom of a little blue eyed boy with DS who LOVED every second of her college experience, this post has overwhelmed me with hope. Spreading the word far and wide. The work of these young people is just insanely fantastic. THANK YOU to them and to you for bringing it to our attention.

  8. I’m so happy that this is happy. Genuinely so! But I couldn’t read it through. I know that this is not for my son, and that there never will be a place like this for my son. Who is now 18. There is nothing. No genuine friends, no “programs” that accept him AND suit his needs even remotely.
    The term “special needs” is painful for me. I have heard so often things like, “Of! You have a special needs child. They are so loving and wonderful. You are so lucky to have an angel.” For so many “special needs” = Down Syndrome or similar intellectual disability, or someone with a physical disability. Not kids…. who grow up into adults… who have psychiatric issues comorbid with their autism, whose mothers have never once in their lives heard “I love you” or received a hug from their child, who harm their siblings, and so much more. Who may not have intellectual disabilities, and technically have an average IQ, but can’t learn or function fully, and are PAINFULLY aware of how excluded and different they are, how close yet so far. No anesthesia of intellectual misunderstanding. And, understandably, frequently suicidal. They don’t fit the sweet, magical picture. People assume, oh, there are programs for “those people”. “Special needs” programs. No, special needs programs do not want to deal with them and their behavior issues– as if they can help them. Even as kids. And then they grow up. Very painful when the world makes no meaningful place whatsoever for your child, but sees programs like this and assumes their all taken care of. Here’s to a world of true acceptance and true, genuine place for them someday. Maybe. But not in his lifetime. He’s a throwaway is the message we get. Happy tears for this program, and more sad as well.

    • Marian–I just wanted to chime in to let you know that you were heard. I do not have children, nor do I have direct experience with people with DS, but there is a ‘special needs’ school near where I live and I have seen the types of children you describe as your son. My heart goes out to them and to the parents and caregivers entrusted with their health and well-being. And, of course, to you.

      While I agree it is beyond wonderful that society is becoming more inclusive of ‘high-functioning’ DS individuals, such as described here, I think it’s also important for voices such as yours to be heard, in that, DS individuals shouldn’t be ‘romanticized’ as the sweet, cheery, beautiful loving, angelic cherubs that the mainstream media paint them to be. They are human and, as such, will fall along the entire spectrum of humanity–as do we all.

      I have no words of wisdom, or advice, or comfort for you. I just wanted to let you know that I read your words, and your pain is palpable. May you find some measure of peace and joy in your life. Thank you for being one of those beyond-special human beings that didn’t ‘throw away’ such a child.

      Remember to always take care of yourself and the rest of your family as well. You are just as precious as the son you so selflessly choose to love.

  9. I have a 23-year-old sister with Downs. What strikes me most about this is the respect and care with which these students are being treated by their non-DS peers. That is where the magic is happening. I would give anything for my sister to have access to that same kind of environment.

  10. done times two, in memory of aunt teresa and my dear friend betsy, both lovely ladies who rocked that extra chromosome. they each would have loved this program and a chance to go to college.

  11. Amazing!! I am crying tears of hope and joy for all the future students of this university!

  12. Aww!! I wish I had known you were going to be here!! I’ve been following you for years, and WCU is not only where I graduated from, but also where I grew up (from Sylva, NC and proud of it!). I love WCU. Yay Catamounts!!!!!

  13. Beautiful and inspiring. Had to share.

  14. I pledged! Looking forward to a day when special needs students are living their whole lives with their peers (in college, in the work force and beyond). It makes my heart happy to see so many college students rallying against the R-word.

    http://thedressblues.blogspot.com/2013/06/retarded.html

  15. I LOVE THIS! I did a year of service through Jesuit Volunteer Corps at an organization called STRIVE. The year before I started, they started a program with the University of Southern Maine called STRIVE U (this was in 2005). It is a 2 year program for individuals with developmental disabilities and I had the pleasure of attending the graduation for the first class in 2007. It’s been great to see the program grow and thrive over the years. So glad to see that other universities are doing something similar!

    http://www.pslstrive.org/striveu

  16. In a puddle after reading (and making my pledge)! As a grandmother to our precious Sarah (5 yrs) and someone who has followed Nella’s journey as well, I’m overwhelmed with the possibilities for our angels!
    Going to SHARE on my social media outlets RIGHT NOW!!!
    Thank you, Kelle, for your unwavering transparency!

  17. Thank you so much for this article. My son is 16 and dreams of going to college just like his older sister and brother. Programs like this will make it possible.

  18. Amazing story! I love that there is a scholarship fund and that colleges are developing programs to help these incredible kids succeed. I donated and shared this post on my FaceBook page and encouraged my friends to donate as well. Good luck!

  19. I’m a blubbering mess over here. Can you imagine how much can change, for the better, by the time Nella is college-aged? How many more activities, programs and possibilities? These wonderful people are paving a way to even more wondrous opportunities.

  20. Clemson University in Clemson, SC also has a program called ClemsonLIFE. You can find out about it here http://www.clemson.edu/hehd/departments/education/culife/

  21. Shared and spread and donated! Today, Kelle, you totally used your powers for good :) Well-written, important stuff here.

  22. While inspiring gets thrown around a lot in the world of intellectual disabilities, it could not be more true here. If only all colleges were as inclusive and accepting as this one! PLUS, they’re doing the r-word and sports with Special Olympics, which connects these students with a global movement. The connections made between athletes and those without ID is incredibly live changing.

  23. Omg THIS made me cry —> “Sweet baby, I love you. You would have loved what I just saw.” YES!!

    So here’s my question for this program and others (we have one here in the DC metro area at George Mason Univ) — different programs have different requirements for acceptance. Does admission require a regular HS diploma? Or can you get in with a modified diploma? That is a very real issue that many of us face as we are having to make decisions in school about “which track” to put our child on, as they struggle with the regular curriculum.

    Great post, sounds like an awesome set up! I understand the need for an org like Ruby’s Rainbow because they programs are very expensive usually. The GMU program is insanely expensive, and you are paying way more than regular tuition. You are paying for all the support and accommodations, etc — which many families simply cannot afford. College alone is crazy, let alone adding on all of these other costs to support our kids.

    Lots to ponder..

  24. I can hardly read this story because of the tears in my eyes. This place is amazing. I have loved seeing your sweet girl going from a baby to the little girl. This has to be so encouraging to you.

  25. I was just brought to tears. Thank you for sharing this with us. I will be sure to spread the word. I love seeing how our world is changing for the better and allowing EVERYONE to experience life as they should.

  26. I love Ruby’s Rainbow http://www.rubysrainbow.org …and Liz and Tim are doing great things…an amazing story all the way around. We heard about the group and my firm immediately became a corporate donor. Really great to see directly how those funds are making a difference.

  27. I’m so glad I got to read this! I shared the link with my boyfriend and his family, as they are all WCU graduates. His parents responded and said they actually even know Zack. He has been their neighbor his whole life.

  28. You never cease to amaze me. You always, yes always, find one more way to help. I get so excited and just cannot say no. Thanks for asking!

  29. When my oldest brother was diagnosed with Cerebral Palsy in 1955, my parents were told to institutionalize him. They did not. Larry has lived a full and productive life. This article makes my heart sing for others. I am happy to donate to 3/21, the day of my oldest daughter’s birth.

  30. I have tears in my eyes after reading this. Tears of joy and tears for all my children that haven’t had this opportunity.( I worked 30 years with Special Needs)My life is richer for having known these special people. I will share this on my FB page.

  31. I am in tears after reading this!! Wow, what a fabulous, whole-hearted program. Thanks so much for sharing your experiences there, Kelle!

  32. Can I add one more “it’s okay if…”??

    It’s okay if she never walks the runway in NY Fashion Week.

    Hell no it isn’t! Nella is GORGEOUS and by God if she wants to be a model, she can–kudos to Carrie Hammer!!

  33. Just found your blog through, Momastery. I have no direct connection with someone who rocks that extra chromosome – but man, do I want to help someone who is rocking’ it, to be able to experience college. Thank you, Amy for your wonderful tour of such this great college program, for introducing me to Eric and Ali and all those other college kids who are gaining so much from their involvement in that program. I could go on and write more run on sentences, but really just, thank you and Liz and her husband and Ruby’s Rainbow. I’m so honored to help support this effort. Thank you.

  34. These are very special students! Did they discuss all the interventions and therapies they had with the help of their parents and educators throughout the years? I have 2 friends with young ones with DS- they work so hard to help their children with DS get to their full potential!

  35. This brought tears to my eyes, as the mom of a 26 year old handicapped son (legally blind and speech impaired) who would LOVE the opportunity to go away to college, I cheer on this organization and you as the person helping tell the story! Our son had a wonderful high school adventure at Fort Campbell high school…it was so amazing…there is a movie coming out about the high school football coach next year that helped even my son have an amazing experience there. (Movie is going to be Son’s of Soldiers). But honestly since high school, we haven’t been able to find a program in our area for our son as an adult with special needs. This has inspired me to look harder and to not give up. His goal is to get his college degree like his siblings…so I think it is time to continue my research. We are an active duty military family and moving is part of our world. As we move from the NE to the NW this year, I will be asking a lot of questions to see if we can find a program like WCU’s near us too!!! Thanks so much for sharing and inspiring. I just donated my $21 to Ruby’s Rainbows too. :)
    Pam from The Patriotic Pam :)

  36. I just found my daughter’s college program! Let’s hope one is built a little closer for this mama’s heart but seriously this is incredible!!

  37. I love this post! So amazing that this program exists and others are starting similar programs!

    http://shilohsstory.blogspot.com/

  38. Kelle, thank you for sharing this story. I am absolutely blown away. My daughter is intellectually disabled. Since her diagnosis at 7 years old, I have also faced the same fears and questions you have. My baby is 14 now and the transition from high school feels like it’s right around the corner. We’re already thinking about those next steps. This program is amazing. She deserves something just like this! And I can only hope, pray and dream that I can find something like that for her. I had already been brainstorming ways to create better opportunities for her and her peers in our community. But this….this is beyond my wildest dreams. It’s everything a parent hopes for. Valentina

  39. At the University of Alberta, Canada, we have a similar program:

    http://www.oncampus.ualberta.ca/ProgramDescription.aspx

    It is a fantastic program. My cousin, who has DS is in this program. She is doing a certificate in Early Childhood Education. She’s always had a job, through high school and now university. It was absolutely thrilling for us when we attended the annual family picnic and she announced, loud and proud to anyone who’d listen “I’m going to college!!!”.

  40. I’ve been a forever reader of yours and this post may be a new favorite— When I graduated from Western in 2006 and left Cullowhee, I knew what a perfect little place it was. This post reassured that feeling. Thanks for sharing this!

  41. I love this. Absolutely love it. It gives me so much hope for my son!

  42. Tears!! So amazing. What an incredible program and an incredible school. I love this so much – thank you for letting us know about this fantastic school and their program. It has made my day!! :)

  43. Wonderful! Just took the pledge.

    Here’s my coincidence with stumbling upon this on Facebook today. I just finished singing a concert this past weekend with Terrence Mann (He was one of the professional soloists; I sing with the Milwaukee Symphony Chorus), who in addition to being a broadway star is a professor of musical theater at . . . Western Carolina University! And he is so full of life, humor, and goodness–he was a joy to rehearse and perform with–I have to believe he would be into this, too. I wonder if there are any theatrical classes/workshops/opportunities for these young people to participate in or put on to share their stories and talents.

    I feel like I should be helping facilitate this connection. He wouldn’t know me by name, but he’d remember the Milwaukee Symphony Chorus.

    A connection os some sort should happen here.

  44. I’m reading this as I wait for a doctors appointment with two WCU seniors. (My daughter and her fiancé). I asked my daughter if she knew the kids in the pictures and my daughter said, “oh yeah, I see that kid all the time , Richie sees him at the gym too”. That’s all. No comments about special classes or special people. He is “just a kid” which is the best kind of kid to be. WCU is a blessing in many ways in our home. This sounds like a great program.

  45. Great post

  46. Nella :) She will knock your socks off I am sure.
    What a beautiful post!

  47. This is just the story I needed. It has touched me in ways I can’t even put into words. I’m not married, and don’t have children, and yet this just hits my heart in the biggest way. I didn’t even hesitate to take the pledge. Makes me want to work with my friend who just to a job with Special Olympics Montana to try to start something like this on the campus I currently work for.
    And every day I strive to end the “R” word with our student-athletes. Just last week I told one of our football players that he was much to intelligent to resort to using such a terrible word to describe something that has so many descriptors. My day was made when his teammate agreed with me, and told him that using that word is just hateful. That made my heart glow a little.

  48. Yet another post of yours leaving me in tears. As a primary grade special educator one of my biggest thoughts and worries is where these kids will go. It’s great that they’re making progress in my class and I understand all that they’re capable of but who else will see it, and who else will make sure they keep going somewhere? Reading this, especially with one of my DS students in mind, fills me with such hope and inspires me to be a better advocate for these guys who are capable of doing so much.

  49. I find this very captivating to read. A feel good story for parents with kids thst may have these opportunities. Sadly, I know two of my daughters with Down syndrome will never have a place that they fit in. My daughter will never have a social life. She will never speak full sentences. She will likely still be biting and pinching other students until she graduates. She is going to be a complete burden to someone. I love her unconditionally and wouldn’t change her if I could. Despite what the Irish Catholic Bishop said about people with DS, I think she is perfectly made. I wouldn’t want parents to have unrealistic expectations as some kids just never “get t
    here.”

  50. Thank you so much for opening our eyes! I just donated and I pray that others do the same. P.S. Glennon sent me here. :-) Thank you for taking such good care of her.

  51. This has moved me beyond words. Thank you for posting in detail.

  52. Albany,NY has the following program
    http://www.thecollegeexperience.org/
    at the College of St Rose. When my daughter received her bachelors degree last year, the participants of this program were graduated along with the traditional students, in the arena, cap and gown. What a beautiful show of inclusion!

  53. I see Zach on campus, often at the recreation center. He is into physical fitness. :) He also has a part-time job at a local grocery store, and he is unfailingly polite, friendly, and helpful. I’m impressed with that young man.

  54. Ah, this one got me. Tears of happiness!

  55. This post makes me so very happy. There’s hope for us yet. :)

  56. Thank you. This post was very encouraging. I don’t have a child with Down syndrome, but a similar diagnosis. I hope/pray that one day he’ll be able to attend a university like this. We’ve come so far and have so far to go. I can only imagine the possibilities for him 18 -20 years from now when he’s ready to spread his wings.

  57. I have never commented before but this post truly moved me to tears. I wish there was a program like this at the school I went to. You have a powerful way with words and I found myself wanting to know more about each of the 8 students. I will definitely be contributing on 3/21…also my birthday :)

  58. There are no words… Hope – what a precious commodity. This is beyond amazing!

  59. The daughter of a family friend recently completed a similar program at UCLA. She’s 25 and a few months ago moved into her first apartment and now has a job at an elementary school as a teacher’s aide.

    Pathway at UCLA Extension is a 2-year certification program “for students with intellectual and other developmental disabilities, offering a blend of educational, social, and vocational experiences, taught and supervised by experienced instructors sensitive to the individual needs of our students. On campus, Pathway students attend classes and participate with UCLA students in the many social, recreational, and cultural activities of a major university. “

    https://www.uclaextension.edu/pathway/Pages/default.aspx

  60. This is my Alma Mater. And this is what I posted on my FB status tonight:

    THIS IS MY ALMA MATER YA’LL – and my blog friend Kelle Hampton. I call Kelle my friend, but we’ve never even talked – but I’ve been reading her blog since before Nella was born. And I love Western. If I could travel in the car for more than 2 hours, I would go there more often. There is something about the smell of the mountains, the tap tap taping of the drums, the clock tower and the buildings – that just make it feel like home to me. It was my home for 4.5 years. So imagine my surprise when I see an inspiration like Kelle – who’s inspiring because she’s a MOM – and she loves from the tips of her fingers to the tips of her toes and she pours the most beautiful words into a blog post. If I had known Kelle was at WCU, I might have just made the trip just to see Western through her eyes – as a Mom of a young child that just happens to have an extra chromosome watching college students with an extra chromosome have a normal college experience. I love Western and now I love it even more.

  61. Failed to mention that I attended from Fall of 1995 and graduated in December of 1999. And I had a few special modifications for two semesters for test taking due to seizures, but then that modification got taken away because I couldn’t get to my neurologist in time. However, MOST professors that following year that knew me – still allowed me to have the test taking modification unofficially. (for me it was needed a quiet space to take the test – and the modification allowed for me to go a special area to take the test and a little extra time; although I never needed the extra time.)

  62. This is an inspiring story, but the programs mentioned here only seem to be useful to very high-functioning Downs Syndrome people. Many children that have Downs Syndrome can barely talk, and are far from being able to function independently, so such programs are way out of reach for them.

    • Marijke Fisher says:

      I HAVE A 44 YEAR OLD SON WITH DS, THERE WERE NO PROGRAMS FOR HIM WHEN HE WAS YOUNG, I HAD TO INVENT GAMES FOR HIM TO STIMULATE HIM, HAD TO FIGHT TO HAVE HIM GRADUATE FROM HIGH SCHOOL WITH THE SENIOR CLASS. HE HAS A VERY LOW IQ SO THINGS LIKE COMPUTERS AND PHONES ARE HARD TO DO FOR HIM WITHOUT ASSISTANCE. HE CAN NEVER LIVE INDEPENDENTLY SO EVEN IF HE WAS YOUNG NOW, THESE PROGRAMS WOULD NOT WORK FOR HIM. NOT ALL DS PEOPLE ARE AS HIGH FUNCTIONING AS PEOPLE THINK. NOW HE IS SLOWLY TURNING INTO AN ELDERLY MAN, OLD AGE COMES SOONER AND WE ARE THE FIRST GENERATION OF PARENTS WHO ARE NOT GOING TO OUTLIVE THEIR CHILD…..ANOTHER WORRY TO ADD TO THE WORRIES YOU HAD WHEN THEY WERE BORN…

  63. Wow.

  64. My friend Bonita died a few years ago.She was a wonderful special needs teacher. If she were alive her 60th Birthday would have fallen on March 21st. A beautiful woman also from NC.Your story warms my heart and would have made her woop with joy!! So glad I found your blog. Thanks Glennon.

  65. There are 217 college programs across the country that serve students with intellectual disabilities, and over 3,000 students with intellectual disabilities are enrolled in these college programs. Here in South Carolina, where I live, four of our universities offer secondary degree programs for students with intellectual disabilities: Carolina LIFE Program at USC Columbia; Clemson LIFE Program; Coastal Carolina LIFE Program; and the REACH Program at the College of Charleston. The goal of all of these college programs is to prepare students with intellectual disabilities to be independent, successful, well-educated and competitively employed. With these goals in mind it’s not hard to see that children with intellectual disabilities have the same hopes and dreams as their typical peers. While all of these statistics are certainly encouraging to me as mother to a son who has Down syndrome, I’m left wondering how I’m supposed to guide my son through a public school district that is committed to judging his abilities and defining their expectations for him based on his shortcomings into a secondary educational opportunity that I believe is his right. We have to begin our advocacy work in the preparatory years to ensure our children are prepared to succeed in these college programs.

  66. When I was pregnant with my second son, my 12-week ultrasound showed an indicator of downs syndrome. For the next 3 months, I had ultrasounds and blood tests frequently and ultimately the conclusion that my son didn’t have downs syndrome. When I found out, I felt such a mix of feelings that I still can’t describe. There was relief but so much more behind it. The possibility of having a child with special needs has forever changed me. I see my son when I see special needs children and I still can’t put into words the experience and my feelings. But thank you for sharing this and for the college and students sharing their story.

  67. What a Blessing! As a teacher of students with exceptional needs, I am thirsty for more information, as I plan to forward this information right away.
    I am wondering about admission requirements, etc..
    This is just another miracle – all because some persons cared and dared.

  68. Thank you for sharing. I have no doubt that my Reagan is going to be itching to get out of the house when she is 18 and it makes me hopeful that there are programs like this and people who support them. University of Iowa has a program as well. http://www.education.uiowa.edu/services/reach/home

  69. I recently attended a meeting that spot lighted a similar program at my Alma Matter, University of South Florida! My son Has Autism and Epilepsy, and several grants from Autism Speaks went into sending these kiddos to college for programs so similar to this one! I just love your heart and your family’s story! I think it’s awesome raising funds and awareness for Ruby’s Rainbow, and I’ll happily contribute! This is just awesome! Way to go North Carolina! Warmed my heart to read your sweet words about these kids, yours, and my own son! Special Needs Moms really are Special People :)

  70. @Marian, I wanted you to know that I read your words, that you were heard. Your pain, as a mother, is unimaginable. And I am sorry that all I can offer is, “you are heard.” But I will take your words and use them for deeper understanding and compassion with the people I encounter in life.

  71. Very very cool.

  72. Thank you, Kelle, for continuing to educate those of us who get overwhelmed with the thought of life after high school. It is much too close for us & we must stop burying our heads in the sand until we’re forced to make important decisions regarding Shelbi’s future. We are all blessed in this community to have you as our voice! xo <3

  73. I must confess that I did not read all of the comments, so forgive me if you know this already. Clemson University also has a simiiar program called ClemsonLife. My oldest son (CU Jr.) volunteers with the program weekly. My youngest son (8) has Ds, so participation for my CU student seemed like the natural thing to do. He loves just hanging out with them! If you ever watch a Clemson football game you are sure to see the managers, two of whom have Ds, and are fully included as part of the team! Our children were born during an encouraging time. It is exciting to see what the future holds for them!

  74. Although our little guy is only 10 months old, we are so looking forward to all of the unique and beautiful opportunities he may encounter. This is such a wonderful wonderful article. So very encouraging!

  75. I wish we could meet. I wish you could bring Nella to Delaware so the both of you can see the amazing things we are doing. You are an amazing mom…anything is possible, never say no she can’t, instead say “we will figure it out” Her PATH is going to be unique, awesome, and achievable!!!

  76. Kelle, thank you for doing this stuff and writing about it. I don’t often (ever?) comment but DAMN you inspire me, almost brought me to tears in the train to work this morning. Thanks for making me aware of the amazing things people do in the world.

    Sincerely,
    A geologist in Australia who will someday do something better with his life

  77. My Niece attends the program at George Mason and she is just thriving. She goes to class, has worked on Capital Hill for John Boehner and other congressmen/senators, she plays in many different sports, and she has a great boyfriend! We are so proud of her and her accomplishments. We are so grateful for programs like this. I will definitely support Ruby’s Rainbow

  78. tears flowing… My brother is hearing impaired, he lives in mexico and theres none opportunities flexibility or any inclusive programs available for him.. he’s the kid in the porch… this post hit me close to home… and warmed my heart to see some kids with special needs can dream and see their dreams come true.

  79. @Marian,
    Thank you for supporting this story and celebrating the outcome even though it may be different from your own child’s. I hope we can continue to understand how to help and support this group of moms more. Yes, you are heard. xo ~K

  80. @Anne,
    Your comment is a good one to print and put in the IEP folder! I hope more elementary, middle and high school educators and the people who make placement and support decisions can see these possibilities–can BELIEVE them, so that the path toward those goals becomes smoother.

  81. I am so excited to read this! It gives me great hope for my beautiful daughter who is 8 y/o. I too was crying at my desk and plan to donate and get involved in more ways! Thank you!!!!

    Joan Winkelhoch
    St. Louis

  82. Hello, I was emailed your beautiful story this morning and it brought me to tears. I helped develop and run a transition and postsecondary program for students with intellectual disabilities at a Florida college. I wanted to thank you for sharing your story, for reminding me that even on rough days at the end of the day it is all worth the battle. The battle to convenience individuals to include more students and the battle to get others to listen and see that dreams can become a reality. I am heavily involved in the change for individuals with disabilities and I strongly believe that one day regardless of a disability that everyone will have the same opportunities when it comes to their education and careers.

    I also wanted to share with anyone who is interested a site called Think College where you can search by location for similar programs in the USA. Website: http://www.thinkcollege.net/

    A huge thank you to all the parents, family members, friends and support systems who continue to be an advocate and teach their children to be their own advocates. Thank you for all that you do, and thank you for sharing your children with individuals like myself. You make our jobs worth getting out of bed for.

  83. Oh, Kelle. You’ve done it again. Your beautiful words and pictures have brought me to tears. Not even the pretty kind but the gulping, can’t get enough air to calm down, kind of tears. What an amazing program this is. Thank you for sharing it with all of us.

  84. Is it only for students with Down syndrome? My daughter who is Deaf plus (impairments on top of being deaf) really wants to go to college. Would love to find a place that would really work with her!

  85. This is simply beautiful.

  86. YAY! Fly little birds, fly!

    XOXO

  87. @Karla Spicer,

    While Ruby’s Rainbow is an organization for DS, the WCU program is not DS specific. We met several students in the UP Program who have different needs.

  88. Great article and comments. Glad for those who can take advantage; sad for those facing other challenges. My niece plays in the band at Western Carolina & loves that school. Wright State University, Dayton, Ohio has an amazing program for students with handicap needs – I mention this for those commenters who are seeking college for children/adults with more severe needs.

  89. This is absolutely phenomenal! What a beautiful, amazing gift this is to young adults with special needs. Thinking of the opportunity they have as a result, brings tears to my eyes. Thanks so much for sharing about this.

  90. I live a little over two hours from WCU (I’m actually from Hickory!), and I have a good number of friends who are currently at Western. I also have a dear friend who manages a camp for adults with mental disabilities and this past summer I worked as a counselor for the first time. I had a cabin of four boys (one of whom has Down’s Syndrome), and I can’t even begin to describe what a rewarding and challenging week of my life it was. I cannot thank you enough for sharing this program on your blog. Seeing such a beautiful program in an area that’s close to home brings so much joy to my seventeen year old heart. Kudos to you and everyone else involved.

  91. I cannot stop weeping, and was as I linked this post on my facebook account. I have sent an email to 3/21 to find out how to set up a monthly donation to them. Kelli, thank you for sharing Nella with us…you have softend this old hard heart.

  92. I never comment, but read your blog faithfully anyway. This one though… It made me cry. What an incredible program! I was a preschool teacher in my “working” years, and reading about Ali working with those sweet children tugged at my heart. I’m sure she is a gift to them, as much as they are to her. They will always remember Miss Ali, I’m sure. Thank for you for letting me take a glimpse into that classroom today.

  93. Hi there,
    I was wondering if you have ever thought of starting your own school for children with Down Syndrome? I love following your blog. I have a little one who is 6 and I am somewhat disheartened with our school system. I feel like sometime the “field of dreams” is talking to me saying “you can do this.” There are so many schools for so many special children I wonder why there is not one for only DS?
    Are there any? Just wondering what you thought.
    Thank you for all of your honesty and for your beautiful writing!
    Martha
    You can respond to me at marthamcgourk@aol.com
    if you have time :))

  94. I am a graduate of WCU. Now I am even more proud that the college values all people. Thank you for sharing.

  95. Toni Vitanza says:

    You should check out Clemson Life at Clemson University in Clemson, SC.

  96. BrittAny says:

    Thank you for this! How fantastic to see what people are doing every day to make a difference! This encourages me in so many ways. There are lots of us who care and lots who hate that r word and want people to stop using it. This was a fun read tonight and just what I needed!

  97. Amazing post in so many ways! You are very inspiring. I would love to share with you a post-secondary school program that we have been working on for a very long time now: it is called “Latch-On” (short for Literacy and Technology Hands-On). We are partnering with service organisations worldwide (currently in Australia, Ireland, Canada) to expand the reach of the program. I would love if you could have a look at it and spread the word if you can :) Feel free to email me at a.jarossay@uniquest.com.au if you have any questions. Thank you very much! – Alex

  98. Kelle, I haven’t read your blog for a few years. It was really sweet to catch up a little bit. This post about college is thrilling to read! What great hope for very special kids now!
    My brother, born in 1944, would have loved to go to college! He used to say he was like the pro-basketball player on TV. I think that was his way of saying his dreams!
    I will donate! Keep up the good work! Your kids are beautiful and your photos spectacular!
    Jean

  99. Christi Cossette says:

    This is such exciting news! My son is 15 months old and it’s amazing to know he will have options like this!

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