Saturday afternoon, after an hour of picking blueberries under the sun, my friend Laura and I took the kids to find a place to eat along the main street in the tiny town of Arcadia. Like popped turkey timers, their red cheeks, sticky hair and incessant whining informed they were done, and the only hope we had was food. A brick oven pizzeria looked promising, and upon entering, we were pleasantly surprised: right-off-the-streets-of-Rome charm enhanced by Italian music and made even more perfect by a table with a corner nook that housed our stroller. I pride myself for my glass-is-half-full outlook, but there isn’t a unicorn in the world sparkly enough to change my field of vision upon walking into a restaurant with all three kids at this point in my life. Even in the charmingest of scenes, I see an hourglass timer with a really big hole, and sand is falling fast. In my head, I hear “Relax, enjoy yourself, this is special” but it echos as “Order quick, brace yourself, get the back-ups.” Back-ups include things in the “restaurant bag” if I remember to bring it but more likely oyster crackers the waitress gives us and strange objects in the bottom of my purse that might pass as toys. They may also include, if necessary, iPhones and lipstick as well as jelly & sugar packets–or, as we like to call them table gifts (oh, you know you’ve done it). In this particular restaurant instance, after a delicious round of breadsticks and ten minutes of Level 2 Restaurant Behavior (1 being quietly seated and pleasantly engaged, 10 being “Check please” followed by the entire restaurant clapping as you leave), Nella and Dash started to get a little twitchy–but nothing a few shakes of parmesan cheese couldn’t solve. Shake shake on a spoon, they eat it, they like it, they ask for more. Shake shake on a spoon, they eat it, they like it, they ask for more. We made it through the pizza, with hourglass sand depleting about as fast as the parmesan cheese and R.B. levels increasing. They were tired. They wanted down. We took turns entertaining Dash, and I overcompensated for my frustration with instinctive people pleasing. This is what I do in kid restaurant situations: tip well, clean the table, get on the floor and pick up the cracker pieces, leave a note for the waitress like my dad always did growing up: “You were awesome! Thank you for being patient with the kids!”

As we approached a Level 10 and I was forced to call time of death on our charming pizzeria experience, I suddenly noticed the music that was accompanying our exit–my favorite opera aria, Nessun dorma, the exact part that gives me goosebumps–the part that makes me close my eyes and imagine I’m front row at the opera and Andrea Bocelli is singing it live, to me, and I’m feeling all the feels, crying in my black dress in the dark auditorium because my soul is being wrung out by the greatest musical crescendo that ever was (sorry, give a girl a gay dad….). It was playing in this little Italian pizzeria as I threw my credit card at Laura (“Here! Finish! Pay! I’m out of here!”) and slung a flailing child over my shoulder. Even in that chaos, I felt it–the music, the goosebumps, the depth of feeling buried in all moments, taking flight given a good accompanying song. It was both beautiful and humorous, how perfectly timed it was. We were the final act, storming out in a dramatic scene of crying children, thrashing bodies, stroller wheels catching on chairs and dining patrons making way for our exit as the music dramatically built and a tenor roared in Italian, “Vincerò! VinCEEEEERRRRRRò!”–which, come to find out, coincidentally means, “I will win! I will win!” I’ve taken it upon myself to make Nessun dorma (translated, “None Shall Sleep”) my three-kids-seven-and-under parenting theme song. All’alba vincerò!: At dawn, I will win!

Oh hey, Dash. I see your dumped powder all over that dresser and those pictures you tore down. All’alba vincerò.

If opera can make tragedy beautiful and people pay money to feel the intensity of emotions that come from putting music to stories, then surely we could all benefit from more music. More theme songs for dramatic exits, more arias for quiet days, more lyrics remembered and tunes recalled and symphonies composed in our heads to pull all the feelings from these fleeting moments.

There are lyrical nuggets buried in every event of life. Under the sun in the blueberry patch this past Saturday, I wiped sweat from my brow, grabbed an empty bucket and watched my kids taste their world while I hummed my own soundtrack–here comes the sun and blue skies shining at me, nothing but blue skies…

A playlist comeback of some current favorites (some old, some new) that we’re listening to on Spotify these days (right scroll down for more)…

…and some blueberry patch music in pictures.

Bee crate love–look at all those colors!

Catching blueberries in her mouth…

…and more music found in the downtown streets of Arcadia, lined with antique shops and colorful charm…

“Stand By Me” and “Under the Boardwalk” from an old juke box accompanied our ice cream…

And the final stamp of a good day: an opera house. Where beautiful music meets good stories.

Well, and our van, on the way back Saturday: crying kids, spilled juice, missed naps–good stories made better by the songs we listened to on the long drive home.
Turn it up. At dawn, we will win!

For months now, I’ve preferred to write at my kitchen counter, a tiny office space carved out at the last bar stool while my real desk in my bedroom is slowly taken over by stacks of books and papers and a thin film of dust. I can work amidst a mess, I tell myself—a half-truth that has been stretched into all sorts of creative bullshit to justify not being organized. “We’re creatives,” I tell my sister, “artists thrive in mess.” The fact is, this isn’t true. No one thrives in messes except maybe cockroaches. What happens when I shove dirty dishes aside to open my laptop is that the mess just gets louder in my head. And to avoid it, I shop online or read pop-up articles or find any and all distractive things to “get me inspired.” It’s all additional clutter, an anchor to unproductivity.

I’ve fooled myself into thinking that I have to clean the whole mess if I’m going to clean any at all, and since the whole mess is too big and I don’t have the energy to clean it all up right now, I walk away from all of it. It’s easy to do this in other areas of life as well—friendships and marriage, parenting and health, home projects and personal goals. Big messes are not singular though—they are compilations of small heaps that together look daunting and insurmountable but alone are just a few Windex squirts, a long run, a kind gesture, an “I’m sorry”, a procrastinated e-mail, a few paint strokes and a better choice away from noticeable brightness and a clearer path.

No matter how urgent everything else feels, I’ve been devoting time to cleaning small messes lately—things that I know are cluttering my brain, weighing me down to what I don’t want to do. I don’t clean them all, but one is better than nothing, creating powerful momentum to tackle more. A clean counter, a rinsed sink, a laundry basket follow-through, one e-mail, a put-off phone call, a chapter in a book that I will finish, a choice for the healthier option—nutrients over junk, people over screens. It’s not a transformation—that’s far too intimidating a term for me that comes with the expectation of cleaning all the mess, of fixing all the “be betters” in one fell swoop. But I’m good at celebrating the small things, be it little people, little moments or little messes cleared for good things to happen in the small space created.

The only mess I can work amidst is one I’m making efforts to clean, however small those efforts may be.

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Enjoying this week…

Brave knights.

Noticers of nature.



Generous givers of affection.



Sneaky side glances.

And unexpected gifts. 
A special needs teacher and faraway friend that I’ve only met once posted a photo on Instagram a couple weeks back of a stack of notes her students wrote with their Best Buddies. They will be posted and displayed all around the school as reminders to all students. I commented that I loved the photo–that it should be a print. Today, a package was dropped on my doorstep–a large wood block of the print that is now in the girls’ room.

You got this.
Be yourself.
Be love. 
You can do it.
Don’t give up.
You’re a wonderful person.
…and, my favorite…

All was be pawd of your self.

I love people. We are all small messes that together make big miracles with little efforts of love.

Last month, when Liz Plachta and I traveled to North Carolina to observe the UP Program in action at WCU, I took lots of mental pictures of what I saw–a promising future for Nella and a target more clearly defined for our hopes that consequently guides our actions today. It’s important to note that college isn’t the be-all and end-all of life, even for kids without intellectual disabilities, but it does represent something that we all want for all of our children–learning and opportunity, not to mention a fulfilling social life and independence. Whether one pursues these things through college or not, what we saw at WCU provided meaningful inspiration for me and Liz–moms of kids who, twenty years ago, would have had a different outlook for the future. Because I’m a nurturer by nature, I often have to remind myself to step back in parenthood–put my worries aside so that my nurturing doesn’t hinder my children’s ability to fly and figure things out for themselves–flying that will, no doubt, deliver experiences that are hard, that hurt their feelings, that don’t go perfect on the first try. With Nella, these reminders are even more critical for the success of her future. If I constantly view her opportunities through the filter of “she’s going to need us more,” I will clip the wings she was given to fly.

What we observed at WCU was truly beautiful–a microcosm of what we want to see more of in the real world–inclusion at its best–students of all abilities working together and learning from each other. Zach and Ali both live fulfilling lives of independence that are seasoned with friends and learning, failures and success. There were several things I witnessed that I asked about later–“Wait, who’s helping them with that? Do their parents know they’re making plans for the weekend? How are they going to get there?” Dr. Westling and Dr. Kelley smiled at our questions. “They have to learn how to do these things like everyone else. They’ll figure it out. We don’t jump in to do it for them.”

Liz and I joked that we’d get kicked out of the program after they found us in camouflage, hiding in the bushes, spying on our kids to see if they needed us. Letting go is hard, especially when disabilities have required more of our support over the years–but I don’t ever want to hinder my kids’ success. We now promise to hold each other accountable and to meet for donuts and coffee when we’re feeling the itch to shadow our kids in college. Nella will mostly likely kick me out anyway. “Mom, get out of here. You’re embarrassing me, and I need to study for my exam.”

Nella might not be a Zach or Ali someday, and that’s okay–she’s Nella. But the world of opportunities for individuals with intellectual disabilities continues to expand with more knowledge, more stretching, more chasing, more asking, more letting go. The fact is, college is possible. Independent living is possible. Fulfilling employment is possible, and these things were hardly existent years ago. With a glass-half-full perspective, I’ll choose to see that word as beautiful: possible. And with our family’s efforts and our community’s support, we can fill that glass right up to the top. Likely.

It’s clear after spending a day with Dr. Westling and Dr. Kelley that they not only have years of experience with individuals with intellectual disabilities and a deep knowledge of special needs education, but they have a remarkable passion to help individuals succeed. They believe in inclusion in education and the workplace with all of their hearts. They’ve given their life’s work to helping individuals with intellectual disabilities soar, and they want to help others do the same. I’m so honored to have their words and hearts in this space today. Their advice is so valuable, I found myself shaking my head through every tip, pertinent not only to Nella but for each of my children.

For every one of us…a brighter future starts today.

Preparing Your Son Or Daughter for College:
Suggestions for Parents of Children with Intellectual Disability

David L. Westling, Ed.D. and Kelly R. Kelley, Ph.D.
The University Participant Program
Western Carolina University
Cullowhee, NC 28723

It is not uncommon for us to receive each year five to ten times the number of applications to the University Participant Program, our postsecondary education program for students with Intellectual Disability (ID), for the number of slots we have available. Parents are quickly learning about the availability of college programs for their children with ID, and they are seeking admission to them at an unprecedented rate. As they do, they often ask us, “What can we do to increase the chance our child will be admitted?”

Unfortunately, when they ask the question, it is often too late for them to do the kinds of things that will ready their child for college. The kinds of attitudes and activities that are most important should begin early in life and continue until the young man or woman is ready to enter college. So through this paper, we are reaching out to parents to tell them what we think will best prepare their child for college. We hope you will find these suggestions useful.

1. Know that the family is the key to success.

Photo by Kristina O’Brien, courtesy of Lauren Perlin

The clearest lesson we have learned is that the family is the key to what their child can accomplish. There is nothing we can teach in our program, or that students can learn, that will lead to positive outcomes if families don’t support these outcomes. Families have to realize the potential of their son or daughter from early in life and promote their full participation in life so that they can achieve as much independence as possible. Without this attitude by families, there is little we can do. So if we do not recognize this attitude in the family, and know that it has been present from the beginning, we will likely not admit an applicant.

2. Know that the role of parents must change during the child’s life. 

Photo courtesy of Shannon Blaeske

It is very natural for all parents to want to nurture and protect their children. This is what good parents do. But good parents also give their children lots of chances to learn, let them find their interests, let them practice their skills, encourage them to try new things, and let them test their wings. If parents stop at the point of “nurturing and protecting,” their children will not gain in learning new things or acquiring independence. Even though the mental development of your child may not be the same as that of others, your development as a parent must progress so that your child can progress as much as possible. We are most interested in applicants who have done as much as they can with what they have to work with.

3. Be future focused. 

Photo courtesy of Colette Cosky

If you have not already noticed, soon you will: Life happens very fast. For many parents, the activities of life are so overwhelming that it is difficult to look beyond each day. But days go by and before you know it, you have a young man or young woman living under your roof, and you are trying to figure out what the rest of his or her life will be like. Even though you might not know exactly what the future holds, start getting ready for it. Make sure your son or daughter is fully involved in family activities, community organizations, and is taught in inclusive schools and classrooms. He or she should have chores and responsibilities, should learn that work is part of life, and should think about career options. We can usually tell when a person has been immersed in life activities, and this is the person we want in our program!

4. Have high expectations. 

Photo courtesy of Heather Rodriguez Photography

Everyone progresses to the highest level they are able to achieve if there is a clear expectation by those who matter that they should do so. Not everyone will be a nuclear physicist or a Nobel prize winner. But everyone can go to school, have interests, find a career (or two or three) and have a happy life in a happy home. This is not too much to ask for anyone. The only thing that can get in the way is if there is not an expectation for this to happen, or worse, if there is an expectation that it cannot! You might not know now exactly how it will happen, but if you expect it to, it will. When students apply to our program, we ask them why they want to come. When they have a clear picture of what they want in life, we know that they are more likely to be successful in our program.

5. Let your child take chances and make mistakes. 


Photo courtesy of Heather Seal

We know that safety and security is the number one concern for parents, but opportunities to take risks are also important. And sometimes these risks will lead to mistakes. But if there are no risks being taken, and no mistakes being made, there is no learning occurring. On our college campus, we expect that our students will venture into new settings and activities, and that some of these will be a little risky. We try to guide them and help them avoid big mistakes, but at the same time, we know that what they have experienced earlier in life will better prepare them for life on campus. When we view applicants as having experienced a relatively sheltered life, we suspect that our program might be too overwhelming for them.

6. Allow voice and choice. 


Photo courtesy of Heather Seal

Individuals need to learn how to make their own decisions, have a say in their life activities, and know that risks and rewards can be a part of every decision. We often see applicants for our program who turn to a parent or guardian every time they are asked a question. They do not trust their own judgment and feel they will be more correct if they rely on what mom or dad tells them. You have to realize that you will not always be around to make decisions and that the more practice your son or daughter has, the better they will become at it. We like to see applicants who, even though they might struggle, try to figure out for themselves what they want and what they should do. And we know if this is going to happen on campus, it has to start happening early in life.

7. Inclusion is essential. 


Photo courtesy of Heather Seal

You cannot teach someone to live in a typical, heterogeneous world…they have to learn it through experience. We can tell when applicants are comfortable around others on our campus, and when they have not had the experiences to help them do so. The best kind of experience for them to have is to go to school with kids without disabilities in inclusive classrooms. As we look at conditions around the country, we know that some states and school districts include a lot of kids with ID and some do not. But we also know this: if parents are steadfast, their kids will be included. Don’t accept anyone telling you your child cannot be included. With adequate support, everyone can! Even though it might take extra effort on your part and on the school’s and teacher’s part, inclusion is the best education for someone who wants to go to college.

8. When the time is right, get a job! 

Photo courtesy of Heather Rodriguez Photography

One of our outcome goals is for graduates to work in a career of their choice in a community-based job after leaving our program. And the best predictor of getting a job later is getting a job sooner. Kids in high school work at grocery stores, fast food restaurants, and lots of other places. Having a job teaches responsibility, independence, good decision-making and a lot of other soft skills that people need to be successful in the world. Use your network of friends, relatives, and acquaintances to help your son or daughter find a job during after school hours and on weekends and holidays. We find it hard for students to be successful in our job training component if they don’t know that working is an expectation. Let them know, when the time is right, that it is!

9. Take advantage of “natural supports.” 

Photo by Kristina O’Brien, courtesy of Lauren Perlin

Parents often try hard to get their son or daughter every type of service that is available. Either through the schools or in addition to them, they pursue speech and language therapy, physical and occupational therapy, music and art therapy, dance therapy and hippotherapy, and various other kinds of therapeutic services. Although there is nothing wrong with this, it often results in the person with ID having more professionals in his or her life than non-professional people. In our program, we recruit numerous college students to hang out with and support our UP students. You can do the same by enlisting friends, schoolmates, neighbors, relatives, church members, scouts, and anyone else to spend an hour or two with your child every week. Not only will he or she be in a position to develop more friendships, but will also benefit from learning to engage with a variety of individuals, an expectation on our campus.

10. Share your success stories.

Photo courtesy of Heather Rodriguez Photography

Lots of times, when a person applies to our program, they have already been successful and have acquired celebrity status. When they apply, they include their newspaper clippings and their videos of television interviews, and we are generally very impressed. When your son or daughter achieves success, if you can, get it publicized. This accomplishes lots of things. It lets the world know that your son or daughter is a capable person, and maybe more important, lets the everyone learn that people with ID can be successful. It also reinforces the notion of success in your son or daughter which will help him or her grow in confidence and pride. And most importantly, it tells the world, and us, that you are a great parent who is proud of your child and will do everything you can to help him or her be a successful person! This is the type of parent we want in our program!

We wish you the best in preparing your child for college or for whatever kind of successful life awaits. For more information about the UP Program, please visit up.wcu.edu. And for more information about all college programs for students with ID, you can visit thinkcollege.net.

Thank you, Dr. Westling and Dr. Kelley for supporting us parents through your words and the work you do. 

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An update to the Ruby’s Rainbow 3-21 Pledge you all helped make so successful.

It’s time to give that money away! The deadline for 2015 scholarship applications is Friday, May 15

Note: This scholarship can be for ANY life-enriching type class (as simple as a local art class, community college program and, of course, programs like the one we shared at WCU). These scholarships are intended for individuals with Down syndrome of all abilities, not just individuals who are pursuing a rigorous college program.

1. This grant is for individuals with Down syndrome 18 years of age or older.
2. Desire and intent to enroll in a class or program that will enhance your life through employment, independent living or life skills, or interests in any other areas.
3. Provide High School transcript or equivalent.
4. Individual’s that were awarded a scholarship from Ruby’s Rainbow in 2014 will not be eligible for another scholarship in 2015, but may reapply again in 2016.
Click HERE to apply now.