HAPPY DOWN SYNDROME AWARENESS MONTH Y’ALL!!
For the month of October we will be chronicling the journey of two little, very capable girls, Ruby and Nella as they navigate their way through a college campus. It is our goal to educate people on what higher education may look like for someone with Down syndrome, so we will add “Fun Facts” with each post, along with hilarious captions, to let you take a peek into some of these programs and how they work. You can also follow us on Instagram with the hashtag #rubyandnellagotocollege or on our Facebook Page !!!
Ruby: “Are you as nervous as I am for orientation?”
Nella: “We worked really hard to get here. I am so excited.”
Ruby: “Me too. And we have each other.”
Come spend the month with us and watch these two little girls take over a college campus. Two little, very capable girls who will one day be in “big girl boots” heading to class. We hope you learn some fun facts along the way! We also have a fun give-away with more details tomorrow so stay tuned…Happy Down Syndrome Awareness Month Y’all! Yee-Haw!! #rubyandnellagotocollege #iamcollegebound @etst
“Non-Fat Vanilla Frappuccino With Extra Whipped Cream And Chocolate Sauce? Umm…yes please. This will save me during my Econ class.” Decaf of course, because she’s 4.
Hey guys!! We’ve got a fun Hashtag Give-away to help celebrate Down Syndrome Awareness Month. A lot of peeps don’t even know that higher education is a possibility for someone with Down syndrome and we want to change that. We are asking you have your child or loved one of any age who is rockin’ that extra chromosome sport their favorite (or yours…ha!) collegiate gear and post a picture. Every Friday, starting next week, in the month of October we will be randomly selecting two pics using the hashtags #iamcollegebound and #rubysrainbow to win a gift card to Fanatics.com! We want everyone to start imagining the possibilities for their loved ones with Down syndrome!! To enter the give-away:
1. Take a pic of your loved one who happens to be rockin’ that extra chromosome in his/her or your (ha!) favorite college gear. It can be a t-shirt, hat, flag…be creative!
2. Follow Ruby and Nella’s journey on campus at @rubysrainbow for the month of October (and hopefully beyond!!)
3. Post the picture with the hashtags #iamcollegebound and #rubysrainbow
We want the world to see and believe in the capabilities of people with Down syndrome. Help us celebrate them this month and show the world what they are made of!!
“Ruby, did you know that Nicolaus Copernicus was a Renaissance mathematician and astronomer who formulated a model of the universe that placed the Sun rather than the Earth at the center of the universe?”
Did you know that there are over 250 programs across the United States that have post-secondary educational opportunities for individuals with intellectual disabilities? These inclusive college programs focus on the whole student with academic, internship, independent living, and social skills components. The programs vary in length from 2 to 4 years depending on their focus. Some offer a university residential setting, while others are non-residential based. Many of the programs also take place in a community college setting.
While a few students with intellectual disabilities will pursue a Bachelors degree, most program participants receive a Certificate of Accomplishment. They do, however, gain so much more! They are gaining confidence, lifelong friendships, and heading down the path toward independence!
ThinkCollege.net is a fabulous resource to find a program in your area or one that may be a great fit for your loved one rockin’ that extra chromosome!
“Dude, hold that thought…babe action, 3 o’clock.”
Fun Fact: There are many student volunteers who help make these programs successful (@wcuupprogram has 244 this semester!!). They will study for exams with the participants, help them navigate campus life and finding their classes at the beginning of the school year, give them rides, be their mentors.
Mentoring relationships generally focus on “the growth and accomplishment of an individual, assisting in professional and career development, role modeling, psychological support, and the development of personal and reciprocal relationships.”
Most of the volunteers don’t feel like volunteers though. They feel a true friendship and bond, and some have even found their passion and changed their major finding inspiration in unexpected places. Grayson Coleman, a volunteer for the WCU UP program said, “ The UP program has made college more enjoyable for me. It has helped me find myself and uncover a passion I didn’t even realized I had. When you’re having a bad day, they’ll pick you up. If no one that day has asked you, “how’s your day going?”, they will. The students will thank you, thank you and thank you time and time again – but I thank them, each and everyone of them.. for helping me find my inner-self, for loving me on my good days and my bad days, for welcoming me with open arms. It’s just a feeling you get within yourself when you see their faces light up when they see you. They’ve impacted my life just as much as I’ve impacted theirs, if not more. My heart is completely full and content.”
You see, inclusion isn’t just for the person being included. It benefits the entire community and everyone’s lives are impacted in such a beautiful way.
“Because all we have is Ramen back in our dorm room…. and a pack of Juicy Fruit.”
Remember those days?? These higher educational programs are giving individuals with Intellectual Disabilities the independence to learn about money management, relationship and time management, doing their own laundry management (remember stuffing your car full of your dirty laundry before heading home?? Mine was piled so high I could barely see out of the rear window!)…ok, maybe the laundry management came after college. But seriously, think of all the things you learned once you flew the coop out of necessity. For reals.
“Geez, mom…You can leave already. I will be fine. OK, one more hug and then you PROMISE you will leave? And please stop crying. You are embarrassing me.”
Fun Fact: I have talked with lots of directors of these programs and one thing they all seem to agree on? It is much easier for the student to let go and move forward then it is for the parents to let go. As hard as I have worked to help others rockin’ it, just like my Ruby, gain independence and reach for their dreams of higher education, when it comes time for Ruby to fly the coop? You can bet I will be hiding in the bushes in my camo making sure the world is treating her right (you with me @etst?). The reality is they want so desperately to have that independence, and if we give it to them? More often then not….they thrive. THEY SOAR. The Vanderbilt University Next Steps Program is a 2-year nonresidential certificate program for students with intellectual and developmental disabilities, providing individualized Programs of Study in the areas of education, social skills, and vocational training. A few quick facts from their program:
1.100% of their students learn to navigate independently on campus to their classes and internships within two weeks.
2.Parents sometimes struggle when they come to understand that the administration wants to hear from their son/daughter FIRST.
3.One of their students with Down Syndrome told his parents, “When I go to Next Steps, don’t tell anyone I have Down Syndrome….I don’t want them to know.” Fast forward 8 months and this same young man stood on a stage in front of 200+ university students at a Spread the Word to End the Word event and proclaimed,” I have Down Syndrome, but that doesn’t define me!”
So, in conclusion: As much as I am gonna want to be hiding in the bushes in my camo, protecting my lil lady from the world, it is that world that is going to give her the gift of independence. One that she deserves.
“Hey Ruby, can I copy your notes from art history lecture??”
Fun Fact: Community Colleges are a great place to start when looking for a post-secondary educational program for someone that is rockin’ an extra chromosome (www.ThinkCollege.Net is a great resource when looking for any type of program in your area). All programs, residential and non-residential, at a community college or university, will look a little different and vary in course work, independence level, overall time spent on campus, ect. It is highly beneficial to do the research to find an appropriate program for you or your loved one. What may be the most awesome program for one individual, may not be for another. I have showed a little bit about a few residential and non-residential university programs, so today I am going to give a little insight into what Ruby’s local community college program looks like.
Austin Community College (ACC) STEPS Program is the first step towards greater independence and a love of life long learning. STEPS Classes are small, averaging 8 students per class. Students can attend from 2-4 days per week depending on the pace they are comfortable with. Classes are three hours per day per class 2 days a week. Students take an average of 3 classes.
Students participate in student life events activities and events, intramural sports such as basketball, theater, arts, writing, dance, inclusively with all ACC students.
Depending on students goal, students have many options for participation in the STEPS Program:
Students can attend classes for enrichment, complete a degree plan, attend 12 core STEPS courses and receive a Work Readiness Certification. They can start with STEPS classes and go on on to take certification courses in their area of interest or they can start with STEPS and audit any ACC course.
They can also start with STEPS then go on to take the Texas Success Initiative ACC entrance exam for credit courses.
Students who take certification courses, audit or take credit courses, receive 6 hours of tutoring from STEPS program staff.
So you see…there are LOTS of options out there!! Check out www.thinkcollege.net to look for a program in your area!!
“So Nella. Did you see the way Ben was looking at you when we were tossing the ball around in the courtyard just now?? I crammed for a final with him on Monday and he was asking about you…just sayin.”
Fun Fact: A lot of these post-secondary educational programs have courses on relationships and social interactions. The MasonLIFE Program at George Mason University has a course entitled “LIFE A050: Human Sexuality and Personal Relationships Fundamentals.”
This course is designed to develop knowledge of human growth and development. Topics include hygiene, social engagement, personal relationships, and human sexuality.
People with Down syndrome are just like everyone else….they want to build a meaningful relationship with a significant other. These classes help guide them through it. It’s a tough dating world out there!!! Good to know there are some tools and support to help them wade through it all!!
“Ben, If we are cramming for this test in a one hour study session, then you best be passin’ me that peanut butter before we get started.”
Welcome back to Mentor Mondays!!
One of the things that I think we all worry about as parents, and it is even more so heightened when you have a child with a disability, is fitting in. Because all you ever want is for your child to be happy and loved…to be respected…to be included. It makes your heart hurt to think of any other outcome.
Fun Fact: The more and more I learn about all the programs available for individuals with intellectual disabilities, I realize that at the heart of it are these amazing volunteers. Volunteers who are dedicated to helping your loved one “fit in”. Students who, in the beginning, may be doing it for class credit, volunteer hours or experience…but in the end, find an entire new level of “fitting in” themselves. Most of the people that volunteer end up saying it was the best decision they ever made and it enhanced their college experience and life greatly.
There is too much I want to say about this today, so I have dedicated a blog post to it (Volunteers Make the World Go Round). I hope you pop on over and see how being a volunteer has changed not only their lives, but the lives of the Ruby’s and the Nella’s of the world. One of the quotes from Michael Peter Flom, a volunteer ambassador for the Next Steps Program at Vanderbilt, speaks to me so clearly because I see it and feel it everyday with my own daughter. He says:
“I have seldom felt so appreciated in my life than during my interactions with Next Steps students.”
I hope you take a few moments to check out the blog post and learn more about how much these experiences have meant to them. It touches my heart so deep to think that one day it will be Ruby trying to “fit in” and knowing she will have volunteers like these to accept her with open arms and hearts…but also hearing the touching stories of how someone like Ruby has changed their life for the better.
“Dude…what day is it? CRAP. I’m late for my math tutor.”
While we have made great strides in providing post-secondary educational opportunities for people with Down syndrome, learning at a college pace still provides many challenges for some. Instructional support programs and accommodations are often necessary and look very different from program to program. They are often tailored to the individuals needs.
Many of the professors that have have taught students from theseprograms in their classes report that they believe they become better teachers because they are working to include a wider diversity of students in their classes.
Sounds like a Win, Win for all if you ask me!!
“Ruby, I can’t get that ‘I can’t feel my face when I’m with you’ song out of my head from the dance last night. And I LOVE it.”
Fun Fact: Not only are individuals with Down syndrome who participate in these higher educational programs gaining skills to find more meaningful employment, they are also gaining social skills, friends, a social LIFE! They are attending dances, sporting events, studying with friends, having lunch dates with friends and building meaningful, life-long relationships. No longer do they have to wave from the porch as their high school buddies head off on the path toward higher education.
One mom of a participant in the Bethel University BUILD Programs says, “We’ve been blessed starting with early intervention, then mainstream classrooms and activities from Day 1. School lasts till they’re 21, but then it kind of fizzles. They get functional skills, but there’s been no lifelong learning, which is important for everyone. That’s why this is a godsend.” Another says, “They’re part of the larger community and they’re building natural friendships. They’re becoming part of a group of friends who do things together.”
Such integration is nothing new for today’s students, who came of age in a more progressive era for people with intellectual disabilities. But until recently, that integration often hasn’t included college. We are all life-long learners and people with Down syndrome are no different. They want to continue to learn, grow and develop meaningful relationships. These post-secondary educational opportunities are helping them achieve this…and more.
Hope y’all are having a good weekend and getting your groove on to whatever song you can’t get out of your head!
“Oh nothin, just taking my British Lit test…maybe I shouldn’t have stayed up so late watching reruns of The Golden Girls. Dang.”
Fun Fact: Most programs have support systems in place to help create a successful learning environment for the students. For instance, several programs allow participants to audit regular classes with the general student population. Since students may have their own IEP (Individual Education Plan), the information they are graded on in these classes may differ from the rest of the class.
While students may have the chance to participate in audited classes, the reality is that they won’t graduate with a full degree, but a Certificate of Completion instead. Regardless of this fact, we believe SO strongly that these life experiences and the independence gained is invaluable. This helps them on the road to meaningful employment and more independent living… and let’s face it. We all want and deserve that.
“Nella, once we are done cramming for finals we have to drop by Forever 21. I can’t remember the last time I have done laundry and am out of clean shirts…and pants…everything actually.”
Instead of a Fun Fact I am sharing some stories and thoughts from the families of recipients on the blog today! I asked them to share how they felt when they heard the words “Down syndrome” for the first time…and how they feel now that they have a college student. You can check it out here:
https://rubysrainbow.org/20…/…/just-what-the-doctor-ordered/
“Hey Nella…do you know how to solve the Linear Equation 2y-x=4+x+3x?? I feel like there should be a “Flux Capacitor” thrown in there somewhere.”
(Let’s all take a moment and pray that Ruby doesn’t inherit her mommy’s math skills.)
Fun Fact: Just as it is for anyone, gaining knowledge and experience through higher education can help someone rockin’ that extra chromosome find meaningful employment. 86% of the Vanderbilt Next Steps graduates have found meaningful, paid employment. 100% of their graduates state they are better self-advocates and can speak up for themselves more easily because of their college experiences. At Western Carolina University they report 82% of their UP Graduates are hired as paid employees in a community job within one year of graduation and maintain long-term inclusive, community employment. There are many statistics like these from programs all over the nation. The main goal for the students in these programs is to gain meaningful employment and increase independence…and it seems to be working.
At the Bethel University Inclusive Learning and Development (BUILD) program, it’s expected that, like other Bethel students, they’ll leave college prepared for better, more satisfying work, and with skills to take charge of their lives. Ruby is already wanting to take charge of her life and she isn’t even 5 yet, so I can’t even imagine how ready she will be once she gets older and it is her time! These higher educational programs are giving individuals with Intellectual Disabilities the opportunities and experience to do so.
“Hmmm…if I can just finish my paper for Organic Chemistry by 8 tonight, I can make it down in time to stand in line for Star Wars tickets with Ben and Nella.”
Fun Fact: In the past decade, there has been growing momentum on a national scale to make higher education more inclusive for students with intellectual disabilities.
Meg Grigal is co-director of Think College, the organization charged with developing and expanding higher-ed options.
“We have a history of lowballing our expectations for these young people,” said Grigal. “We want to put them on the path to finding meaningful work and change the cycle of dependency. It will be better for them and better for the economy.”
A college certificate demonstrates that a student has commitment and follow-through, she said.
“They’ll leave college with a résumé and credentials that will be recognized by employers and show they’re ready to work,” she said. “More of them will get out of low-wage sheltered workshops and be prepared for competitive employment. They’ll be ready for an integrated workplace, working with people without disabilities.”
I believe so strongly that raising our expectations is half the battle. I personally feel like I have high expectations for Ruby already…but she still trumps my expectations constantly! She shows up everyday to school ready to learn and do her best…and she is just in Pre-K. It’s not about “being better for the economy” for me, although that is a perk. It is about letting them soar and reach their highest potential, whatever their interests are. It is about giving them the opportunity, just like my older daughter has, to learn and grow and be the best version of themselves…even after high school. Let them keep on rockin’ that extra chromosome!! Woot!
“How yew doin’ ??”
Well it is Mentor Monday again peeps! I know I keep yipping about how these post-secondary educational programs for people with Intellectual Disabilities are changing the lives of not only the participants, but also the lives of the people they are surrounded by. It affects the entire community in such a beautiful way.
Kailin Kelderman is one of our 2015 Rockin’ Recipients at University of Nevada Reno Path to Independence Program. One of her goals is to live on her own and find a job that she loves. She was really wanting to explore and learn more about photography, so it was no surprise that was one of the classes she took her first semester. Danielle Smith is her mentor in her photography class and says it has been an honor to work with “KK”.
“She is so incredibly smart and kind. Not only does she work hard to be successful in school but she constantly keeps up with the people in her life too. I get texts everyday from her and I honestly look forward to them because I always know KK has my back just like I have hers. She is such a warm person who is truly thoughtful and concerned with everyone in her life. KK has one of the biggest hearts in a person that I have ever met. KK is a fast learner too. After the first or second time of showing her Photoshop and how to work her camera manually she knew exactly how to do it. I was amazed at how quickly she got the skills down to create amazing photographs. Usually it takes people a little bit to get into the photography groove but she has a natural eye and is able to capture the world in amazing ways. I have been so lucky to meet KK and I am glad that I get to be a part of the large support system in her life and her friend.”
Bianca Libbon is her educational coach and had this to say:
“She has already taught me not to underestimate anyone, to reach out to anyone who may need assistance and/or just a friend — no matter their presence of or lack of a disability — and to appreciate all of the wonderful people that I have in my own life. She inspires everyone that meets her, and she has more than proven that she is well equipped to succeed here at Nevada. Kailin is one of the most dedicated, compassionate, and hardworking people that I have ever met, and I am glad to be able to call her my friend.”
There are so many more stories like these. Keep on rockin’ it Kailin and showing the world just how cool and capable peeps with Down syndrome are! We are so proud of you!
“I know it Nella. My mom won’t stop texting me either. Next thing you know they will be wearing camouflage and hiding in the bushes.”
Don’t Forget: This is our last week for our hashtag give-away! Be sure to post a pic of your loved one in his/her/your fave collegiate gear with#IAmCollegeBound and tag @rubysrainbow for a chance win a $25 gift card to Fanatics.com! We will announce the winner (picked at random) on Friday at 4pm!
ps Ruby….I am totally gonna be hiding in those bushes.
“Is it Friday yet??”
One of the greatest challenges for college attendance is how to pay for it, and this can be particularly true for students with intellectual disabilities. Believing we are all life-long learners, and people with Down syndrome no different, was one of the driving forces in starting Ruby’s Rainbow. Most of these programs for people with ID are just as expensive, if not more, than someone obtaining a traditional degree. In the past four years alone, Ruby’s Rainbow has been able to grant 185k in scholarships to 74 amazing Rockin’ Recipients (OMG!) going for their dreams of higher education. As we grow as an organization, our hope is to continue to raise scholarship amounts to make a more significant difference. So what are other ways to help make this dream of higher education for your loved one with Down syndrome a reality?
Many parents never imagined their child would have the chance to pursue a higher education if they had an intellectual disability, so saving for these programs was never a priority for most people. Parents of younger children with ID, however, not only have the foresight that their child could attend one of these programs after high school, but they also have great tools for doing it. 529 College Savings Plans allow parents to save money on a tax-free basis for their child, and soon ABLE Accounts will expand those parameters outside of education. This will allow parents to not only save for their child’s education, but also for living expenses, assistive technology, transportation, and much more.
Federal financial aid in the form of Pell Grants, Supplemental Education Grants and Work Study, are also available to students with ID who are attending an approved Comprehensive Transition Program (CTP). There are only about 40 approved programs today, but Think College has hopes to assist many other programs to apply and be approved so that financial aid is more available. Looking into local DSA’s and similar organizations is another great resource as some of them have scholarship funds available.
We will continue to do our best on our end to help as many individuals as we can!! Our application will open in the New Year, so please check back if you or someone you know who is rockin’ that extra chromosome may be seeking financial assistance for post secondary education!
“Ok Nella…since I forgot my selfie stick, can you make sure you get the entire UNIVERSITY in the background? This will be the perfect Christmas gift for my mom.”
Fun Fact: Well, this isn’t really a fact, more of an observation. I had the wonderful opportunity this weekend to Skype with over 20 of our Rockin’ Recipients. You can only imagine the huge smile I simply could not wipe off my face the entire day, but that is not the observation I was going to share.
With each recipient, I asked the question “What is your favorite part of college so far??” The number one response? EVERYTHING. Literally, no hesitation…right off the bat. EVERYTHING. Each of them had something more specific to share after that, but the total vibe I got across the board was THEY LOVE IT. No matter what type of program they are in, whether it be residential, non-residential or a community college setting, they are all so thrilled to be pursuing their dreams of higher education…to be spreading their wings.
Someday, I may get a picture like this one, framed, possibly wrapped, under the Christmas tree. Whatever path Ruby decides to take I know one thing for sure. We will nurture her, love her, be PROUD of the person she has become and is aspiring to be. I don’t know what the future holds, but I know she will make the best of this crazy, wonderful life she was given.
“And then she told me that Ben had been asking if you were gonna be there. Just promise me one thing Nella…I get to be a bridesmaid. And always remember…Sisters before Misters…”
Fun Fact: I realized last night that we have some new followers (Welcome and THANK YOU!!) and not everyone knows exactly what in the heck we do over here at Ruby’s Rainbow. Well…the cutie on the left is my daughter Ruby, aka Ruby Doobs, or just “The Doobs” (the cutie on the right is her future college roomie, Nella). We didn’t know she was “rockin’ an extra chromosome” until her birth, and shortly after I was so inspired by her sweet spirit and determination it became clear to me that we had to do something. We looked into opportunities and funding for people with Down syndrome and I saw a dramatic drop once they became adults.So that is where we decided to focus our efforts. We believe so fiercely that we are all life-long learners (our oldest Recipient is 51!!) and people with Down syndrome are no different.
Our mission at Ruby’s Rainbow is to grant scholarships to adults with Ds who are seeking post-secondary education, vocational or enrichment classes. Our scholarship application will be open again in January for funds that apply to the fall of 2016, so please spread the word to anyone who may qualify. You can go to www.rubysrainbow.org for more info.
My dream for Ruby?? The same as my older daughter…to grow, flourish, become an important contributor to society…be happy and loved. Basically I want her to have the same opportunities as anybody else.My dream for Ruby is to DO and BE whatever Ruby wants. My dream and passion for all people rockin’ it just like her?To have all the opportunities to be the best they can be. I promise to keep working my hardest, sharing their inspiring stories along the way….so stay tuned peeps!!!
“Dude! Where’s my car?!?”
Well that’s a wrap guys!! We are outta here! (assuming Ruby can find her car :)) Thank you so much for hangin’ with us this month, taking the trip with Ruby and Nella and exploring the possibilities. These guys are exhausted and looking forward to the day when they have the chance to pursue their dreams of higher education!
Please stay tuned as we will continue to inspire through updates of our amazing recipients!! And of course some cuteness from the face of the organization, Ruby Doobs herself 🙂 We can’t wait to see what the future holds! Hold on tight…the skies the limit!!
Hi, just wanted to tell you, I enjoyed this post. It was inspiring.Keep on posting!