September 14, 2011

The ties (chromosomes) that bind us

I was recently contacted by a gentleman named Joe Rinaldo. Joe has recently written an e-book called – A Spy at Home. It is the story of an ex- CIA operative coming to terms with his life. He reminisces about the time he spent away from his wife and his adult son, who has Down syndrome.

I truly enjoyed the book, particularly how the main character’s son was part of the narrative, but not his entire narrative. Just like all of us – our children with Down syndrome are part of our lives, not all of our lives (although sometimes….). It is thoughtful and makes us think about what we regret in our lives, while acknowledging we cannot change our past and probably would not have even if it was possible. Check out his blog and book review!

In learning about Joe and his book, I learned he is the stepfather to a beautiful 38 year old daughter named Sharmane. I asked him to read my book, and following is the response I received from his wife, Vivian:

I am Joe's wife, and I just wanted you to know that I read your book and LOVED IT! Your words echo some of my own, even though my daughter with DS is 38. She was born during that period of time when doctors advised parents not to even take their children home from the hospital, to just send them to institutions. That is probably what made me so angry and stubborn about not only taking her home, but raising her to achieve everything she could!

My daughter, Sharmane, is now 38, works as a volunteer for an organization that provides sports equipment to people with disabilities; she is very active in Special Olympics and Best Buddies (do you have that organization in your area?), participates in activities at our local Parks & Recreation organization (which is, thankfully for us, also the hub of Special Olympics locally), swims, bowls, rides horses, plays basketball, bocce, and is a powerlifter! She is one of only two or three girls who lifts weights in competition, and she LOVES it. My husband, though technically her stepfather, is truly her dad, and she loves spending time with him. He belongs to a local branch of the national organization D.A.D.S. (Dads Appreciating Down Syndrome), and he is her weightlifting coach and assistant basketball coach.

She has taught us the joy in simple things, but she is a truly complex person with deep emotions, oceans of kindness and compassion, and much more patience than either of us. Your comment on your daughter's "time" cracked me up. We call it Sharmane-time. There is real clock-time, and then there is Sharmane-time, and you just have to adjust to it.

Thank you so much for your wonderful book, and for your blog. Though my daughter is grown, the words you wrote brought back so many memories (mostly wonderful) about her growing-up years, and I just wanted to let you know how much that meant to me. Write on!

I was so touched by this note and the support from a mother who fought battles that provide opportunities for my daughter and thousands and thousands of other children with down syndrome. Thanks Vivian.

These are the unsung heroes of our generation and the generation before us. These are the mothers and fathers who inspire me, and provide me the energy to keep asking for what is right for Alex, not what is easy. The battles continue, but the war is turning our way. Awareness about people with disabilities is at an all-time high, and opportunities for fulfilling and contributing lives increasing. There is still a lot of room for growth, but it is happening.

Vivian included the following information that keeps my faith alive.

Next Steps at Vanderbilt University

Next Steps at Vanderbilt University is a 2-year nonresidential certification program for students with intellectual disabilities, providing individualized Programs of Study in the areas of education, social skills, and vocational training.


Our mission is to provide transformational learning experiences, within an inclusive educational setting, for young adults with intellectual disabilities, university students, faculty, staff, and community leaders.


The goal of the program is to broaden the career options and opportunities for individuals with intellectual disabilities in inclusive, age-appropriate settings. In order for these students to best meet the expectations of adults in our society, they need to have integrated educational experiences. The goals are for the students to have the “outcomes we all value -- a career, close relationships, and enjoyment….” (Hughes & Carter, Transition Handbook, Brookes Pub., 2000).

Individual Programs of Study

Next Steps at Vanderbilt is committed to the integration of students with intellectual disabilities in all aspects of the university and the surrounding community. Students will self-direct the development of their Program of Study through initial and on-going Person-Centered Planning activities. The Program of Study is a unique and customized plan for achievement in academic areas, independent living skills, career development, and university life.

Peer Mentors: Next Steps at Vanderbilt Ambassadores

Peer mentors are the backbone of Next Steps at Vanderbilt as they provide the majority of the support the students receive. A diverse group of individuals from the VU student body are selected to serve as peer mentors. The students receive training and on-going support from the Next Steps at Vanderbilt staff. VU students have the opportunity to be academic tutors, daily planning buddies, work-out buddies, lunch buddies or job trainers for students.


Students will leave Next Steps at Vanderbilt with a Certificate of Completion. They will also have an electronic portfolio that they will build during their time in the program. The portfolio will highlight the courses they have taken, the experiences they have had in career development and social events, and the independent living skills they have mastered.

Research and Evaluation

The Next Steps at Vanderbilt program is committed to evaluating the progress made by students each semester. The program will evaluate progress toward goals in various areas (academic skills; employment skills; independent living and social skills; and self-determination). Evaluations will be based on feedback from the many different groups involved in the program: the Next Steps at Vanderbilt students themselves; their parents; the program staff and Ambassadores; and internship supervisors.

Additionally, the Next Steps at Vanderbilt program is committed to evaluating the systems in place to support the Next Steps at Vanderbilt students, their families, their Ambassadores, and their internship supervisors. These evaluations will not only guide the further development of the program, but will document student progress and program development for other similar programs across the country.

Vivian is involved as an independent living skills coach/teacher as her daughter is 38 and not college-aged. I think when our children are born with an extra chromosome it includes a "giving back" gene for parents. It is almost like we cannot stop!

Vivian and this program inspire me yet again, if a well-respected university like Vanderbilt can have programs like this, why can’t more colleges, universities and communities? Think of the awareness these programs bring to their students, faculty and staff. Think of the opportunities our young adults with and without disabilities have to learn, grow and thrive. Imagine….and believe.


  1. There are now lots of great post-secondary programs for students with intellectual and developmental disabilities. This website has a database of all the programs:

    My daughter just started the fall term at an amazing program at Shepherds College which you can find on the database or on my daughter's blog:


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