Friday, May 29, 2009

From Brandon Riffel

Dear Rud and Ann,

My last final was for my Constitutional Law class, which I took May 15 at 7:30 a.m. One of the questions on the test asked how the Supreme Court decided that minors and the “mentally r-word” could not be sentenced to death (my teacher also didn’t use the word when we discussed the case in class, but for the purpose of the test she had to cite it the way the Justices did in the case). When I saw the r-word on the test, I immediately scratched it out to the point where it was no longer visible. Then, I wrote a note at the top of the question which read, “In honor of JT Turnbull I refuse to use this word.” At that point, I started thinking about how much JT and the Turnbull family has done for me. I thought of how it was so fitting that I honor JT on my last college exam because if I had never met JT and the Turnbull family, there is no doubt in my mind that I would never have graduated from college. When I got home and realized that the day I had been looking forward to for four years had finally come, I began to get emotional, but not because I had finally finished. Instead, it was an overwhelming mix of emotions because I started thinking about JT and how much I miss him and owe him for whatever I accomplish in life. I thinking about every memory that I had of him from the first time I met him until the last time I saw him. I couldn’t think of a better ending to my college career than to reflect on the people who made it all possible and the nicest people I will ever know, JT Turnbull and his family.

I will always cherish my relationship with JT and the Turnbull family. He is still and always will be an integral part of my daily life. I have learned to much from Jay, from the Jay’isms (“I’m fine,” and my personal favorite, “Duke is the best”), to his outlook on life and the things that brought him joy (spending time with his family, going to a nice restaurant, etc.). Rud and Ann, I sincerely thank you from the bottom of my heart for bringing JT into my life and for all the countless kind gestures you have extended to me. I am forever indebted to you.


From Tom Riffel

Ann and Rud,

I just wanted to let the both of you know what a privilege it has been to work with you and for you. Rud, you have been a great friend over the years. You and Ann are always there whenever anybody is in trouble or needs help. Your extremely good traits show in your daughters as well. They could have been used as role models for other parents on how to raise children.

Of all the things you have done for my family and myself (which is many), the greatest gift was JT. I will never forget him nor will my family. He is etched in my memory permanently. Many times during the day when I’m by myself, I think of him and all the fun we had for those almost 5 years. I don’t know what else to say except thanks again for everything. I feel like you have done so much for us that thanks is not enough.


From Nita Benito

Dear Ann and Rud,

My thoughts and prayers have been with you every day since I heard of Jay’s passing. Please know that Jay’s life has had and continues to have a profound effect on so many, including my beautiful sons, Vincent and Joseph. Thanks to Jay, I learned what is possible for my boys! Thank you for sharing Jay with us.


From Timothy Shriver

Dear Ann and Rud,

I opened my copy of Exceptional Parent today only to learn of the tragic death of your son, Jay. I’m so sorry to be late in writing, but nonetheless I want to share with you both my deepest sympathy. I can only imagine the sadness of such a loss. Your words of tribute and celebration reprinted in the magazine was extraordinary. I hope someday to be able to attain that level of wisdom and faith.

I know that nothing will heal the emptiness that Jay has left in your lives and in the lives of so many others. But at the same time, I am inspired to believe that his love of life and his gifts to all of us are not defeated, but only changed – not ended, but still alive in countless mysterious ways. I join you in praying for him and for the peace which passes all understanding today and forever.

With sympathy,
Timothy P. Shriver
Chairman and CEO

From Stephanie Campo

Dear Ann and Rud,

I am so sorry for your loss of JT at such an early age and unexpectedly. I remember the many evenings at the Beach Center when we would get together and go to JT's beautiful home and we would sing together. JT proudly singing for his sister to be married. It was such a feeling of closeness and sharing -- a special time I will never forget. JT was handsome and friendly, and it was easy to see how he loved and enjoyed his life, family, and friends. JT's life was important and inspiring. Please know that you ad JT are remembered in my daily prayers. May God's great love and presence strengthen and encourage you.


Wednesday, May 13, 2009

From Valerie Owen

Dear Ann,

I saw Tom Skrtic and he told me about Jay. I was so very sad to hear. I know you and, especially, Rud's hearts are broken. I have such fond memories of Jay.

Two nights before you moved to Kansas, Rud gave Jay money to take me out to dinner. He and I had such a lovely time having pizza and sharing thoughts about the move to Kansas. I don't think he truly grasped that idea very much, but he seemed excited. Over the years I asked about him. Doug Guess often gave me updates when I saw him at TASH and I saw you a couple of times. Jay seemed happy and self-determined. Anyway, please know you both are in my thoughts. Jay was an inspiration to me as a young teacher and over the years I have shared the lessons he taught me with my university students. He has a long and powerful legacy.


From Sally Roberts

Dear Rud and Ann,

I'm sorry it's taken me so long to communicate my sorrow for the death of JT. This semester has already been long and arduous, and I often find myself neglecting those I care about in favor of those who squeal the loudest.

I know you realize the impact JT and your family have had on the field of disability in general, but you must also understand its affect on individuals like me. I am a true “baby boomer,” born in 1948 eight months after my father returned from serving in World War II (a preemie born one month early). It must have been a raucous homecoming, huh! I grew up in the 50s in a small western Kansas town and didn’t know anyone with a disability, or at least, I didn’t know the term. Both inclusion and zero inclusion were alive and well in Dodge City. We had both. I remember children in my classes who didn’t learn as well as I did. Jane had a seizure disorder and we all knew that she would periodically lose consciousness and writhe on the floor. We were all careful to protect her from hurting herself and it was expected that we would help her change clothes afterward. Those were certainly the days of truly heterogeneous classrooms. On the other hand, any child with significant disabilities had, I’m sure, been institutionalized soon after birth and we never knew. I had never seen a child with Down syndrome until I got to college and took a field trip to Winfield State Hospital. My undergraduate degree was in speech/language pathology and all of my clinical training occurred at the Institute of Logopedics, a private residential facility in Wichita. I was hooked! I found that I was really good at working with children and adults with significant cognitive disabilities, cerebral palsy, etc. Remember though, this was a residential facility and we had children from all over the world who had been sent there to live and receive care. Parents rarely came to visit. We were their families. Fast forward to my master’s degree in deaf education resulting in a job at yet another residential facility – the Kansas School for the Deaf. Again, I experienced families sending children with disabilities away from home to be cared for by someone else. Often I taught a class with a child in my lap with a 102-degree fever. I simply was not going to have that child lying sick and alone in a dormitory bed.

Imagine my surprise when I came to KU in 1983 and discovered that the chair of the Department of Special Education not only had a child with significant disabilities, that child lived at home. He was part of the family. His mother or father held him when he had a fever. And he was fun and funny and so special to everyone! The world of possibilities opened up, and again I was hooked.

So you see, Rud and Ann, JT and your family had a profound effect on me, on my future, and on my career. I knew that I would spend the rest of my life make sure that families had all of the knowledge and support I could give them to be able to provide their children with the best quality of life in their own home. Thank you both and thanks to JT, Kate, and Amy for showing me what was possible.


From Christie Mandeville

I'm so sorry to hear about Jay. I thought about him often over the years as well as his family. One of my textbooks in college had a foreword by them, and many of my voc/transition papers referenced their articles. Jay was such a great individual -- what a personality. He's on you can't forget.

Yes, Jay and the mainstream class at Whitman, cemented my decision to go into special education.


From Penny

Dear Ann and Rud,

I've been meaning to write you for some time now to say how very said I am about Jay's death. He has served as an inspiration to many of us working in the area of disabilities. I know his loss is felt greatly by you and by the wider community.

With great sympathy,

From Joe K.

Dear Rud and Ann,

I was deeply saddened to learn of the passing of your son. It is so hard to express one's feelings at a time like this. I see Frank Gray on the bus to work 3 days a week and he told me.


From Ellen Jensby

Rud and Ann,

I am so sorry for your loss. All I can say is that Jay lives on in the lessons you both teach students like me who hopefully can, in turn, make a difference in the lives of others. Your family is in my thoughts and prayers.

Ellen Jensby

From Lise Fox

Dear Ann and Rud,

I am at a loss for the words to express my sympathy to you and your family. Jay touched so many people, his life had such purpose. I hope that as time passes, you are comforted by the memories of a life well-lived.

Lise Fox

From Jan Blacher & Bruce Baker

Dear Ann, Rud, Amy, and Kate,

I was out of hte country when I learned about Jay, and you have all been in my thoughts every since. I just couldn't come up with a way to express all of the emotions and memories, and finally decided on this simple note.

One of the first things I did was to try to reach Mike Dixon because I thought of how often Jay remembered Mike!

I also reflected on Jay and his place in your wonderful family, especially to all of the myriad contributions he made and the joy he brought you. In many ways, I think of Jay as the catalyst for a whole movement of the MR (now ID) field.

I send you thoughts filled with vivid and fond memories, and together Bruce and I send our sympathy and hopes for healing.

Jan and Bruce

From Holly Benson

Dear Ann and Rud,

I saw Jeanie Schiefelbusch and she told me that your beloved Jay had passed away. I am so saddened to hear this news and sorry that we were unable to attend his funeral and offer you our condolences in person. Coincidentally, we were in North Carolina at that time attending a memorial service for Marty's father.

I have such fond memories of being at your home when Jay was a teenager. Jay smiling contentedly while Amy and Kate sang and danced around him. I will never forget what Amy said about both of them playing music, but at different speeds.

Yours was an extra special family and a beacon of light for so many others. Jay was blessed to have the two of you -- so visionally and so loving -- to guide his life journey. I know I have felt blessed for the time you were in my life and will be forever grateful.

You are both in my heart and thoughts.

With admiration and love,
Holly Benson

From Shirley Behr

Dear Ann and Rud,

Jay touched the lives of thousands of people -- he was the shining example of what love is really all about. No matter the distance between us, Jay and his loving family have had a very special place in my heart.

You were both my incredibly wonderful mentors and so was Jay. His contributions to my life -- in Lawrence and beyond -- left me with a depth of understanding about the real essence of relationships, family, unconditional love, and faith in each other an in the future.

He lives on in my heart and my memory, and so do you.

With my profound sympathy and affection, Shirley

From Madeleine

Dear Ann and Rud,

There are not words in the language to adequately express the extent of your loss and how sad it makes me feel. I extend my deepest sympathy to you and your family.

Love, Madeleine

From Patty

Dear Ann and Rud,

Our love and prayers are with you. Words are inadequate to say. We love you as we did Jay.

Love, Patty

Monday, March 9, 2009

From Holly Riddle

Dearest Rud and Ann,

My heart breaks for you, the girls, and all the people who so loved and cared about Jay. My heart breaks, too, for the many of us who grew up feeling as if we were also somehow part of the Turnbull family. Truly, I believe we were and are yet, for a generation of families and professionals alike have become, through Jay, members of a "family of practice," committed to envisioning a future where others live, as Jay did, "the enviable life" upon which you have staked, as upon the highest hill top, your lives and careers.

I can't begin to recount all the stories that gave me the sense that we were growing up, as a field along side you, Jay and the girls: our "First Family." I remember the stories about J.T. going to camp in Chapel Hill. I remember Amy and Kate, somewhere along the way, beaming middle schoolers, telling a roomful of grown-ups what it meant to see their brother hanging out at school (and quipping that they could hardly see him as odd when their daddy wore bow ties!). What trail blazers all the Turnbulls were! Those stories--right from the start--inspired us and showed us the way to breath life -- real lives -- full of the constitutional principles, "policy on the books," and "policy on the street." Those stories were replete, Rud and Ann, with more, with a "policy of the heart," arising from the very core of our lives together as friends, family and community.

Then, there was that proliferation of writing and research, all of it brought to life in Jay... J.T. getting on the bus... Jay's first date... J.T. in the frat house (Where have I put my Jayhawks hat?)... Jay making music (songs to brush teeth by?!?) ... J.T. opening his home to friends (Darn it, I never mastered the hand shake.) Jay always gave back so much more than he ever asked of us. Family-centered practice, participatory research, full citizenship, mutual reciprocity, family quality of life (so beautifully articulated, Ann, as only a mother could!), family support, the core concepts of disability policy: all melded from your lives together with Jay, Kate and Amy, translated expertly, eloquently... policy emulating life, elevating our understanding. And still more memories... Your years on the Hill, Rud, and the statutory base you helped give us, for Jay and all people with I/DD. At each stage of Jay's life, we knew it could happen for others, since you rarely gave us the family tales without the policy tools and the research, to boot. Oh, what gifts Jay gave you and you gave us, your extended "family of practice." Veritably, those gifts transformed us and, over Jay's lifetime, took us into the Turnbull clan.

You will, dear Rud and Ann, go on even now, even in this time of sorrow. Jay Turnbull is wonderfully, fully alive in our collective memories. He lives through his sisters, his nieces and nephews, through the Beach Center and through its next-generation progeny. He lives in the work we do every day, work he so inspired. Jay allowed you to become our "First Family." His work and your own, so inextricably intertwined, is here with us, just as it also lies ahead, in each of our futures, and in the future of the field itself. Thank you, Rud and Ann, for giving us Jay. Not only is he your North Star, but also always and forever ours.

With deepest sympathies and deepest gratitude,

Holly Riddle
NC Council on Developmental Disabilities

Monday, March 2, 2009

From Wendy Bellack

Dear Ann and Rud,

I had the pleasure of meeting you many years ago at a conference in Florida. At that time my son was very young but you inspired me with your stories of Jay. I was so sad to hear of this loss to your family – he impacted so many lives – I know that I often thought about your family’s journey as I planned life for my son, Steve. I recall Katie and her poise when she spike about her college essay and with pride as she shared her stories.

I had lunch with Ann that day – it may have been at a National Parent to Parent – to this day I ask myself: “What would Ann and Rud do?” when I am faced with tough choices in helping Steven “get a life.” My daughter, Jill, is so much like Kate and makes me proud. One of the best things about this world with autism is having met folks like you to inspire a dream and keep you motivated. My kids were fortunate to be featured in a sibling video – thanks for helping show them the positive side of each other. I hope you know that we share in this loss of yours.

Wendy Bellack and family

From Judy and Roger

Dear Ann, Rud, and Family,

We are so saddened by the news of Jay's passing. Our hearts, prayers, and love go out to you.

His life, which provided such in-light-ment while here on earth to countless individuals will continue to shine in countless ways.

Judy and Roger

From Richard and Anne Gaeta

Thank you to JT's family for allowing us into your lives and providing us the pleasure and privilege of becoming part of JT’s large extended family.

We will truly miss his presence as part of our visits to Lawrence sharing songs and jokes and food as we added to our memories of this unique and loving gentleman. Richard today remembered an important and moving moment when Jay turned to look directly into Richard’s eyes and said, “I like you Richard Gaeta.” His departure was too quick and, like my own brother’s, will surely feel as though your family portrait has turned from color to black and white. We join you in your sorrow, though know yours is deeper and become part of you forever.

I also have a notion that JT is now lounging on matching lounge chairs with Adad, being serenaded by John Denver – a picture that pleases me as much as the one here. All wishes for peace ‘til we see you once again,

Anne and Richard

Thursday, February 26, 2009

From Laura Holsen

Ann and Rud,

I was stunned and deeply saddened to hear about Jay's passing last month - such an incredible loss to your family, the Beach Center, the Lawrence community, and to those of us whose lives were touched by Jay. Jay's spirit and personality remained with me long after I was no longer his job coach at the Beach Center. I truly enjoyed working with him and learning from him during that time. I continue to remember the times we shared - singing to the oldies station while I took him around in my car on the mail runs we did around the KU campus, Jay laughing and smiling, the fun Jay had shredding paper. Those memories make me smile now, and I often find myself telling people about my time with Jay and how his life touched mine. I hope that these memories and my sharing of them (which I am sure is something that many of Jay's friends do throughout the country and world) will allow us to keep Jay's spirit in the world, because the world is better for Jay having been in it, and I am a better person for having known Jay.

Please know that my thoughts are with your family during this difficult period.

With condolences and deepest sympathy,

Laura Holsen

From Dr. Patricia O'Brien

Dear Rud and Ann,

I was very sad to hear of the death of you son JT. Although I did not know him I had heard of him from many sources including yourselves many years ago at a conference in Australia. He inspired people through his many achievements in life, his friendship as well as his hospitality. He was so valued as a person and will be greatly missed. His life has had impact around the world and his many gifts did not go unnoticed but rather have left a legacy for those who follow.

Thinking of you both at this time. The staff of the National Institute for Intellectual Disability send sympathy and support. Take care in now looking after yourselves.


from: Nina Zuna

Ann and Rud,

I hold both of you and your family close in my heart as you grieve and remember your beloved Jay.

May God, your family, and friends be your source of strength and comfort during this most difficult time.

With much love,

from: Kelly Troubridge and Alice Kitcher

Ann and Rud,

Although working at CMTH now, I began at Lawrence High working with Ryan and reading your textbook at the VW. You and Rud's commitment to Jay and to the disability field inspired me and continue to serve as a model and vision for me to share with families I work with now.

My thoughts are certainly with you,
Kelly Troubridge


I read about Jay in the KC Star. What a wonderful tribute to him and to you all his family. You are a sterling example of a loving family engaged in community.

Alice Kitcher