Dr. Billy

Adults with Down Syndrome, Advocate, Community Participation, Disability, Down Syndrome, Education, Honorary Doctor of Humane Letters, Honorary Doctorate, Inspiration, Mainstreaming, Mother of an Adult with a Disability, People with Disabilities, Posthumous Award, Special Education, Western Carolina University 50 Comments »
WCU Honorary Doctorate William Robert Schulz

Western Carolina University has conferred on William Robert Schulz the degree of Honorary Doctor of Humane Letters

William Robert Schulz and Dr. Jane Bolton Schulz received honorary degrees as Honorary Doctor of Humane Letters during the Fall 2012 Commencement Ceremony at Western Carolina University, Cullowhee, NC, on Saturday, December 15, 2012. Billy’s Doctorate was awarded posthumously.

Following are the Honoris Causa, read by Chancellor David O. Belcher, and the speech given by Dr. Schulz:

DOCTOR OF HUMANE LETTERS
Honoris Causa
JANE BOLTON SCHULZ and WILLIAM ROBERT SCHULZ

Dr. Jane Bolton Schulz and the late Mr. William Robert “Billy” Schulz blazed a trail for what could be – and what should be – the educational, vocational, and social opportunities afforded to people who have Down syndrome and special needs.
Dr. Schulz, you were a wife and mother of three with a fourth on the way when a doctor diagnosed your son Billy, who was born in 1956, with Down syndrome. He advised you to take Billy home and love him. Love him you did, so deeply and so fiercely that you became a champion for him and for the quality of life he could have. Together you became pioneers in special education and champions for all who have intellectual disabilities.
Your journey involved risk. Refusing to accept that Billy could not start school until age eight, you secured a job at a school that allowed you, without a college degree, to teach kindergarten and to bring Billy with you. Billy thrived, and you were inspired to expand those integrated classroom experiences in a landmark textbook you co-authored, Mainstreaming Exceptional Students: A Guide for Classroom Teachers.
As Billy became a man, you both found vocations. After discovering your exceptional gift for teaching, you enrolled at Auburn University and earned bachelor’s, master’s, and doctoral degrees. Inspired by your son, you became a powerful force in the field of special education. You helped to bridge the gap between the theoretical and the “real world” by drawing upon what you learned in your own life and from Billy’s. As a faculty member at Western Carolina University for more than 20 years, you shared your experiences, ideas, and insights with thousands of students.
Along the way, Billy continued to show you that he and others with Down syndrome were capable of far more than many realized. He became a beloved staff member at WCU’s Hunter Library for 21 years. He also worked at a nursing home where he helped care for his father, and at a grocery store that earlier this year awarded him a pin for ten years of service. As you delivered hundreds of presentations and workshops on improving special education, Billy overcame stage fright to join you at some of those talks. In his own words, he helped you share the story of his life and dispel negative stereotypes of people who have disabilities, and encouraged all to seek their full promise. Together, you motivated and inspired countless others.
You also developed a statewide program to train teachers to better work with special-needs students. Your ground-breaking work challenged educators in traditional classroom settings to embrace a bold new perspective when teaching children with disabilities and to see the potential that exists beyond a disability. You were instrumental in organizing the Special Olympics program in Jackson County, an effort that spilled over to surrounding counties across Western North Carolina, culminating in a large district meet held on the WCU campus. Your love for your own child and your dogged determination to help build a better life for Billy have made it possible for many other special-needs children to reach far beyond what once was expected.
As you wrote in Grown Man Now, a poignant memoir chronicling the challenges and victories that you and your son took together: “Billy and I are like beans and corn planted together in an open field; one supplying the nutrient, the other providing the support. We believe that if you want to bring about change you have to be that change.”
Dr. Schulz, you and Billy have indeed brought about change by being that change. The rights and educational, vocational, and social opportunities for people with Down syndrome have only just begun to catch up with what you, Billy and your family envisioned. In Billy’s role as son and brother, boy and man, and your role as mother and educator, you both blazed through uncharted territory and helped others realize what was possible and what should be normal for persons who have Down syndrome and intellectual disabilities. The field of education is far better today because of the contributions you both have made.
In recognition of these many accomplishments, in appreciation for enriching our communities, and in gratitude for raising the bar of our humanity, the Board of Trustees of Western Carolina University is pleased to award, and the Chancellor to confer, the degree of Doctor of Humane Letters, honoris causa, upon Jane Bolton Schulz and posthumously upon William Robert “Billy” Schulz at this commencement ceremony, December 15, 2012, with all the rights and privileges thereto appertaining.

Chancellor David O. Belcher awards the Honorary Doctor of Humane Letters to Dr. Jane B. Schulz and to William R. Schulz (posthumously)

Chancellor David O. Belcher awards the Honorary Doctor of Humane Letters to Dr. Jane B. Schulz and to William R. Schulz (posthumously) at the Fall 2012 Commencement at Western Carolina University.

Dr. Jane B. Schulz
Acceptance Speech

Greetings: Chancellor Belcher, Distinguished members of the Platform Party, and Members of the Graduating Class:
I never dreamed of receiving such an honor, and wish Billy could be here. He really deserved this more than I do.

I developed Bell’s palsy soon after Billy died, so please bear with me if my speech is difficult to understand.

My family and I came to Cullowhee in 1971, looking for a fresh start. Like others here today, I found the career of my life at Western, in an environment that was stimulating and rewarding.

For those who are graduating, my wish for you is that you find an equally
fulfilling fresh start.

Billy was the motivation for my career, and he was the one who made our presentations remarkable.

Here was this man, whose IQ measured below 60, relaying a message that inspired others.
Billy’s message, told in his unique language, repeated:
• that every day was a good day,
• that we all have work to do,
• that we have friends everywhere,
• that it’s nice to laugh and to relax,
• that you love your family,
and that you go to church on Sunday because people are counting on you.

Each of us can accomplish surprising things.

In his presentations, and in his life, Billy exemplified that friendship has no
boundaries, that each of us is important, and that all of us have contributions
to make in our community.

Billy made friends with everyone. “Hi, I’m Billy; you got a dog?” made it difficult for anyone to ignore him. We have heard from people we don’t even know who, frequently, would go in the store where Billy worked and be uplifted by his greeting and cheerfulness. We all miss him.

Even though he dealt with anxiety, frustration, and health issues, just like the rest of us, Billy ended each presentation with “an’ I got a good life.”

Looking out at all of you gathered here today, and thinking of the sense of purpose all of us represent, I think Billy would say, “Well, time to get to work!”

Last August, Chancellor Belcher called to tell us about the honor Western Carolina University intended to bestow upon us.

During that time, Billy was sick with the beginning of the illness that led to his death.
I sat on his bed and explained the honor to him.

He asked, “Then who I be, Mom? Dr. Billy?”

And so, speaking for my amazing family, our devoted friends, for myself, and especially for Dr. Billy, thank you.

————————————————-

Related Link:
http://news-prod.wcu.edu/2012/12/wcus-fall-commencement-set-for-dec-15-at-ramsey-center/

Down Syndrome Awareness Month

Adults with Down Syndrome, Down Syndrome, Family, Mother of an Adult with a Disability, People with Disabilities No Comments »

Since October is Down Syndrome Awareness Month, it seems a good time to look at what it means to have Down syndrome. First of all, what does the name mean? Langdon Down was a physician who first identified characteristics of people previously called Mongoloid, due to the slanted eyes seen in natives of Mongolia. Down is capitalized because it is a proper noun; syndrome is not because it is a list of identifying characteristics seen in a particular population.

Because of the similarity of physical characteristics, it is frequently assumed that children and adults with Down syndrome are always alike in other ways. The truth is that they may be quite different in personality, temperament and intelligence. The video displayed is a good way to look at these individual differences.

Ten Things People with Down Syndrome Would Like You to Know
Ten Things People with Down Syndrome Would Like You to Know

 

My son Billy, for example, was raised in a family with three other children, a father of German descent, raised in the mid-west, and a mother of English-Scotch-Irish descent, raised in the south. He has characteristics of both parents and a personality of his own. If you have questions about Down syndrome or Billy, I will be happy to answer them. If you have specific questions about the causes and demographics of Down syndrome, you can Google Down syndrome and find numerous sources.

I welcome your questions and comments.

“I can’t read the words.”

Adults with Down Syndrome, Courage, Education, Frustration, Mother of an Adult with a Disability, Reading 6 Comments »

If you follow our blogs, you know that my son Billy has overcome a number of  hurdles and has succeeded in many areas of his life. He graduated from high school, has been successful in several jobs,  is considered a valuable member of our community, and is certainly a cherished and important part of our family and circle of  friends.  He is a competent and happy man. However, there are times that  Billy expresses dissatisfaction with his disabilities in certain areas. He cited one of these areas this morning. As we were leaving church, he said to me, “I can’t read the words.”

Reading a magazine.

Reading a magazine.

After we got into the car, I asked him to tell me about this problem. For years we have marveled at the way he follows the hymns half a beat behind, presenting the effect of singing with the congregation. He is so talented in doing this that it appears he is following with the congregation. One Christmas a friend, who holds a position in our church, asked me if I thought Billy would be willing to read a piece in a program. I told her that he reads very little and she was totally surprised.

We have worked on reading for most of Billy’s life, in school and at home. He brings in the paper each morning and reads the weather report and some of the headlines. He reads his TV guide and parts of People magazine, where he is prompted by illustrations and familiar terms. The hymnal, however, is not illustrated and has few words relevant to Billy’s life. He jumps in when phrases are repeated in the chorus, as in the

hymn Till We Meet Again, which we sang this morning. I did not realize how frustrated he was with the other parts that he could not read.

We talked about this again after we got home and Billy said, ” I am so dumb.” I always tell him that he is smart in so many ways and that “dumb” is a hurtful word and one to be avoided. It breaks my heart to hear him say that about himself.

Although there are over 900 songs in the Methodist Hymnal, we will find a way to work on reading them. Perhaps we can isolate words that are most frequently used and establish a hymn sight word list. It will be a challenge for both of us.

Once again I am amazed at Billy’s courage. He loves to go to church. He frequently nods during the sermon and I realize he doesn’t comprehend the message. If I poke him he tells me, “The Bible says don’t poke in church,” and we both giggle. This is another measure of his courage. Even when he doesn’t understand, he hangs in and gives it his all.

There must be a better term than “dumb.”

Life Expectancy

Adults with Down Syndrome, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability 11 Comments »

I like the TV show Glee, but I missed the season finale. Tom thought I should see it, so I found it and watched it. And watched it again.

We knew that Sue, the irascible coach (Jane Lynch), had a sister who had Down syndrome. In this episode, the sister had died and Sue was angry and bereft. She explained her feelings:

“Everyone told me that people with Down syndrome don’t live past 30. But my sister lived to 35, then to 40, then 50. I thought that after this, we could grow old together. She lived a life with no enemies and no regrets; why is it her time and not mine? How come I’m the one still standing here?”

It has been a common assumption that the life expectancy for those with Down syndrome is short. But as the life expectancy for the general population has increased, so has that of persons with Down syndrome. One reference stated that the average life expectancy of individuals with Down syndrome has increased from 9 years in 1929 to 12-15 years in 1947 and 18 years in 1961. The current projection is that 44% will survive to the age of 60 years and 13% to 68 years.

A graph showing increasing longevity for people with Down Syndrome

Increasing Longevity: People with Down Syndrome

The coach said, “I don’t know how to deal with her death. For now I’m just going to miss her.”

As for me, I don’t know how to deal with these projections. Billy is in his 50s and I am in my 80s. It’s a toss up to see who will go first. So like the coach, I don’t know how to deal with it. For now I’m just going to enjoy him.

Fill Out The Attached Form . . .

Adults with Down Syndrome, Advocate, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability, People with Disabilities 8 Comments »

Rather than writing my intended blog, I have spent the weekend trying to follow directions. I have been fortunate to keep my son Billy as a dependent on my health plan even after my retirement. A couple of weeks ago I received papers from the insurance company  to submit to maintain this coverage. Since the due date was stated as October 15 I set the material aside. Friday (September 4) I received another set stating FINAL NOTICE (never a good sign). But now I understand why so much time has been allowed.

An important part of the documentation required is the completed Incapacitated Minor form signed by our physician. Since I did not have that form I searched until I found a link where it could be downloaded. The URL was clearly printed with the usual assemblage of characters followed by a space and CoverRequestedChild.pdf, with the entire URL underlined. I tried to access the form, alternately typing it with the space, without the space, with the underline, and without the underline. I checked and double checked, always looking for my customary typing errors, always going to a non-existing site notification. At last I called the help number listed. This is where the fun began.

I was delighted to receive a courteous, encouraging female voice, eager to answer any questions I might have.

“I am unable to access the CoverRequestChild.pdf.”

“Did you enter the URL listed?”

“Yes I did.”

“And what did you see?”

“The indication that there was no such page.”

“I don’t understand.”

At this point, I asked if I should insert the space or the underline and she informed me that she would need to ask her supervisor and would I please hold. I held. Some time later she returned to the phone, stating “The space should be an underscore and there is no underline. You know, a lot of people have asked about that.”

While I had this friendly person I decided to ask a couple of other questions.  I told her that I have a letter from the insurance company stating “William will be continued as a dependent on your Family Type certificate until he marries or ceases to be incapacitated (capable of earning a living).” I wondered if that would serve the purpose.

“Please hold while I ask my supervisor.” I held. “No, that is no longer acceptable.”

Another question: “I have a letter from our physician dated 2007 stating in part “William has Down syndrome, a condition present at birth. This is a lifelong condition which will render him unable to support himself.”

“Please hold while I ask my supervisor.” I held. “No, that is not recent enough.”

Actually I do have another question: Is it possible that someone thought Billy would no longer have Down syndrome after three years?

Now I will get the physician’s affidavit, fill out the forms, and try to get all of it in by October 15. I’m glad I have that much time to complete the process.

Does anyone else have this much trouble filling out forms?

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