On My Soap Box

Adults with Down Syndrome, Advocate, Down Syndrome, Education, Family Challenges, Inclusion, Parents, People with Disabilities, Special Education 3 Comments »


Almost 50 years ago my son Billy was denied entrance into a special education school because he wasn’t 8 years old. We enrolled him in a regular kindergarten class where he blossomed as he interacted with non-disabled children. That started my firm belief in inclusion of children with disabilities into regular classes. After he entered the special school, I continued to seek opportunities for him to participate in non-segregated situations.

I belong to the generation of parents who fought for Public Law 94-142, the Education for All Handicapped Children Act (later amended to be called the Individuals with Disabilities Education Act or IDEA). I gladly joined other parents in pushing for this legislation and rejoicing in its passage. Although it was implemented the year that Billy graduated from high school, I knew that many other children would benefit from its mandates.

The principle of PL 94-142 that is used for the rationale for inclusion of students with disabilities into regular classrooms is referred to as Least Restrictive Environment. The mandate states that “To the maximum extent appropriate children with disabilities… are educated with children who are nondisabled…”

Thus it pained me to read the blog of a mother whose child has been denied the benefit of inclusion. Her daughter, who has Down syndrome, had a successful year in kindergarten. It was determined by the mother and the teacher that repeating kindergarten would benefit the child and the Individualized Education Plan was developed on that premise. At the meeting to plan goals for the coming school year, the mother was informed that her child would be placed in a special class for children with severe disabilities (a living skills class) and would not be engaged in any academic activities.

There is an involved process where parents can dispute the decision of the school personnel regarding placement of a child who has disabilities. This parent went through the legal process and was so disappointed and enraged with the school’s point of view that she gave up the fight and decided to home school her daughter.

Research and experience clearly demonstrate that children with disabilities learn more when included in regular classrooms, where they have normal patterns of speech, behavior, and learning to emulate. I believe in this so strongly that I am disappointed in the outcome of this particular case. To add to my dismay, 95 people have commented on this blog, mostly to applaud this mother’s decision.

I must make a plea to these parents who choose not to pursue their rights. If we do not insist on the mandates of IDEA being followed, they WILL disappear. Please, families, stay the course – insist on the best situation for your child. If the school disagrees with you, the success of your child will change their views.

There are many teachers and administrators who are diligent in insuring that children with disabilities are placed in the least restrictive environment and are receiving the services to which they are entitled. These professionals are concerned with providing the best education possible to ALL children.

I’m sure that on Billy’s file there was a stamp that read “Pushy Parent.” Believe me, if I had it to do over, I would have pushed harder. We must be proactive if we wish to secure the rights for our children to have the best education possible.

Belated Thanks

Advocate, Education, Special Education, Teaching 4 Comments »

Dear Abby: I am writing to thank the teachers who were kind to me when I was an at-risk child. My mother was mentally ill, my father was absent and the school was my haven. I often wish I could tell some of those adults who helped me along the way that I’m so grateful for the ways they intervened in my life. (June 3, 2010)

Although I never considered myself an at-risk child, with a working mother and an absent father, I was concerned about my family. School was my haven also and I, too, wish I could tell some of my teachers what they meant to me. It’s a safe bet that people old enough to have been my high school teachers are no longer living, so these will be belated thank you letters.

Dear Miss Quinn,

Because our high school was small, I was fortunate to have you as my freshman English teacher, my senior English teacher, and my drama coach. (As you know, this situation was not an advantage when it related to math teachers.)

You really were a dedicated teacher, one who was always prepared to stimulate us to love literature as you did. You also slipped in a life lesson each day as you had a special message on the blackboard every morning. One I remember well was “I complained because I had no shoes until I met a man who had no feet.”

You led me to love poetry as you required us to memorize poems you treasured and ones we found. Many of those poems are still in my mind, food for thought and comfort. Between my freshman and senior years I decided to enter an oratory contest. I chose Paul Lawrence Dunbar’s lovely ode “When Melindy Sings.” One day when we were rehearsing, you came into the auditorium to listen. Although I was not your student that year, you pulled me aside and coached me in the beautiful dialect and cadence. I didn’t win the contest but both of us knew that I should have.

You encouraged – required – us to write. I wrote my first journal in your class, a skill that has enabled me to write articles and books for my professional and personal benefit. I remember one day when I was looking out the window, daydreaming, and suddenly picked up my pencil to write. Rather than chastising me, you asked me to read the poem I had written.

I’d like to take a tree
And shake its bristles dry,
To dip it in the sea
And brush across the sky.

As a drama coach, you were relentless. You gave me the character roles I loved and the self-assurance I needed. I would love to have your thoughts on the things I have written and the words I have spoken since that time. You would be painfully honest and always encouraging. I am grateful to you for teaching me and for helping me to be a good teacher.

With love and respect,

Jane Bolton

Much later, when I returned to college after 20 years and 4 children, I was probably at greater risk but with more determination than ever. My first encounter was with a math teacher who had a major, if negative, effect on me. As indicated above, I did not have a good background in math and learned from my children that the current approach to math was quite different from the rote method used in my early days. As a class, we were experiencing a great deal of difficulty with the new concepts. Our teacher, apparently frustrated with our lack of understanding, stated “I don’t care whether you get this or not!”
That was a useful lesson in what not to do.

Then along came this lovely, quiet-spoken professor from the Department of Elementary Education.
Like Miss Quinn, she was my teacher in my undergraduate and graduate years. I really meant to write to her and learned that she had died. I hope that somehow she will know how important she was to me.

Dear Dr. Newell,

I entered your class with trepidation and left it with confidence. You had been giving demonstrations on TV on the “new math.” You came into the classroom with an overhead projector and a number of simple objects to show us the concepts of commutative and associative, words totally foreign to me. You manipulated the objects, saying, “See how simple it is.” And magically, I did!

At the graduate level, you had us make math teaching materials, particularly applicable to my special education needs. I remember bringing home the wires and colored balls to make an abacus, and my husband saying, “Good. Now that you know your colors, I think it’s great you’re learning to count.”
(Little did we know that my own student who was blind would find this tool so valuable.) Dr. Newell, do you know what happened? I loved math!

Years later, when I was teaching my college class in math methods for exceptional children, one of the comments on my class evaluation stated, “You’ve got to love someone who thinks a place value chart is beautiful.” I owe that to you. That and the fact that you were my stimulus and model for becoming a college teacher. Thank you for leading me to an exciting and fulfilling career.

With love and respect,

Jane Schulz


“Ready for an exciting and fulfilling career.”

I know I shouldn’t end a sentence with a preposition, Miss Quinn, but I ask you reader –
whom would you write a belated thank you note to?


Beautiful People (Part 3): A Beautiful Friendship

Auburn University, Disability, Down Syndrome, Education, Friends, Inspiration, Special Education, Teaching, Western Carolina University 1 Comment »


During my graduate work at Auburn University, I taught a demonstration class for children with intellectual disabilities. Billy and several other children rode with me from Columbus, Georgia during the summer to attend the class with local children. During our first summer, we met Steve Hinton, who was also a member of the class.

Steve, who has Down syndrome, became Billy’s best friend. His parents were professors at Auburn who, like me, were devoted to finding the best education possible for their child. One teacher who observed the class said that he had never seen a more beautiful friendship than the one between Billy and Steve.

After we moved to Auburn Steve and Billy were together each day at their regular school. They were so close that they talked on the phone after school every day and visited with each other frequently. We went with Steve’s parents to their home at the lake where the boys played in the water and Steve tried to teach Billy to swim. They put on concerts for each other, pretending to be their favorite singers. Billy had never had a real friend before.

When I completed my work at Auburn, we moved to North Carolina where I had accepted a teaching position at Western Carolina University. We regretted leaving Steve and promised to return and to expect visits from him. Although thrilled with our new home, we were somewhat concerned about Billy’s adjustment, especially being apart from Steve. When we opened our first phone bill, it was apparent that Billy and Steve had maintained their practice of talking with each other every day after school. As amazed as we were, we realized that we hadn’t explained the difference between local and long distance phone calls. We also acknowledged our surprise and delight that Billy had managed to make the calls.

Steve spent a week with us in North Carolina and whenever I visited my mother in Georgia, Billy spent time with Steve in Auburn. It was always as if no time had elapsed since their last encounter. They were still best friends. As Steve and his family moved farther away and we became involved in our new lives, our letters and visits became rare.

When Billy and I began doing presentations at various conferences, a welcome opportunity arose. We had been invited to The University of Alabama. Since Steve and his family had moved to Tuscaloosa, they planned to meet us at the conference. Billy was so excited and looked forward to a reunion with his best friend. The reunion, however, brought sorrow to Billy and to me. Steve’s mother had warned us that Steve has Alzheimer’s disease, which appears to occur more frequently and at an earlier age in people with Down syndrome than in the general population. Although we knew that Steve’s behavior would be unpredictable, we hoped that he and Billy would retain some degree of their relationship. Billy was devastated when Steve neither recognized nor spoke to us. He could not understand, as none of us can, how a deep relationship can disappear from someone’s mind. Billy sill recalls with sadness, “Steve not know me.”

Steve has improved somewhat, and we still speak by phone from time to time. Billy, however, is still sad about his friend’s inability to relate. Even as we recall their past positive experiences, it always ends with “Steve not know me.”

Like the teacher who observed Billy and Steve, I think of their relationship as the most beautiful friendship I ever saw. Have you had close friendships like this? Have you had experience with Alzheimer’s disease? What would you say to Billy?

Thanks to Teachers

Special Education, Teaching 1 Comment »

I once heard a college president say, “Teaching is a matter of life and death.” That is certainly true in helping students with disabilities reach the goal of full participation in the world of work.

This week I participated in a Conference on Exceptional Children, sponsored by the Department of Public Instruction, Exceptional Children Division, in Greensboro, North Carolina. Pollye Pruitt, a staff member in the Exceptional Children Division and a former student of mine, had invited me to join her in a session on parent-professional collaboration. I appreciated the opportunity, because this is a topic of great concern and interest to me.

We frequently hear that teachers are dissatisfied with their salaries, their crowded classes, and the abundance of paper work. This is not what I heard in these sessions. I heard genuine concern for their students and respect for their parents, an eagerness to establish relationships that would enable students to succeed. I was surprised at the intensity of the questions posed to us. One teacher asked, “One of my students told me that there was no need to invite his mother to a meeting, that she didn’t care anything about him. How can I help him understand that his mother does care?” Others asked for ways to involve the parents in the education of their children and suggestions for addressing language and cultural differences – overcoming barriers to full communication and collaboration.

A positive relationship between the home and the school is essential for students to acquire the skills necessary for success as employees and participants in the community. I am impressed with the efforts teachers and other school personnel are making in establishing this relationship.

Thank you, teachers!

Let’s Share!

Advocate, Down Syndrome, Family Challenges, Mother of an Adult with a Disability, Special Education, Teaching 7 Comments »

I see myself as a mother, a teacher, and an advocate. These roles merge into a lifetime of seeking solutions and sharing ideas, dreams, and answers. In the space of more than eighty years my family has expanded to include all those whom I have taught and who have taught me. Even the advocacy role began with my children and grew to include all persons who have been disenfranchised. So it seems that all of us are family and as family have much to talk about.

Let’s share!

This is my son Billy, who has Down syndrome. I have learned more from him than you can imagine. You can learn about our relationship and lives at grownmannow.com. (click here).

Eddy Kieffer was a student of mine at Western Carolina University. This picture was taken at his retirement party, where his merits as a special education teacher were celebrated. Click here to see Eddy’s comments.

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