Margaret, Embry and Mama at the Beach

Jane has graciously asked me to share with her readers how my family is caring for my older sister, Margaret, who has Down syndrome. It’s one of the most common questions that people ask me when I go to speak to parent groups and seminars: “What will happen to your sister when your mother dies?”

To be honest, it’s a fair question. My mother is 91 years old, so folks wonder, how could she possibly still take care of an adult child with Down syndrome? And the answer is, it’s now a group effort.

Our father died in 1983, and since then, our mother has been Margaret’s confidante,  caretaker, and as always, her lifelong advocate. Even when my father was alive, Mama was the one who took care of things; especially where Margaret was concerned. She continued to drive into her late eighties, and took care of all the household duties and bills. She drove Margaret to all of her social events, to the grocery store, to church, and even on short trips. People are always amazed when they meet her, marveling at how active, funny and engaging she is at 91 – she is truly an amazing person!

But, things have changed around their house now. Mama knew she needed to stop driving, especially at night, and the household chores were starting to overwhelm her. I called one night at around 8:30, and they were just sitting down to supper. When I asked Mama why they were eating so late, her response was, “I don’t know, I just couldn’t get it together.” I knew it was time to get her some help.

My brother and I talked, and decided that we needed to find someone who could help out on a daily basis with cooking, cleaning and driving Mama and Margaret to their activities and appointments. We were blessed to have a friend recommend someone, and now we have two wonderful ladies who share the duties. Brenda comes every morning, drives Margaret to her activities with the recreation department, and then comes back to the house where she cleans, fixes lunch, does laundry and takes Mama to the grocery store, the bank, or wherever she needs to go. Since Brenda already had a job in the evenings (taking care of another elderly person), we needed to find someone else who could work a few hours every night. Brenda knew of someone in her church that was retired and looking for a part-time job, so she recommended Marion, and she comes in Monday through Friday from 5:00 – 8:00 p.m. She makes dinner, cleans the kitchen, and takes care of anything that needs doing before they go to bed.

Mama and Margaret are still able to manage things at night, and on the weekends, as I usually go over on Sundays to spend the day with them and take care of the bills. I know there will come a time when they will need full-time, seven day a week help, but for now, our set-up works just fine.

I realize that I still haven’t answered the question of what will happen to Margaret when my mother is gone, and the truth is, we don’t have “a plan” in place. My mother and I have discussed it, but it’s difficult for her to talk about. I don’t think my mother ever considered that Margaret might outlive her. She feels responsible for Margaret, and doesn’t want my brother or me to “have to worry with it.” I have tried to assure her that this is no burden for me, and that I am honored to take care of Margaret; I only hope I can do as good a job as my mother has.

Two years ago, we set up a Special Needs trust for Margaret, so that any assets she has will be protected and not cause her to lose her government benefits. We also established guardianship so that I will become her legal guardian once my mother is no longer living.

What I hope for is that Margaret is able to continue to live in her home (which will go into the trust once my mother has passed on), and we will have wonderful people like Brenda and Marion to help out. Since I will be Margaret’s legal guardian upon my mother’s death, those decisions will be left up to me. My plan is, first and foremost, to do what’s best for Margaret, and to make sure that she continues to lead a happy and fulfilled life.

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

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.

This is me and Nancy Tate. Nancy is in charge of ushers and I be an usher in July and August and lots of times. And Nancy is so pretty.

When me and my mom joined the church someone came to see us. They asked “What do you want to do in the church?” I told them “I like to usher.” I was usher when we lived in Sylva and I like to usher. I like to pass out the bulletins and show people where to sit. I like to take up the offering and take it to the alter. And I like to show people when it’s their turn to take communion.

I meet lots of people when I be usher. My captains are David Lively and Jim Dobyns. They tell me which job I have each Sunday and sometimes we sit together in the back room during the sermon. When I don’t usher I sit with my mom.

Everybody tells me I be a good usher and I see lots of the people at my store too. People from my church. Ushering is important. I try to look nice in my suit and tie. Everybody does. We have a great church.

While equal opportunity employment is a vital element in the inclusion of persons with disabilities into the community, there are other important ways to help accomplish this goal. An organization called SHOUT (Students Helping Others Understand Tomorrow) makes a concerted effort to introduce diverse groups of people to selected high school students.

SHOUT is sponsored by the Kingsport Chamber of Commerce and is designed to inform future leaders of possibilities for service in the area. For several years, Billy and I have been asked to meet with the group on Diversity Day, one of the five categories in the program. One of the stated goals for this session is: “To initiate, foster, and promote an understanding and appreciation for all people and their unique perspectives and contributions to the world.”

My thrust is the development of attitudes from tolerance to acceptance to celebration of diversity. Billy shows his slides, pointing out the normalcy of his life and the importance of his family. His real message, however takes place during his interaction with the students at lunch time and after the program. Initially reticent, they find that he is easy to talk with and fun to be around. Evaluations referred to it as “an eye-opening day,” stating, “Billy was awesome; it was definitely an amazing experience.” In planning their graduation ceremony, the students asked that Billy hand out their certificates. On the appropriate night Billy, dressed in suit and tie, shook hands and gave out certificates to all the students. At the end of the program, students write letters to thank the session leaders. One letter addressed to me read:

We were very privileged to have you speak to us on Diversity Day. Your presentation was a touching and heartwarming experience. Not only did you show us that you should not be ashamed of or try to hide your differences, but you urged everyone to CELEBRATE what makes them special. I think nearly everyone can agree with you that Billy has a way of teaching people that no one else is capable of. He has an extraordinary gift and that is something to celebrate.On behalf of everyone in the SHOUT program, thank you. We were blessed to have you!

It is a joyful opportunity to be involved with this group – future parents, professionals, and employers.

Do you know of community organizations that encourage and promote the inclusion of people with disabilities? Is there potential in any of your social organizations to develop such ideals?

Billy is a hoarder. We always called it a “pack rat” and thought it was somehow connected to his having Down Syndrome. I located an entry in my journal dated January, 1999.

John is on the way to build shelves in Billy’s study for his media center. We have worked for weeks to empty this tiny room with 17 years’ collections in it.

When we moved two years later, much of Billy’s “stuff” mysteriously disappeared. However, we moved into a larger house and like a carp thrown from a fish bowl into a pond, Billy’s stuff adapted to the size of its environment. The TV Guides, 8 track tapes, and xeroxed copies of Jane Fonda were no longer there, but the system grew to include video tapes, Peoples Magazine, and DVD films. Again, with the help of Billy’s siblings, we sought a solution to the unwieldy collection.

Tom spent most of last week converting a rarely used garage adjacent to Billy’s apartment into a new media center. It contains many shelves, a place for a spare bed, niches for Billy’s desk and his stereo player, and a spot for his exercise machine. In his usual manner, Tom created a beautiful room, professionally built and thoughtfully made to accommodate Billy’s treasures. Needless to say, Billy is thrilled with the results and is moving slowly to make it a true media center. Mary hauled trash (my term), purchased materials, cooked meals, and was on hand for any errands.

Ironically, in Sunday’s newspaper, I noted that one of the TV stations listed about four hours of programs about hoarding. I watched some of the stories and was amazed at the gravity of this compulsive disorder. Apparently there are around three million people in the United States who are living in dangerous, unhealthy situations created by hoarding. In the recorded versions the treatments required a clinical psychologist or certified organizer plus dozens of vans to haul away things people had saved. In one situation it was revealed by the children that before their father died he had for years removed his wife’s collections on a regular basis.

I no longer regard Billy’s disorder as a “unique challenge.” The unique aspect is the remarkable and loving help from his siblings.

Billy’s new Media Center takes shape.
Our family’s greatest gift is the ability and desire to work together.
There was excitement, some tension, and a few cross words.
But mostly there was love.

Please share how you deal with your unique challenges.

“A woman and her husband are filing a ‘wrongful information’ suit against a doctor who recommended they terminate their pregnancy of a child with Down syndrome and provided such negative and prejudicial information to them that they felt they had no other choice. The couple argued that the doctor failed to inform them of supports such as early intervention, family support and educational opportunities that are available to individuals with DS and their families.” (Down Syndrome News, Vol. 31, #1)

This allegation is a positive step toward revealing the problem leading to uninformed decisions about terminating a pregnancy. Parents need to be given a more hopeful, positive view of what it’s like to have a child with a disability in the family. Young couples who fear they will have a financial burden should be advised of the benefits and assistance available to them throughout the life of their child. Those who fear they do not have the necessary resources need to know about services provided from birth through adulthood. And they need to know how other parents feel about their child who has Down syndrome.

Patricia Bauer, in a speech delivered at a Down Syndrome Conference, suggests things that we can do to change the attitudes toward Down syndrome in the medical community. She suggests that those of us who are concerned educate doctors and genetic counselors by visiting their classes or professional meetings, by building relationships with hospitals, and talking with families who have a fresh diagnosis.

All of us aren’t able to accomplish such a mission, but there are a few people who are giving talks to physicians and genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

There is extensive research offering recommendations for delivering the news, either prenatally or after the baby’s birth. Parents have expressed one clear preference: Don’t say “I’m sorry.” or”Unfortunately, I have some bad news to share.” Many parents who were interviewed felt that the information provided to them was inaccurate, incomplete, or delivered in a manner that was offensive and damaging.

One mother commented that “we can all agree that regardless of when parents receive the diagnosis of Down syndrome, it is difficult. The challenge for all of us is to work to educate health care professionals, the media, and educators about what people with Down syndrome and other intellectual disabilities bring to this world. These are the people who impact the decision making of parents and the public at large. We need them to present accurate, up-to-date and unbiased information.”

When you receive news that you didn’t expect, when the baby you planned is not the baby you planned, it is natural to be hurt, afraid, and angry.But when you accept your challenge, you enter a new world. You learn that there is much more to your child than an extra chromosome, that this is a child with unique requirements and also unique contributions. And you will learn that he or she will be a blessing to your family and to many people who learn to know and love your child who has Down syndrome.

Our family is complete in Billy’s presence and in his love.
Little sister comes home, 1957.

Although prenatal testing is widely used, it is not perfect. I have a friend who told me of her daughter’s unnerving experience:

The day started out as any other . She was 16 weeks pregnant with
her second child. It was time for the monthly visit to the
obstetrician . She was told there would be a routine test given
called an alpha fetoprotein test. This could determine any
abnormalities like spina bifida , anencephaly, Down syndrome, or other
chromosomal problems. The test was given and she left the office to
run other errands. A few days later, she was called and asked to come
in with her husband to talk with the doctor. When they got there, he
said it was the worst test he had ever seen since he had been
practicing. He then explained to them all of the abnormalities that
this child could be born with. He was very discouraging and told them
that they could choose to have a “therapeutic reduction” rather than
take a chance on a severely “handicapped” child . Without
hesitation, they both said they would not consider that as an option.
” Therapeutic reduction” is the politically correct term for
abortion. Their belief that this was a child would not allow that.
So for the rest of the pregnancy much praying, reading, studying, and
preparing was done. At the delivery there was on hand a neonatal
specialist to evaluate and observe the abnormalities. A beautiful,
healthy, perfectly formed little girl was born. She is now a lovely
14 year old young lady who is the joy of her family, her friends,
her school, her church, and her community. What if she had been
“reduced” ?

Other pregnant women whose test results are normal may give birth to a baby with Down syndrome. There are a number of blogs relating such experiences when the birth is a total surprise.An excerpt from a recent blog indicates the difficulty in accepting this revelation:

I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn’t have it. I held her and looked at her like she wasn’t my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over…she locked eyes with mine and stared…bore holes into my soul.

However, an investigation by the Associated Press concludes that some inherited diseases and chromosome aberrations are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

One biology professor at a noted state university views the termination of a pregnancy of a child with Down syndrome as a moral imperative. Many physicians and counselors are not well informed about Down syndrome and fail to present the positive views that many parents experience.

There is a contradiction in our society’s increasingly friendly attitude toward people with disabilities and its obsession with developing more revealing genetic tests. If we are so willing to screen aggressively to find these disabilities and then potentially abort the fetuses, what does that say about the value of the lives of those people living with the disabilities?

Abortion is a private, personal choice. Perhaps the dilemma could be softened if people were advised about other options, if they were given more information on which to base decisions. In our next segment we will investigate alternatives to “therapeutic reduction.”

It’s easy to tell when Billy has been looking at family photos.
He will always ask, “You member I played that toilet paper?”
We can’t imagine life without Billy’s presence.

As pointed out in previous blogs, children and adults who have Down syndrome are contributing members of our society. They are essential members of families and communities; they are beautiful people. We have come a long way from the 1950s, when Billy was born. During this decade an estimated half a million of children born with Down syndrome were institutionalized, often under abusive and degrading circumstances. We have come a long way. And yet . . .

Since 2007 it has been recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. ALL pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge – women to terminate their pregnancies, which is what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally. (Bauer, 2004)

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics – selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people. It is well known that as maternal age advances, the risk of Down syndrome increases. Pregnant women 35 years of age or older have for some time been routinely offered amniocentesis.The combination of maternal age and elevated serum alphafetoprotein (AFP) appear to be more efficient than either alone. However, such testing and predictions are far from perfect.

To be or not to be – what a question! In future blogs we will discuss the issues surrounding prenatal testing and explore other alternatives. Please join the discussion.

Bad News/Good News

When Billy was born in 1956 there was little known about Down syndrome; we didn’t get a diagnosis until he was eighteen months old. By that time, he was well integrated into our family, so we never experienced the sharp, immediate adjustment that families now deal with at the birth of a baby who has Down syndrome. Our frustration and frequent agony were in having no answers while still recognizing his developmental delays.

Today the recognition of the characteristics of Down syndrome frequently occurs at birth and sometimes before birth. The recognition may be traumatic or, in some cases, unacceptable. These are issues that we will explore in future blogs. Today I want to share the replay of a program on the TV show “The Doctors,” which presents the bad news and the good news of learning that a baby has Down syndrome. I am grateful to a Facebook friend for making it available.

Please press arrow to view clip.

The concept of “a different idea of the perfect family” presented by the young mother in this clip is not readily or easily accepted. My previous blogs presenting “Beautiful People” illustrate the expression of this concept but do not reveal the difficulties in acquiring it. Such an attitude requires the adjustment of expectations experienced by the total immediate and extended family. It may also be dependent on family and community resources as well as the array of difficulties that may be part of the child’s disabilities.

I love the attitude of the physicians in this clip! They do not present the revelation of Down syndrome as “bad news.” I have a friend, a pediatrician, who has adopted this attitude since the birth of her child who has Down syndrome. She told me “In the past I have had the responsibility of disclosing the diagnosis of Down syndrome to families. Since the birth of my daughter, I no longer begin that message with ‘I’m sorry to tell you…..’.” These experiences add a point of view that most physicians do not have.

Scientific advances now present the possibility of diagnoses at both the prenatal and postnatal stages of a child with a number of genetic disabilities, the most prevalent of which is Down syndrome. These opportunities also present choices which are available, choices with both personal and ethical considerations. It is my intention to explore some of these options. I hope you will join in the discussion, helping us to understand these complicated issues.

Have you had difficult decisions to make concerning your child or children? Do you have opinions concerning these decisions? We welcome all comments and opinions.