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• Coping with a Diagnosis by Dr. A Dean Byrd
• If People with Down Syndrome Ruled the World by Dennis McGuire, PhD

Coping With a Diagnosis

A Presentation Sponsored by the Utah Birth Defect Network, Utah Department of Health
2008 Annual Conference

January 19, 2008

Birth Defects: A Life Time Journey for Children and Families

Dr. A. Dean Byrd
Thrasher Research Fund
University of Utah School of Medicine

Introduction

I appreciate the invitation to spend a few minutes with you this afternoon. My schedule did not allow me the luxury of joining you for the full conference, and I have to leave shortly after. I hope that what I present to you will not be a repeat of what you have already heard today.

I did complete a post-doc in pediatric research at the Medical College of Virginia. So as I prepared this talk, I was flooded with faces of parents and children with whom I had worked over the years. As the president and CEO of Thrasher Research Fund, a fund dedicated to pediatric research, I make an effort as I travel around the world not to lose track of the faces of the children and families who suffer---sometimes quietly and alone and some times needlessly. From the countries of Africa, Europe, South America, even the Islamic Republic of Iran, Thrasher Research Fund has supported research to improve the lives of children and families.

When a child receives a diagnosis of a birth defect, the diagnosis is most often laced with uncertainty. I recall the faces of moms and dads and vividly remember the gender differences in their faces: the mothers’ faces seem watered too much and the fathers’ faces seemed not watered enough. We will talk a bit later about emotionality associated with such diagnoses.

In order to make this short presentation meaningful and helpful, I am going to resist giving you an academic lecture on the research or a touchy feely lecture with an affect center. Rather, what I would like to do is to translate in practical ways what seems to be healthful and helpful. That is, to acknowledge those practical interventions that really do contribute to helping the situation and improving the health of individuals and families when a child receives such a diagnosis.

Unfortunately, health care providers don’t always seem able or even good at such translations. In fact, the bedside manner of some of my colleagues seems sufficiently atrocious though I am encouraged by improvement ushered in by parents rather than internal to the health care system.

Therefore, throughout this presentation, I have included 6 to 8 sound bites or one- line statements around which health care providers and families might build practice and even policies.

When a child is diagnosed, it’s always a family diagnosis. And when a child is diagnosed, it’s always out of season. And when an event occurs out of season, there is always trauma, a kind of shock laced with elements of uncertainty and disbelief. The response of health care providers does not always consider the context within which help is offered.

Perhaps, there is a desensitization that occurs on the part of health care providers because of the continuous exposure to the unexpected but such is not the case with parents and families. Or maybe there is lack of what I call cultural humility. For those of y you who have taken or heard about a course that I teach in the social context of medicine, you know how much I hammer this topic.

Consider the following documented health care provider responses to the birth of a child with Down Syndrome—notice that I did not say a Down Syndrome child but rather a child with Down Syndrome with the emphasis on the child.

“So they diagnosed Amelia right away, on the delivery table, she was barely out, I barely got a chance to catch my breath or marvel at my first baby when this doctor pours this bad news all over us ‘She’s got Down Syndrome,’ he says to us, very coldly. And after he tells us about blood tests and confirmations and all this stuff, we say to him, ‘But what does that mean? What should we expect? And just as coldly, he says, ‘Don’t expect much. Maybe she’ll grow up to be an elevator operator. Don’t expect much. So we clung to each other and cried.”

Another response,

My doctor was so angry with me, he couldn’t believe I didn’t take the test, “How could you let this happen?” He yelled at me. “You’re 40” But I think something else. Even though he’s mentally retarded, he could be a good person…It’s like finding out you have a new job. You just do it, and you accept it, that’s all there is to it.

A Final response,

So I had a section and my doctor came in seven hours later and I was still pretty wiped out and he stood there with me and he says to me with tears in his eyes, he says, “Well, you have a Down syndrome child. And I didn’t know what he meant, I says, “Is it a cold does it go away, and what the hell is it?” And he says, “Patsy the baby is mongoloid.” I mean, it hits home, it’s like, “Are you for real?” And then he looks me square in the eyes and he says, “We have some papers, you could award him to the state if you don’t want him.” I looked at my doctor that just delivered my son, my doctor that I loved, we had such a friendship and I say, “Get the hell out of this room.”

The data from these narratives reveal rich data, and like all good qualitative Research, it is hypothesis generating. For example, from such rich data, we might form testable hypotheses of how a certain intervention, say the teaching of cultural humility might not only improve a health care provider’s manner but how such an intervention might improve health care for the child and the family.

None of these docs, of course, had taken my course in the social context of medicine. Had they done so, they would have known that such responses would have had them included as a part of the problem, not a part of the solution.

Challenges such as Down syndrome (or any other diagnosis), don’t determine who you are but rather your response to such challenges determines who you become. Learning that your child has such a diagnosis gives parents the feeling of having their world turned upside down. Everything in their life may suddenly feel out of control. This is because parents don’t choose for their child to have this challenge but they do choose how they will respond, and it is often others, including health care providers who can help them to fashion healthy and helpful responses.

Here is where the practical translations come. Please note when I use the word, you, I am talking about moms, dads and family members.

Acknowledge your emotions. Normalize your responses no matter how overwhelmed or uncertain you might feel. An abnormal or atypical response to an abnormal or atypical situation is normal.

Don’t let dealing with the challenge interfere with your relating to the child.Remember, the child first, the challenge second. Always keep in mind that a disability is not an inability. Children are children. I always tell parents to view the similarities that this child has with other children first, and view the difference second. Such similarities serve to stabilize, the differences can enrich. I have often thought that if our disabilities or challenges had physical signs like the child with Down syndrome, we might be surprised how similar we really are. This view was shared with me by Dr. Mark Allen who some of you older folks might remember when I did a rotation at the old American Fork Training School many years ago. We all have challenges of one sort or another. They just don’t rise to the level of a diagnosis.

In coping with the diagnosis, learn as much as you can about your child’s condition but don’t overdo it. The best prescription is knowledge accompanied by wisdom. And keep in mind that scientific knowledge is relative forever. Biomedical knowledge increases and changes daily. Ask questions but double check the answers. “Experts” know a lot but not everything.

Seek early intervention and use a team approach. When your child is diagnosed with a birth defect, early intervention is usually the best strategy. Bring a team of experts together to assess your child’s needs and establish a program of care, early intervention services including support, identification of assistive technology can help practically. Such a team approach has the added advantage of bringing people together with you present---support from both within and without.

Keep a journal of your feelings and thoughts. Get them out of your head. Write about your child. Journals are wonderful ways of making sense. As times goes on, you will be able to look back and see that things are improving and that you are moving forward, even though at times it may not seem so. Journals let you document movement, and movement is important when things seem to be stationary or still.

If you want to give your child the good gift, give him or her mom and dad in good condition. Continue routines in your life. This does not mean that all is business as usual. But it does mean that the child becomes a part of the routines and structure. Such structure must always have elements of flexibility. This helps with the coping processes.

Learn to take emotional vacations. In fact, you don’t need to travel far from home to do so. Select a day or a particular time, and do some of the things that you use to enjoy. Allow yourself the luxury of just doing something that you want to do whether it is simply a long walk in the park, a trip to a nearby attraction or a drive to a nearby community. Leave your cell phone at home and don’t be on call for a couple of hours. Such emotional vacations approximate real getaways but without the stress of having to pay the bills. You can either go alone or with someone. The key to the success is to take an emotional vacation when you really don’t need it. It’s prevention. So when you do need such a vacation, you know exactly how to do it and what its benefits are. Just implement the plan.

Take care of family relationships and let family relationships take care of you. Although there will be added focus on your child, it is important to spend time as you normally would with your other children and your spouse. It is healthy to have fun together. Relieving stress and strengthening family relationships will allow you to cope better.

Become involved with support groups as appropriate. However, keep in mind that no two children are exactly the same. Don’t become so enmeshed with support groups that you lose sight of the child or forget about the permanent support group: the family which includes extended family. Each family’s support is unique. When family members ask to help, never say yes or no. Say something like, “That’s a really good idea or let me give it some thought and call you.” Think a bit about offers and determine which you will accept and which you will not. Family members can help. They don’t need to take over.

Avoid emotionally draining situations. Sometimes, well-meaning friends and family members will say the worst possible things at the time of diagnosis. They truly want to help but sometimes don’t know how to respond. Their words may hurt or frustrate. Do not feel afraid to be assertive with your needs. Don’t think of it as selfishness but rather self-preservation---a bit of self-nurturing.

Share what you have learned. You will be the recipient of knowledge and wisdom and your experiences could help others. Such sharing provides connections and invites you to join a kind of reality.

And finally, perhaps the most politically incorrect intervention that you will hear today. Use spiritual resources. It’s doesn’t matter what your faith tradition is, finding meaning in challenges can help deal with challenges.

I want to spend a little time talking with you about something I refer to as “Doubled Discourses.”

Parents, particularly parents who rely on support groups, come to speak a doubled discourse of both difference and normalization. On the one hand, they must come to terms with a baby who wasn’t expected, a baby whose developmental trajectory may be largely unknown, and known to be different from other family and community members. On the other hand, families in the support group are given a rich array of resources for the acceptance and incorporation of their child and taught that they should have aspiration for their success.

In describing this doubled trajectory, the following parable is often told. Imagine you have planned a vacation to Italy, to see the rose gardens of Florence. You are totally excited, you have read all the guidebooks, your suitcases are packed, and off you go. As the plane lands, the pilot announces, “Sorry ladies and gentlemen, but this flight has been rerouted to The Netherlands.” At first you are very upset: the vacation you dreamed about has been canceled. But you gradually discover that the blue tulips of Holland are every bit as pretty as the red roses you had hoped to see in Florence. They may not be as famous, but they are every bit as wonderful. You didn’t get a red rose. But you got a blue tulip, and that’s quite special, too.

This parable of the blue tulip opens up a discussion of doubled discourses in which recognition of difference is substituted for judgment of abnormality, and enlightenment occurs. Like all metaphorical journeys of enlightenment, the one which many parents describe, is time consuming, fraught with tests and challenges, and, of course, leads to great rewards. It entails a movement away from focusing on abnormality in their children to accepting differences variously described as physical, mental, emotional, and sometimes, spiritual. Thus the eye and facial bone structure or low muscle tone so characteristic of a child diagnosed with Down syndrome becomes perceived as adorable and appealing rather than stigmatized in infants and toddlers, their eagerness and good humor are valued as signs of openness to experience rather than as simple- minded, their affectionate presence and ability to appeal to strangers are resignified as special gifts of a child. In journeying narratives, doubled discourses provide maps, metaphors and images sometimes described in terms of sameness and sometimes as difference. Such doubled discourses inform not only parental perceptions, but professional attitudes and activist aspirations as well.

Now, I want you to have a little experience with me. First, think of a child who has a diagnosis. Choose any child who has caused you to be interested in or to attend this conference. Think of the diagnosis, with all of its uncertainty. Think of the physical, mental, emotional and even spiritual characteristics. Think of the diagnosis and the predictability or lack therof. What the child can and cannot do---not so much in terms of disability and ability but in terms of strengths and areas of needed improvement. Now think of yourself, in about 50 years—what’s the diagnosis, what’s the level of uncertainty. You may not be the rose of Florence but you just might be the blue tulip of The Netherlands---it’s a journey of difference.

You see, all of us, are more similar than we are dissimilar to those children who have such diagnoses. The recognition of such similarities do indeed help stabilize us a the differences enrich our lives in ways perhaps we might not ever imagine. The final message is this: always focus on similarities first. They help us to connect, to feel valued, helps to reduce distress or manage stressors. Our responses to the difference---can really make all the difference.

If People with Down Syndrome Ruled the World

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.

If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.

Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.

We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.

However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and ...can they dance! (and by the way, who needs a date... “Just dance”).

Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.

It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)

Order and Structure would rule

We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking...“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.

Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.

What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast ... they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.

So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:

• Schedules and calendars would be followed.
• Trains & planes would run on time.
• Lunch would be at 12:00. Dinner at 6:00.
• Work time would be work time.
• Vacation would be vacation.

At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.

But there is much, much more:

• People would be expected to keep their promises.
• Last minute changes would be strongly discouraged (if not considered rude and offensive).
• Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
• Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
• The “grunge look” would be out, way out.
• “Prep” (but not pretentious) would be very big.

In the world of Down Syndrome, there would be a great deal more tolerance for:

• Repeating the same phrase or question
• Use of the terms “fun” and “cleaning” in the same sentence
• Closing doors or cabinets that are left ajar (even in someone else’s house)
• Arranging things until they are “Just so.”

Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.

The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.

At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.

Therefore, in the world of Down Syndrome:

• Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
• Here and now would command a great deal more respect than it currently does.
• Stopping to smell the roses would not be just a cliché.
• Work would be revered, no matter what kind, from doing dishes to rocket science.

We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.

Therefore, if people with Down syndrome ran the world:

• Speed would be far less important than doing the job right.
• Work would be everyone’s right, not a privilege.

However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.

All instruction would include pictures to aid visual learners.

Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).

If people with Down syndrome ran the world:

• School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
• Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

• Weather would be the only essential news item
• News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”...

...and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?

We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.

We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.

Therefore if people with DS ran the world:

• Anger would only be allowed in special sound proof rooms.
• Trained negotiators would be available to everyone to help deal with any conflicts.
• The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

• Art and music appreciation would be BIG.
• People would have time to work on paintings and other art projects.
• Acting and theatrical arts would be encouraged for all.

Dancing

• You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”
• The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
• People would be encouraged to get married several times to have more weddings for more music and dancing.
• Richard Simmons and John Travolta would be national heroes.

Music

• Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
• Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
• John Travolta would be the biggest star.

Television

• Classic TV hits would be very BIG and take up at least half the TV schedules.
• “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
• Wrestling would be very Big.
• “Life Goes On” would also be very Big and replayed regularly.

Movies

• There would be fewer movies, but they would be replayed over and over.
• Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

• People would not hurt the feelings of others and they would also not lie or keep secrets.
• Therefore there probably would be no secret service agents, spies, or terrorists.

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.