Recently, Woodbine House provided our readers the opportunity to pose questions to Dennis McGuire and Brian Chicoine, authors of MENTAL WELLNESS  IN ADULTS WITH DOWN SYNDROME: A Guide to Emotional and Behavioral Strengths and Challenges, and founding directors of and clinicians at the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago. Those Q&A exchanges appear here. If you would like to find out more about this book, please click here. Thanks to our readers for their interest in this groundbreaking book and to the authors for taking the time to respond thoroughly to each question.

When a change to a routine work task or activity is necessary, what is the  best way to introduce those changes?  

It is best to prepare people ahead of time for a change. Attempts to spring a change on people will often result in resistance and refusals. In most cases this is not because people are being rebellious but rather because people have a biological-like need to continue a task for a period of time before moving to a second task. As we explain in the book this is due to the fact that most people with DS have strong obsessive-compulsive tendencies. We call these tendencies “grooves,” because people tend to follow fairly set patterns and routines in their lives. These grooves appear to be a part of people’s make up and they are generally beneficial but they can appear to be a little too set or rigid particularly if caregivers are not patient when introducing a change.
          A second issue to consider carefully is when to discuss the change.  Timing the discussion is important for any change but it may be even more important if the change involves something that is anxiety provoking , such as a doctor appointment, or if on the other hand, the change is something that is very positive, such as an outing that is desired. In either event the change may create some intense feelings and expectations in the person with DS. If given too much time people may obsess and ruminate about the change. At the very least this may lead to repeated questions to caregivers (“are we going to____ ”) People will often repeat this over and over even though they know the answer. If the feelings about the change are particularly high (either positive or negative) this may also lead to problems sleeping or focusing on essential daily tasks.
          On the other hand, discussing the change too close to the event may not allow enough time to prepare. This will often lead to resistance or a refusal to cooperate, as discussed previously.
          Aside from preparing people for a change, the use of visual cues may also be very beneficial. As we explain in the book, and in question two, people with DS have auditory deficits, which make it difficult to follow and learn from verbal instruction, but they tend to have very good ability to learn from visual cues. For example, a new task on a job can be learned by either looking at pictures, which detail the steps of the new task, or even by watching someone perform the job tasks. This may be particularly effective when the tasks are broken down into steps that can be more easily absorbed. A simple change in a routine may also be demonstrated visually by showing pictures which represent the change. For example this may include dancers if the event involves a dance or a person engaged in a sports activity if the change includes a game instead of one’s regular routine.
          Visual cues may also be used very effectively in the form of a calendar or activity schedule. This may also be very helpful if the caregiver is trying to find the right form and time to discuss a change. For example we have heard from a number of families who have a regular time to review the person with DS’s daily and weekly schedule with the use of a calendar. This is a very comforting form for many people with DS because it gives them a sense of order and continuity by allowing them to visually see what their day and week will look like. Because of people with DS’s superb memory they are able to retain the schedule in their memory. As part of the review it may be best to introduce the change in schedule in comparison with the previous week/day. “On this day this is what you would usually do….but here is the change with the previous week/day.” As discussed above, the change is best to show with a picture. For example a picture of a doctor/nurse for a doctor appointment, or a picture of a movie theatre or actors for a movie or play, a picture of a family member if an event occurs at this family member’s house, etc. A picture of the place the person is going may also be very helpful. When there is a review of the person’s schedule this is usually not done too far in the past or the future which then gives the person with DS the right amount of time for acceptance and preparation.

My son (age 12) watches certain DVDs over and over, like you describe in your book. He has memorized tons of dialogue from his favorites, and can repeat whole scenes practically verbatim. But when I’m helping him study for a science or social studies test that requires him to memorize a definition, it seems to be really, really hard for him to memorize even one sentence. Why is that?

We have heard this question time and time again. Why can people with DS remember in great detail the scenes and dialogue from a movie but cannot remember definitions from a science or social studies class? There are several reasons for this. As discussed above in the first question most people with DS have auditory deficits which make it difficult to remember and learn verbal information or instruction. Unfortunately, academic definitions emphasize verbal definitions which are more difficult for people with DS to remember. Why then can people remember in detail the dialogue from a movie?  The reason for this is because memory of the visual information, such as a picture or the scenes from a movie, is an exceptional strength of people with DS. They can recall and visualize the scenes from a movie and they have a form and structure that easily allows them to place and remember the dialogue. In other words even if people have a problem remembering verbal information, the visual images of the movie are paired with the dialogue to give it meaning and staying power for them.
          Following from this, then what could help people with DS remember verbal definitions is to pair them with visual images. This may include visual images in the form of pictures, a movie, or even some type of role play or enactment which people can see.  For example, in science the concept of photosynthesis may be shown with representations of the sun, of rays of the sun going to plants, of the plants growing and turning green, etc.  A social studies definition of an event , such as the signing of the Bill of Rights of the Constitution, may be better understood and remembered if there is a role play showing this event. Definitions of different cultures and geography of a country could also be demonstrated with pictures or with role plays such as to show costumes and customs of the different nations, etc.
          Of importance, teachers should also try to engage all of the person’s senses in the learning process. For example, science has to be “hands on” for people to better learn definitions and principles. This may include seeing, touching, or smelling rocks, plants, etc., as important ways to learn. Similarly, in social studies people with DS do not need to just watch a role play, they need to participate in it. To learn about governments, people could participate in role play as the mayor of a city, or be the boss or worker in a business.
          There are also a number of excellent programs available which may help families and teachers to pair verbal with visual representations. For example, families can use Boardmaker® or Writing with Symbols which pairs words with a picture or visual representation.
          Before moving on to the next question we do need to caution people that there are some limits to what people can comprehend, even if they are able to memorize a definition. This is due to the fact that many people with DS have difficulty understanding abstract concepts. For example, it may be difficult to understand the principles behind a science experiment even if they can observe the experiment. Likewise it may be difficult to understand the complex reasons why people do what they do when studying social studies even when they know about the customs and geography of a land. Along these same lines people may memorize a movie but it is not always apparent that they truly understand what the movie is about. Despite this, visual images are still the most advantageous way to teach people with Down syndrome.

My 15-year-old daughter is obsessed with Sharpies®. I bought her some for school, but she comes home with Sharpies in colors that I know I didn’t buy her. She’ll say that So-and-So “gave” her a Sharpie, but she could be stealing them, for all I know. Any time anyone in our family has a Sharpie, she finds a way to get it from them. She has tons of them hidden in her bedroom. She occasionally writes with them, but mostly she seems to want to accumulate them. Is this just a harmless infatuation, or should I try to nip it in the bud… if so, how can I do that? 

There are several issues in this question about hoarding Sharpies (which are colored permanent markers) that are important to discuss. It appears that the Sharpies are acquired to save and not necessarily to use. Is this normal? Should something be done? If so, what?
          One way to answer this is to discuss the notion of grooves which we discussed at length in the book and in the above questions. People with DS have certain repetitious patterns of behavior or what we call grooves that are usually very beneficial. Grooves allow people to organize and manage their lives and to follow through reliably with self-care and worksite tasks, etc. However, people also have certain repetitious behaviors that are less functional and even nonsensical such as saving large numbers of the same thing (including Sharpies).
          When we talk to a roomful of families we hear about the beneficial patterns of grooves but also we hear about the less functional patterns of behavior that are also quite common. Many families report family members with Down syndrome having at least one of these types of illogical behaviors. These range from harmless behaviors to behaviors that are irritating and at times maddening to family members. Why do they occur? As we explain in the book there is no real logical explanation. There seems to be some association to chemical processes in the brain but this is beyond the scope of this question. We also need to be honest here about how widespread these types of behaviors are. In fact most of us have similar compulsive behaviors but we are often able to hide them better than most people with DS. For example, many of us check our stove 4 times before leaving the house to make certain it is off. Many people have some type of counting that they do especially when bored or anxious. Anytime you need to line things up or do things “just so” you are also a groove-type person.
          People with DS have similar types of behaviors but they are often a little less discreet. Many times these behaviors are not harmful and are tolerated by families but sometimes the behavior becomes a problem that may interfere in the person’s life or the life of others. For example, many people “take it on the road” which means they keep all types of items (and I mean everything) in bags or backpacks that are taken with them. Sometimes the bags become so overloaded that something needs to be done. Many families have managed the problem by giving people a choice. “You can take this or this but not both.”   Hoarding items is also very common behavior for people with DS, and not surprisingly, for the rest of the world as well. This can get out of hand or it may be harmless. We do see that sometimes this type of driven hoarding increases when there are stressors in people’s lives. It may help to try to locate and reduce whatever stressors are affecting people, whenever possible. For more ideas look at the book under grooves and under the chapter about obsessive-compulsive disorders.
          The second issue discussed in the question is the notion of taking or stealing items. As discussed in the book, people with DS have an understanding of personal ownership but they seem to have less of an understanding of property that belongs to others. They also seem to have difficulty truly understanding the notion of stealing from others. We actually have renamed stealing as “creative borrowing” to help families understand how this may be viewed by the person with DS. Combine this lack of understanding of others’ property with the illogical need to hoard items and you are bound to have some problems. People have to acquire, save and hoard items but there is less of an understanding of what this may mean to the person who may lose the item. Families and professionals who are able to solve this problem often find a way to allow the person to save and hoard while not impinging on others. Some people work with the schools and workplace to help regulate what items leave the school or workplace. Many parents and caregivers also set up effective reward systems. For example, the person with DS can earn the right to pick out a Sharpie or some other desired item as long as they don’t acquire the desired items from other sources. This then makes it more acceptable.
          Fortunately we have found that many people do learn to respect others’ property over time. Although people may continue to have some difficulty understanding ownership by others, many have as a strength a sensitivity to others and they may not want to see others experience hurt when they lose something of importance to them.

My daughter has a terrible problem with boils, mostly in “sensitive” areas of the body that she doesn’t want me to look at. This seemed to start about the time she entered puberty. A dermatologist diagnosed “folliculitis” and prescribed an antibiotic that temporarily cleared up the problem. The boils keep returning, though, and the topical medication the dermatologist prescribed (clindamycin?) doesn’t seem to help. Is this a Down syndrome problem? An adolescent-type problem that she might grow out of? Any suggestions? 

Recurrent boils are a common problem for many of our patients. The axilla (armpits), groin area, the buttocks, and the thighs are common sites where this problem occurs. For our patients with recurrent boils we recommend the following:

One of my kids has ADHD and I’ve been reading about the executive function problems that that causes. Some of these things—like lack of awareness of time, difficulty planning ahead, prioritizing, etc.—seem to describe my son with DS too. Do you think Down syndrome causes executive function problems?

I would add to this question: How does this compare to people with ADHD?
          Many people with ADHD have deficits in the frontal lobe and other parts of their brains which affect “executive functioning.” Because of this, people with ADHD tend to be impulsive, distractible, and have attention problems. This is similar to having an organization with no one in charge. Chaos ensues. People with ADHD are disorganized, have trouble keeping and maintaining appointments, and they go off in different tangents without focusing their efforts. Ironically they do have some rigidity in their thinking. They can get stuck on one particular thought or behavior which is of great interest to them. For example, many parents complain that they cannot get their children with ADHD to adapt to a change or a transition if they are engaged in something that is of interest or enjoyable to them, such as a videogames.
          However, in the absence of certain skills, these individuals may also have strengths in terms of creativity (such as in music and art), and many have good intuitive skills for reading and responding to people. (These are strengths which many people with DS also share). Interestingly many people with ADHD also thrive on such highly stimulating and stressful situations as air traffic control where they have to deal with multiple stimuli at once. Additionally many people with ADHD tend to be visual learners, which allows them to compensate for other deficits in learning. They are able to use calendars and schedules to structure and organize their lives.
          By comparison, people with DS also have deficits associated with their frontal lobe and other parts of the brain but they are not known for being impulsive and distractible. If anything, they tend to be the opposite. They are highly routinized, organized, and set in their patterns of behavior and thinking. Again, think of grooves. What is interesting is that this more routinized style of thinking creates problems that are similar to people with ADHD with prioritizing and planning, but for different reasons. The primary problem is a dependence on concrete forms of thought and a deficit in abstract thinking. A reliance on concrete thoughts works splendidly when people need to follow set patterns of behavior to complete self-care and worksite tasks but it is not an optimal way to deal with a problem or situation requiring flexibility. People may get stuck in certain patterns of doing and thinking and they have difficulty adapting. In other words, people may tend to do the same thing over and over, even when it no longer works. Attempts to plan for a problem may be difficult because this requires some ability to imagine other ways of doing things, which is also difficult.
          Interestingly, despite the differences between DS and ADHD, both groups may benefit from some of the same strategies because they both tend to be visual learners. For people with ADHD the use of calendars and planning schedules create structures that help people survive in the word. These schedules help to rein in and focus people with ADHD. For people with DS the use of a calendar provides a very clear visual map to see and then plan for and adapt to an impending change (see question 1 above for more on this). They can then see the different events in some order and in relation to the other events which can allow them to better plan and predict. Now again there are some limits to what the person with DS can do, such as to prioritize different tasks, because of the limits of concrete thinking. Nevertheless, prioritizing is far more possible if caregivers use the person’s strength with visual cues to look at calendar and explain the order of things. People may have a greater chance of understanding why things need to go the way they do, or at least accepting that they need to go a certain way if they can see the patterns shown on the calendar.
          Time is also a problem for people with DS but for them it is has to do with limits of concrete thinking. Time is an abstract concept which is difficult to comprehend. People with DS will often use present tense for something that may have occurred 20 years ago. The notion of time periods such as 2, 10 or 20 years in the past or future or for that matter, 15 minutes or 30 minutes in the past or future just does not compute easily.  Fortunately, people with DS can understand precise time. For example, we have had a number of people who initially have had problem in work settings with taking a scheduled 15-minute break. They do better, however, if they are told, “You can go now at 10:00 am, and you have to be back by 10:15. In order to do this you need to start back at 10:11.”  People with DS tend to be very precise about things like this (much to the boss’s pleasure) and this works just fine.
          We do see people with DS who also have ADHD and we have discussed this in the book. These people have issues related to both their DS and the ADHD. Please see the book for more on this.

Sometimes, when I ask my daughter a yes/no question, she replies with a generalization that doesn’t really answer my question. For example, “Has the mail come yet?”  She replies, “He comes late.”  After this exchange, I still don’t know whether the mail has been delivered. Why won’t she just provide a “yes” or “no” answer?

We have heard this question quite often. Why does my son or daughter answer with a generalization and have difficulty with making a definite yes or no statement? This is a good question and we are not sure we understand exactly why this occurs. We have some theories. One of the most plausible explanations involves the nonsensical nature of the obsessive-compulsive tendencies or what we call grooves. It is well known that people in the general population and who have DS with these tendencies follow set patterns and routines. What is perhaps less well known is that many people with these tendencies may also have great difficulty with making decisions or making a choice between things. This may include even a simple yes or no about whether the mailman has come or not. This may be a little difficult for people to understand, particularly if they don’t have obsessive compulsive tendencies, but as we explain in the book, grooves and obsessive compulsive tendencies do not always function logically.
          However there may be more to this question than just having difficulty making a decision. We often find that there are a number of possible causes or explanations to people’s behavior. For example, the person with DS may be very cautious and noncommittal because verbal language is a very difficult medium for many people with DS. Speaking is similar to speaking in a foreign language for them. One of the reasons for this is that people with DS rely on concrete rather than abstract forms of thought. This may make it very difficult to understand the more subtle shadings of language. In terms of receptive skills people may know the words that others use but have trouble with the meanings. They may also be very cautious with their own use of words and of committing to a specific answer. They have probably made more definite statements in the past, which have gotten them in trouble, and they often don’t know exactly why. Words then may be a veritable mine field of possible traps and unintended consequences. So if faced with a question, any question, people may take the way of a generalization which allows them to respond but still not to commit.
          It is easy to see how this may occur if the person asking the question is some type of authority figure but we also see this even when the other is a peer or a friend. Language in and of itself, may still have some strong ability to pin people down in ways that they don’t feel comfortable. Let me explain with an interesting story told to me by Jenny Howard, one of our staff at the Center. Jenny has eaten lunch regularly with a good friend with DS for the past 4 years. Every week this young man eats the same sandwich. Every week when Jenny picks him up, Jenny asks him the same question, “What are you going to eat today?”  For four years, despite having the same meal, he gives the same general answer, “I am thinking about it.”  Even if Jenny presses him a little he will not commit. It appears then that there may be something about committing to an answer that people simply do not want to make even when the question is a relatively simple one and there is no apparent social pressure. So what we have here is a failure to communicate. However, it appears there is much more to this than just being vague or even being resistant to an authority figure. A general answer may be that the best choice is not to commit to a definite answer, given both the reliance on grooves and the complexities and hidden dangers of the use of language for many people with DS.

My daughter talks a lot in her sleep. Some of it is nonsense, some of it seems to be about food, and some of it seems to be about everyday events, like arguing with her brother. Should I be concerned?

Regarding sleep talk, as long as her sleep is not disturbed, such as by waking herself up, then I would not be concerned.

My son sometimes walks up on his toes and makes this goofy face with his hands kind of raised at shoulder level. It mostly seems to happen when he is not paying attention to what is going on around him and is whispering to himself. He is 14 now and everyone always told us he would grow out of this strange walking pattern, but he hasn’t. Any suggestions to get him to stop? It looks really weird.

Whenever we see an unusual behavioral pattern, we first look for underlying physical issues. For example, for a person that is striking his head, we would do a good physical exam of his head and might get a CT scan of his brain, perhaps a neck x-ray, etc. The first consideration is to make sure there is not an underlying physical problem that is causing the unusual gait. The second question to address is, what is the motivation behind the effort to eliminate the behavior?  Is it a concern for the person with Down syndrome?  Does it make the person “stick out” in public?  Is it only a concern for the person who is making the observation? 
          If the decision is made to try to eliminate the behavior, care must be taken not to injure the person’s self-esteem. Often the concern about the behavior is how the person is perceived in public. In those situations, we recommend discussing this with the person with DS. He can then be encouraged to only do the behavior in private. Some families develop a “secret sign” that the family will flash to the person with DS to remind them if they begin to do it in public. This helps the person stop the behavior while minimizing attention to it and reducing the chance that he will be embarrassed or feel bad about himself.
          Peers are sometimes the motivation to discontinue behaviors. However, this often comes in the form of teasing and can cause hurt.

Do you recommend that adults with DS take vitamin E supplements (or anything else) to try to slow down or prevent Alzheimer’s disease?

There is a study in the general population (not people with DS) that showed a little benefit to taking Vitamin E in regards to slowing down the development of Alzheimer Disease. There has also been some concern about taking high doses of Vitamin E based on other studies looking at a variety of health issues. There is presently an ongoing study of Vitamin E in people with DS. Therefore, there really isn’t a clear answer at this time as to the benefit of Vitamin E in people with DS with regards to preventing or slowing the onset of Alzheimer Disease. In addition, more study is necessary to understand the benefit or complications of Vitamin E therapy in people with DS.

Often, when I ask a work-related question of a co-worker with Down syndrome, he automatically becomes defensive. How can I avoid this?

It is somewhat difficult to answer this question without a little more information. I would guess from the question that the person with DS is not being supervised by the person asking the question. Given the available information, there may be a number of possible explanations for the person’s defensiveness. It may be due to some concern by the person with DS that the other is trying to boss them around. I have heard complaints by people with DS that fellow employees treat them like they are incompetent or need to be taught what to do when in fact they know their job. Of course the person with DS may also be a little insecure and react to others’ questions as if they are questioning their competence. If, too, the person has had previous experience with someone else who was bossing them they may have difficulty with not generalizing to other employees. This is due in part to the fact that people with DS have superb visual memory (as explained at some length in the book). When talking to another employee they may have difficulty distinguishing between different employees with different intents and attitudes about bossing them.
          Additionally, as explained in Question 6, verbal language is a tricky medium for people with DS and they may be wary of answering any questions. This wariness may be construed as a general defensiveness. The question then is how to avoid this. We have learned to approach people with DS in the following way:

• Verbal language is a difficult medium for people with DS, talk slowly and clearly and give people ample time to think and answer. Defensiveness may occur if the question is too fast or difficult to understand.

• It may be helpful to first ask permission to ask a question (“Can I ask you a question?”). This gives people some sense of control and it shows respect on your part.

• Be careful with your tone and attitude. People with DS are extremely perceptive and they are good at reading people. If they sense in your voice that you are talking down to them they may react to this. If, too, you are talking in the same voice you would talk to a child, this too may not be acceptable. This is particularly the case in a work environment where they are asked to perform as adults. In these situations they want to be treated like other adults.

• Try to establish an ongoing rapport before asking work questions. During break time or when they are not engaged in a work task talking to them about something that is of interest to them is very helpful. For example, many people enjoy movies and music. On the other hand talking about more personal issues, such as about their family, may not be appropriate. This is because people may be a little too honest and discuss things that are more private.

• In building rapport around work related issues, try to give some compliments about their work, but be genuine. People are very good at sensing a lack of sincerity and this will undermine your credibility.   

• Finally, if after trying the above suggestions you still sense defensiveness, try to ask if you did something wrong or offended them. In many cases people will be able to tell you what they think, especially if they already have a feeling of trust with you. However, give people plenty of time to answer. You may even suggest to them to let you know later. This will often allow them time to formulate an appropriate answer. Chances are very good that they will not forget your question and they will come back to you to discuss the issue when they have thought it through.

How should I deal with my daughter’s meltdowns?  Recently, the bus was late to her stop and it basically ruined her day. She couldn’t stop talking about it. Is it better to express sympathy, or is it better to try to reason with her that a late bus is a only a nuisance and encourage her to be more flexible?   

For this problem the issues which may be helpful to discuss include grooves and memory. First regarding grooves, so much of what makes people with DS successful involve grooves. People are generally neat, organized, careful with their grooming and appearance, and able to follow through reliably with routine self care and school/work tasks. Unfortunately they may also become a little too set and rigid in their schedule and routine. Things like late busses can be very upsetting.
          Additionally people with DS also have exceptional visual memory. This works in so many positive ways to help people remember important people and events in their lives, to help people orient themselves to their surroundings, etc. Unfortunately people may also have certain visual images that are unproductive, such as a late bus
          When you combine then the image of the late bus with groove-like tendencies, the result is getting stuck on a replay over and over of the late bus. This may continue for some time and it has the potential to interfere in people’s normal activities (and drive caregivers more than just a little crazy).
          Unfortunately, changes and disruptions are an inevitable part of life in an imperfect world. What to do? First expressing sympathy is fine, but it is not really helpful and reasoning with people is not going to be effective. Neither sympathy nor reasoning, even from a parent, is strong enough to counteract a strong negative image and a strong groove.
          What works?  The best strategy is to engage and distract the person from the negative image. The distraction should be enough to allow them focus back on their normal routine, which should then carry them along and away from the negative image (for the daughter to go about her normal business without thinking of the late bus). In order to do this, parents and caregivers need to be creative and to use their expert knowledge of the person to help them. As the saying goes “fight fire with fire.” Therefore, one of the best options is to have a positive image to take the place of the negative one. This is easier said than done because negative images have considerable power.
          There are, however, several strategies that may help to promote positive images even when there are strong negative images.

• First, an effective way to a counter a negative image is to have the person experience some positive image in the here and now. This has power because it is immediate and it also allows them to use other senses, such as smell, touch, and hearing as well as vision in the effort.

• Secondly, the positive image should be something that is of interest to the person with DS. This is where the parent’s or caregiver’s knowledge of the person really pays off. For example, some people may look at a music video or even a picture of a favorite music artist or group. Additionally a segment of video tape or picture of the person themselves engaged in a positive experience (such as a wedding, a favorite family gathering etc) is also very powerful.

• Some people may also be diverted from a negative image by a hobby like macramé or latch hooking which engages their hands as well as their minds.

• It may also be possible to arrange the environment to reduce the likelihood of a negative image. For example, the chance that a bus is going to be late is fairly high given traffic patterns, the fact that there are other people getting on first, etc. One way to have people adapt is to change how people experience the time for the bus to arrive. For example, Nancy Geary who is staff at the Center has a 12-year-old son. Her son would get very upset when the bus did not come at the regular time, which he had marked at the end of his morning show. Nancy was able to convince him to do an activity that he loved in place of the TV show, to throw a ball or some other game he enjoyed. This changed the time for him because he has been so engaged in the game he was not aware when it would show up later than normal.

In order to reduce an overreaction to situations like a late bus, parents should build in practice strategies for developing flexibility. For example, Nancy Geary will try going a different route when driving with her son to frequently visited places, such as the grocery or video store. Her son will immediately notice and will protest and may even become a little upset but the more she does this the more he gets use to these types of changes. Other parents and caregivers have other types of changes which are tailored to their family members needs. As a result, when a more significant change occurs these individuals may be far more prepared for it.