Global Webinar Series – Fall 2017 Recap

 

 Fall 2017

Promoting Skills to Survive & Thrive
in the Teen & Adult Years

What You Need to Know

 


 

Overview & Speakers:

 

 Teens and adults can survive and thrive given the right support and encouragement. In this webinar we discussed a host of adaptive strategies that take advantage of their on-board strengths to reduce common challenges in the areas of communication, flexibility, and adaptation. In particular, we emphasized how to use visual cues and behavioral “grooves” to support teens and adults transitioning into new environments and life stages.  We also discussed better ways to manage their superb but often under-developed intuition and social sensitivity to enhance social relations. Finally, like all of us, people with Down syndrome need a sense of control in their lives to feel empowered and capable. We informed about how you can use person centered planning, among other tools, to promote productivity and autonomy, and to minimize conflicts of control and control at home.   

 

headshots_0001_dennis-mcguire
Dennis McGuire, LCSW, Ph.D.
is Global’s Senior Consultant specializing in adult initiatives. He is a Down syndrome behavioral expert with more than 30 years of experience in the fields of mental health and developmental disabilities. As the former Director of Psychosocial Services for the Adult Down Syndrome Center in Chicago – the largest, most prestigious clinic for adults with Down syndrome in the United States – he helped establish the center, which serves over 4,000 unique adult patients with Down syndrome each year. In his role at Global Dr. McGuire facilitates the best possible programs and services for teens and adults with Down syndrome. This includes the development of a world class multidisciplinary clinic serving this population and co-facilitating the Adult Medical Care Guidelines initiative.

 

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Bryn Gelaro, LSW
, is a social worker with a passion for behavioral health of adults with Down syndrome. Her work includes furthering Global’s adult care initiatives, serving as an executive committee member and co-author of the Adult Medical Health Care Guideline update and supporting Global’s efforts to open a World Class Medical Clinic for adults with Down syndrome.

 

 

 




Overview:


Powerpoint Presentation:
Click to Download 



 

 Questions & Answers

Patti in Portage, MI:

1. What are the top 5 skills needed to retain employment?

For an adult with Down syndrome to retain employment you should ensure:

1) They are in an environment that is set up for them to be successful (this includes the staff being training about Down syndrome, there are modifications made when necessary, they incorporate visual cues and schedules).

2) They are doing something they want to be doing.

3) There is open communication between family/provider and the work site.

4) They understand the expectations of the work environment.

5) They are given appropriate amount of time to practice and develop new skills.

Laura in San Ramon, CA:

1. My son is only 12 years old now and very social as he is growing into puberty. He is very open to tell people publicly, for instance, that he is growing hair “down there.” How can we get through to him about what’s private and what’s ok in public?

We have heard this concern before. Changing bodies and becoming a teenager are big milestones for young adults, and when our teens feel proud of this exciting accomplishment, they can’t wait to tell everyone about how they are becoming ADULTS! But we want to make sure that these exciting changes are coupled with education around navigating their changing bodies and hormones. This can include open conversations about physical changes, budding sexualities, and the dating world. Body boundaries are important, as are teaching young adults about their body parts. We want them to learn what is appropriate and safe without them feeling ashamed. Their bedrooms are their private spaces and you can redirect and remind them of that if they begin discussing private topics in public.

Another example: There are many families who are deeply concerned when they see their teen or adult masturbating, and we always remind families this can be a typical behavior for some people with and without Down syndrome. Teaching them when and where it is appropriate will keep them safe and maintain their privacy. Books, like Terri Cowehoven’s Teaching Children with Down Syndrome about Their Bodies, can help parents and teens with Down syndrome learn and encourage them to ask questions.

Hina from Burnaby, British Colombia:

1. Can you recommend any strategies or programs that we can use to teach safety skills?

People with Down syndrome are visual learners and learn best by seeing and role-playing safety skills. Often there can be local agencies serving people with intellectual disabilities in your community which have group social skills training programs where they train people safety skills. They will also use programs such as Circles which are visual and concrete to best suit people’s learning style. It is important to remember that the skills learned in a group may not easily transfer or generalize to the community because people tend to be concrete in their thinking and behavior. As a result it would be very important for all family members and caregivers to assist people with Down syndrome to assist them in learning “in the moment” while they are engaged in regular activities in the community to allow this leaning to be used in their daily lives and not just the group. If no groups are available then families and caregivers should help the person with Down syndrome to role play social skill and safety skills and then transfer these to their lives in the community.

2. What would you say about family accommodation and its role in maintaining OCD behavior? How can families use the principles of cognitive behavioral therapy: exposure and response prevention (especially around response prevention) to treat OCD or to use these principles to prevent grooves from becoming maladaptive?

People with Down syndrome have a natural tendency for “grooves.” which are set patterns and behaviors, and these can be very constructive in their lives to help them organize and manage their rooms and personal items, to maintain productive work, recreation and home activities and to allow them to present themselves in a neat and dignified fashion when in the community. Grooves can become less productive and even an interference in one’s essential life and activities (and thus an obsession or a compulsion). This will often happen when people are stressed because of some issue or concern. Whenever possible, try to identify and reduce these stressors to reduce the intensity of a compulsion/obsession. Cognitive Behavior Therapy may be of limited use because it assumes that the cause or source of the problem is a rational issue or concern. Additionally exposure to a something that has created a compulsion related to a phobia is not often productive because people tend to replay the original event that created the phobia.

3. What are some pieces of advice around training for personal safety skills, specifically for road safety: Any recommendations for specific training programs or experiences that bring about better self-awareness and safety?

As mentioned above:

-Group programs such as Circles that take advantage of people’s responses to visual cues can be very effective as long as the training is then transferred to the community and not just confined to the group sessions.

-I am not sure what the question is regarding road safety, does that mean for a pedestrian or someone who is able to pass a driving test and is actively driving? In either case the best training is to role play actual trips into the community to learn in the field either driving or walking skills.

-Additionally, checklists that take advantage of one’s response to visual cues can also be a great aid in learning to manage life in the community. Professionals who work with people with autism have been using visual cues and checklists very effectively for some time and the literature on this is often readily available online or from agencies that serve this population. We learned some time ago that the use of visual cues can be just as beneficial for people with Down syndrome as for individuals in the autism community.

Angela in San Carlos, CA:

1. My son was traumatized by a power outage in school and now he doesn’t want to go back. How do I help him get over this trauma?

One of the most important discoveries from our clinic work with thousands of people with Down syndrome is that they have a phenomenal capacity to remember what they see in vivid detail, which we likened to photographic memory. People with DS are able to pull back a memory and relive it as if it is happening all over again, including the original feelings and emotions. As you can imagine this can be very good if the memory is good or very bad if the memory is bad, such as a traumatizing experience like a power outage. Unfortunately too, the visual cues of the school are probably triggers that can set off the bad memory. These are like phobias and are difficult to unlearn. The best way to prevent a replay of the memory is to manage the trigger but in this case this means to not go to school, which is not acceptable. Consider beginning to create another visual response to the trigger of the school by having him go to the school when not in session in order to do things that are fun and entertaining. More importantly, he can practice through role play what to do if a power outage happens again. For example he can keep a flashlight and practice what to do over and over to feel safe in his environment.

 

Anne in California:

1. My son will often pace and act agitated in the afternoon. He may be calm after his day program for a bit but then wants to watch TV. After a bit, he may start pacing for 5-10 minutes, then he’ll be calm. He can also pace when in a larger group; for instance after church service ends, he is often pacing by himself on the side of the auditorium. I have just let him pace in these instances. Is this just self-regulating behavior or should I try to help him not do this type of thing?

This sounds like an attempt to self-regulate and self-sooth and as long as it does not interfere in his or others activities, it should be just fine.

 

Crystal in Rossville, GA:

1. How to support adult sibling to learn appropriate work social behaviors?

It is best to use visual cues which are a strength, this may include role play of appropriate social behavior with the boss, customers (in certain work environments such as stores), with staff, etc. Additionally checklists and a structured list of activities can bring a sense of confidence and consistency which people need and want. It is also very important to remember that the training of these skills can begin outside the work (or any) environment, but then it needs to be brought back and conducted in the work place. This is due to the fact that people tend to be concrete in their thinking and behavior and may not easily transfer skills learning in one environment to another.

2. How to provide training for boundaries, consent, and sex education as adult sibling navigates the dating world?

Terri Couwenhoven does workshops throughout the country, and she has written numerous books that directly address these issues. We would encourage you to refer to these materials, which are published by Woodbine House. Terri takes advantage of visual cues to assist people with Down syndrome around these issues, and she has found many strategies that work for people with Down syndrome.

3. I agree about choices, but how would you handle the situation if someone doesn’t know what they want? For example, if I ask my brother, “What do you want to do today?” I usually get, “I don’t know” or “Nothing”. So I give choices to give ideas….

What you are describing is what we call “taking the fifth” and this usually means people are not comfortable with verbal exchanges. They simple don’t feel confident or safe. What we would recommend is to give him some visual images or pictures of some possible activities and then he will have something that he is far more comfortable with to decide.

4. What would you recommend if they enjoy surfing the web and/or playing video games? I thought about setting up a schedule so he has a set time to make sure he’s not spending all of his time doing that. Would that be a good idea?

This is a good idea for ALL of us, but especially for people with Down syndrome who love schedules and routines. There is also extensive literature on the need for ALL teenagers and young adults to have some alone time to re-coop. The key is to determine how much is good and how much is too much. If people tend to withdraw too long then this needs to be managed so they are not alone too long. Many families have rules about balancing social and alone time, for example setting up a rule that attending dinner is not optional, and they encourage social activities several times a week, such as spec rec programs etc.

5. My 28-year-old brother does has power struggles not with me (his sister) but my wife. Ideas? She asks him and expects the same thing as I do. We all three work together as a team, all having input on our schedule, menu, activities, rules of behavior (his bedroom is his private space and we knock before we enter).

It all sounds good and very respectful to your brother. I would suggest that the schedule be the guide so that your wife can simply point to the schedule, if necessary, but to try to let the list guide and not her. It is interesting to note that as an analogous situation, a step-parent in a remarriage situation is quite often not able to parent a step-child. Some therapists can help to organize a step-family situation to accommodate to this.  

 

Tanya in Montgomery, MA:

1. How do you handle imaginary friends and untrue story telling in an early 20-year-old? It has begun to start issues because of the content of the made up stories and the issues with the made up friends and the real relationships this young woman has.

As we have written at length in our books, conversations and interactions with imaginary friends and self-talk generally are not a problem, especially when conducted in a private space, (such as ones bedroom). In fact we found that self-talk can be like a private lab that allows people to learn about and process their lives and the world quite often in productive ways. The problem occurs if the self-talk, dramatization and stories with imaginary friends begin to be brought into one’s regular life. It may be helpful to consider this as a type of play not unlike the play that children conduct with themselves and with others, most often as an attempt to make sense out of the world and particularly the social world. It is interesting to note that many children, (and adults) in the general population have a similar tendency to get stuck in their own thoughts and internal stories, which then keep them from being present and attuned to others in their lives and social dealings. The solution for this is to actively work on bringing their attention to the task and situation at hand rather than to their own thoughts and stories. For people with Down syndrome, it may be helpful to note that visual checklists and cues can help to focus attention on the here and now.

2. Now regarding this young woman discussed in this question:

It is difficult to know from the question how much this young woman’s stories affect her real relationships, but I would encourage you to try to see if this young woman can separate her home self-talk from what she does in the community and that she try to confine this to her bedroom. Additionally it may be helpful to have her involved in theatre to bring her creative skills to bear in a more productive way which is both more acceptable and an productive learning environment.

 

Anne in Pleasanton, CA:

1. What are the best ways to handle regression in young adults with DS?

Regression often involves a significant loss of social, expressive and adaptive skills. Generally the best response to this type of skill loss depends on the cause, if that is possible to ascertain. In our large Chicago sample, we found a number of individuals who were traumatized, others had little opportunity to act independently, and as a result responded by shutting down, some others showed symptoms described as catatonia, and still others had no known cause (although there is some belief among medical practitioners that for at least some of these individuals this may be due to an unknown physical condition). For those traumatized, the remediation of the situations or triggers for the trauma were helpful. For those with a loss of independence, allowing them to have some independence and autonomy was helpful. For the others, there were various psychiatric and behavioral treatments that have helped some of these individuals but not all of them. The physical causes have as yet not been determined.

2. I believe my son may have catatonia, but no professionals here seem to be taking me seriously. What should I do?

You may consider seeing a medical expert who has experience working with adults with Down syndrome. You can find a list of Down syndrome clinics here on Global’s Website http://www.globaldownsyndrome.org/research-medical-care/medical-care-providers/. What our work has shown us is that parents and care providers know their children best.

3. Is catatonia a progressive disease? Will he continue to regress more and more?

Like many physical health or mental health conditions, the trajectory of a disease or condition is difficult to predict and can vary widely from person to person. Many factors, both internal and external, can influence this and we do not always understand why this is the case. No two people with Down syndrome are the same.

 

Sandy in Fort Collins, CO:

1. By the late teens, our 22-year-old son’s older siblings were able to organize their own social activities and meet friends at theirs. Our son who has Down syndrome is very social and desires regular social gatherings with a friend or small group of friends, but we’ve found it much more difficult to organize these without parents being the driving force (and the drivers). Any ideas?

It may be that your son has never had the experience or practice setting up social dates or events. On a chalk board, dry erase board, or a laminated paper set up the following outline with blanks your son or you can complete (using written words, gestures, spoken word or images) with verbal prompts:

On (this date) at (time) I would like to (activity) with (friend name.)

You can add to it including a line about how they will get there and maybe how much it will cost if the event is something like a movie or bowling. You may still need to prompt him, but encourage him to fill in those blanks himself. He could use this outline to communicate his social desires to you, as a script to tell a friend over the phone, or as an outline for a written note to give someone.  

 

Rosemarie in Aurora, CO:

1. If we left a home for her how do we find help for her managing it and people who may live with her?

When it comes to leaving assets to adult children with Down syndrome or including adults or children with Down syndrome in a will, it can be crucial to consult with a special needs trust advisor to make sure everything is set up in a way that will not negatively impact their ability to access SSI/Medicaid programs, if those are important for your family member. Regarding setting up a group home agency in a personal home, states differ on rules and regulations. In Colorado for example, there are ways to set it up so that you can apply and become certified as a provider. Our advice is contact your local chapter of the Arc and ask if there is an advocate on staff well versed in housing matters. In Colorado, you can also contact you Community Centered Board for more information.

2. Who do we look to if we have no siblings or family who will look after her when we are unable to?

This is a question many families are asking themselves, especially as the parents age. The answer will depend on what you want for your adult, what your adult wants for his/herself, and what planning you have put in place prior to you no longer being able to care for your adult child. Again, a special needs financial planner can help get finances in order, but there are other advocates who can be well versed in life planning. It is never too early to make sure someone knows and has in writing what you and your adult want for them when you are no longer able to be an active support.

 

Shalini in Menlo Park, CA: 

1. How do you inculcate time management skills?

This will depend on the adult’s ability to navigate and read time. Some adults with Down syndrome really excel with reading a watch, others do not. Regardless, they can learn to manage time. . Time is abstract– the more you incorporate concrete and/or visual cues, the more likely they will be able to successfully manage their time. If you need to, you can mark the face of a wall clock or set multiple timers/alarms on their cell phone, or even use songs to help them keep pace. For example, we have had adults who lose track of time in the shower and accidentally take 1 hour showers learn to use 10 minute long CD playlists to help them. When the music stops, they know to get out of the shower.

2. How do you prevent “wandering off” or going away without informing anyone?

This is a safety training issue that takes practice and repetition. You will want to get the person into the habit of telling you where they are going every time they open the front door. You may need to use a visual reminder physically taped on the door, for example, something that says STOP – Have you told mom/dad/brother/whoever where you are going? As a last result, if there is a serious safety concern like a nearby road, some families have tried door/window alarms.

3. How do we manage the “choosing” to respond to some people and not to others?

It may be useful to provide visual cues when offering choices, which can be easier for people with Down syndrome to respond to.

 

Cecile in Woodbury, MN:

1. Our son in 48, nonverbal and recently shown anger twice. How would we proceed in figuring out what brought that on?

Behavior is a form of communication. If your son demonstrated anger, then that was his way of telling you something was wrong. When you are trying to figure out the cause of a behavior, pay special attention to what was happening, where were you, what time occurred, and who was involved in the environment directly prior to the behavior occurring. Also, consider what happened after the behavior happened. This is considered an ABC approach to behavior, the Antecedent, the Behavior and the Consequence. This could provide clues about what was going on for them and how to reduce anger or frustration this in the future. Remember, verbal communication is not always a strength for many adults with Down syndrome that are or are not verbal. Try to encourage communication in other forms, like acting it out, or drawing, or showing pictures.

 

Wendy in Cape Coral, FL:

1. My brother is in his 50’s and had a very bad case of chickenpox as a child. Should he get the shingles’ vaccine now rather than wait for 60’s?

This is a great question, but one that would be better suited for a medical professional. You can look up your closet Down syndrome medical clinic here on our website: http://www.globaldownsyndrome.org/research-medical-care/medical-care-providers/

2. Are there exercise DVDs that are easy for adults with DS to follow independently?

This will totally depend on the adult’s fitness levels and what they enjoy. Some adults respond best when they tape and watch videos of themselves performing a fitness routine.

3. When determining safe exercise amount and level should I add 15 years to his age? He has arthritis and I don’t wasn’t to compromise his joints.

Consider consulting a physical therapist or medical professional in sports medicine. Sarah Mann, PT expert for teens and adults with Down syndrome, will be giving next quarter’s Global Webinar and will have some excellent information for you.

 

Kathleen in Denver, CO:

1. My adult son with DS lives independently, with a roommate, and has developed a groove in which he doesn’t go to sleep until 1:00 am. He doesn’t use his CPAP machine and gets very little sleep. He gets up for work at 6 am four days a week. When he goes to camp or on trip, he sleeps 8-10 hours a night and uses his CPAP. His chronic lack of sleep really shows. Desperately seeking suggestions!

This can be a common problem people have when living independently and the results can have a major impact on one’s health and mental well-being. It would be important to investigate the situation very carefully to see if there are any things that can be done to assist him to better manage a more normal and healthy schedule. This may include the use of visual aids such as a daily schedule to manage his night time routine. On the other hand if all efforts to assist him are not successful then it may be necessary to look at whether he is beyond his own capacity to manage his nightly routine. If not, then he may simple need more help and assistance such as a caregiver to stay with him at night (or at least part of the night) to help him to go to bed. The fact that he is sleeping when on vacation or at camp would seem to indicate that he would be open to this type of assistance.

 

Jill in Canon City, CO:

1. My daughter Kelley keeps a strict routine. How do I get her to join in on new things?

Changing routines can often require gradual, incremental change, preparation, and repetition. These are really key to building in flexibility. If you can put an event or program on a calendar that she can see, then she can prepare for it and expect it. If it is a big change, working up to it slowly may be better than the ‘ripping off the band aid’ Talking through an upcoming change or transition can also be important.

 

Peggy in Henrico, VA:

1. How do I explain to my daughter, age 17 that she cannot drive? Her entire life we’ve been her cheerleaders, telling her she can do anything that anyone else can. Now there’s this one thing that she can’t do. It was one thing when her older brother began driving but her little brother will be driving within a year.

We have heard from many families that this is an issue. The question you need to consider is whether this is truly is a goal for her. Many families have told us that their sons and daughters are simply not interested in driving. Others want to drive and one solution may be allowing them to go to Driver’s Ed. All but a few have passed and those that do pass are actually quite good drivers. What’s interesting is even those who do pass will often lose interest in driving when they discover that it is less fun and more of a chore. Sometimes it’s just best to let the natural course of things occur.

2. Have others tried using Uber with their kids with Down syndrome and how has it worked out?

There are some folks who have chosen to use ride share programs, like Lyft or Uber, and it’s a good fit for them. But we would caution that you always make sure there is a safety training component involved, for example texts when the car arrives and when they arrive at the destination. And always make sure you adult has a reliable back up plan in case their phone dies or they have difficulty or they feel unsafe.

 

Veronica in Albuquerque, NM:

1. Is it typical to see mental health issues in young adults with Down syndrome?

People with Down syndrome experience the full range of mental health concerns similar to people without Down syndrome, but in our experience, they are more likely to go under-diagnosed or over-diagnosed. This mostly has to do with medical/mental health professionals being inexperienced in working with people with Down syndrome.

2. I’m concerned about long term effects of my daughter’s medications to treat depression and psychosis (symptoms)-Haldol and clomipramine.

We are not able to comment on this question due to the fact that we are not medical professionals. It would however be advantageous to have a psychiatrist or a psycho-pharmacologist (specialist on medications) to give a second opinion about the use of these medications. This is due to the fact that the Haldol in particular is an older medication, which is known for creating some significant adverse side effects in users.

 



Previous Webinars:

Spring 2017: Multimodal Approach to Teaching Children with Down syndrome Speech and Language Skills