Education

At the 6th International Conference, "Building Bridges of Hope", held September 17-20, 2009, Brenda Finucane, MS, CGC, and Barbara Haas-Givler, MEd, BCBA, both from Elwyn, presented their respective sessions on educational matters regarding Smith-Magenis Syndrome. They have posted their presentations on the Elwyn web site. You can access these presentations by going to the Elwyn web site at http://www.elwyngenetics.org/conferencesandseminars.html. For more information on available services at Elwyn, download this brochure.


Several characteristics of SMS can qualify children for special education services through their local school district from age 3 through graduation from high school. These include developmental delay, speech/language delay, mental retardation, learning disability, and emotional/behavioral problems. Services before age 3 are provided through early intervention services. Special education services are governed in the United States by the Individuals with Disabilities Education Act (IDEA).

If you're a teacher, the articles below might help you understand your SMS student and develop better educational plans and strategies to meet their needs.

Educational Articles on SMS


Educational Implications & Behavioral Concerns of SMS ...From the Teacher's Perspective

Observations on the Behavioral and Personality Characteristics of Children with Smith-Magenis Syndrome

by Barbara Haas-Givler, MEd
Education Specialist,
Elwyn Training and Research Institute

Reprinted from Spectrum Journal, Volume 1 (2), Summer 1994

The primary focus of special education professionals is to provide a school environment that is designed to meet a student's full range of needs. Special educators are by nature a resourceful group who often rely on each other for assistance in designing appropriate educational and behavioral strategies for dealing with their students. By comparing notes about similar students, we draw on past experience in developing effective behavioral and learning approaches. One teacher often asks another, "Doesn't this boy's behavior remind you of another boy who used to be in the elementary program?" It was through such informal comparisons that several members of the education staff at Elwyn Inc., including both teachers in the classroom and the supervisory staff, recognized a group of children in our programs who shared strikingly similar behavioral features and learning styles. Through the efforts of the Genetics Service at Elwyn beginning in 1990, it was ultimately shown that the Elwyn students did in fact all have the same genetic syndrome, SMS.

The discovery of SMS in these children reinforced our observations about the similarity of their behaviors, but it did not help us with the overall problem of behavior management. A search of the professional literature was made for articles dealing with educational and behavior management approaches for children with SMS. We were not seeking a cookbook approach for dealing with SMS. After all, special education professionals are strong believers in fostering each child's individuality and unique differences! However, we were discouraged to find that there was not even one article that specifically discussed the educational needs of this unique group of children. The lack of written information motivated us to more carefully examine our classroom experiences over the years to gain insight and help us understand some of the strengths, weaknesses, and unique problems posed by students with SMS.

BEHAVIORAL AND LEARNING STYLES OF CHILDREN WITH SMS

The following observations were made by a group of Elwyn professionals led by fellow special educators, Debbie Ward and Patricia Stubbe, and me. Our group cumulatively represents over 100 years of experience in special education. This anecdotal information stems from ongoing discussions, which, although unpublished, can serve as the basis for future research into the educational needs of children and adults with SMS. Three major categories of behavior are described which can positively and/or negatively influence learning.

None of the features listed is specific only to children with SMS, and there are certainly other children with different types of disabilities who share some of these characteristics. As expected in all children, we have also observed age-related differences in the behavior of children with SMS at various stages of childhood. In addition, some children with SMS pose relatively few behavioral difficulties, while others present ongoing and severe problems that greatly affect their classroom experience and that of their fellow students.

SMS ATTRIBUTES WHICH NEGATIVELY AFFECT LEARNING

Children with SMS often present problems with attention-seeking, aggressive, and self-injurious behaviors. These are disruptive in the classroom setting, often requiring individual behavior management programs. Students with SMS tend to be very adult-oriented, demanding an inordinate amount of individualized attention from adults; when this is denied, aggressive and self-injurious outbursts are frequently the result. As one teacher put it, "If I could provide constant, unwavering, one-on-one attention to this child throughout the day, she might never have another tantrum." But what teacher or parent can do that?

POSITIVE ATTRIBUTES OF STUDENTS WITH SMS

When a teacher or parent is working with a child who presents behavioral challenges, it is particularly important to emphasize the child's many positive attributes. Children with SMS are often among the more popular students in the classroom, despite the significant management problems they can present. A teacher can capitalize on these positive features in developing behavior management programs, both for the home and the school.

POSITIVE ATTRIBUTES WHICH CAN BECOME NEGATIVE

Some behavioral characteristics of students with SMS complicate the picture because they can be perceived as either positive or negative, depending on the situation. Teachers are only human, and one may tend to reinforce the affectionate nature of a student, whereas another may feel that these behaviors are not appropriate (i.e. in an older child). The adult-seeking nature of children with SMS may interfere with the learning and teaching process in the classroom, if a child is demanding an excessive amount of teacher attention throughout the day.


CHARACTERISTICS OF STUDENTS WITH SMS

SMS ATTRIBUTES WHICH NEGATIVELY AFFECT LEARNING

  • Attention seeking - demanding an inordinate amount of one-on-one attention
  • Aggression toward others - often in response to other students who want THEIR teacher's attention
  • Tantrums - falling to the ground; refusing to walk; striking out at other children
  • Self-injurious behavior - picking at nails and skin, inserting foreign objects into various body orifices (openings); putting hands under hot water or on hot objects; head banging
  • Poor impulse control - child jumps out of seat; grabs things without asking
  • Negative reaction to changes in routine - child needs a warning that an activity is about to change
  • Attention deficit disorder - with or without hyperactivity
  • Perseveration - repeatedly asking the same question, e.g., "What's your name?"; continuing to demand attention on a topic of interest while the class has moved on to another subject
  • Sleep Disturbance - child may fall asleep in class

POSITIVE ATTRIBUTES OF STUDENTS WITH SMS

  • Engaging and endearing personality - immature speech patterns, "cute" facial features, self-hugging; good eye contact and "impish" smile that animates the face
  • Appreciative of attention, excitable - enjoy interaction with adults; learn and use names of teachers and students; use social expressions "please" and "thank you"; often demonstrate self-hugging or hand-squeezing motions.
  • Responsive to structure and routine - react positively to consistency; follow classroom routine, especially with visual cues.
  • Motivated by a variety of reinforcers - food, stickers, and attention
  • Eager to please - show pleasure in voice, facial expressions, self-hugging.
  • Communicative - verbal, gestural, sign language, picture board
  • Enjoy a variety of activities - music, songs, water play and puzzles
  • Fascination with electronics - toys, calculators, computers, etc.
  • Well-developed sense of humor - generally enjoy joking, teasing; laugh at appropriate times
  • Identifiable causes of tantrums and aggression - often due to changes in routine; parents and teachers can often predict triggers which might cause an outburst; child will often tell what's wrong
  • Tantrums and aggressive behaviors can often be redirected - if the staff/parent can intervene before the child becomes too upset

POSITIVE ATTRIBUTES WHICH CAN BECOME NEGATIVE

  • Adult-oriented - can become negative if student tries to monopolize teacher's attention, time; has little interest in interacting with peers
  • Affectionate - can become negative if aggressive (rib- crushing!) hugging of others; indiscriminate hugging of strangers
  • Remorseful after acting out - can become negative if student prolongs remorsefulness to gain or maintain attention
  • Visual learners - can become negative if student becomes overstimulated by visual stimuli; student has visual impairment

WHAT'S A TEACHER TO DO?

Classroom Strategies That Enhance Learning For Children with Smith-Magenis Syndrome
by Barbara Haas-Givler, M.Ed. and Brenda Finucane, M.S.
Elwyn Training and Research Institute

Reprinted from Spectrum Journal, Volume 2 (1), Winter/Spring 1995

Table of Contents

The Quest for Adult Attention

Children with SMS are very much adult-oriented, with a sometimes-insatiable need for individual attention. This is a key personality feature of children with SMS and one that has important implications both at home and in the classroom. For the child with SMS, positive attention is clearly preferable, but in a pinch, negative attention may serve equally well in his quest for one-on-one adult interaction. He may seek to monopolize a teacher's time during an activity, by verbally interrupting, asking questions, or trying to attract exclusive eye contact with the teacher. Showering the child with positive attention does not seem to satisfy this drive and may even fuel it further. Eventually, a teacher may try to withhold attention so that he can focus on the lesson and pay more time to the rest of the class. This often prompts attempts at getting attention through verbal outbursts, tantrums, aggression toward peers, destruction of property, etc. How then can a teacher deal with this situation, when positive attention often encourages the child to seek more, and refusal to give attention generates negative behaviors that ultimately result in attention anyway? There are no easy answers, but the following insights may be helpful.

A Calm, Consistent Classroom

In our experience, children with SMS are very sensitive to the emotions of others. It is crucial that the teacher try to maintain a non-emotional tone with the child in order to neutralize the child's perceived 'reward' for attention-seeking behaviors. This does not mean that a teacher needs to become cold and robotic in the classroom; in fact, children with SMS are often very responsive to affection, praise, and other positive emotions on the part of the teacher. In moderation, a teacher's positive emotional response can strongly motivate a child to do well, and many children with SMS are exceptionally eager to please. They are also easily excitable, and exaggerated positive expressions on the teacher's part may make the child overly excited. Likewise, positive reinforcement can be overdone, as in the case of a teacher who enthusiastically praises every effort, no matter how small, so that it loses its impact and the child seeks ways to elicit a more dramatic, or at least different, response from the teacher. Teachers should try to ensure that a positive emotional response is well earned and delivered in a calm, loving way.

It is equally important for a classroom teacher to keep negative emotions under control. A teacher who becomes visibly exasperated or angry lets the child know immediately that he/she has found a surefire way to make the teacher lose control. Likewise, a teacher who frequently uses negative verbal prompts, [e.g., "Annie, don't do that", "David, pay attention", "Look at me, Mary"], may unwittingly be satisfying the child's drive for attention. This is not only exhausting for the teacher, but may in the long run, also serve to reinforce the child's attention-seeking behaviors.

We have found that a calm, emotionally neutral classroom atmosphere works best for children with SMS. For example, if a child will not stay in her seat during a lesson and constantly jumps up to verbally interrupt or attract the teacher's eye contact, the teacher might try to continue talking to the class, without reprimanding the SMS child, while physically redirecting her back to her seat. In this way, the class continues on without interruption, and the child with SMS is returned to her seat (over and over again during the class period!) without giving the child the sense that she has won a battle with the teacher. This does not always work of course, since there are times when a child's full-blown tantrum or aggression necessitates intervention by the teacher (see Behavioral Interventions, below). Whenever possible though, negative behavior should be ignored and redirected, without even so much as a verbal reminder. Obviously, it takes a tremendous amount of self-control on the part of the teacher to continue calmly on in the face of such disruptions in the classroom. However, if a calm tone is consistently set early on, the reward may be fewer outbursts over time, since the child with SMS may realize that he cannot get the teacher to become upset.

A Small Class Size

Rather than working together with their classmates, many children with SMS seem to be in competition with them, seeing them as obstacles to gaining teacher attention. We have found that ideally, children with SMS seem to do best when there are no more than five to seven other children in a classroom, with one teacher and one teacher's aide. With a class size above this ratio, the competition for teacher attention becomes greater, and the possibility of behavioral problems increases. Many children with SMS are also inherently distractible and tend to do better in smaller, calmer, and more focused classroom settings.

Reinforcers and Motivators

Parents and teachers frequently remark that children with SMS seem to have an uncanny ability to size up a person's weak points and then to pull a specific behavior out of their bag of tricks just for that individual. Our experience confirms this knack for 'personalized button pushing' : a child with SMS may frequently show a particular behavior in one class, but then use a different behavior which drives another teacher crazy in a different class. This clearly implies that children with SMS have some degree of control over their behaviors, but it is important to recognize that many of the negative behaviors seen in SMS have their origins in internally driven impulses. The manipulation of these behaviors by the child may reflect their degree of motivation in suppressing these involuntary impulses in the presence of one person versus another, or in the face of a specific reinforcer (reward). For example, a child who is working toward getting a sticker at the end of a classroom activity may be highly motivated to keep her outbursts under control during that period. It is not unusual, however, that once the sticker is gotten, the child is no longer motivated to use such energy to keep her impulses under control, and a full blown tantrum is the result.

Teachers need to be very creative to keep the child with SMS motivated enough to want to control his or her behavior. One strategy is to use reinforcers (stickers, individual teacher time, free play) during activities when the child is likely to get out of control. Alternate these activities with ones that the child typically likes and that do not usually require reinforcers. Reward the child with his sticker at the time of transition from one activity to the next. (Transition times are often difficult for kids with SMS and the reinforcer may serve as a distraction). Keep food rewards to a minimum - these may cause a child to view food as a desired goal under all circumstances, thus leading to overeating and food-related tantrums.

Visual reminders

We have noted, and Dr. Elisabeth Dykens at Yale has confirmed, that children with SMS seem to have difficulties in processing information that is given in a sequential or step-wise fashion. For example, they may have difficulty if a teacher requests that a child empty the trash, bring the empty trash can back to the front of the room, and then go wash his hands. The child may not be able to complete all three steps of this task because of difficulties with the way his brain processes sequential information. Counting and other mathematical tasks also involve sequential processing, and these areas may pose particular difficulties for kids with SMS.

One way to work around this problem is to use pictures or charts whenever possible to help the child visualize the different steps involved in a task or a math problem. Children with SMS tend to be visual learners, and they often need to refer to pictures for guidance in learning a new task. They can often learn to refer to the pictures independently, or with only minimal input from the teacher. Groups of pictures can be used to illustrate such things as: multi-step tasks (setting the table); the schedule of classroom activities (circle time, followed by free play, followed by snack, etc.); and counting and other math tasks. They also reinforce the sense of routine in the classroom, so that the child's day is clearly spelled out in pictures. We have observed that children with SMS have a strong need for consistency in their daily routine.

Children with SMS often look for affirmation that they have completed a task correctly, even when they probably know that they have done so. For example, the child who is asked to empty the trash may do so, all the while looking at the teacher for positive reinforcement. He may then stop and question the teacher about the next step, even though he already knows the answer. "What's next?" says the child, looking for affirmation that the task is being done correctly. If the teacher says, "You know what's next. What is it?", often the child will respond correctly and go on to the second step of the task. It appears then, that in addition to real, brain-based sequential processing problems, many young children with SMS require prompting before they will complete a series of even simple tasks. This need for positive approval throughout the day can result in a teacher spending a large amount of time confirming tasks, which the SMS child may be able to do independently. Posting pictures on the wall of the different steps involved in a task provides the child with visual reminders of what is expected. Then, when the child looks to the teacher for affirmation about a job done or the next step in the task, the teacher can simply point to the chart or tell the child to look at it. In this way, the child does not gain the teacher's full attention, and he or she may eventually learn to self-direct. This is also less distracting to the other students in the class since it does not involve a verbal exchange with the teacher.

Behavioral interventions

A child with SMS can often have behavioral outbursts that disrupt his learning and that of others in the classroom. Some tantrums are inevitable, and the child may be unable to regain control over these impulses. It is clear that the child is genuinely upset at being out of control, and teachers should try to view the situation with a sympathetic attitude. It is important to establish consistent strategies which can help the child with SMS get through these difficult periods as quickly as possible. First, parents and teachers working closely with children with SMS will often get to know the types of situations likely to provoke a behavioral outburst. Some typically difficult times include: transitions from one activity to another, particularly if the SMS child is enjoying the activity that is ending; unexpected changes in the school routine, such as a substitute teacher, a school assembly that the child did not know about, etc.; and emotional upset (or excitement) in the teacher or classmates. There are usually subtle (and sometimes not so subtle) clues that a tantrum is about to begin, and teachers should intervene as soon as possible before the situation escalates. Taking the child aside and talking in a quiet, emotionally neutral tone often helps to defuse the situation. Sometimes, telling a favorite story in a very quiet voice will keep the tantrum from developing, particularly if the child has to calm down to hear what the teacher is saying. These interventions should last only long enough to distract the child, who might then be willing to continue on with an activity.

At times, nothing works to keep a tantrum from 'taking off', and once it is in full-blown splendor, there is little anyone can do except to let it run its course. We have found it best to physically remove the child from the classroom during these episodes, so that he gets the least attention possible and can calm himself. Allowing the tantrum to play itself out in the classroom, even in a time-out corner, may prolong the episode because of the excessive amount of teacher and classmate attention it inevitably engenders. If possible, someone other than the teacher should take the child to a separate, uninteresting room for time-out. Many children with SMS are anxious not to miss any activities with their beloved teacher, and may work extra hard at bringing the tantrum to an end.

Tough Love

Children with SMS can present major challenges in the classroom; yet for teachers who have faced them, the rewards of teaching kids with SMS can far outweigh the challenges. Teachers at our center often count SMS kids among the most loved and memorable (positively!) children they have ever taught. Many have said that if they weren't so lovable, one would never survive the less appealing aspects of SMS. To borrow a phrase from the Peace Corps, teaching a child with SMS can be "the toughest job you'll ever love."


Elwyn is a nonprofit organization headquartered near Philadelphia which provides a variety of services for people with developmental disabilities, including SMS. Its genetics outreach programs include a service called Technical Assistance for Schools for Smith-Magenis Syndrome. Brenda Finucane, M.S. and Barbara Haas-Givler, M.Ed. provide staff training and consultations for students with SMS in the U.S. and Canada. For more information, contact Brenda Finucane, M.S. at This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .


IDEA

The U.S. Federal law defining your child's educational rights is the Individuals with Disabilities Education Act (IDEA). This law defines the responsibilities of the public school system as well as the processes to be undertaken to ensure that a Free Appropriate Public Education (FAPE) be provided to your child. One of the most critical processes defined in IDEA is the IEP, which is to be developed annually for your child.

IEP

The Individualized Education Program (IEP) is a unique plan, developed specifically for the educational goals of your child for the current school year. An IEP is an official written document that must be signed by all members of the IEP team for your child. While the data contained within an IEP is regulated by guidelines, the form of the IEP may vary from location to location.

The U.S. Department of Education has created a guide to educators, parents and agencies to implement the requirements of the IDEA regarding IEPs:

The following website is used by many parents, educators and attorneys to understand the laws governing special education and advocacy for children with disabilities: