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Behavioral Issues and Tuberous Sclerosis Complex Tuberous Sclerosis Alliance 801 Roeder Road, Suite 750 ● Silver Spring, MD 20910 ● (800) 225-6872 ●…
Behavioral Issues and Tuberous Sclerosis Complex Tuberous Sclerosis Alliance 801 Roeder Road, Suite 750 ● Silver Spring, MD 20910 ● (800) 225-6872 ● TABLE OF CONTENTS Anxiety and Mood Disorders and TSC………………………………………… 3 Attention Deficit Hyperactivity Disorder (ADHD) and TSC………………….. 4 Autism Spectrum Disorder (ASD) and TSC…………………………………... 9 How Do I Get the School to Work with Me? ………………………………... 12 Functional Behavior Assessment………………………………………….. 15 Behavior Intervention Plans………………………………………………. 16 When Behaviors Interfere with School Policy…………………………… 17 Sample Letter……………………………………………………………… 20 IDEA Behavior Policy Chart…………………………………………….. 21 Resources………………………………………………………………….. 22 References…………………………………………………………………. 24 Consensus Clinical Guidelines for the Assessment of TSC-Associated Neuropsychiatric Disorders (TAND) .......................................…………. 25 TAND Checklist…………………………………………………………… 27 2 Behavioral Issues and Tuberous Sclerosis Complex Many children with tuberous sclerosis complex (TSC) have behavioral issues. The most recent surveys in children and adolescents with TSC confirm rates between 44-69% of social-communication difficulties (including poor eye-contact, repetitive and ritualistic behaviors and speech and language delay), disruptive behaviors in 40-50% (including over activity, restlessness, impulsivity, aggressive outbursts, temper tantrums, and self-injurious behaviors) as well as mood-related difficulties (including depressed mood, anxiety, extreme shyness) and sleep problems in 20-50%. When you couple learning disabilities and/or cognitive delays with these behaviors, it is clear that individuals with TSC need support and interventions not only at home but also in the school setting. Understanding and knowing that the behavior is not intentional but is a manifestation of the individual’s disability is imperative for the individual’s success in school and life. The purpose of this publication is to provide information about the behavioral issues in TSC and offer strategies and suggestions to help individuals, school personnel, and parents cope with these behaviors. The psychological and behavioral issues in TSC are very important and complicated issues which need to be understood by families, educators, and policy makers. There is a lot to learn and that takes time. However, we are not alone in the frustration or in being unsure of how to handle the behaviors. We can all be part of the solution by working together in making a difference for children with TSC. Resources in understanding behaviors and behavior strategies and school/family partnerships are provided on page 22. Anxiety, Mood Disorders and TSC Individuals with TSC experience a higher rate of anxiety disorder than others. This anxiety can manifest itself into forms of excessive worrying, sporadic behavior, and unexplained panic attacks. Students who have attended elementary school without problems can suddenly develop school phobia in middle school. The effects of this disorder can be devastating and seem to be more challenging as the student gets older. An anxiety disorder can have a sudden onset because of one traumatic experience. It can be something as simple as being embarrassed in front of peers in the classroom. Children with TSC are more susceptible to anxiety disorder. What 3 might be easily handled by a typical peer will be magnified in the mind of an individual with TSC to the point of developing school phobia. Many times, because a student may have co-existing mental health conditions such as depression, he/she is misdiagnosed. Depression can mask the anxiety or the anxiety can mask the depression. Other mental health issues such as aggression may be the result of the child having depression. Many individuals with TSC will develop Obsessive Compulsive Disorder (OCD). OCD is an anxiety disorder that causes unwanted thoughts and/or repetitive behaviors. Repetitive behaviors, such as hand washing, counting, checking, or cleaning, are done to control the unwanted thoughts in an effort to make them go away. These types of behaviors are sometimes called “rituals.” These rituals provide temporary relief, but cause extreme anxiety when they can not be performed. When an individual is suffering from anxiety and mood disorders taking the position of “hard love” does not work. When you are dealing with school-age children, it will take the school, medical health professionals, and families working together to develop an appropriate behavior modification plan. A behavior modification plan for the child will be needed not only to support the student in school, but also to teach him or her how to deal with the anxiety issues on the other aspects of their lives. Unstructured situations are the most difficult for individuals with mood and anxiety disorders. School assemblies, in the hallway between classes, or on the bus are all examples of unstructured situations that can produce anxiety for individuals with TSC. Extreme anxiety is very common for individuals with TSC and intensifies the stress, sometimes causing acting-out behaviors. If the school and families understand that these are at-risk situations for students with TSC, they can put interventions in place to intervene before the behavior occurs. Attention Deficit Hyperactive Disorder (ADHD) and TSC To understand the difference between behaviors associated with ADHD and intentional or attention-seeking behaviors, let’s look at some of the common behavior manifestations of ADHD: ã Unable to follow more than one-step directions ã Unable to process questions asked (starts listening but then looks around or fidgets and becomes lost when asked a question) 4 ã Unable to listen (starts listening but then looks around or fidgets and seems lost when attention is returned) ã Unable to wait his/her turn to enter a conversation appropriately ã Unable to share and take turns when playing games ã Unable to respond to teasing and to resist dares (temptations) ã Unable to take responsibility for his/her actions or take criticism ã Unable to show interest in other’s feelings ã Unable to understand other people’s space or boundaries Even though a lot of these characteristics are very typical in many children, ADHD children seem to be at least two to three years or more behind their peers in maturity levels. (An individual 14 years old will act like a child who is 10 years old.) Because of their behavioral manifestations, individuals with TSC struggle with social relationships not only as children, but without proper interventions and strategies, they will also struggle throughout adulthood. They will be unable to develop and maintain successful relationships with both friends and spouses. Understanding that these behavioral manifestations are not intentional will be the first step to supporting individuals with ADHD. Because they do not understand or read facial expressions and body language, they sometimes come off as blunt and unfeeling. Many teens with ADHD will become defiant and are at high risk for alcohol and drug abuse. Many young adults treat drugs, alcohol, and truancy as a ways for them to “fit in.” Parents of children with ADHD must be aware of this risk and do proactive planning and education. All of this seems bleak and hopeless, but with the appropriate interventions and support both at home and at school, individuals with ADHD can become independent, successful adults. Success in school will be the first step in the right direction. Because individuals with ADHD seem to ignore or not hear requests or directions and are disorganized (forgetting homework, not bring materials to class, or being late), many educators feel the behaviors are intentional and will reprimand with negative outcomes. Over time, individuals with ADHD will become defiant, stubborn, and angry because they don’t understand why they act the way they do. Some of these individuals with ADHD also develop oppositional defiant disorder (ODD). Many individuals with ADHD struggle in expressing their feelings and develop quick tempers and impulsive behaviors. Unstructured situations are the most difficult for individuals with ADHD. School assemblies, in the hallway between classes, or on the bus are all examples of unstructured situations that can produce anxiety for individuals with ADHD. 5 Extreme anxiety is very common for individuals with TSC and coupled with ADHD intensifies the stress causing acting-out behaviors. If the school and families understand that these are at-risk situations for students with TSC and ADHD, they can put interventions in place to intervene before the behavior occurs. The best way for the school and parents to work together is getting the school system to recognize the disability of ADHD. A child with TSC who has ADHD that is adversely affecting their education needs to be evaluated under the Individuals with Disabilities Education Act of 2004 (IDEA). The disability of ADHD is not one of the 12 categories listed under IDEA. To have your child evaluated under IDEA, the parent or guardian would request an evaluation not under ADHD but under “Other Health Impaired.” An Individual Education Plan needs to be developed when a child is identified as having a disability that adversely impacts learning. The chapter, entitled “How Do I Get the School to Work with Me,” outlines this process. Once a student has been identified as having a disability under IDEA, an IEP will be written. Parents are a very important member of the team that develops the IEP. (See: TS Alliance publication “What is an IEP?”) There will be specifically designed interventions to support the individual in being successful in the classroom. By having an IEP in place, educators will be required by law to provide the supports needed for the student to succeed. Because behaviors often become more severe as the individual grows older, it is important to get an IEP in place as early as possible in a child’s school career. It takes everyone to make sure an individual with ADHD develops the strategies needed to become independent and self sufficient. To do this, the IEP team must focus on the positive aspects of the individual. These individuals tend to be creative, artistic, and believe it or not, anxious to please. When an individual knows from day to day what is expected, it is easier to be prepared for the day. Making sure a daily schedule is followed will help him/her succeed in school. He/she will know what behavior and responsibilities are expected and will build confidence through being successful. Please understand this will not happen overnight; it requires consistency and follow-through, not only by the student, but also by the adults implementing the formal plan. There will need to be numerous modes of input in the implementation of the schedule. ã The schedule will need to be placed where the student can see it daily. ã The schedule will need to be gone over verbally so the student not only sees it but also hears it. ã There will need to be numerous reminders of the schedule throughout the day. 6 This also needs to happen at home. Post the homework schedule on the refrigerator and remind the child when it is time to do homework, where homework goes after it is done, and where the backpack goes after he or she puts the homework in it. Then, of course, remind him/her to take it to school when leaving. This may seem like “over kill,” but it will take a long time for the child to develop the ability to automatically follow the schedule. If the student’s schedule is going to be changed in any way, either at home or at school, the student will need to be prepared for the changes. Transition is very difficult for children with ADHD and anxiety disorders. However, with proper preparation the student will eventually help develop the ability to handle transitions with fewer difficulties. Consistency and follow-through will mean failure or success for individuals with ADHD. Parents sometimes will not be consistent in discipline – what is okay one day will not be okay the next. Parents must be prepared to follow through with a consequence and not sway from it. Do not apply a consequence you are not willing to follow through with such as, “You are grounded for a month.” If the parent does not follow through with this consequence then it sends a message the parent doesn’t mean what was said. Making sure the discipline matches the crime is essential, as is not overreacting because you are tired. Of course, that’s easier said than done. With children with ADHD, consistency is essential to learning appropriate behavior. There is growing evidence to suggest that even in cases where the diagnostic criteria for ADHD are not met, children with TSC “can show specific attention deficits and impaired goal directed behavior associated with executive control processes” (de Vries et. al., p. 185). In terms of attention deficits in TSC, de Vries and Watson (2008) suggest that attention issues need to be viewed in a neurodevelopmental approach. If one stage in attention development is compromised for a child with TSC, then other stages will be affected in a sequential manner. Attentional skills should not be viewed as separate deficits that develop independent of each other. In TSC, attention deficits may occur as a consequence of earlier attention skills not developing correctly (de Vries & Watson). When you are developing rules and routines, it is appropriate to involve the child as much as possible. Getting input in what the necessary consequence will be when the child does not follow through with a rule will get his/her buy-in. Be clear and specific about what you want the child to do. For example: I want you to clean your room on Saturdays. 7 You must remember that what you consider clean and what your child/adolescent considers clean may be two very different things. I want: ã ã ã ã Your floor picked up and vacuumed Your bed made Your furniture dusted All of your clothes hung up in you closet By 4:00 pm on Saturdays. There is less room for misunderstanding what you mean when you are specific than when you just say “clean your room.” There should be a consequence written if they do not comply with your request, such as: If your room is not cleaned by 4:00 pm on Saturday, you will not be allowed to go anywhere with your friends Saturday night. Remember there can not be any exceptions to the rule. The first time you make an exception it is down hill from there to get them to follow through with any of your requests. Remember to post the rules in a visual place and read them many times throughout the week to remind and reinforce the rules with your child. This provides stability and structure to help individuals with ADHD build responsibility. When you are giving direction, do not just ask them to do something. For example: Wrong: Will you please go to bed? Correct: Go to bed it is your bed time. Wrong: Can you pick up after yourself? Correct: Pick up your dishes and put them in the dish washer. Wrong: Won’t you please get up? Correct: It is time to get up and get dressed. If any of these issues are reoccurring, there should be rules defined and consequences for not doing them. 8 Example: Your bed time is 10:00 pm – that means in your bed and lights out. I will give you a warning at 9:30 p.m. and 9:45 p.m. If you are not in bed by 10:00 p.m., you will not be allowed to play your video games the next evening. Example: Pick up your dirty dishes and put them in the dish washer. If you do not put your dishes in the dish washer after you use them, you will not be allowed to eat in the living room for two days. Example: You are to get up and be ready for school by 7:30 a.m. I will call you at 6:30 a.m. and 6:45 a.m. to get you up. If you’re not out of bed and dressed by 7:30 a.m., you will not be allowed to have friends over that evening. It is important to get input from your child as to what would be an appropriate consequence for the misbehavior. If the child plays a role in determining the consequence, they won’t be able to say that it is “unfair”. Remember: NEVER ARGUE because if you do, you lose every time. Just say “you know the rule” and just say it once. Then walk away and follow through with the consequence. Autistic Spectrum Disorder (ASD) and TSC Children with TSC may have high-functioning to severe ASD. Many of the individuals with high functioning ASD have more problems in life and school because they don’t quite fit in. It is important to have an IEP in place for these individuals, as well as for individuals who are more severely affected. IDEA certainly stresses academic success, but it also encourages social and functional success as well. It takes everyone to make sure an individual with ASD develops the strategies needed to become independent and self-sufficient. Some behavior manifestations of ASD include: ã An inability to connect with others ã Language skills are poor or non-existent ã Issues with sensory processing (sensitive to light, textures, and noise) ã Self-stimulation ã Does not transition well ã Obsessive compulsive behaviors ã Repetitive speech 9 Individuals with ASD may use behavior as a form of communication. In this situation, the behavior serves a purpose. Some other possible reasons for the behavior can be: ã Caused by something in the environment ã To get attention ã To escape an unwanted activity ã Pain People may exhibit frustration to communicate a need or feeling. This may be especially true for individuals who do not have any form of speech with which they can communicate with others. Coping with stressful events or activities may also cause individuals to feel anxious or frustrated, in other words they may feel overloaded by the stimulation around them. According to Myles and Southwick (1999), three stages of overload are identified: (a) the rumbling stage, (b) the rage stage, and (c) the recovery stage. The authors state that the length of each stage may vary. One stage may last anywhere from an hour to a few minutes. The Rumbling Stage To show frustration or a general discomfort, individuals may: ã Bite the nails or lips ã Lower his or her voice ã Tense the muscles ã Tap the feet ã Grimace These behaviors can serve as indicators of a person who with overload. Early intervention by a teacher or parent can reduce the risk of an overload. First, determine the function of behavior and then apply the appropriate intervention. Work with the child to develop appropriate ways to express frustration, develop coping strategies or ways to communicate a need. Parents and teachers can utilize preventive strategies to promote self-awareness, self-calming, and selfmanagement. Parents and teachers can also use a variety of preventive strategies, developed by Myles and Southwick, to help ease the individual's anxiety or frustration such as: 10 ã ã ã ã ã ã ã ã ã ã Antiseptic bouncing involves removing the individual, in a non-punitive fashion, from the environment in which he or she is experiencing difficulty. For example, you could ask a student to take a note to the teacher across the hall to give the opportunity for the student to regain a sense of calm before returning to the classroom. Proximity control is utilized when the parent or teacher moves near the individual who is engaged in the target behavior. The parent or teacher who circulates through a designated area is using proximity control. Signal interference is a nonverbal signal that informs the individual that the teacher or parent is aware of a seemingly minor precursor behavior. The teacher or parent can stand where eye contact can be made with the individual or a “secret” signal between teacher/parent and the individual can be used as a warning to watch the behavior. Touch control is another preemptive strategy that can be used to reduce challenging behavior. For example, the parent or teacher may gently touch the individua
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