Transcript Slide 1
The Emotional, Social, and Academic Issues secondary to NF Daniel S. Marullo, Ph.D. Children’s Behavioral Health at Children’s Hospital of Alabama Margaux Barnes, M.A. & Kelly Ross, M.A. University of Alabama at Birmingham Medical Psychology Graduate Program Talking to Children & Teens about Their Illness • General Considerations – The questions that children & teens may have and their immediate concerns will likely reflect their age and development; – Children & teens are likely to ask the same question at different times in their development due to their change in understanding. • Developmental Considerations – Infants • Not able to understand illness • Likely to reflect the distress of others – Toddlers & preschool • Concrete thinking with tendency to focus on one aspect of illness • Magical thinking – I’m sick because I’m bad vs If I’m good I won’t be sick • School aged (6-9 years) – Beginning to have organized logical thoughts – Beginning to engage in concrete problem solving – Curious about illness & may specific questions – Can have exaggerated fears • Tweens & Teens (9 & above years) – Beginning to have more “adult” like understanding – Beginning to think about the future – Can have heightened emotions – Developing relationships outside the family (and developing fear of rejection) – Beginning to become an individual • Rebelling against the family How can it affect my child and our family? • Psychological/Emotional: adjusting to the disease, coping skills, recognizing when your child is in distress • Social: managing impact of symptoms on self-esteem, friendships, staying active • School: managing cognitive difficulties if present, attention, being your child’s advocate, navigating the school system Psychological/Emotional Common Experiences of Children with NF: – Distress and worry related to NF symptoms (spots, freckling, skeletal abnormalities) – Feelings of vulnerability and loss of control – Lowered self-esteem Psychological/Emotional Frequent Causes of Worry: – Unpredictability of disease progression and associated symptoms – Disruption of social and academic life – Poor body image (café-au-lait spots, freckling, neurofibromas) – Managing school difficulties (ADHD, learning disorders) Psychological/Emotional Common reasons for feeling vulnerable or out of control: • Victim of the disease: – “Because I am sick, I can not do…” – “What will I be able to do with my life?” – “I won’t ever be normal.” • Loss of control due to: – Unpredictability of disease progression – Disfigurement – Frequent medical interventions Psychological/Emotional Factors associated with lowered self-esteem: – Comparing self to healthy peers - delayed puberty, short stature, disfigurement, learning difficulties – Perceived social isolation/withdrawal - children and teens may feel “different” when they are unable to participate in age appropriate activities with peers. – Teasing/bullying (perceived or real) Developmental Differences • School-aged children tend to focus on: – Immediate issues, like pain with medical treatments – Worry about teasing – Upset by being different from friends • Adolescent issues include: – – – – Need to be in control Peer pressure to conform Body image Worry about future Emotional Distress • Most young people with chronic illness experience some degree of agitation, anxiety, or depression • At times, additional support may help a child regain confidence and adjust to his or her disease • Working with a Pediatric psychologist or counselor can help to restore child’s overall health and quality of life Signs of Emotional Distress • • • • • • • • Social isolation Inability or refusal to go to school Negative self-statements School difficulties Anger or excessive irritability Fatigue (above that associated with NF) Boredom/apathy Anxiety or excessive worry What can parents look out for? • • • • • • • • sudden or intense change in normal behavior remains in a funk for weeks or months angry, moody, and/or irritable drop in grades changes in eating or sleeping patterns social isolation constant worrying or exaggerated fears complaints of headaches, stomachaches, cold and clammy hands, rapid heartbeat, faint feelings • preoccupation with death How can I help my child? • Talk with your child • Acknowledge fears or feelings • Reframe • Active Problem Solving • Anticipate the issues – Example: Dealing with questions from peers QUESTIONS TYPICALLY ASKED BY PEERS What is wrong with ______? Can I catch what _______ has? How should I treat him? Will _______ die from it? Can ______ still play. Visit me at home, drive, date, etc? Should we talk about _____ illness or should we ignore it? School Problems • One study found >90% of children with NF-1 had significant difficulty in at least one subject at school • Can range from minor difficulties, to learning disabilities, to need for special education services • Widely considered the most common complication associated with NF-1 Common Areas of Difficulty… Visuoperception/Visuomotor • Deficits show up in… – Math, especially geometry – Visualizing concepts from science, etc. – Less-than-neat handwriting – Copying information from blackboard Executive Function (“The CEO of the brain”) • Deficits show up in… – Organization, planning, problem-solving – Multi-step math or verbal problems – Emotion and behavior self-regulation – Monitoring own thoughts, shifting strategies when needed Attention • Deficits show up in… – Maintaining focus over extended time – Distractibility (easy to lose focus) • In the classroom, learning may suffer because only retaining bits and pieces Does your child need services? • There is a difference between accommodations and modifications in the school setting. Accommodations • Academic accommodations do not change or alter what is being measured and are considered a teaching support or service that a student needs in order to meet the expectations of the general education curriculum • An accommodation addresses the question of how a student will learn Accommodations Example • Example: when children or adolescents display attention deficits, they are often provided with preferential seating in class (e.g., placing the child near the teacher at the front of the room); • It minimizes the distractions the child faces (i.e., the child need not look through a sea of twenty other students to see the teacher); • Allows the teacher to more easily monitor the child’s level of attention and engagement in the classroom activities. Modifications • Modifications change or alter what is being measured and are considered substantial changes in the general education curriculum. Modifications • If the goals or expectations of the general education curriculum are beyond the student’s level of ability, a modification is needed; • A modification addresses what a student will learn: instructional level, conduct and performance criteria; • For example, a student who is Developmentally Delayed may work on functional academics or life skills rather than the traditional curriculum; • Or, a student who has a Learning Disability or Other Health Impairment may be learning at a slower pace and have difficulty processing may be provided materials at a lower grade level . Letter Requesting an Evaluation (Date) Name of Principal & Special Ed. Coordinator Name of School Address of School Dear (Name of Principal & Special Ed. Coordinator) I am the parent of (name of child). My child is having problems with his/her school work. (Insert the type of suspected disability.) Please evaluate him/her to see if there is a disability and whether he/she needs special education and related services. Please tell me in writing who will be performing the evaluation so that I may give my consent. Thank you for your help. I look forward to hearing from you soon. Sincerely, Evaluations • Must have parents’ permission • A total of 90 days to evaluate, meet with team and discuss results (this includes summer vacation and holidays) • If a child does not qualify for special education services, they may still receive a 504 Plan to ensure accommodations are being made. 504 Plans • 504 Plan – Is not Special Education • It is from Section 504 of the Rehabilitation Act • It is a written plan to inform the school of a child’s medical condition such as NF-1, asthma, diabetes, cancer, etc. • Frequent rests, copy of notes/outline, preferential seating, can take notes on computer or record lectures, etc. Individualized Education Programs • If a student is in Special Education, they are required to have an IEP. This is a legal binding document that the team must sign agreeing that certain services will be provided. • If a parent does not agree with the plan, they can refuse to sign and ask for the IEP to be revised. • A parent can request an IEP meeting anytime Remember… • A student’s grades should be based on their IEP goals; • A student in special education should never fail a grade or be held back in an attempt to ensure they “catch up” with other children.