The Emotional, Social, and Academic Issues secondary to NF

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

2. 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.

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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)

9. 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

10. 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)

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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?

17. 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

18. Common Areas of Difficulty…

19. Visuoperception/Visuomotor • Deficits show up in… • Math, especially geometry • Visualizing concepts from science, etc. • Less-than-neat handwriting • Copying information from blackboard

20. 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

21. 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

22. Does your child need services? There is a difference between accommodations and modifications in the school setting.

23. 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

24. 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.

25. Modifications Modifications change or alter what is being measured and are considered substantial changes in the general education curriculum.

26. 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 .

27. 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,

28. 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.

29. 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.

30. 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

31. 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.