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 BirminghamMedical 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. CoordinatorName 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.