Neurdiversity Notes 6.10

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1.

Genetic disorders
a. Dr. FJ wrote a book that includes a quick overview of 700 rare disorders
2. Final comprehensive report
a. Check in with each student on their case
b. Scoring rubric (under assignment)
c. Include COVID diagnosis in the medical section of background information
d. List of assessments - include full name and abbreviation in parentheses
e. Validity statement - based on student’s behavior and that they had a good effort
f. Adaptive - only if applicable
g. Summary - cohesive summary a little longer than a case formulation with no new
information
h. Psychometric tables go at the end with a statement telling laypersons to review
the numbers with a professional
i. Final review with an editing list and send to the writing center
j. If you have difficulty with verb tense, keep sentences short and direct
k. Check if each paragraph flows together
l. Okay to cut/paste data tables
m. New style of report writing - narrative style has good examples
3. Class on June 24th will be individual writing conferences with Dr. FJ
4. Fetal Alcohol Syndrome (FAS)
a. Osmosis video
b. FAS is the leading cause of intellectual disability
c. Parent interviews - ask open-ended questions on substance use and then probe
further. This is the most difficult part
i. Tell me about your prenatal care...were there any dietary issues...tell me
about alcohol use
ii. This happened in the past, and this will help us help your child
d. Video of child - physical characteristics such as vermillion lip, lots of motor
dysregulation and can’t sit still, disinhibited
e. Frontal lobes border the motor strip, which are highly affected by FAS
f. WISC scores may be around 50-70 as she may not have the attention capacities
and may score in the intellectual disability range
g. Alcohol is a teratogen, the brain grows from bottom to top
h. Video - Australian child with FAS
i. Syndromes have mild, moderate, and severe cases
j. Document in files section as a comprehensive resource
k. In the schools, may have a child who has signs and needs a re-diagnosis
l. Student may qualify under OHI or ID
i. If ID, student gets disability payments for life and services up til age 23
ii. OHI does not have benefits after school
m. Student will need paraprofessional support, accommodations, and modifications
n. Find strengths - what the child can succeed at, “strength-based model”\
o. Difficulty generalizing - “exit” sign in one setting may not know “exit” sign in
another setting
i. Called transfer training or generalization training
p. Vineland is a helpful measure for ID - can write IEP goals based on tasks
5. Spina Bifida
a. Shared elevator speeches
b. ISBE disability category - OHI
c. Cultural variables - SES can impact access to resources
d. Resources: spina bifida association, lurie children’s association
i. https://www.luriechildrens.org/en/specialties-conditions/spina-bifida-
care/resources/
e. Case formulations - helpful to include strong family support and if they are
currently receiving services
f. WHO has a International classification of functioning (ICF) to label how a child is
functioning
g. Hopson et al. (2019): Development of an evidence-based individualized transition
plan for spina bifida.
6. Neurofibromatosis
a. Shared elevator speeches
b. Many boxes similar to spina bifida
c. Osmosis video
d. There are many conditions with benign cysts so genetic testing is important
e. Important to over-report details because the goal is to make sure their functioning
doesn’t decline
7. Turner syndrome - females
a. Video - turner syndrome organization
b. Has a common presentation
c. Visual-spatial difficulties (reading visual expressions, math, driving, etc.)
d. Look for a non-verbal learning disability (have good verbal skills)
i. Talk to them throughout the assessment and give verbal directions to
help them organize it - do not point
e. Strength model of remediation - have them talk through their problem-solving
process
8. Williams Syndrome
a. Video - an introduction to Williams Syndrome
b. Used to be called “cocktail party syndrome” because they are very
friendly/talkative
c. Have a non-verbal learning disability
d. Strong musical abilities and highly thoughtful
e. Socially strong - can also recognize when others are being mean to them
f. Fusiform gyrus highly developed - remember faces and highly social
g. Williams Syndrome Association - lots of resources and camps
9. Cerebral Palsy
a. Videos
b. Due to a lack of oxygen at birth - it develops and is not genetic
c. Average IQ - especially on nonverbal assessment batteries
d. Social emotional difficulties - because of physical disabilities/being wheel-chair
bound they often are treated as if their intelligence is lower
e. Family often needs support
f. Look at the milieu - social environment - needs to be supportive to foster
resilience
g. When disability is framed with acceptance, it creates resilience
i. Anger is not inherently bad, it’s how you use it
10. Rare/Orphan Diseases
a. Lack of lobbying and support organizations
b. Lower incidence = Less support = Less funding for research
c. National Organization for Rare Disorders (NORD) - tell school and parents
d. Social Justice lens - need advocacy
i. Parents are the ones to who create change so we need to support them
11. Develop protocol for supporting students
a. Commonalities: help with daily living skills, social emotional concerns from
others’ perspectives, need family support
b. Assessment: Highly detailed history, comprehensive assessment, consult with
medical professional, family status
c. IEP/Support: transitional plan, daily supports, partner with local organizations,
consider treatment adherence
12. Student presentation on cerebral palsy

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