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Providing Integrated Care for Individuals on the Spectrum & Caregivers What Works and What Doesnt? A. Charate, MA, LCPC, CDAC, BCIA Board Certified C. McCarthy, MA, LPC A. Sarup, BA

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Overview Background Information Integrative Care Series 1.Working together as a Team with Caregivers 2.Personalized Individual Therapy & Neurofeedback 3.Working with Schools, Social Workers, and others

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What is Known FASD is associated with life-long cognitive and behavioral impairments Primary behaviors are misunderstood Inappropriate interventions or punishments are used Individuals are left frustrated and discouraged Secondary behaviors are pervasive in adolescence through adulthood Develop maladaptive behaviors to cope with a sense of rejection, failures, loneliness, and lack of meaningful relationships

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Experience at the Center Identify caregivers and providers knowledge on FASD Provide needed education How FASD affects that particular individual Pre and post treatment Quantitative EEG (QEEG) analysis Connecting abnormal brainwave patterns and associated behaviors QEEG Guided Neurofeedback trainings Individual therapy & consultation to parents Skills coaching, social skills groups

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Patience and Skill Based Approach Rely on research and what we know Brain damage is the most serious aspect of FASD and presents the greatest challenges to learning and functioning in school Effects: Cognition Behavior Social Skills * The damage is permanent but it can be accommodated, but not cured.

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Working together as a Team with Caregivers The first step into truly integrated care

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Caregivers Initial Consultation Identify where they are in the process of treatment and their knowledge of FASD Corroboratively create a treatment plan to ensure mutual understanding and an obtainable goal Problems experienced from an individual and family system perspective Their support systems and other strengths Their motivation for change Some parents are willing to partner, some just rely on us for treatment Validation, identify the issues, answer concerns, provide explanation, instill hope Gears of the Vital Relationship to Impart Change

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Self-Care for Parents Observation of stress management How does couple function? Date night, preferably sans talking about the child(ren) Establish a daily 30 minute routine for self Find ways to decompress and relax just like counselors. Case Example: Lou

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Personalized Individual Therapy & Neurofeedback The second crucial approach of integrative care.

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Individualized Treatment Person-centered Provide treatment that is applicable to the clients functionality Provide one on one treatment Develop rapport to facilitate openness and change Assess willingness to change and insight Teach them what to do rather than what not to do

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Strategies for working with clients with FASD Clients Difficulties 1.Visual or hearing impairments 2.Impulsive decisions and statements. 3.Difficulty with Abstract Concepts 4.Memory Deficits 5.Attentional Issues 6.Difficulty with Transitions Counter Difficulties 1.Use Visual Cues 2.Role Play Clients often need to practice situations with counselors repeatedly 3.Create attainable goals 4.Model appropriate behavior Teach how to get someones attention in an appropriate way Reinforce desired behavior

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Individual Therapy- Dialectic Behavioral Therapy 1980s: Marsha M. Linehan for adults with Borderline Personality Disorder symptoms: Unstable self-image Unstable relationships Unstable emotions Inappropriate, intense anger or difficulty managing their anger when it occurs Significant impulsivity act before thinking Symptoms for BPD and FASD overlap DBT aims to teach the children coping skills which directly targets these symptoms Therapist will help clients identify triggers to emotions, label and rate her emotions, and teach strategies such as: Mindfulness Asking for help appropriately Recording emotions daily Emotional regulation

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Individual Therapy- ACT Acceptance and Commitment Therapy: Accept thoughts (dont fight them) Learn skills to cope with thoughts Allow them to come and pass Staying within the present moment, i.e. mindfullness. The opposite of mindlessness. Mindless lives involve constantly thinking about the past, schedules, plans, work, etc. without taking time to be in the present moment. Focus on becoming aware of all incoming thoughts and feelings and accepting them, but not attaching or reacting to them Mindfullness allows our clients to more aptly deal with current stressors and distressing feelings with a flexible and accepting mindset

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Cognitive Defusion Most individuals, will experience their thoughts as facts. Therapist can help defuse these thoughts into much broader statements. Separating themselves from facts I am anxious! I am having a feeling I have noticed that I am having a feeling

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Assessments Pre treatment and post treatment Quantitative EEG Analysis (QEEG) Pre and post treatment CNS Vital Signs testing measures core neurocognitive brain. Attention, memory, executive control, processing speed, cognitive flexibility, social anxiety, reasoning, working memory and more (computerized tests)

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Neuroplasticity Human brain is plastic It can change and adapt under the correct circumstances If the brain experiences trauma to one location, then other location takes over its specific function It requires some cognitive efforts and trainings in order to make the needed changes Mental & emotional states Sensory informational processing Memory formation and retrieval Cognitive and decision-making processes Communications from all of the above THE BRAIN CAN BE STRENGTHENED AND CHANGED, IF IT IS CHALLENGED

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Pre-Treatment Q-EEG Pre-treatment helps us develop protocols based on the presenting symptoms and brain-mapping results A QEEG offers comparative norms for clients based on age, gender, handedness Completely non-invasive treatment Measures brain waves which produce a signal that can be used as feedback on brain activity to teach self-regulation Typical treatment includes 30 minutes neurofeedback followed by 30 minute parent consultation and behavioral modification through psychotherapy Skills coaching using DBT/ACT therapy skills Social Skills groups/ Project Good Buddies Parent support groups Charting progress every 10-15 sessions

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Normal QEEG https://www.google.com/search?q=Normal+QEEG

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18 months Post Treatment Follow Up

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Three Years Post Treatment Follow Up

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Instilling Hope The EEG helps people objectify the symptoms in a world where symptoms are often reported in the subjective Helps explain the childs behavior is somewhat out of their control at the moment. IS Tangible evidence that you can see and helps family understand that the client IS trying but their brain is not functioning optimally For the child or the young adult, its much more understandable as to why they are struggling in school and they have more willingness to come for treatment

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Neurofeedback Neurofeedback helps regulate overstressed or underactive brains and is helpful with issues of focus and attention, behavioral issues, sleep concerns, headaches, and emotional issues The essence of neurofeedback / eeg biofeedback is that when a monitor displays your brainwave activity, you can quickly learn to change that. Audiovisual feedback system based on the principle of Operant Conditioning Crucial that clients come regularly and twice a week Begin to see results at 20-30 session mark Re-assess and possibly change location During and Post Treatment QEEG Other conditions that can benifit from neurofeedback include: ADD / ADHD, Anxiety, Insomnia, Headaches Migraines, Chronic Pain, OCD, Anger, Conduct Disorders, Learning Disorders, Sensory Processing Disorders, Neurodevelopmental conditions, and ASD

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Would Medications Interfere with Training? Based on a survey with over 150 clinicians, it was widely reported that more than half their neurofeedback clients started neurofeedback while taking one or more medications. Neurofeedback is complimentary to many treatment approaches and tends to act synegistically to medications. May improve the response or stabilize the effects. The theory about reducing dosages is that as the brain becomes more activated during training, it works more efficiently. The same dosage seems to have a stronger effect on a more efficient brain, and thus reduction may be required.

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Other Neurotherapies Low Energy Neurofeedback Stimulation (LENS) Uses feedback directly from the skin of the scalp and requires no visual or conscious feedback The result is a changed brainwave state, and much greater ability for the brain to regulate itself It addresses the underlying neuropsychological functions as a rehabilitation tool increasing the self-regulatory capabilities of the brain Disrupts the dysfunctional patterns and letting the brain re-establish the connections. Coherence Training Measures how well-coordinated the communication is between one area of the brain to the other If two areas are communicating too little or too much, it can interfere with the efficiency of the brain QEEG brain map is a tool that helps assess coherence

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Abnormal Asymmetry & Coherence

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Training Results

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Working with Schools, Social Workers, and others The Final Step of fully integrative care

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Indiscriminate Lack of Knowledge throughout Multiple Systems Secondary behaviors place an immense emotional, financial, and social burden on individuals and their caregivers Need for constant vigilance to manage their cognitive and behavioral challenges Extremely limited support from providers, community members, and extended family

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Barriers at the Systems Level Delayed diagnosis Difficulty in qualifying for services Limited availability for required services Difficulty in maintaining services and supports Lack of knowledgeable professionals An inadequate amount of effective services A shortage of providers who accept Medicaid

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Adaptive Behaviors Ability to care for self, interact in a social world and function in the community Fetal Alcohol Spectrum Disorder Demonstrate lower level of adaptive behavior relative to their intellectual functioning Significant executive functioning deficit Plan, organize and shift attention in a goal directed way Adolescents and young adults are required to inhibit impulses, plan goal directed activities in increasingly complex and social situations Gap widens between peers

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What is needed? 1.Access to disability services based on level of disability functioning rather than IQ 2.A quality neuropsych assessment to help develop learning and behavioral plans 3.Additional educational support to enable these children to stay in the school environment 4.An FASD expert in every school district, judicial system and employment services that will act as advocate 5.Assistance in planning leisure and unstructured times

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What works vs. What doesn't What doesn't work? Speaking slow and using visualizations Teach them what they should do. Cool Down Breaks before lessons Repeat, repeat, repeat Reward appropriate behavior Understand they are trying Clear concise instructions What does? Using analogies and complex instructions Tell them what not to do Punishment Lecturing in the moment. Expecting immediate learning Giving up too quick Complex instructions

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In the Schools Common Issues for Teachers to Understand Lower than average IQ Difficulty with planning and organizing Short term memory problems Context-specific learning and difficulty accessing information on demand Poor grasp of abstract concepts Developmental delays in language, motor, and social skills Difficulty reading social cues for appropriate behavior Poor sensory integration Math deficits causing difficulties in Counting money Making change Maintaining budgets and Reading analog clocks How Students with FASD Learn Best Concrete hands on learning Good expressive language skill but difficulty understanding what others say Teach how to ask for help How to appropriately handle frustration and disappointment Teach self talk Limit transitions

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The Neurofeedback, Counseling, and FASD Institute of Illinois. 24W500 Maple Ave. Naperville, IL 60540 PH: (630) 548-4501