Neuropsych

Date: 10/28/2016 Joseph Martin Dicola DOB: 7/9/2001 CCHMC MRN: ******** Details CONFIDENTIAL NEUROPSYCHOLOGICAL REPORT Joseph Dicola is a 15-year, 1-month-old right-handed male with a chromosomal abnormality (2q13 deletion) and significant psychiatric history. He was referred for evaluation of his current neurocognitive functioning to assist with intervention planning. This report is based on a review of available medical records and information gathered on the following dates: 09/08/16, 10/04/16, and 10/18/16. Intervention planning was discussed with Joseph’s mother and grandmother on the last of these dates. RELEVANT HISTORY Developmental/Medical: Joseph was born at 39 weeks following an uncomplicated pregnancy. It was a difficult birth, requiring a vacuum -assisted delivery. His mother reported a questionable loss of oxygen. Apgar scores were 7 (1 min) and 9 (5 min). He weighed 6 pounds, 15 ounces. He was described as a happy baby, and early developmental motor and language milestones were met on-time. He was described as typically-developing until age 2 years when he began having significant behavioral issues. He received early intervention services in Arizona. His early history also includes extreme night terrors for 2 1/2 years. Joseph’s medical history is generally unremarkable aside from recent findings of a chromosomal abnormality (2q13 deletion). Brain MRI studies in April 2013 and November 2013 were normal. An EEG in October 2013 was also within normal limits. He has had several evaluations [see Prior Testing section below for details]. His family described concerns about cognitive decline. They reported increased learning and memory issues as well as poor impulse control and other executive deficits. Current medications include Prozac (was taking 1 mg nightly, increased to 4 mg after testing) and Zyprexa (2.5mg morning, 5 mg nightly). Soon, he is to start Intuniv (1 mg extended-release). He has been on multiple other medications in the past. Academics: Joseph is in 9th grade at Opportunity School (self-contained school) and is generally earning A’s and B’s. He has an Individualized Education Program (IEP) under the classification of Emotional Disturbance (not available for review). Academic history includes repeating Kindergarten and receiving special education services since 3rd grade. Last school year, he had transitioned to a self-contained classroom within the school. However, he began struggling with depression and had conflict with the teacher. He was “expelled” for looking up weapons on the computer and was transferred back to Opportunity School. Joseph’s family described significant concerns with learning. He has struggled to learn fundamental skills. He has poor auditory skills and is more of a visual learner. He is able to read but has poor comprehension. He understands the concept of money but does not understand budgeting. There has been limited transition planning, as his school is concerned his behavioral interfere with any transition placement. His family has been researching the Discovery Program through a local career center. They described the program as 9-week rotations in vocational training for all ability levels as well as instruction in either traditional schooling or life skills. Behavioral/Emotional/Social: Joseph’s family described long-standing behavioral issues beginning at 2 years of age. He was expelled from multiple daycares/preschools. He was diagnosed with Posttraumatic Stress Disorder (PTSD) at age 2 years, followed by diagnoses of night terrors and Attention-Deficit/Hyperactivity Disorder (ADHD) several years later. He has been receiving mental health services since 2004. Until age 10 years, none of the treatments (therapies, medications) had been effective. He had had more than 16 inpatient psychiatric hospitalizations and two residential treatments (including one for 2 years). He has a history of visual and auditory hallucinations and suicidal behavior. He was recently hospitalized in May 2016 for self-harming behaviors and suicidal thoughts. His current diagnosis is Intermittent Explosive Disorder. Presently, his family said he is as emotionally stable as he has ever been. Over the past several years, his family reported his behavior has improved. He is less aggressive/violent and has had no incidents in the past few years. He does have a criminal record, with charges related to property destruction, domestic violence, and disorderly contact. He is currently on house arrest for theft. He has a probation officer that he meets with regularly. Joseph’s strengths include being loving and showing empathy towards others that are less fortunate and/or a special needs. He loves sports and attends Riverside for extracurricular activities. He is also involved in the Special Olympics. He enjoys helping the children. He has worked hard on appropriate coping strategies, and is much better at identifying when he is about to lose control. He often uses music to cope. Family: Joseph lives with his mother, stepfather, and 5-year-old stepbrother in Troy, Ohio. Family history includes depression, Bipolar Disorder, and substance abuse. Prior Testing: Per his family’s records, Joseph has been evaluated multiple times, but only some of those results were known (actual reports not available for review). He was tested through his school district in June 2004. Results indicated low-average to average cognitive skills, with a notable weakness in working memory. He had psychological testing in December 2010, and results indicated generally low-average cognitive skills. He had a neuropsychological evaluation in May 2012. The evaluation was only able to be partially completed, as he refused to complete academic testing. Results indicated low-average to average intelligence, with notable weaknesses in attention, working memory, and processing speed. Joseph was also evaluated during an inpatient admission in October 2013. Results were noticeably lower and indicated very low intelligence, again with significant difficulties in working memory and processing speed. Academic testing indicated low-average reading abilities, very low spelling skills, and extremely low math calculation skills. BEHAVIORAL OBSERVATIONS Child Interview: Joseph reported getting pretty good grades. He had trouble finding positives about school, but he enjoys going to football games and hanging out with friends. Ideally, he wants to go to Troy High School. He was knowledgeable about his diagnoses. He particularly agrees with the diagnoses of ADHD and Bipolar Disorder. In class, he moves his legs a lot and is fidgety. He has “fidgets” that help him focus; without them, he struggles to pay attention. He also reported his moods change to the extreme. He can be having fun and then quickly get depressed. He said he is getting better at identifying his emotions but does not like talking about issues unless it is urgent. For this reason, he stopped psychological therapy. His medications help a lot. If he does not take his sleeping medication to help calm him down, then he stays up all night (and feels fine the next day). He reported no concerns in the areas of processing speed, learning and memory, language expression and comprehension, or visual-spatial skills. He reported his behavior at home has been a lot better and he has been less “jerky.” He did have a period of low mood last Friday (09/30) in which he was having “what if” thoughts of self-harm. She asked his mother to have his medication adjusted, and she and his grandfather were able to calm him down. He eventually went to sleep and woke up feeling fine. He denied any deliberate self-harm recently and showed scars on his arms that had healed. He denied thoughts of hurting others, unusual sensory experiences, or delusional thinking. He denied high-risk behaviors; he used to smoke cigarettes but reported quitting last year. He reported having a lot of friends, including a girlfriend. He gets into fights with peers about once per year. He tries hard not to fight, as he tends to “blackout” and become physically out-of-control. He reported controlling his anger much better now. He sees a lot of his father in himself, which concerns him. Coping strategies include sleeping and listening to music. He is also passionate about sports, especially football. This year, he has been focusing on soccer and golf. Testing: Joseph transitioned appropriately to begin testing. His mood seemed positive, though he did not show much facial expression. He was pleasant and polite throughout testing. His speech was typical for age. His language expression and comprehension appeared generally age-appropriate. He asked for clarification when he was unsure of test instructions. He was cooperative with testing and seemed motivated to do well. He approached tasks with effort (as supported by effort measures). He was aware of failure on test items but coped well. He was interested in moving quickly through tasks (to get finished with testing sooner), but he did so without making errors. In general, testing progressed at an expected pace. For paper-and-pencil tasks, he used his right hand with adequate pencil control. The results of this evaluation are believed to be a valid reflection of Joseph’s current functioning. TEST RESULTS (see also appended test data page) Intelligence: Overall intellectual skills were very low for age. Verbal reasoning was relatively stronger and low-average, while visual reasoning was very low to low-average. Processing speed was low-average. Brief attention/working memory was very low. Academic Skills: Compared to others his age, single-word reading was average, but reading of text was overall very low, with low-average reading fluency and reading comprehension. Applied math reasoning was very low. Verbal/Language: Complex language expression was low-average to average. Visual Perception/Construction: Copying designs was extremely low to very low, with much poorer performance in copying a complex design; of note, he had significant difficulty planning and integrating the information and showed a haphazard approach. Yes Recognizing and completing patterns was very low to low-average. Constructing puzzles (either block puzzles or mental puzzles) was low-average. Attention/Executive: Brief attention/working memory was very low to low-average. Directed attention was average. Mental flexibility (or ability to shift attention back-and-forth) was variable, ranging from low-average to high-average. Inhibitory (impulse) control was extremely low. Verbal problem solving when given corrective feedback was very high for age. Speeded processing of visual material requiring a written component was-average to average. Verbal fluency (or ability to retrieve words quickly) was a notable strength and average to extremely high for age. In sharp contrast, rapid naming was extremely low. Parent ratings indicated significant attention problems and hyperactivity/impulsivity. Memory: Learning and recall of rote verbal information (a word list) was very low overall. However, immediate recall of the list and recall after a delay were both average. Recognition of the list using a yes/no format was also average. Learning and recall of visual material (abstract designs) was notably weaker. Immediate recall was extremely low; recall after a delay improved slightly but was still very low. Fine Motor: Fine motor speed and dexterity was extremely low for Joseph’s dominant right hand but average for his non-dominant hand. Emotional/Behavioral/Adaptive: Parent ratings indicated significant difficulties with atypical behaviors (e.g., has strange ideas), adapting to change, and completing daily living activities. Mild-to-moderate concerns (“at-risk” range) were noted for aggression, conduct problems, depression, social skills, leadership, and functional communication. Parent ratings of his adaptive behavior, or everyday living skills, was very low overall, with no particular strengths or weaknesses identified. SUMMARY & IMPRESSIONS Joseph Dicola is a 15-year, 1-month-old right-handed male with a chromosomal abnormality (2q13 deletion) and significant psychiatric history. Key Findings: Very low to low-average intelligence, slightly lower scores than past outpatient evaluations Relatively stronger verbal than visual skills, especially on memory tests Poor executive skills (inhibitory control, planning, organization, etc.) Low reading comprehension and applied math skills Adaptive skills in line with intelligence Joseph’s cognitive abilities are generally below age-expectation. That means, he has greater difficulty than peers in learning new information and skills and using that knowledge to figure out problems or situations. He particularly struggles with information that is visually-based (puzzles/patterns/designs), rather than language-based. He is much better at using his words to make sense of new information and come up with solutions. In fact, some of his strengths were verbal deductive reasoning and thinking of words quickly on cue. Compared to earlier evaluations (2004, 2010, 2012), Joseph’s profile of scores is generally lower. He has not kept up with peers in most areas of thinking. He continues to make developmental gains but at a slower pace. Although research is extremely limited, his particular genetic abnormality has been associated with developmental delays. Current test results are considered a valid reflection of his abilities, as his family reports he is the most emotionally stable he has been in many years. Results from his 2013 inpatient testing are of questionable validity. As such, his prior diagnosis ofModerate Intellectual Disability does not accurately reflect his true ability level. Instead, he shows mild impairment in cognitive and adaptive skills that, at this point, does not warrant diagnosis. However, he has benefited from related supports and interventions. In terms of his thinking, most concerning for Joseph are his executive deficits. He struggles to organize and manage the day-to-day demands of home and school. He has difficulty acting with purpose, meaning he lacks strategies on how to approach everyday problems and situations. Also, he clearly has trouble controlling his emotions and behavior and resisting impulses. Executive deficits are common in several psychiatric conditions, including ADHD and Bipolar Disorder. Given the limited information available about his particular genetic abnormality, it is difficult to determine what impact it has on such complex thinking skills. RECOMMENDATIONS Recommendations for Medical/Health Care: Continue to follow-up closely with Psychiatry for Joseph’s ongoing care. Joseph reported he does not like to talk about his mental well-being unless there is an acute problem. However, it is difficult to make strides in further developing his coping skills if they are only addressed in times of crisis. Therefore, re-start psychological therapy on a more regular basis so he can continue improving his coping strategies. Recommendations for School: IEP. Continue providing school supports through an IEP, given Joseph’s complex history. His family is encouraged to share this report with his school to revise his IEP as needed and aid in placement decisions. Classroom. He is likely to perform best in a classroom that is highly structured, has minimal distractions, and consistent routines. Provide attention accommodations and as much small-group or individual instruction as possible. Placement. Currently, Joseph is in a school setting with intensive, built-in behavior supports. As his behavior has become less aggressive/violent, he and his family have come to feel this setting is too restrictive and does not recognize his strengths or potential. His family reported considering the Discovery Program, and they are encouraged to learn more about that opportunity. Life Skills. Joseph struggles functionally to interact in the world appropriately. His educational team is urged to adjust their goals to include a focus on life skills. When he leaves high school, at the very least, he needs to have essential skills that would allow him to work and live as independently as possible. Transition Planning. Within his IEP, assist Joseph in identifying career goals and opportunities for job training. Based on his cognitive profile, traditional schooling is not optimal for him. Vocational/technical programs better suit his cognitive ability level and adaptive skills. With any program, is important the staff work with his IEP to provide him the best chance at success. Recommendations for Family/Home: Children like Joseph require clear, strong, immediate, and frequent feedback about their behavior. A clearly-stated system of positive and negative consequences for specific behaviors is important. Work on Joseph’s adaptive skills to help him feel more capable of taking care of himself. Focus on those skills that are needed for more independent living (e.g., basic cooking). Keep expectations realistic and focus on areas that he has already demonstrated some success. Break down tasks into smaller, more manageable steps. Model this process for Joseph so that he learns this strategy. As he gains experience, encourage him to come up with the list of steps on his own. For common tasks, create a checklist of the required steps, and post it in a highly visible place. Gradually increase his level of responsibility at home, with appropriate support from family members. Reduce distractions (e.g., no television viewing) when he is working on a task to limit the opportunities for him to be distracted. Also, allow for plenty of time for him to complete the task at his pace. Given Joseph’s functional impairment, he will struggle to care for himself independently. As he nears the age of majority (18 years old), the family is encouraged to discuss the range of possibilities, including guardianship/conservatorship/powers of attorney, and what is in his best interests. The Vocational/Educational (Voc Ed) Program at Cincinnati Children’s is another helpful resource for transition planning. Available to patients age 16 and up, it assists patients and their families with vocational, educational, training, and employment goals. The family can contact the program for more information (513-636-2516) to see if he is qualifies for services. Additional resource: Cincinnati Children’s Special Needs Resource Directory is a useful resource for additional information related to transition planning (www.cincinnatichildrens.org – search ‘special needs’). For more information about executive skills: Smart but Scattered Teens by Drs. Richard Guare and Peg Dawson and Colin Guare Executive Skills in Children and Adolescents: A Practical Guide to Assessment and Intervention by Drs. Peg Dawson and Richard Guare Boosting Executive Skills in the Classroom: A Practical Guide for Educators by Dr. Joyce Cooper-Kahn and Margaret Foster Recommendations for Follow-Up Evaluation: Re-evaluation should be based on Joseph’s needs (e.g., planning for adulthood) and considered again in 2 to 3 years. Earlier consultation is available should additional concerns or needs arise. Thank you for the opportunity to work with Joseph and his family. Please contact me (513-636-4336) with any questions or concerns. Melissa Gerstle, Ph.D. (This document was signed electronically on 10/28/2016.) Neuropsychologist Behavioral Medicine & Clinical Psychology Cincinnati Children’s Hospital Medical Center CC: Brian Kurtz, MD VIA In Basket Alan M. Wilimitis, D.O. VIA Facsimile: 937-667-8067 Guardian of Joseph Martin Dicola VIA MyChart DATA SHEET & TEST LIST Note: Only scores that are commonly used by clinical, counseling, and school psychologists are listed here, though the full list of tests follows. These scores are included as an appendix to a full evaluation report that integrates all findings, including clinical observations, interviews, and record review. Interpretation by anyone other than a licensed psychologist with relevant training may be misleading. WECHSLER INTELLIGENCE SCALE FOR CHILDREN- 5th Edition Composite Index SS Full Scale 74 General Ability 75 Verbal Comprehension 84 Visual Spatial 81 Fluid Reasoning 74 Working Memory 76 Processing Speed 83 Nonverbal 75 Cognitive Proficiency 76 Subtest Scaled Score Comprehension 9 Vocabulary 6 Similarities 8 Visual Puzzles 7 Block Design 6 Figure Weights 4 Matrix Reasoning 7 Picture Span 7 Digit Span - Sequencing 7 Digit Span - Backward 4 Digit Span - Forward 7 Digit Span 5 Symbol Search 6 Coding 8 BEERY - BUKTENICA TEST OF VISUAL MOTOR INTEGRATION- 6th Edition Subtest SS VMI 77 WECHSLER INDIVIDUAL ACHIEVEMENT TEST- 3rd Edition Subtest SS Word Reading 92 Math Problem Solving 75 WECHSLER INDIVIDUAL ACHIEVEMENT TEST- 3rd Edition - GRADE BASED Subtest SS Word Reading 92 Math Problem Solving 77 GRAY ORAL READING TEST - 5th Edition Composite Index SS Oral Reading Index 78 Subtest Scaled Score Comprehension 6 Fluency Composite 6 Reading Accuracy 7 Reading Rate 6 ADAPTIVE BEHAVIOR ASSESSMENT SYSTEM - 3rd Edition - Parent Form Composite Index SS General Adaptive Composite 70 Conceptual 71 Practical 71 Social 77 Subtest Skill Area Communication 6 Community 5 Academics 5 Home 5 Health 4 Leisure 6 Self Care 7 Self Direction 3 Social 4 Tests Administered: Beery Developmental Test of Visual-Motor Integration (VMI) California Verbal Learning Test - Children's Edition (CVLT-C) Delis-Kaplan Executive Function System (D-K EFS) - Color Word Interference Test - Trail Making Test - Verbal Fluency Test Gray Oral Reading Test – Fifth Edition (GORT-5) Grooved Pegboard NEPSY: A Developmental Neuropsychological Assessment - Second Edition (NEPSY-II) - Memory for Designs Rey-Osterrieth Complex Figure Test and Recognition Trial (RCFT) – Copy trial only Wechsler Individual Achievement Test - Third Edition (WIAT-III) - Word Reading - Math Problem Solving Wechsler Intelligence Scale for Children - Fifth Edition (WISC-V) Adaptive Behavior Assessment System - Second Edition - Parent (ABAS-III) Behavior Assessment System for Children - Third Edition, Parent Rating Scales (BASC-3, PRS) Behavior Rating Inventory of Executive Function - Parent Report

When you don't fit....

It’s been a hot minute since I last posted. I find it difficult to keep up with writing while trying to balance everything else. But over the last couple of weeks I have found us spinning into frustrating territory and hope that putting thoughts down will provide some rest to my weary mind. The question at hand, what do you do when you just don’t fit? Anyone who knows Joseph’s story knows that he is uniquely different. We have stumbled from mental health, to genetic abnormalities and organic brain injuries. Regardless of the cause for Joseph’s differences the struggle remains that he just doesn’t “fit” anywhere. This becomes more and more apparent as he gets older and has brought on new sets of challenges as we strive to find services and programing to help him be as successful as possible. I had a meeting last week to discuss summer programing for Joseph to start gaining some vocational skills in the hopes to help him gain employment. Now all the summer programs are minimal for someone his age (soon to be 16) and short in duration, lasting only a few weeks and a few hours Monday through Friday. Now that may be fine for most kids and maybe even kids with disabilities. However, given Joseph’s special learning needs it takes repeated instruction over long periods of time to gain a fraction of a skill needed to be employable. Now as it was explained to me the programing that would most benefit Joseph simply doesn’t exist. There is not one on one or small group programing. There isn’t programing that would extend for a full year or even the whole summer. And because of funding and constraints of policies for the program they would most likely be unable to accommodate providing services that would be beneficial to Joseph. Well great! He doesn’t have the ability to go get a job on his own but the program to help him do that can’t? Then there is the school. Anyone who has read this blog or had a conversation with me knows how the well the school has helped provide Joseph with appropriate accommodations…. NOT. We have had advocates, facilitation and even gone to State Board of Education, only to have a beautifully written IEP that isn’t followed. I am so tired of fighting with these people who show us every day in every way that they simply don’t care about my son because he is nothing but a behavior problem with an ED label. Joseph came home today and told me “ Ms. ******, says there is nothing wrong with my reading, I read at grade level.” Now most parents would find that good news. However, Joseph just had a comprehensive neuropsych evaluation at Cincinnati children’s for his 3 year ETR which stated “ Compared to others his age, single-word reading was average, but reading of text was overall very low with low average fluency and reading comprehension”. Now trust me when I say Joseph has not made academic progress to grade level fluency in 3 months since this evaluation was done. Joseph has not even made academic progress in 4 years. So telling a child of low to low average intelligence that he is at grade level and can do grade level work does not help him. It does not help him when he cannot do the tasks because they are above his level of understanding. It does not help him set realistic goals for his future abilities. It does not help us in always appearing to be the “bad guys” who think “ he’s stupid”, because the teachers say he can do it. The school looks at Joseph and has said on multiple occasions that when he “can’t” do the work it’s because he “chooses” not to. Well I am sorry but being low to low average intelligence isn’t a choice. The issue with all of this is that it isn’t benefiting Joseph. He needs program that understands his executive functioning deficits and helps him develop skills to improve some of that. He needs a program that helps him with functional literacy, like budgeting, cooking, independent living skills. The problem is as far as I know a program like that either doesn’t exist or Joseph simply doesn’t “fit” into the box needed for that programing. I feel so lost and scared for my son. He will be 16 in July and in 2 short years will legally be an adult. The trouble with Joseph is he is high enough functioning to want all the things a “normal” teenager/young adult wants but, not high enough functioning to do a lot of it independently. I am not sure how to be able to help him with any of it. I am not sure how to provide him with the tools he needs. I am so frustrated with having to fight all the time for help that doesn’t exist because he doesn’t fit into the box.