The end... and thank you

This post has taken me a long time to write. It has taken me a long time to process through everything that has happened since my last post in 2017. This will probably be the end of this blog as chronicling the ongoing struggles with our son and the lasting effect it has had is just too much. Some of this may be very difficult for people to read and I know there are some that will judge the things that I have to say. But, at this point I say…judge away. I am tired. I am tired of fighting. I am tired of heartbreak. I am tired of disappointment. This does not mean I do not love my son. This means at this point we have done everything we possibly could to provide him with the opportunity to have a happy and successful life. He continues to make choices that lead him to nowhere and cause him nothing but misfortune. So as we approach his 18th birthday we have had to draw a line in the sand and stand firm that no matter how much we love him and no matter how much we don’t want anything bad for him we cannot continue to watch him self destruct or continue to have his choices rip this family apart. For the better part of the last year and half Joseph has decided he didn’t need to take his medications anymore. For those of you who know Joseph you know that even when medicated things are difficult. We have explored the option of long acting injectable antipsychotics to at least attempt to make compliance a little better. However, insurance will not cover any of those currently on the market and the out of pocket costs are outrageous. Last year we were informed that Joseph was going to be a father. Not exactly something we initially celebrated. But we had to accept that this was going to happen regardless of what we thought, so we rallied the troops to find every possible way to support him, his girlfriend, and their son. When Liam came into this world, we fell in love with him instantly. We wanted nothing more to surround this little boy with love, support, and stability. And we did. We did for six months. Not just him but Joey and his girlfriend. Often putting aside our own needs and our other family members to do so. We did all this just to watch it come to an inevitable and ugly end. As of April 5th, 2019, we have not had any contact with Liam and neither has Joseph. We met with a lawyer and certainly can fight to see him. However, after much discussion and soul searching, we realized this would be a financial and emotional rabbit hole we could not venture down. Judge away people, judge away. First, how could we fight for Joseph’s rights when he is not and has not been doing anything to show himself as a stable competent parent. More to come on that later. Second, even if we did gain rights we would forever be tied to his girlfriend and her family. They are destructive people, and this would never improve. So, we put ourselves in the position of waiting for the next time they don’t get their way or upset, and they pull Liam from us again. The loss of him in our lives is agonizing but we know would be significantly worse if even more time passed with him in our lives and to lose him again. And yes, we could fight and keep fighting but at what cost to our marriage, our other children? Some of you may say you fight anyway. But as I said at the beginning, I am tired, and I want some peace in my life. Now, if Joseph gets his shit together and stops going to down a path of self-destruction, we would gladly aid him but at this time I do not see this happening. Other than Joseph stopping his prescribed medications he has made several other caustic choices. At the beginning of November, he and his girlfriend had an argument. I was home working and tried to intervene in the quickly escalating situation. I unfortunately did not act fast enough. Joseph was enraged and volatile. I had to make a choice to secure the safety of Liam and Joseph’s girlfriend. I rushed them into our bedroom (the only room with a lock) and called for the authorities to come. While on the phone with dispatch Joseph took every bottle of medication we had. This included nearly full bottles of his antipsychotic, ADD medication, antidepressant, Tylenol, ibuprofen and several other medications. By the time the authorities and EMS arrived he was on the floor of the bathroom gasping for air and virtually unresponsive. Meanwhile, his girlfriend and 2-month-old son were feet away in my bedroom. She was hysterical and I just kept saying to her “it’s ok, everything is ok”. I am truly grateful for my dear friend Melissa who came to my aid with no questions asked to sit with Joseph’s girlfriend and the baby until my husband could get home while I went to the hospital. They stabilized him and transferred him to Cincinnati Children’s for medical monitoring over the next several days to ensure his kidneys, liver and heart recovered before transferring him into inpatient psych. Did I mention that 4 days after this incident I had to go into major surgery for myself? Oh yeah, no stress at all. Anyway, Joseph did recover physically but I know he hasn’t ever recovered mentally. Sure, there have been bright spots at times. He secured a job on his own and was working like crazy. He seemed focused and goal oriented and all of us thought oh good this is it we’ve turned a corner. But that lasted about 3 weeks and when it ended, we were in worse shape. Joseph virtually stopped participating at school. A program we fought to get him into. He was suspended several times. He refused to find work, began hanging out with other troubled kids. He has been disappearing for days on end only to show up at home smelling like a homeless person. When he is home, he treats everyone like garbage and then disappears again. We made arrangements with the school district to allow him to complete his coursework online. He is only a few courses short of credits for graduation. I worked with his grandparents (who are all teachers) on a schedule to work with him to complete these courses. He could have his high-school diploma by July if he just sat down and did the work. But despite all the accommodations and support he continued to run around, disappear for days, and do god only knows what else. He skipped out on court order community service and violated a court order to attend and participate in school. So, after several weeks his probation officer filed charges and off to court we went. The magistrate saw through his excuses and sent him to the detention center, and I am glad. I mean I am not I am not happy that this is where he is but given the alternative, I know he is safe, we know where he is, and he has no choice but to do his schoolwork. Believe it or not this is the abridged version of events. This has been a long and difficult year. I am so thankful for the friends in my life who have been a support and presence through all of this. I am grateful for my husband who has endured this mountain with me. In the end we love our son and will forever be here for him when he wants to make changes in his life. But until than we must distance ourselves and hope that one day, he wants a different life than the path he is on.

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.

The rhetorical question...

So…. On Friday we headed back down to Cincinnati Children’s for an emergency appointment with Joseph’s psychiatrist. Joseph has decompensated so much again I found myself in familiar but uncomfortable surroundings. We began explaining Joseph’s steady decline which has been followed by a cliff dive off the edge. We go through the events of the past several months, the current situation, followed by our observations on how he is functioning and it all seems pretty bleak. Somewhere in the middle of the emotional vomit I am conveying to the physician I stop. I stop and say to him, “I don’t even know why we are here; I don’t even know what you are really going to be able to do about any of this.” I said that not because I don’t have faith in his abilities as a clinician, because quite frankly he is fantastic, but more or less this isn’t a true psychiatric problem. I wish it were as simple as tweak a few medications and poof he would stabilize but as many of you may know it just doesn’t work that way with Joseph. He is complicated and complex, and honestly doesn’t have a “chemical imbalance” that needs corrected. The poor doctor just looked for a minute and paused before simply saying, “We can work to try and slow some of the symptoms but Joseph will always need strict constant structure because his cognitive problems do not allow him to process through situations and interactions like others.” My ability to stay composed after this was nonexistent. I mean what he said I knew, this is not news to me. But, I guess in even the smallest recesses of my brain I had hoped there would be some level of functioning that will allow him to be independent. There still may be… but the glimmer of hope has shrunk yet again. Without knowing if anything will help we did adjust Joseph’s medications….Hoping that this would even things out. I left the appointment with a sinking feeling in my stomach that we were headed down a path we have already been on. Try this med, oh that’s not working, well let’s add this, increase that… I know I won’t let it get to where we were before but as a parent you are just so desperate to help your child you would do anything at the chance it could help. Only time will tell…. Meanwhile there is the never ending battle with his school. In preparation we had an appointment again at Cincinnati Children’s with the clinical psychologist to do his three year testing. An hour and forty-five minutes in the car to meet with this person. We came prepared as always with a book of information that is the condensed version of his medical and school records. We began the appointment providing information and expressing our needs for testing and concerns. Toward the end of the appointment the clinician looked dumbfounded and she proceeded to say “I think a neuropsychologist would be best equipped to provide the testing to Joseph, I’ll make the referral.” Great. Where I totally agree he would most likely benefit from that particular type of clinician testing him all I could think is… we don’t have time for this! Another referral, another insurance battle, another appointment scheduled months in the future. Luckily, one bit of cosmic intervention occurred and I received a phone call today for Joseph’s referral. We have an appointment tomorrow. To top off that day off splendidness I received a digital download of Joseph’s medical records from Cincinnati. I don’t know what compelled me to think that it would have been a good idea to review them now but nevertheless I did. .. 9/2013: The treatment team concluded Joey's outbursts arise from significant cognitive deficits for affect laden issues requiring a multidisciplinary approach with a specific and individualized plan for Joey. He appears to be of below average intelligence with fair recent and remote memory without ability to recall details. Despite Joey having a biologic predisposition for mental illness based on his family history, his current difficulties are most likely secondary to his neurocognitive/neuropsychological deficits well documented in prior neuropsychological testing. The end result of these deficits are severe behavioral disturbances due to his developmental disabilities which are characterized by severe neuropsychological deficits. From a psychosocial and educational standpoint, Joey would benefit from multiple services to help him navigate daily activities of living successfully. Without interventions developed specifically for Joey's needs, his deficits will continue to disrupt daily life (both at home and outside the home), and his ability to learn. 10/2013: Information regarding Joseph's cognitive functioning suggests he meets DSM-5 diagnostic criteria for an Intellectual Disability, Moderate. Information obtained through chart review reveals Joseph is having significant difficulties with emotional and behavioral functioning that, may in part, be attributed to his Moderate Intellectual Disability 11/2013: In addition, his cognitive limitations per neuropsychological testing limit his ability to navigate daily life as he may often misinterpret cues from others or know how to navigate problems in a successful and sequential pattern leading to outbursts of aggression. Is anyone else seeing a pattern here? I could go on but I am sure you get the point. The worst part of all of it is that all the documentation was/is right here. Unfortunately, just like everything with Joseph we are only able to analyze everything later. We are always too caught up in the moment of what is going on to look at the big picture. We should’ve tried to reclassify his special education classification sooner. But, would that have made a difference? Is there actually anywhere in anything in this world that my son will be able to fit into to actually get the skills and help he needs? How are we going to do this? How are we going to be able to keep him safe and yet allow him to have independence? How is he ever going to be able to function in this world? How will we ever be able to explain to him that he has limitations? Well I guess I take the words of Margaret Thatcher, “You may have to fight a battle more than once to win it.” And fight I will.

Prozac, 2Q13 deletions, and other such stuff

With so much constantly going on in our lives it’s hard to even know how to keep up with this. With Joseph life is certainly one day at a time. The most difficult part of it is one day you may be thinking…”ok we got this…it’s going to be fine” and the next day… everything is on fire and you are in a scene from the walking dead and are just trying to make sense of the chaos that is engulfing you. One may say that you just have to live in the good moments but when your world is crashing down and you are the person that needs to hold it all together it is very difficult. In May after an extremely difficult and troubling year for Joseph just when we thought “ok we are through the worst” things got worse. Joseph slipped into such a deep depression we had serious concerns that he may hurt himself and had him admitted to Cincinnati Children’s Hospital for suicidal ideation. All I could think was I cannot believe we are back here. Not that the hospital isn’t amazing and the care he receives is questionable but more or less that we had been moving backward and now we were in dangerous waters that were all too familiar. Were we losing him again? Are we ever going to really have any sense of normalcy? Why can I as a parent just not help my child? It was gut wrenching and he was so angry with me. But what choice did I have? There was the real fear of finding my son dead. So there we were…. Familiar but not. Despite the fact that he has a psychiatrist at Children’s we had a different physician to “educate” about the complexities of my son. Let me tell you how utterly exhausting it is trying to explain Joseph and his “condition” to every new physician who comes into our lives. The doctor sat and listened as we tried to explain. After the very long conversation was over he looked at us and said I think we should try Joseph on Prozac. Ugh, oh my god! I guess I don’t know what I expected we had to do something but on the same token all I could think was… another pill… another med? What was going to make any of this any more successful than any of the other times we went down the path of pharmaceuticals? What’s to say this wouldn’t make things worse? After all the medications usually did. Am I making the right choice? Is this what I should do? But of course when the insurance clock is ticking on an inpatient psychiatric stay you don’t have a whole lot of time to ponder such things and I signed consent to start him on the medication and only prayed that this wouldn’t be a disaster. When the hospital was ready to discharge Joseph a few days later we had a meeting with the team to discuss strategies to help Joseph. I went to the meeting because that is what you have to do but in my mind I thought are you really going to tell any of us anything we don’t already know? Well the answer was yes. The psychiatrist came to the meeting to discuss Joseph and clearly he had been pondering he case while Joseph was there. He began to discuss the results of Joseph’s genetic testing from three years ago. It took me a few minutes to have my brain switch gears while I listened to him talk. Several years ago when Joseph had the testing it was found he had interstitial deletion of 127kb of DNA from the long arm of chromosome 2 (2q13). Ok….we knew this but it was determined at that time that they did not know the clinical significance of such a deletion. But thanks to the advancement in genetic research the psychiatrist found two…yes 2 whole studies done in the last few years that looked at children with a 2q13 deletion. How very fascinating right? No. We have known that Joseph has abnormalities that have not been explained and we know the challenges that they pose. We also know that there is Nothing… I repeat Nothing that can be done about it. We search for answers for what seemed like an eternity for Joseph and we now know that he has an abnormality but we resounded ourselves into knowing that it is what it is and that all we can do is try to help him. Now some may say that the expansion of genetic studies may help in providing information but in the end it doesn’t change anything, there is no cure, no pill, no surgery to fix it. On top of all that the study reports that there has only been 27 identified case of a 2q13 deletion in the world. Fanfreakingtastic! So now they have identified a few other people with this but even the study itself cannot provide any significant information that is meaningful in how to help a person with this abnormality. It is such a small population it doesn’t even have a name… there is no such and such disorder. And if you thought it was difficult explaining an organic brain injury to someone, try explaining a deletion of 127kb of DNA on the long arm of chromosome 2. In the end it doesn’t make much of difference. I know the psychiatrist was being helpful and was truly interested in finding answers but all it did was put me in information overload and not change how we help Joseph. We finished the school year in an ungraceful fashion and tried to focus on the summer. This too had its many ups and downs. Joseph was turning 15 and reality of his level of functioning was hitting me more and more. This really came to a head when we had a weekend with family and saw Joseph interacting with similar aged kids for an extended amount of time. To top it off Joseph’s mood improved on the Prozac but it shifted his impulsivity and hyperactivity into high gear. It was exhausting to spend any length of time with him having the same conversations over and over, not being able to follow his train of thoughts or make heads or tails of what we were talking about most of the time because he couldn’t finish saying one thought before he started talking about another. The fixations on certain things became increasingly worse and as the end of summer approached and school was beginning to start the panic came. Do we leave him on the Prozac which is making the depression better but everything else worse or do we take him off the Prozac and risk the depression returning? Without going too deeply into the details the decision to take him off the Prozac was made today. His inhibitions and lack of impulse control has thrown us into another survival mode situation. This too shall pass and we will be ready for the next challenge. I just fear he is getting older and there is less and less I can do to protect or help him in these situations. We are only a few short years from him being an adult in terms of age and then what will we do? I suppose we will figure it out, we usually do. But for now I must try to quiet my mind of all the worries and look at tomorrow to be another day to try again.

He looks normal

It has been a very long time since I have posted and recently I was flooded with facebook memories to look back on and there they were the beginning of my blog. I realize with so much time having past it would be difficult to catch up on all that has happened. In brief summary Joseph is still at home with us, CSB is no longer involved, and we have made some progress with Joseph. That being said with the progress we have made comes new challenges. Joseph is now almost 15 years old and you can imagine that even "typical" 15 year olds are hard to deal with at times... multiple that by a million and you get a rough estimate of how hard it is to deal with raging hormones in a already compromised brain. This year has been exceptionally difficult. Joseph had transitioned last year to the Junior High in the resource room and all appeared to be going well. Than at the beginning of this year a teacher who has been involved in Joseph's case for years left the district and replaced with someone who to say the least did not even begin or try to understand the nature of Joseph's disability. After much struggling and nearly having the bottom fall out on us we had to move Joseph back to the opportunity school, as we felt that was the better placement for him.... or at least we thought Now I try to give people the benefit of the doubt that Joseph's disability can be hard to understand. He looks normal. There is no outward sign of his disability which makes it hard. To complicate things Joseph's disability affects his frontal lobe which means it affects his behavior, processing,emotional regulation, and executive functioning. There are a lot of disabilities that can cause problems such as these but a lot of those have physical manifestations of one type or another that "help" people "identify" that a person has special needs. Again that is not the case with Joseph. So in short you have a "typical" looking 15 year old kid with behavior problems.... what do people think....he's a punk kid. It is infuriating to sit in meeting after meeting with "professionals" who do not listen to what I or the clinical experts at Cincinnati Children's are saying. He does not have a conduct disorder, he is not a sociopath, he is a kid with a brain injury! By all means this does not mean that we excuse Joseph from bad behavior. No oh no. I above all else continue to hold him accountable for his actions because after YEARS of repetitive intervention he may improve. What this does mean is that there is a way to go about behavior modification with Joseph that would be different than other "typical" kids. Believe me when I say I understand how frustrating and exhausting this can be. But it is what it is and expecting things from him that are not within his ability to do or understand will only lead to more failure and frustration for everyone involved. I often ask myself, If the people who are charged with helping Joseph do not understand or have any desire to understand the nature of his disability how are they truly going to help him. I sat in a meeting today where it was repeatedly said that I need to hold him accountable for his actions and behaviors. All I could think was "right lady because I just let him get away with whatever he wants". I feel as though because Joseph has no physical manifestation of his disability people think I'm making it up or using it as an excuse for his behavior. When in reality I do nothing but say "this is in no way to excuse his behavior". My explanation of his disability is to educate you on how to help him not excuse him. I will say as bad as it sounds Joseph's behavior is also all relative to me. Where Joseph's behavior of being disrespectful or aloof is annoying and frustrating, there is a part of me that thinks well he's not destroying property and the police were not called, gee that is some progress. With the "progress" that we have had I sincerely know that the battle is not over and will most likely continue to get harder as he gets older. For with every passing year he gets older, people expect more maturity and better behavior and the reality of it is he may not be capable. Also with every passing year there are new people to educate and inform about Joseph and his needs. Moral of this story " Do not judge my story by the chapter you walked in on" or " Never judge someone without knowing the whole story. You may think you understand but you don't. I hope to get back to writing. I feel it is much better to have these thoughts on paper than rolling around in my head. Thank you everyone who has took the time to read this and those who have been the ongoing support in our lives..... On to the next battle.

The fight continues....

So Joseph had his appointment with the new psychiatrists in Cincinnati they agreed it was reasonable to start tapering Joseph off his medications. We started with depakote slowly working things down. A week and a half into it Joey started having "hallucinations". We followed the crisis plan we had in place and took him to the ER I worked at for evaluation. I am so thankful for the amazing people I work with who worked diligently to get him transferred to Cincinnati. That evening he was sent to the inpatient psychiatric unit. Joseph was there for 5 days and in 5 days the physicians did more than anyone had in 5 years. The psychiatrist who was overseeing Joeys care took Joey off all his psychiatric medications. It’s the greatest feeling ever to finally have someone listen. Joey is no better and no worse than he was on all the medications. Just goes to show that again the physicians should have listened years ago. It saddens me at the same time because I know as well that this truly is his baseline functioning. We have had to continue to fight for any kid of help for Joseph and honestly the blows just keep coming. We were turned down for DD services. I am so sick and tired of all of this. He doesn’t fit in some nice little box that every agency wants him to fit into in order to give him services. Joey doesn’t have a specific diagnosis and mind you after years of being diagnosed everything I certainly don’t want another label on him just for labels sake. The problem is without a label no one will help. It is exhausting! Whether he is mentally ill or brain damaged he needs help, we need help. I know the prognosis for Joseph is not good but that doesn’t mean that we don’t keep trying to get him services to help him function in society as much as possible. I don’t understand why it has to be so complicated. As if all that wasn’t enough Joseph had a major blow up several weeks ago. We were headed home after picking up Max. We were on the interstate when Joey asked me if he could get a tattoo. I asked if he meant a temporary tattoo or a real one. He said he wanted a real one. I told him that 12 year olds are not allowed to get real tattoos. That’s when it all started to go wrong. He started ripping things apart in the car and throwing things out the window; garage door opener, knobs to the radio, miscellaneous contents of my purse. I got on the phone with 911 and began pulling the car over. That’s when Joseph unleashed on me. He repeatedly struck me in the head with his fists. He grabbed at objects in the car and hit me with those, broke my glasses in half. At one point, one brief moment of clarity I believe Joey had in the middle of it all he became suicidal. Screaming at the top of his lungs “I want to die!” and trying to run out into the traffic of the interstate. It took 15 minutes for highway patrol to arrive, 15 minutes of an onslaught of an assault, 15 minutes of being completely terrified I was going to see my son die in front of me. When highway patrol got there it was a mess. The officers were very nice but how many times do you think a highway patrolman deals with domestic violence from a mentally ill kid? After much conversation the officers transported Joey to the detention center. Joseph had court the next day. It was terrible. First the court was trying to close out some of his old cases. When a kid admits to a charge in court they have to describe the details of the crime they are admitting to. Well most of these incidents were so old Joseph couldn’t even remember what happened. At the end of it all he said to the court with tears in his eyes, I want to go back to detention, I can’t control myself and I don’t want to hurt anyone. The court ordered him back to detention for the time being and a whole series of events got set into motion. Everyone was standing around trying to figure out what to do. Probation, children’s services, his advocate no one knew what they should do and everyone had a different interpretation of what was going on. I simply wondered that since everyone had a different idea why not all get together and in a room and have a conversation. It was agreed that we would all do so. Over the course of that weekend I worked. I will have a side bar at this time saying I appreciate everyone’s concern for our safety and I have concerns as well but I am entirely sick of judgment from people who think this should be a simple fix, just let Joey go. I had a conversation with someone at work that I respect and consider my friend. I know or at least hope this person had no malicious intent. The conversation basically focused on the fact that I sacrifice everything for Joseph and he will never get better and I need to let him go and focus on my other kids and husband. This person said, “You already don’t have one son living with you and that’s a choice you made, how do you think Christian feels that you picked his brother over him?” Well great, as if I don’t have enough doubt in my mind. I called my husband and was almost inconsolable that I am screwing everyone up. Paul (being the amazing person he is) said so if you gave up Joey for Christian you’d be a better parent? I look at it this way, my son Joseph is sick. He is 12 years old. He has no ability to advocate for himself. This is a child who has no control over his actions but has deep remorse for all that has happened. I will not give up on him. This is not an easy road; this is a road that is filled with heart ache and difficult discussions but this is our life. If people can’t understand or don’t want to support my choices than they can stay out of it. Anyway I will get off my soap box. The following Monday we had the BIG meeting, Probation officer and his boss, Child services caseworker and his boss, CASA and her boss and than me. In this round table discussion one thing became very clear, child services are not our friend and my caseworker’s boss has a real attitude problem. She communicated at the meeting that children’s services have already provided several services to our family and at this point feels they will not provided anything else. I simple looked at her and said “If you have done all you can do and have nothing else to offer than why are you still involved.” I don’t think that got me any brownie points. The probation department pretty much ran the meeting and took control over everything. They stated they would be doing whatever they can to provide services to us and Joey. It was decided that in order for everyone to get on the same page they all needed to hear what the doctors had to say at the same time. That Thursday we would all travel to Cincinnati to see the doctors. Thursday Joseph’s probation officer, CASA, caseworker, my husband, Joey and I all took a van to Cincinnati. What a ride that was. Joseph was going about 100 mph. I couldn’t tell if it was because he was out of detention or if he was manic. Joseph was describing this movie that they had watched in school at the detention center. Joey described everything in great detail. The very interesting thing is that no such movie was ever shown. Once in Cincinnati everyone sat at a table and had a discussion about Joseph. The doctors feel Joseph has IED (intermittent explosive disorder) and neurocognitive deficits of unknown extent. The physicians were very careful not to get ahead of themselves in diagnosis and labeling. After much conversation it was determined the best scenario would be for Joseph to be directly admitted to Cincinnati Children’s. There were no available beds on the unit at that time so we had to wait. We waited, one week for a bed to come available. In all the time we waited more prying and more hands in the cookie jar trying to say what is right for Joey. I am beyond frustrated, there are too many people involved and most either don’t know what to do or are not willing to do anything because they have already done all they can do. I don’t want to loose my son; I am worried for safety of everyone, including Joey. I don’t want him warehoused, shoved off someplace for the sake of having him someplace. I am truly concerned about Joseph becoming “institutionalized.” He seems at peace in the hospital. I think no matter how we try at home for it to be structured, it can’t be as structured as a hospital and I know Joey truly fears hurting one of us too. I am tired of everyone pushing for answers we might not have for years and years. I guess we shall see how it all plays out this time. I just don’t feel it should be as difficult as it is to get help without being judged or having to jump through a million hoops. I do feel judged, I feel judged every time someone new comes into the picture. I feel I have to show that we are truly a family who cares and loves their son. The whole situation makes my head spin honestly. I am not sure where this is going to lead but if anyone thinks they are going to shove my son away they have a fight cut out for them. Again I will certainly try to keep things better updated. I appreciate all the support from everyone.

Here we are....

It's been a long time and much has happened. After the previous entry and much dancing with the bureaucracy that is all the agencies involved in our lives we were able to extend Joesph's stay a short time at the facility. We moved into our new home and got settled as best we could to be able to have Joseph come home.
 Needless to say I nearly lost my sanity during the process. Joseph came home for good but the battle has not stopped. We settled him in, attending the ymca summer camp and having a routine at home. We continued to fight with child support enforcement to forgive our past child support since we were reassuming the costs associated with his care and just having him, this is still a battle we are fighting. Honestly by the time it is figured out we will have paid it all off anyway. But all that is some of the smallest in worries compared to everything else.
Child services had to go to court to return him home because him biological father wouldn't sign the agreed entry, it didn't make a difference but just caused the process to be dragged out longer than necessary. We couldn't find a respite worker to work with us because the services come from department of developmental disabilities and even though Joey is low functioning with an IQ of 75 he is too high functioning for services. We again were denied for social security because we exceed the income criteria but certainly aren't making enough to always be able to afford everything he needs. Is anyone seeing a pattern here? Its the never ending grey area our family lives in. So we continue to fight for services as much as we can.

Now since Joey came home I continued to hope we were transitioning ok. I knew we would have some bumps but I was not prepared for all that was going to happen.

Meetings, appointments on and on trying to have everything in place for Joseph. On a day to day basis he was doing ok. But slowly it started to wear down. Joey might be 12 but he has the mentality of a 4 year old. He has no ability to entertain himself at all. So if you are not constantly paying attention or participating with him he gets frustrated. He started to have arguments over trivial things like taking showers or brushing teeth. Anything and everything he would argue about. Its exhausting. On 3 separate occasions we had to have the police to the house because he escalated and began breaking things in his room. Each time they would come out he would calm down for a minute and we would have yet again another court date. Exhausting. Nothing was going anywhere. There are so many people involved with Joey and yet nothing seems to happen. Now don't get me wrong I know the people involved work very hard including his case worker, but its the powers that be who make the decisions that take their sweet time because its not effecting their lives. Anyway, Joey has had one appointment with the new psychiatrist at cincinnati childrens which was several hours only to have them look at me bewildered at the end and telling me that they were going to look over everything and we would talk again in a couple of weeks. Now I didn't expect them to make huge changes right than and there but it would have been nice if they could've had a game plan. I guess we shall see at this next appointment.

With everything piling up I couldn't imagine anything else. Silly me I should know better by now. Paul had gone out of town and my dad and father in law were managing the kids for the weekend while I worked. Everything seemed to be going well, I hadn't gotten any phone calls.
I got home on Sunday and Joey asked to go play with his friends. Sure why not, I told him to be home at 9 and went about some house work I had to do. Joseph came in the door about 840 and from the second he stepped in the room I knew there was going to be a problem. Joseph has a very distinct look when things are going o be bad. I can never describe to anyone how it is but his eyes are vacant and he just grunts and screams. Joseph came at me pushing me into the door. I grabbed my phone and called 911 immediately knowing there was no way this was going to end well. Joseph punched me in the face and slammed the bathroom door shut. I could hear a commotion in the bathroom but as long as he was in there me and max were safe. Dispatch said police were on the way and hung up. Joseph came flying from the bathroom and at Max and I. I managed to get us into max's room hoping to wait it out. Joseph forced his way in the room and threw a old doorknob at max nearly hitting him. Joey had managed to get between max and I and I was terrified. Max tried to run at me and Joey grabbed his shirt throwing him to the ground. I manged to get hold of Joey and contain him. Max was crying and I looked him telling him " run max run."  Little max got up and ran. I lost my ability to hold Joey back anymore. I ran after Max to keep myself between him and Joey. Joey came running after us but luckily the police showed up at that time. Joey was subdued by an officer. While he was being calmed down another officer came to survey the damage. Joey had destroyed the bathroom and thrown his medications everywhere. The officers took pictures and my statement and than took Joey to detention. Max was not seriously hurt and I picked up the house. Jesus what is happening.

The next day we had court again. God I am so sick of court. His caseworker, lawyer, probation, and CASA were all there. Joseph admitted to the charges so we could get him on probation and he returned to detention until a safety plan could be put in place. After several long conversations with everyone my head was spinning. Again there is concern for safety and with that we start to have little choices if this continues to happen. I have been told PPLA is something, which means he goes back into child services custody for placement but there is no time limit like before. This is not a option as far as I am concerned. I mean  if we can't do it foster placement sure as hell isn't going to be able to, he'll bounce from place to place and not get what care he truly needs for his issues. What I believe needs to happen is he needs to be admitted into the hospital at cincinnati childrens for a medication wash. I don't know anymore if any of the medications are helping or if they are making things worse for him. Obviously he isn't stable. I mean what if we take him off medications and he gets better? Or he doesn't get worse than there is no point to the medications. Or there are other possibilities for medications that might be better. Just too many variables and I certainly don't want to make any decisions about Joey and our family without knowing there is no other options.
Now this seems simple enough but I can't get anyone to listen or step up and do it. His previous psychiatrist wanted nothing to do with it. He is just starting with new psychiatrists and they seem a bit overwhelmed with him. So I reached out to his neurologist to see if we could get anywhere because frankly we are running out of time and so now I wait. His neurologist reached out to the psychiatrist and I am simply waiting to hear what anyone has to say. In the meantime Joey is back home from detention and seems ok but I feel as though I am always holding my breath waiting and hoping nothing happens.

Well ladies and gentlemen thats the short version of the last several months. I will try to do better at updating but quite frankly I am exhausted most of the time from dealing with everything. I just hope at some point one of the many people involved will be able to see that we need to get Joey unmedicated and see what his baseline is. Thank you again for listening. Love you all.

We were almost there....

It's been a very long month for our family and I have not done my blogging duties keeping things updated. So since I am awake very early this am I feel it is appropriate to update everyone. Joseph was doing well and things were going along as planned. He had started the homeward bound path where he was spending 4 days a week with us and the other 3 at the facility.

It all started one day as I was heading into work. I got a phone call from the facility and it was Joseph, there had been an incident. Joseph was on the phone making little sense of the situation. Joseph had said somehow he had gotten ahold of broken glass and in a moment of rage and frustration cut his wrists. Now he did not cut deep enough to require immediate medical attention but he said to me in a very serious and desperate plea " Mom I need help, I can't control myself." I spoke with the family teacher at the house telling him I felt Joseph needed to go to his psychiatrist for crisis evaluation. The family teacher understood my concerns and called the administrators. To my horror I received a call back 5 minutes later telling me the administrator stated " If he is calm now there is no need to take him for evaluation." I made the decision for my sons well being at the moment to leave work and drive 2 hours and pick him up to take him in myself.
We got to the hospital and Joseph was clam throughout the situation. His psychiatrist made an emergency appointment for him that friday for evaluation. I was to say the least upset at the way I was treated by the crisis staff and ER, I am certainly not ill informed when it comes to the care of my son and I was talked to like I had an IQ of 50. But that is neither here nor there I guess. I took Joseph back to our home and breathed a sigh of relief that his psychiatrist would be seeing him soon. The following day I felt Joey on edge, what was going on in his little mind was a mystery but soon it would all boil over.

That evening I told Joseph he needed to shower. He said to me he wouldn't until I had come in from outside. I walked into the house and simply said "ok I'm inside time to shower." That is when it all fell apart. It all happened so quickly I couldn't even tell you specifically what happened. He came around the kitchen counter and started pushing me, screaming and grunting. I tried to calm him but I could see he was already gone. He reached for things and began throwing items. I shielded max from the onslaught of items. I knew I wasn't going to be able to get control of thee situation so as I shuffled max into our bedroom and closed the door to keep him away from danger I called 911. Flashbacks of memories long since buried I tried to remain calm and explain the situation. Joseph got a hold of a sharp tweezer like object and ran at me. I was able to avoid injury but he was in full meltdown mode. Luckily Wayne was there and was able to get Joseph on the ground. The police arrived a moment later and as they walked in the home and wayne let go of Joey he took a swing at Wayne. The police handcuffed him and he began to calm down. Max had escaped from the bedroom at this point and ran up to where Joey was saying " ok? Joey, Joey ok?" It was depressing. I tried to the best of my ability to explain the complicated situation with Joseph and was very lucky to have an understanding officer. They transported Joseph to the hospital for evaluation and again life began complicated. With so many people involved, Marsh had to be notified and refused at that time to have him come home if he was discharged, CSB had to be called and because it was late we only get an on call caseworker and not the person we have worked with for almost 2 years, and of course the hospital and psychiatrists. What a mess but after several hours Joseph was admitted to the hospital. I couldn't believe we were back in the hospital! I knew it was the right choice but really at this point in treatment.

Four days he stayed and no changes to medication or word from the psychiatrist. He did however seem to be better for whatever thats worth. I thought its been several months since a big incident thats ok. We know things won't be smooth always but its over now and we can move forward. Of course this brought Joseph back in front of the courts again and the case will be held open again for monitoring but the worst had passed or at least I thought.

The next home visit was uneventful and all appeared to be returning to normal. It was going to be an exciting time for the family, Christian was home for the summer and everyone could finally be together. I thought all would be well but I should have known the circumstances that we put everyone together in was not going to turn out well and it didn't.

I was at work again at the end of my shift. My father had Joseph, Christian and max at his house, the first time Christian and Joey had seen each other in almost a year. I was getting ready to give report when I get a call. The first words I hear are " the police are here." My father proceeds to put the police officer on who tells me there is significant property damage and Joseph had pushed the 2 year old against the wall. I shut off... the officer kept talking but nothing was registering as I told the on coming nurse I had to go. After much time there were several variations of what happened but to the best of our ability here is as close as we will get to the truth. Joseph and Christian were walking back from the park together and Joseph had told Christian he liked his shoes and how it must be nice to get new stuff all the time. Christian responded by saying " I have been away from my family for 2 years and it's all your fault mother fucker." Probably not the best response but truthful in Christians mind. Well this very statement set forth a series of events that would change the course of treatment for Joseph. Joseph went into a rage, broke Christians headphones and mp3 player. My dad heard Christian screaming from the front of the house to come out and see Joseph in throws of storm that couldn't be stopped. Joseph screamed at max, took away his sippy cup and pushed him into the wall. Destroyed several items in the home. Christian was able to get max upstairs and into a room where he locked the door till all was safe. When I got to the house it looked as though a crazed person had torn the place apart. The officer on scene was the same we had dealt with the time before. Joseph was already in the police car and the trouble with so many involved was already becoming apparent. Joseph went to the hospital again only this time his psychiatrist didn't admit him. He went back to the facility that night. Again this put a chain of events into motion that left my head spinning.

The facility stated they were discharging him on the 25th of June regardless but there was obvious concern for safety given the last episode. Our options were to place him in another facility. After long meetings and much discussion I didn't feel this was what we should do. Our neurologist made it pretty clear that Joey's psych issues were secondary to his neurological disorder. Taking that in I don't feel that another psych facility was really going to do him any good and if anything it would simply cause more harm. I am very blessed to have the case worker and CASA that we have for our family who are on our side and agree. With that being said they have fought to extend Joey at Marsh for a brief time and are working to get him a respite worker for when he returns home.

I know that despite concerns I have I want Joseph back with us. I want to be able to take of him and continue to advocate. I am thinking we look into him seeing a psychiatrist at cincinnati childrens to coordinate care with his neurologist. I know that again I see him deteriorating cognitively. I think his decline became even more apparent to me after my mom came out. Seeing him through the eyes of someone who hasn't seen him in a year made my heart break all over. Our neurologist said in his last email that

 " At this point the 3 main possibilities are

 1.     there is a progressive, degenerative condition that explains his problems

2.    he started out with an undiagnosed genetic problem that is not progressive/degenerative but which makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications

3.   he developed a problem in early childhood, which is as of yet undiagnosed, which caused some regression and then subsequently this makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications."

I know at this point all we can do is wait. Our CASA is looking into other options for treatment as well. I know I just want him home. 

A long and painful process

So after the disappointment in the ER at Cincinnati Childrens the anticipation of the neurologist appointment was weighing on all of us. After the first few minutes I knew that it was going to be different than every other experience we had ever had. We had a real conversation with a doctor who listened. The first step for the neurologist in trying to determine what was going on was to get an MRI and run some chromosomal tests. The blood work was taken right in the office at that time. I was both shocked and angry that this test required nothing special at all, it could have been done years ago. The MRI needed to be scheduled for another day as Joey would require sedation, a fact I knew would be needed but still worried me. We scheduled the tests and I continued to be amazed at the staff. The RN at the MRI facility actually asked me how I was doing with everything. The day of the appointment a child life specialist was there to help Joseph with the process and even bought him a football for being so brave. He did well with the whole procedure it was probably more difficult on me than him.

The long wait. It seemed like months but in all reality was only a few days before we heard from the neurologist. I of course was at work and unable to speak over the phone when the doctor personally called me, again something unheard of for us. He sent a initial email that stated

Hi Mrs. Dicola,

I tried calling you but there you were not in. I left a message. I hope email is OK. The MRI did not point toward a specific diagnosis. I do think there is some atrophy – some unexpected “smallness” of the thinking part of the brain. This was what the CT showed. Our neuroradiologist, who is very experienced at looking for rare diseases, did not think that the pattern was a typical result for conditions causing the brain to deteriorate or degenerate. I agree it is not typical and certainly it did not show us any of a number of classic findings for rare diseases that cause severe behavioral disturbances, tremors, etc. Even if we had an MRI from when he was 2-3 years old for comparison and if that prior MRI were completely normal with no suggestion of shrinkage, we would not have a specific diagnosis at this point. There just aren’t any changes that are specific for a particular diagnosis and, fortunately or unfortunately, the MRI does not help guide us toward any other types of blood tests or spinal fluid tests. I do not recall if your son has seen a pediatric ophthalmologist (who dilates the pupils with drops and looks at the retina). Could you let me know? Sometimes this can provide important diagnostic clues about the brain and if this has not been done I can send in a referral. That might guide us toward other blood tests.

My first reaction was not good to say the least. All I could think was great now we have more high definition pretty pictures of Joeys brain that told us what we already know. I had questions. So with all the composure I could muster I sent a reply. 

I am sorry I didn't get to your call I am at work. Joseph has not seen a ophthalmologist. If the MRI really didn't point to anything specific why is he getting worse? Did his blood work come back normal? I am at work till 7 pm tonight you can reach me on my phone here at 000-000-0000 or I will make sure to have my cell on me. I'm just wondering what the next move is.

I would like to take this time to thank the people at my home away from home who were supportive that evening while I had a little mini meltdown. 

After a night of sleep and still more anticipation and anxiety I received a response. 

Dear Mrs. Dicola,

That’s no problem – I can be difficult to reach as well.

 Joseph has not seen a ophthalmologist.

 The back of the eye is the window to the brain and sometimes shows problems that are a clue to diagnosis. He needs to see an experienced pediatric ophthalmologist though and not an optometrist specializing in glasses. Would you like me to refer you to one here? If they find something it could be very helpful, but to be honest the chances are not that high. My view is that this is a good idea anyway.

 If the MRI really didn't point to anything specific why is he getting worse? 

MRI shows many things, but not all things. The findings on his MRI don’t show us what kind of disease might be causing him to get worse or what happened back when he was little and he started having problems.

 Did his blood work come back normal?

Yes the tests I sent did – there are hundreds of rare diseases that cause severe behavior and learning/thinking problems and that can be progressive. Some we know tests and genes for, others we do not.If the ophthalmologist identifies particular findings that would guide us towards blood tests related to those findings. If not, there are still some other blood tests we can send but at this point the chance that any of them would give us a diagnosis is low. 

This can be a very long and painful process. I (and all neurologists) have undiagnosed patients with serious problems. Sometimes, new findings become apparent over time and a diagnosis is made – for example I follow twins that had psychiatric problems for a number of years and then at age 17 some findings emerged which allowed us to figure out the diagnosis.

So there it is folks. It is going to be a long process and it might be years if ever that we truly know what is going on with Joey. At least it appears that we have a doctor willing to continue to search for for answers with us. The hardest part is not knowing, not knowing the prognosis or course this will all take. I guess all we can do is just continue to forge forward and do the best we can. In the meantime I just continue to be grateful and blessed by my family and friends and there unending support. Without all of you I would never be able to do this. 

25 hours.....

I can't take it anymore. I am so sick and tired of pass the buck. Let me tell you the latest in the long list of disregard for my son. On Saturday Joseph started reporting hallucinations both auditory and visual. He was not dangerous but he was scared. Asking me "Mom when will all of this stop?" I called the group home because he was on a home visit and they told me to take him for evaluation so I did. I went to my ER where I trust everyone. The care we had there was amazing and I thought finally we will get somewhere when the attending seeing him didn't just blow it off as a psych issue and said lets get him down to Cincinnati Children's where they can evaluate him for medical reasons and admit him to get some answers. I was elated. So transport comes to take him and I follow. After we arrive and our put in a room we see a medical student for about 10 minutes and some blood work is ordered. After several hours a different medical student comes in and says "everything looks OK and if you are comfortable we will discharge him since he has a neuro appointment so close the neuro fellows believe he can just be seen than, we want to call out to psych and see what they think." Needless to say I was not happy. I told the medical student No psych does not need to be called, he is followed very closely by psych already and is in a treatment facility. He left the room and than the attending finally came in. She went through the same speech and when she was finished I told her, "if all you were going to do was blood work and send us home there was no need to have us transferred here in the middle of the night, the hospital we were at could've done that, you couldve called neuro before hand and seen if they had any idea about admitting him and saved us the trip, the expense and the stress for Joey." So after 25 hours awake we were no better than before we went.

Not only am I exhausted but I am upset. I feel all alone on this. I know my friends and family are supportive of everything but the weight of all of this is crushing me. I feel that I should do this on my own. Someone said some interesting things to me through this ordeal that this can be an inconvenience to everyone. I feel if that is the case I am better off doing it alone. It might be difficult for me to do but better to do than burden others. I plan to move forward and pick myself up. I will continue to fight for Joseph and I will not give up till someone can give me some answers. I love my children with all my heart and I have discovered that their well being is front and center in my life and will always be that way. Maybe I just don't have room for anyone else because when things get tough so far all I have ended up with is more hurt knowing that those who should be there feel its an inconvenience.

Joey has his appointment in one week and at that point I hope and beg that this doctor will listen and say I won't stop till I have an answer, but my faith in that is teasted....

A mothers instinct

So I went around the red tape and took Joey to the ER to get his head scanned a couple of weeks ago. During the focused neuro exam Joseph had difficulty lifting his left leg, tracking with his eyes and coordination tasks. I knew I had done the right thing. The results of the scan were not what I expected; it showed he had mild/moderate atrophy of his frontal and parietal lobes inconsistent with a child of the age of 11. What does this mean? I don’t know….

Frontal lobe atrophy is a reduction in the size of the frontal lobe, the foremost area of the brain. Result, changes to its shape and structure can cause a variety of problems. Patients with frontal lobe atrophy may experience it as a standalone issue or in association with an underlying disease. Many neurodegenerative diseases like Huntington’s are associated with shrinkage in the frontal lobe over time. Patients with this neurological condition can develop planning, emotional regulation, movement and critical thinking impairments. Sometimes the condition onsets slowly. The symptoms are sometimes mistaken as signs of mental illness before more progressive symptoms indicative of neurological problems develop. For example, a patient might have disorganized thinking, emotional outbursts, and hallucinations. As frontal lobe atrophy progresses, the patient may start to develop movement disorders and more obvious neurological deficits. The frontal lobe helps the body plan and executes voluntary movements. Patients with degeneration in the frontal lobe may move more slowly, shake or have difficulty with fine motor tasks. This can also affect speech and eating, as the patient may have difficulty swallowing and articulating clearly.

So in desperation reaching out to every doctor I know and some my friends no we have come up empty handed to any thought of what this means. We have an appointment with a pediatric neurologist in April and hopefully that is where we will find answers. My biggest fear is that we have been poo pooed away so many times in regards to this being an organic cause I just hope the doctor looks past all of Joseph’s psych diagnoses and looks at his symptomology. He has never stabilized; he has never gotten any better. This is all just a lot to process. We have spent the last 3 years institutionalizing my son thinking that was the best treatment…. We have spent the last 3 years with our family separated thinking we were making the best choice. I know people have said “you only did what you thought you had to” that doesn’t make me feel better.

There are so many questions and no answers. In the meantime Joseph seems to be on a back slide again, last week ending up in full blown rage stabbing himself 5 times and ending up on 24 hour watch. My heart is breaking and every day that passes this is getting harder to handle. I know that I am trying to keep it together but I am slowly crumbling. We are putting together a synopsis of his medical history to bring with us and in plowing through all the records I find myself becoming more angry and sad. Reliving all the events. At one point a hospitalist at Phoenix children’s hospital said in a note, “If headaches persist, recommend outpatient neurology consult.” Do you think anyone ever told us or followed up?! I shake with rage as I write this thinking we might have had answers 3 years ago.

All we can do is wait and hope that this time we will get some answers.