Link to Community Mental Hell (Part 1):
Although it will be impossible to describe the hell that would face Joey and his mother as they struggled through life together, we will touch on a few examples and try to explain the behaviors that are associated to the disorders that Joey continues to struggle with.
During the first month at home with his new mother Joey seemed to be in a world of his own. His mother was sure that he was deaf as he was non-responsive to verbal prompts and could not speak. He did have a language all his own although it made no sense to anyone. His mother tried banging pots behind him and he would not respond. She would put him to bed each night and try to read him a story although Joey would not give any clue that he understood. Joey did not know how to play with toys and would only pick them up and throw them over his shoulder. His mother quickly decided that she needed to have his hearing checked and found that his hearing was perfect.
When Joey was hungry, thirsty, needed changed, or needed another need met, he would scream, yell, or bang his head on the floor, stove, table or whatever was available sending everyone scrambling to find what he needed. He would stay up into the wee hours in the morning crying and screaming and not allowing his mother a minutes rest. Joey's mother set out working with Joey as best she could. Her first breakthrough was after about a month of each night reading Joey a bed time story and asking him to point to the picture of a bird in the book when Joey finally tentatively did. This was the first time that she had any indication that Joey could even understand anything that was being said to him.
The first year was a real struggle for his mother. Finding a day care that could try to manage Joey was very difficult. This would be an on-going problem that when Joey became older could not even be done. Joey's mother also after a year ended her marriage of 18 years as she could not take care of Joey and her husband. Her marriage had not been a good one for many years and she knew it was time to focus on Joey and a new life. So thus began the life that her and Joey would know for several years as they struggled alone with only each other.
During the early years together his mother struggled to maintain a job to support her and Joey and began seeking out professionals that may be able to assist. She was told to get Joey enrolled in the "Early On" program through their school as he was delayed and would just need a lot of love and help. Joey had several health issues that also needed to be addressed as with many young kids do. (Tonsils, adenoids, tubes for his ears, and allergies.) Joey's mother began reading as much as she could and trying to diagnose his real issues herself as it appeared no one was really understanding what she was up against. Joey now at three years of age was going to school and riding a bus for over an hour and half a day. His mother would put Joey on the bus each morning with a tag pinned to his coat with his name, address, and a personal note from his mother as Joey could not speak and had not yet formed any kind of knowledge about people in general. He was still very much in his own world and all women were mama.
During Joey's early years it was very difficult to maintain a day care that could handle Joey. His mother missed several days of work due to his behaviors and health issues. Joey's mother was forced to change jobs several times and finally had to start her own consulting business so that she could have the time available that was needed to take care of Joey. His mother had started him seeing a professional counseling center at an early age and had taken him to Henry Ford Hospital for psychological testing. Henry Ford Hospital had diagnosed him with Global Mental Retardation. The professional counseling center had recommended several medications, speech therapy, and recommended things that Joey's mother could try at home. Through all of this, Joey's mother kept researching on her own for answers and working with Joey every evening on developing play skills, learning to speak, and trying everything she could to minimize the behaviors that were increasing in intensity as he grew larger. At one point she had read that there were new studies indicating that maybe placing Joey on a gluten free diet may help. She had also found information on a disability called Reactive Attachment Disorder that she believed fit some of Joey's behaviors. She had talked with the school professionals and let them know that she was placing Joey on a gluten free diet and would be sending all his meals to school with him and then asked them about Reactive Attachment Disorder (RAD's). The school dismissed her on RAD's and on several occasions sabotaged the gluten free diet by giving in to Joey at school to try to minimize his behaviors. Joey's grandmother was also not convinced that the gluten free diet was the right thing to do although Joey's mother fully believed it was helping. His grandmother convinced her to take Joey to the University of MI for an exam and to find out about the diet. The University of MI chastised Joey's mother for having him gluten free and she was forced to give up on this even though Joey seemed to improve and was actually performing better in school. This is now a fairly accepted practice for children with Autism. The school by sabotaging her efforts, and the University of MI by not understanding the full extent of Joey's disabilities, were only the first of many organizations that would dismiss her and be detrimental in helping Joey during his early years when progress may have actually been made.
During this time Joey's mother had a chance encounter with someone at company she was working at that would several years later change her life. Other than school time, Joey would take up nearly 100% of his mother’s time. Joey could not dress himself, take care of his personal needs, was not fully potty trained, could not be left alone at any time, and would rarely play on his own. Joey's mother found it difficult to take of herself, have any private time, or even to get the grocery store, or due the daily things we take for granted like cleaning the house or running errands. Joey's mother kept using her nighttime hours to read and research the behaviors that Joey exhibited along with working him each day. Some of the things about Joey's behaviors that were really striking included his obsessions, inability to transition from one activity to another, becoming extremely agitated when told "No", having violent outbursts multiple times a day, not being able to form friendships, preoccupations with blood and gore, hiding in the dark, the constant need to get his own way, and all things scary. Joey would also shy away from hugs, work himself into a frenzy with balls or stuffed animals, fight going to bed, and the more he got close to his mother the more he tried to punish her. Transporting Joey was extremely dangerous as he would throw objects in the vehicle, grab the steering wheel, or rip parts of the car out if he was not getting his way.
The professional counseling center finally recommended that Joey's mother contact her local Community Mental Health to obtain the services that Joey needed as they felt they could help more. This was the start of a relationship with this organization that she could never foresee how truly appalling it would become or how unconscionable there actions would be.
At the age of seven, Joey's mother took the advice of the professional counseling center that was trying to assist Joey and enrolled him with his local Community Mental Health in the thumb area of MI. In the beginning she was very appreciative for the help that she believed she was receiving from them. They offered her about 200 hours of respite a year, provided a case worker that visited once a month, scheduled Joey for a once a month Psychiatrist visit, and assisted her in getting Joey Medicaid coverage. During the next few years Joey grew larger and harder to handle. Although the Community Mental Health offered her respite hours she found it very difficult to find anyone on their list that was willing or able to handle Joey. For a couple of summers she was able to juggle work with one respite provider whose husband was a police officer by working on a consulting basis rather being a full time employee. Although she had to offer this person half of her salary to watch Joey, she still felt she was providing for the two of them.
During these few years Joey was attending the Intermediate School District which had performed some testing on Joey and they had rated his I.Q. at 71. (This is important as anything below 70 would have placed Joey into range of Mental Retardation.) Also during this time Joey was placed on several medications by the Community Mental Health Agency Psychiatrist that were changed frequently. Each time Joey may show some slight improvement for a brief period of time although none were ever effective. The Community Mental Health Department labeled Joey with Asperger’s (a mild form of Autism), Reactive Attachment Disorder, and several behaviorial or not otherwise specified disorders. Occasionally these diagnoses would change slightly although they were always held within the confines of disorders that would not allow him to access additional resources through their system. Each time his mother would talk with the case manager when she was at her wits end they would offer to provide additional respite (which she could not use) and offer to change his medications so that she could have the strength to stick it out a little longer and see if there were any improvements.
Through these years the school called the police on several occasions due to behaviors on the bus or at school. At home the violence level increased with his size. Although the violence may have not been any more frequent it became more unmanageable as he grew. Each month the case manager would come into the home and discuss his wife, hobbies, people he knew, and everything else without providing any answers or assistance. On several occasions Joey was taken to the Community Mental Health agency during outbursts at school. Joey, peed in their lobby with a police officer present during one visit and during another crisis the agency flagged down a police officer outside their building because they were afraid he may become violent.
This would only be a few of the many instances that were to come and lead to the battles with her Community Mental Health Agency that she could never invision in her wildest dreams.
Link to Community Mental Hell (Part 3):