p8. Pardon me; do these come in hypoallergenic metal?

Da appeared in court with a well-written statement regarding the reasons she should stay in the mental health program vs. going to jail.

Tom had to a chance to go to the courthouse and watch the proceedings, but he didn’t have a chance to visit with her. I had to leave with my other daughter for an out of town tournament, but fortunately Tom had the chance to call me before we left.

The Judge decided to have her spend the evening in the Justice Center jail, then go back to the Mental Health Divergent program the following day. He gave her four days to prove she could live with in the rules, then reappear before him on Tuesday, the 28th for his final decision.
According to her call this evening, she said she is to sign for her apartment in the morning, then appear for the added probation time for her violations from the Judge Tuesday. This is not how Tom understood the decision.

As part of the Mental Health Divergent program, She was accepted into a program for young adults who are indigent. It is so upsetting to think that your kid is homeless, you almost feel heartless when you know you're one of the reasons she has no home. With all the circumstances and just common sense of why she cannot stay in your home, it still is a hallow feeling when you cannot come to your Childs rescue. Instead she will now receive Medicaid, $500.00 a month towards rent and a small amount of money monthly to help her meet expenses. She will also be subjected to random drug test and must keep a job. Should she break her parole in anyway, especially by flunking a drug test, she will immediately go to jail. I just can’t help but wonder what happens to these kids once they are out of jail the second time around.

Da still has numerous outstanding “check fraud” charges that are just dribbling in as warrants. The one she received this week was from another county, so I do not know if the judge is even aware of these.

So what does a young adult, receiving money from the state feel like when they have Bipolar Disorder? I am scared that she is going to think she has hit the lottery every month. My hope is that she will feel she has truly been blessed with a second chance and put it too great use.

How does she keep away from the old riff-raff that are going to swarm on her like flies since she now has a place to hang out? How is she going to fight the temptation for drugs and the extra money that can come with them? When do you trust her to be around your younger children? When do you trust her period?

Da said the last week when she was in jail they put her on the medical floor again, I asked if they thought she was suicidal? “No”, she said, “that awful rash I keep complaining about looks so bad they put me here.” “Did they find out what it is?” I asked. “No, they don’t have any idea”, she replied.

After much thought, I have a pretty good idea what the problem may be.

She has been allergic to all metal, except silver and gold (just like my sister – which I always thought was pretty convenient). Even when she started wearing training bras – we needed to be sure the traps had plastic attachments or her rash would be huge.

The last time I thought about it, handcuffs were not made in solid gold or silver. Hopefully the aggravation of her skin allergies will end this Tuesday.

p7. The Boarding Experience, College/Justice

The Boarding Experience

. If she is sent away - “not ready for the boarding experience” – this time she will be sentenced to jail.

I must say this was a day I ended up crying for a while. Last night Da called and talked to Tom, saying she was back in our Justice Center. She had a court date Tuesday morning and the Judge told her he didn’t think she was ready for the Mental Health/Addicted program. He then told her she would be returning to the Justice Center for confinement until her court date Thursday morning. During that time she was to think about why he should keep her in the other program.

I mentioned - learning to be an advocate for your kids when it comes to school, I must say the challenge really changes once they turn the magic age of 18 and you are no longer permitted to discuss anything related to health, and limited legal issues.

She went to college for one quarter. We paid for 15 credit hours and a very expensive parking spot. Not to mention textbooks – I believe that Bill Gates would be a godzillionair just from the price of a “college” Microsoft Office textbook. Towards the middle of the quarter, in a moment of insanity, I took the money I saved for a new digital camera and paid for room/board with the sorority she was joining. This was with the understanding that she would meet the disability director for a standing appointment weekly. HUGE mistake, and in all honesty the splurge was purely a break for myself.

First, I think parents sometimes forget or don’t realize that when kids with special mental needs graduate from high school, most colleges and universities are equipped with special needs departments. Historically these would be utilized by the physically challenged or those who were visually or hearing impaired. Since ADHD and LD have become such buzzwords with lower schools, universities and colleges have risen to the challenge of these students too. Let me give a word of caution for parents like us, in the past our kids would not have been diagnosed with bipolar until they were older. Now that they are catching this earlier and medicine is effective, these kids actually have an opportunity for higher education. The problem is, their disability programs really are clueless what to do with them, with the severity of her illness, she needs a Jiminy Cricket on their shoulder at all times.

She ended her college experience that first quarter with three credit hours by getting a 4.0 in philosophy, and 0.0 in all other classes. I don’t even think she opened the Microsoft book; of course all of her books have disappeared.

She also earned 2 arrest warrants and a huge amount of parking tickets. The day she moved out of the sorority house, I think she left not on the best terms and was never initiated.

From this point on, Da’s adult experience has been in a state of high mania and minus the guns, lived the life of Thelma and Louise. We were fully expecting to see her on one of the stolen credit card ads “and I am the prettiest girl in the whole complex”.

This gets me back to the advocacy. By the start of her nineteenth year, she had 7 different criminal cases on the dockets in our court system. Most frightening two of these were felonies. You cannot be a member of the Mental Health courts with felonies. We had another angel enter, a lovely lady who worked with Mental Health and jumped through hoops for me to get her into this program, this included having the felonies reduced to misdemeanors. She also tagged Da's file for the next time she was picked up - that they should not release her on her own recognizance bond (OR) since she kept disappearing to NYC to start her singing career – she is really good!

The first time they picked her up with this flag on her file, she was placed into the “suicide” section of the jail, keeping her away from the general population. I don’t know that she appreciated the full value of this. They base the hierarchy of this facility by what jump suit color you wear. One day she called her sister and said “you can’t believe it they made me wear yellow, I was so embarrassed” (this was the “WOW” level of suicide). Her sister’s reply was “Da, you’re in jail, you should be embarrassed”! Since then she has been in detox, back to a doctor, trying a newer med Trileptal which has less of a chance leaving the body like lithium if the patient is drinking too much, etc. This med has worked well, so we thought things were going well. Somehow confined to this program she also received two probation violations, which took us back to the top – and the judge and the justice center.

Please pray that the court has the insight to do what is in her best interest later this morning. Because honestly, this parent has no idea what that would be. She has been crying all day and calling collect. The judge told her she would spend two years in jail, and she was lucky because if the felonies were still there it would have been 4 years in the high security “big” house.

I feel so bad for her sisters, personally when everyone ask what she is studying, as you most likely ask your friends with/are of college age – I tell them she is studying the legal justice system. They always say… “Oh really, where?”

p6. The Road to Higher Education

Junior High is notorious for a two-year stint in experimenting, and pushing the limits to see what a kid can get away with. As a teacher, these were two of the toughest grades for me too teach.

After 6 grade and the kids separated into different schools with in the district, we thought we would spend thousands and send Da to an inner city school, which happened to be for the Visual and Performing Arts.

She is blessed with an awesome voice, literally perfect pitch and a comfort on stage that is rare. Over the years she had the opportunity to sing in many programs including the “Pops” at our huge Music Hall, the Performing Arts Center and our Contemporary Arts Center. If you just close your eyes - and listen to the “Little Mermaid” or “On my Own” from Les Mis - then you can hear the clarity of her voice. Her therapist went to see her perform at the Arts Center and told me later she sat there with tears rolling down her face. She then summed it up perfectly… “You always told me she could sing really well, but I had no idea she could sing that good. You know she could really make it, she could be a recording star, but I think she would be on the National Enquirer’s cover weekly.” such wisdom from one of the people who know her best.

The school turned out to be about 40%, at the time, students that belonged there, (you had to audition) the rest were questionable. I ended up working each week in their bookstore where the kids got their junk lunch just to keep an eye on things. This was the first time we had her put on a 504 program, which basically said the school was liable for her success since they didn’t have a “specials” program. What a joke. This had to be the worst school I have ever seen, and to this day, I have no idea why we didn’t sue the school system for our out of district tuition. She skipped classes, had incredibly socially unacceptable behavior and horrible grades with no accountability. I went to pick her up for a doctor’s appt. and the teacher told me, “she is supposed to be in this class, but I don’t even know what she looks like”. Hello, this is 7th grade. We ended up going to a study center and spent 200.00 a week, just to get her through her work. She got her papers done (she didn’t turn them in – I had to fax them) but she mainly disrupted the other kids at the center. She has a great sense of humor.

Da had two hospital stays in her 7th grade year, the second was brought on by a horrible experience at this school and she ended up hospitalized for 6 weeks.
She missed the end of school and had a record of 9 “F’s”, but I did not have them hold her back. Mainly because I had no idea where she would go next.

God sent us an angel in July, the director of the Special Ed. Dept. for our district, put the IEP process into high gear and condensed a three-month process into 2. By October, Da took the “scrunch” bus to what I call “the little axe murders school” which was a SBH (severally behaviorally handicapped) program. She was really out of place when her meds had her stable, but they said they couldn’t handle her when she wasn’t. She was in this program for 2 1/2 years. There were 6 kids in a class with two adults. Academically it is questionable what she learned, but it was a safe place for her until she decided to leave for adventures.

Her scariest runaway adventure - after being away from home for days - was when she saw a 4 family apartment building. You know the kind with a big glass window for the staircases? She passed this and saw a heater in the hall, went inside a curled up to sleep. It was December; she only had a pair of shorts. When she awoke, she was in a stranger’s apartment. She doesn’t remember who they were, or how she got there. The next day the police found her and she went back into the hospital. At this point her mania had elevated to the point where she was actually psychotic (left reality). This stay was 8 weeks and then we were asked to find an extended care program. This is so hard on parents since Mental Health Insurance is not as comprehensive as other illnesses. The extended care would be 380.00 a day, and we had wiped out our coverage. Luckily we found a great doctor who got her meds together (17 pills a day), and we didn't have to use the extended program, she was a walking zombie, but she was safe. She also gained 45 pounds in two months.

Sometimes you like the manic personality over the medicated, so I am sure the bipolar person really feels this way.

To quickly sum up her high school years, she was mainstreamed into a “normal” high school were she blended into the walls most of the time. She was hospitalized 3 more times before graduation. But she did graduate.

This proud family was sitting in our seats waiting for the processional of gowned achievers, and out of the blue, I started to just sob, I couldn’t quit crying. My husband looked at me rather amused and said, “what the heck are you crying for?” I just told him that all the people sitting in this building had absolutely no idea what it took for her to get this far, and it was so overwhelming.

Well sure enough the first pair of kids to walk down the aisle were a female and male. And the male had “Down’s Syndrome”; I just looked at Tom and said, “Well maybe not everybody.”

p5. The “Secret” Education Continues

Da is currently boarding in a court appointed Detox Center. She has made it for seven, going on eight weeks in a boarding facility this time. If she is sent away - “not ready for the boarding experience” – this time she will be sentenced to jail. I think it is doubtful she will have the opportunity to room with Martha Stewart, which is a shame, because at least she could have learned some applicable skills other than keeping herself safe and alive.

I mention this because today I had a hair appointment downtown. This weekend just happened to be the busiest for events in the city of the year, actually in our history. Because of this I was concerned about parking and decided I best leave suburbia early to look for a spot. This didn’t turn out to be a problem since the battery in my car had died.

My husband was nice enough to drive me down, but I left the salon with a bus schedule and a note from the receptionist telling me where to walk to the relocated bus stop. It has been many years since I commuted with the metro. As my career grew, my hours were so unpredictable it was not an option for me.

Once I found the stop with all the inner city bus riders waiting, I assured myself this was still an OK thing to do – meaning my station in life had really not rose above a bus ride, and I would be too cheap to spring for the $20.00 plus taxi fare anyway. So after a guy tired to sell me a watch and I checked the posted sign for the 10th time to make sure I was in the right place, my bus arrived and I was prepared for the long ride that took you pretty much everywhere before heading out of the city.

Wow, such a long story to make a small poignant point.

Before I knew it we were driving past my daughter’s new boarding facility, and I was searching for a peek of her through the small slatted windows. Just think of me riding a bus, questioning my bus-ability compared to the daily riders, then realizing not many – if any of them – had children confined to this correctional treatment center.

Go figure, life is funny…

When you have a child with a mental illness, you learn to remain humble and empathetic of others, because if you don’t you are reminded. For many families the hardest thing to learn is; the fact that mental illness within the family is not shameful, nor it something to keep hidden. To keep it a secret is so damaging to the child/person and all others involved.

p4. Educating a special needs kid, now that can cause sleepless nights!

Da in her short life of 19 years went to many different schools to complete her high school education and one quarter of college.

As far back as kindergarten we learned the ongoing of advocacy in educating a child with a mental illness. Our very first conference with a teacher, resulted in us being told that “She is a space cadet, now I am not saying she is an airhead, because space cadets are piloting their ships through the universe, while airheads can only be passengers”, she also scored poorly on her motor coordination skills. It didn’t matter that she rode a two-wheeler earlier than most.

It is not our intention to bore you with the detailed 12 years of accomplishments, conduct referrals and challenges, but it would be a great disservice to not touch on some highlights.

First grade was a good year for Da, she started at our parish school and had a first year teacher, who was as pretty as could be and had a sweet disposition to go with her sense of humor. We learned two things before the years end; one, she told us Da spent her class time writing books and if she and the class were good that day, she would let her stand before the class and read the stories, two, Da had spent the year taking secret gifts to her teacher from her “father”, this was so her teacher would marry her father, and I, her mother could be the maid.

By third grade, we knew Da needed evaluation for school, she had seen a therapist, plus the school psychologist observed her in class. A diagnosis of ADD was reached after she meet a much larger number of the criteria than necessary. The psychologist told us she was used to seeing students not paying attention by writing on the papers, themselves or twirling their hair, but Da was the first kid she had seen literally standing in her chair facing away from the teacher so she could get a better look out of the window. She started Ritalin.

Fourth grade was were we made our huge mistake of not removing from the parochial school. After 4 weeks, she had been in so much trouble; which translated to the fact her name was on the board and she sat on the wall daily at recess. This school had a policy of the 4th graders changing classes, as individuals, not as a full class – much like high school. It was also one of the largest elementary schools in our city, so there were 29 to 32 kids per class.

Da’s major problem was she couldn’t get her things organized enough to move to a different room with the right things, her other major problem was a teacher that had no idea what it was like to be a kid. So we had our first “parent requested” conference. We requested that all 4 teachers attend, plus the principal and they were there. At the conference the principal decided to be the main speaker and told us it was their opinion that Da would benefit from therapy in addition to her medication. Well I would be lying if I didn’t say I was shaking and starting to cry. I just looked at the principal and replied, “She has been in therapy for a long time”. He asked what the therapist had said and I told him “That she was being humiliated at this school and we should remove her immediately”. Their mouths dropped. I bought them a very expensive book about ADD kids and they really got behind her to help out for the rest of the year.

By 5th grade her behavior had become so unacceptable from grades, social interaction to stealing that she had her first hospitalization. The hospital team decided she was depressed in addition to her ADD and asked us to send her to a non-therapeutic boarding junior school. They felt the climate she had created at home was so uncomfortable, all would benefit from her being away. New Years day I drove her to Connecticut to attend a school we couldn’t afford. Their only demand was Da see a psychiatrist locally. She lasted for 6 weeks; they sent her home saying she wasn’t ready for the “boarding” experience. We learned she had been stealing from the other boarders; hitch hiking with truck drivers for adventures and mailing her underwear to boys in her class. Those kids do the darn'est things don’t they?

She moved on to her 4th school to end her 5th grade year.

By graduation she had been to 7 schools.

It is good to take a break and to stop in the middle – after the middle- works well. Junior High and High School is worth the story, I will tell it next.

p3. In the Middle of the Night…

So just what does my kid do in the evening when she isn’t sleeping? Let’s start with the innocence of a three year old.

After my second daughter was born we left our small home and went to suburbia. This was an incredible thing to Da, better than a new baby sister. After a few days of having a sibling, she proclaimed that she thought she was nice, but could we send her back now? This was all put aside when she discovered there were other kids her age living right in the same circle.

My husband is the kind of guy who likes to keep his life on a schedule, this included getting up early, 5 am, to exercise before work. The first week in our new home he would check on Amanda to make sure things were OK and to double check that she hadn’t again loaded all the stuffed animals in her baby sisters basset, just in case she wanted to play with one.

The third morning, Tom was mortified that he couldn’t find Da anywhere. We both went on a search from the second floor to the basement and she was nowhere to be found. Amazingly our neighbor who lived across the street was walking her over from his house. It turns out she had let herself in their back door which was kept unlocked for taking out their dogs at night. The neighbor told us they heard some scattering noise and humming, they thought for sure they were catching a burglar. He and his wife knew they were alone in the house since their daughter was visiting her grandparents, and the noise didn’t make sense. Thank goodness they did not keep guns.

They discovered the sound was coming from their daughter’s room and slowly approached the door to nab the burglar with surprise. Da was the one that surprised them, since she was sitting in the closet playing with the toys; we have no idea how long she had been gone.

It would be such a great thing to say now that this is the experiences we had in the evenings with our daughter, but unfortunately it is not. We had periods of her leaving through a window in the middle of December in a pair of shorts and not showing up until the police found her three days later. An attempt with a Junior Boarding school for 5th grade would have her hitch hiking with a trucker for an adventure. (I will discuss the education of our daughter). Our cable bill would be huge from the ordering of “Adult” movies. The fax line would be used to sneak in phone calls in the late night, much to the frustration of the parents on the receiving end – they could not contact anyone since it was a dedicated line, so harassment charges would be filed with the police.

The incidents are numerous and teeter from life threatening to silly, but the above all took place before she was in the 8th grade.

As an adult, her evenings without sleep have been horrifying for a mother to discover. A week spent in our justice center (jail) before sentencing was especially frustrating to her because she could not have her Seroquel, which is an antipsychotic that she used as sleeping pills.

Mothers and fathers of bipolar children do not get much sleep in the evening either. In addition to the phone calls and searches, there are the tears, nightmares and worries. Parents do not feel grandiose.

p2. Blame it on the baby swing...

Let's face it; we are a society where blame is important and someone/thing must be held accountable. Since I am the mother, and the study of psychology has been based on the interaction of child with mother - I have decided to blame it on the baby swing.

It was 19 years ago, we are not talking about the wonderful battery or remote controlled swings with the Bose speakers and video consoles. This swing had a wind-up crank and a seat for an infant; this seat was my bipolar Childs, crib, playpen and our saving grace. Amanda did not sleep.

Each evening we would attempt to lull her into bed, but without luck she would end up in the swing and one of us on the couch, to be the crank - not to say we weren't a tad cranky the next day. I know that we all have heard of the startle effect in infants, Da spent her evenings reaching out to the unknown as the crank was not the quiet mechanism one would wish for. Each time the soothing sway of the swing stopped - so did her slumber.

Once she became mobile, the swing went into storage.

Before Da was two, we moved into a house in an older "yuppie" part of our city. The small house was a former two family so her bedroom was a kitchen in a past life. The only signs of its history were a porcelain sink that had the slant with drainage lines running to the tub area. The water did not work. Excited about a new home, yet living on a budget - I carefully picked a sweet balloon theme paper and had a friend teach me to hang wallpaper. I also painted her crib and other collected furniture so her "nursery" was as lovely as Pottery Barn's catalog offerings, OK, maybe not as nice, but it would do.

As she aged it was an apparent plus in her personality that she could keep herself entertained for hours. Our house was much like Sesame Street; her only neighbors would be George the dry cleaner, Bryan the grocery guy and Carl in the hardware store. There was also an older "beauty salon", very pink and owned by a lady named Verba May, but she closed just a bit after we moved in. This was the house where my husband grew up, not a blatant decision to isolate our child.

For entertainment in the evening bedtime hours, Da would lie in her crib and recite all the names she had learned. She was a very smart toddler, as one advertising pro said, "what are you going to do, she is so smart", what an understatement. When she really became mobile it was no longer satisfying for her to do her evening litany and she started to work on the wallpaper. After tearing a good portion of it down, she found this task to be too easy and went to work on her crib, and changing table. She was too young for a Rector set, nor a good container of Lincoln logs.

Each morning it was as if the Easter Bunny had visited, we had to go find where she would be sleeping... in a cabinet, on the rocking chair, curled in the sink, hiding in the closet, it was when we found her out on the roof I rang and made an appointment for my first meeting with a Psychologist, this was surely a problem with my parenting skills. All first bourns are perfect you know.

Bipolar people who are experiancing manic episodes do not sleep; it is not necessary for them. I have come to learn this is one of the "benefits" of mania. Some people use this time for great endeavors, such as studying or creating masterpieces, others for getting into trouble with the wrong crowd and yet with others, it starts to spin them into a complete psychotic state, which can be detrimental for all involved.

Sleep is a wonder gift, a time to renew the body and mind, and a form of true relaxation. Mania is a high that has no time for such trivial gifts. Should bipolar adults be required to have hammocks in their homes? Medication you say - ahhhh this will come much later. The sleep never did.

p1. Starting with the end as of now...

Raising a child with a mental illness has been an adventure in the unkown, but a lesson in advocacy.

I could start (and will eventually mention) with the early days, but for now our concentration is getting our child into adulthood and not losing her in a violent way. She is 19, and we no longer have control over her medical attention. Which means basically she has gone without a doctor or meds for a over a year sending her into a huge state of Mania. She is Bipolar, she is smart, she is cute, she is funny, she is talented, she is in the criminal justice system after trying to make it just one year alone.

It is tragic for parents to take a back seat and watch the downward spiral of what they know is to come when a Bipolar person goes unmedicated for a year and turns to a life of socially unacceptable behavior, self medication and the feeling of grandiose (sp?) which can lead no where, except to trouble.

This can be a lonely place for parents to come from. It is often misunderstood. "Wow, didn't they teach that kid some morals?", "That kids a loser, why didn't they make her stay in college?", "I don't want that kid around my kids!"

Well, neither do we.