Changes

Change is hard. Not very many people actually embrace change. The unknown is scary. I've seen it over and over again, at work, in society and with my family. My daughter used to freak out before every visit to her dad's house. Not because she didn't want to go, but because it was a change of her routine. When a school gets a new principle, both the staff and the parents have feelings of anxiety. They all wonder if they will be able to work with the new administrator.
Now, imagine that anxiety multiplied and amplified. That's our Donny. He has always done best with consistent routines. We first realized how bad the anxiety was the May he was in Kindergarten. Around the middle of May, we noticed he was playing with his hair. He would take a small amount and rub his fingers together. Then we noticed that he was starting to get little bald spots.We went to see the pediatrician. He called it, trichotillamania. It is a manifestation from the anxiety and the OCD. My hubby and I thought we were smart, so we got his hair buzzed short enough that he couldn't grab any of the hair. That's when we learned that people with Trich will then pull whatever hairs on their body that they can, eyelashes and eye brows for example. Donny looked a little unusual without eyebrows. The good news is, they grow back. During the summer, he did well, until we started the back to school stuff, then he started picking again. We started having a pattern, every May and August he would pick due to the anticipation of the upcoming changes in his life.
This fall has been a particularly difficult for Donny. He's going from elementary school to Junior High, but not the Junior High that his older siblings had gone to. Plus, with everything that has gone on this last year, he's even more scared to go to school. He's afraid of what could happen. School starts on Monday. We are really hoping that within a few days his anxiety will settle down and he will adjust to his new routine. I am very proud of Donny though. As anxious as he is, he has controlled the urge to pick his hair. It looks like he's actually going to go to school with a full head of hair. Yeah Donny!

The Stigma

For years there has been a stigma placed on people living with mental illness. People grew up watching "Sybil" and  "One Flew Over the Cuckoos Nest". Doctors used to suggest to parents that their children had no worth and should be institutionalized. In history, people with mental illnesses were thought to be possessed by Satan or demons. With that kind of history, who would want to admit that their loved one had a mental illness?
One would hope that in this age of enlightenment that people would be more accepting of people with mental illnesses. I think that for most people, this is the truth. I also believe it has come about because people are standing up for their loved ones and pointing out that just because they may struggle with a mental illness, it doesn't take away from the fact that they are still human and care.
That being said....I am furious tonight. I was perusing my Facebook wall and came across the most heartbreaking story I have heard in a while. In Ontario Canada, the mother of a 13 year old autistic child received an anonymous letter from a mother in her neighborhood. The letter claimed the child was a nuisance and had no value of life. She demanded that either the mother move to a trailer in the woods with her animal child or euthanize the child. Ending it by stating either way, the world would be a better place without the child in it. Typing this, I am getting worked up again. How dare this woman belittle the value of this other woman's child! Yes there are times that I get frustrated with Donny. Yes, sometimes he makes more work for us. Our lives are never boring, but I would not want to be without him. He is my son and I love him very much. I cannot imagine my life without him in it. Yes, my son struggles with mental illness. No, it does not take away from his value of life.
I am a christian woman. My faith in the Lord helps me get through those tough days. One thing I truly believe is that everything in life has a purpose, including children struggling with mental illness. I leave tonight asking you to please don't be like that heartless woman in Canada. When faced with a child struggling with mental illness, remember that someone loves that child with all their heart and that God created that child with a purpose in mind.

Communication

One of the hardest things for Donny is communicating to the people around him when he is in distress. For example, right now he is consumed with anxiety about the new school year that is about to begin. He is going to a new school that he doesn't know much about. We went to go visit the school and walk around, but at that time, they didn't know which classroom his class would be using and the principal was still interviewing teachers to fill the position. For the rest of the world, thats just the way life is and we pretty much accept the unknown. For Donny, that puts him into an emotional tailspin. He feels out of control and doesn't know how to explain it. Instead he starts looking for negatives. He behaves negatively to get negative consequences. In fact this morning during a meltdown, Donny said he would rather be back in the Juvenile Detention Center than going to a new school. He doesn't mean it, but its the only way that he knows to express his fears. Donny is doing what he does best. He is being self destructive. He figures then if it doesn't work out then he won't be disappointed.
As his parents, it is hard for us to see him hurting himself and giving up on himself without even trying. Its also hard trying to get him out of these moods where he is purposely looking for trouble. We know that he doesn't mean it, we know that he doesn't really want to be hurt or to hurt, but it is so hard to break through his defenses, to get his attention. Sometimes his pain is so overwhelming that we hold him in our arms and he just bawls, uncontrollably. Then he apologizes once again for being a jerk.
Its also hard for his brother. Drew tends to be the target when Donny wants to cause problems. Like today. Drew was laying on the floor watching tv. Donny sat on the couch and would put his foot on Drew's head. This a problem for two reasons, Donny's feet have caused people to pass out and Drew is 14 and a freshman, his appearance means a lot to him. Donny knows that if he messes with Drew enough, Drew would give him the negative energy that he feeds off of.
When the boys were younger, many times it would end up into a physical fight. As Drew grew up and learned better self control, there were less physical fights and more verbal fights. For Drew its difficult for him to understand whats going on with his younger brother. Its also difficult, because he feels like he is being bullied by his brother, sometimes on a daily basis. He also feels like his little brother gets away with murder while he gets in trouble for everything. He knows that his brother is different, but sometimes he wants things to be "fair" in his mind.
As parents, thats our struggle, trying to fill the needs of both our boys and help them learn how to communicate their feelings with us in a more healthy manner. Its an everyday struggle, but its worth the effort.

The System

After Donny's meltdown in January, we learned more than we like about the system. Donny spent two months in the Juvenile Detention Center while the courts tried to figure out the best way to handle the situation. During that two months the courts paid for Donny to go through up to date psych testing. He also received counseling on a daily basis. He was suppose to be getting schooling while he was there also, but it didn't seem that he made it an entire week without being put on room confinement. My husband and I were able to see him for 15 minutes on Monday nights and Wednesday nights. On Saturdays we were able to see him twice for 15 minutes. All of these meetings were through a window. Toward the end of the 2 months, the judge granted us a slightly longer physical visitation so that we could hug our son and actually hold his hands while we visited. Before this had happened, Donny was never away from us. After he had been assaulted in October, he slept in our bed. He had just begun sleeping in his own room when the world exploded on us. The day Donny flipped out at school was a Thursday. I went to the school. The had him kneeling with his hands cuffed behind his back. I remember fussing at Donny. I got down and was face to face with my baby. I told him that I didn't understand why he did what he did. I repeated what I have been telling him for as long as I could remember. "Actions have consequences" I told him that the police were taking him to JDC and that there was absolutely nothing I could do to help him. I didn't hug him. I thought there would be an opportunity soon after that. I didn't realize that the next time I would be able to touch my baby would be almost 2 months later. I left the school to go pick up Donny's prescriptions and take them to the JDC. At that time I found out that I wouldn't be able to see my son until Saturday morning. To this day, I can not put into words just how totally devastated I was. I wasn't even sure what to do. I couldn't think. During this time in our lives, there was a huge strain between my husband and me. We could barely look at each other. When we actually spoke to each other, it was difficult. I began sleeping in Donny's bed. Partly because it made me feel connected to him still and partly cause it was easier than fighting with Oscar at night. On top of everything else going on, Drew was lost. He was so angry at himself. He figured that maybe if he had been around to stop the other boys from beating Donny up then maybe none of this would have happened. In his mind, he was the big brother and he should have protected his little brother. He felt like he had failed his brother and us. Even though the two bickered on a daily basis (like most brothers) Drew would wander around the house and yard, lost and bored.
Every other week, we would meet in the courtroom with the Judge, the DA, the PO and our court appointed attorney. One of the recommendation made was parent classes for parenting children with mental illness. This was a turning point for us. We started feeling a bit more empowered as parents. Oscar and I started working through our differences and coming together as a team. This is how I became aware of NAMI. NAMI gave us some tools, but they also gave us hope. I did learn from them that there is an increasing number of emotionally disabled children in the system.
Our concern became Donny getting comfortable within the system. We really picked up force in our efforts to get him released. And we were successful. But it was temporary. Donny came home and the district said he had to either go to Bootcamp or Alternative Learning Center. Considering that Donny had tried to kill himself twice in JDC, I really was afraid that if he went to Bootcamp that he might try again. I feared that the more times he tried, the greater chances he would succeed. So we put him at ALC. that ended up not being a good situation. Either the teachers didn't know how to work with children with mental illness or they just didn't care. And Donny felt their indifference. On Monday of his second week there, he was so desperate to escape that he ended up pulling the fire alarm thinking that would give him the chance to leave. He was taken straight to JDC. That night during our visit, we were trying to understand what happened. The school hadn't contacted us to tell us anything. All we knew was that the police officer that transported him told Oscar that he had pulled the fire alarm. Donny was upset and his recollections were confused. He told us though that the principal of the ALC told the police in front of him that she never wanted that child on her campus again and that the officer agreed with her. As Donny was telling us this, he began weeping. He was devastated by their statements and I was devastated because as my son sat there weeping, I couldn't hug him. It took us about another 3 weeks before the judge released him again. This time when he was released, they told him if he came back again, they would be placing him in a psychiatric care facility. They also have provided with a great psychiatrist and a counselor that is willing to think outside of the box to help him be successful. My son is very lucky. He has so many people that love him. So many people that are on his side, wanting him to be successful. It breaks my heart to hear about the children in JDC that have no one. No one to come and visit them, no one to say they care, no one to fight for them, no one to just hug them when they are down. There are times that Donny makes my blood boil and he drives me to the brink of frustration, but never have I not loved him. Right now we are working as a family to heal. I thank God everyday for this opportunity and pray that after he finishes his year of probation, that we won't have to deal with the system anymore other than the psych visits. I also pray for those boys and girls that have no one. I hope they find the strength to find a better path for their lives.

Meltdowns

The worst part of living with someone with Bipolar Disorder is the meltdowns. Sometimes we can see Donny starting to escalate but other times it seems to come out of nowhere. The meltdowns consist of verbal aggression and physical aggression. We pretty much live day to day. Donny can have a number of great days and then something happens. Sometimes we have no idea what sets him off. It is much easier figuring that out after a full fledge meltdown than when you see him escalating and not knowing how to stop him before its too late. Once it gets too far, he has lost control of himself. Many times, he has even blanked out what has happened.
When Donny starts to escalate, he usually starts off verbally attacking whoever is around. From the time he was little, he has used language he was sure to get a rise. I have been called a lazy fucking bitch so many times that I couldn't even begin to count. But the one name he is favoring these days is nigger. A little black boy that lived near us when Donny was younger would call Donny that every time they disagreed on something. Donny quickly picked up that that was used to let someone know that you were mad at them. Since then, he has learned that that word tends to get pretty big reactions. He then uses those reactions to build up his own emotional meltdown.
Along with the verbal escalation then comes the physical escalation. When Donny was 3-6, Oscar worked nights. By the time we got home from work, Oscar was going to work. This meant that from the time we got home until Donny fell asleep, I couldn't let Donny out of my sight. I couldn't even go restroom or I would catch Donny chasing his siblings with baseball bats or knives. As he got older, his aggression became more intense. Many times I would have to use all of my strength to restrain Donny so he wouldn't hurt himself or a sibling. In the process I ended up with a share of bruises. Donny was not trying to hurt me, he was just blindly swinging, trying to escape his own demons. Once he starts to gain control again, then he cries with regret. He clings to me or Oscar and just cries. After all that, he is usually tired. Then he forgets that anything has happened.
For the most part these days, we are working with him on calming himself before he escalates. Sometimes it works, other times not so much but he is doing better at targeting the aggression at walls rather than people.
This last October, Donny was beaten up by some boys in our neighborhood to the point that required multiple surgeries. We tried to press charges, but the local police department told us that boys will be boys. They even told the other parents about the medical reports that I had and suggested that they get something so that they wouldn't have to press charges. I'm guessing this was because one of the boys had a grandfather on the force. So from this, PTSD was added to Donny's list of mental disorders. Adding the PTSD to the bipolar disorder meant that we ended up with a keg of dynamite. We just didn't know what would be the flame to light it. We found that out in January. Donny's favorite teacher left to pursue one of those opportunities that change your life. With her leaving, a substitute was brought in. On the fateful day, the sub and the para took the class out for recess. One of the other boys threw Donny's football to a boy that Donny had personality issues with. In the instant, Donny lost it. He attacked the other child, when the substitute tried to intervene, he hit her too with the sticks he had picked up off the playground. At this point he picked up a beer bottle they found and after breaking it, he threatened to kill them with it. The Principal tried to talk Donny down. This is a man that has known Donny since he was born. Donny has loved and respected him for many years, but on this afternoon, none of that mattered. He even attacked the officer that he has gotten along with for years. What comes next will be a whole other post. Just suffice it to say, as the officer was explaining to me about what happened, Donny didn't remember a lot of the details. What I find scariest is just how quickly he escalates to the point of physical aggression but then to have no recollection of it.
As I said, he is going to therapy to try to learn coping skills. Bipolar disorder doesn't just go away. We are all learning how best to cope and to have as "normal" of a life as we can.

The Hoarder

One of the more difficult things for my husband and I to deal with is Donny's hoarding. One of his psychiatrist said it was a behavior and control issue another said it was part of his OCD. All I know is that the boy has got to stop.
This brings up the difference between a pack rat and a hoarder. I am a prekindergarten teacher and the mother of 4 children, so it is natural for me to be a bit of a pack rat. Everything is so expensive anymore, so if I can save money, I will do it. Being a pack rat, I save things that I can use in my classroom, such as empty toilet paper rolls or paper towel rolls, empty butter dishes and my newest project involves saving Miracle Whip squeeze bottles, thanks to a Pinterest idea.
A hoarder saves things just to have the things even if they serve no interest or purpose. I can't tell you how many times I have had to shoo my son out of the recycling bins at the school behind our house. The other day, he was riding his scooter out in front of the house, back and forth between the neighbors. He started going just a bit further and a bit further, then made a break for the house down the street, where the people had moved out and had left a pile of trash out in the front yard. He was obsessed with searching through the pile of trash to see if there were any treasures. He found 2 books that even though they were above his level he just had to save from the trash. When the neighbor next door moved out, Donny rescued a case of empty coca cola glass bottles, the little ones from back in my childhood, and an old trophy.
In the attempt to get him to take control of this, I have gone on strike. We have been trying to get him to clean his room now for 2 months. Last time he cleaned it, we threw 10 bags of trash. Its time to hire a crane to come in again. He won't sleep in his room because its too dirty. I have the roll of trash bags ready. I'm working on a motivator to get him to at least start the cleaning process, then I will go in and help him again shovel through his hoardering (is that a word?).
Donny's obsession with junk has gotten to the point that we even had to include something in his BIP at school to not let him bring "trash" home. His teacher and I even decided one year that he wasn't to bring a backpack because it became a vehicle for hiding things he would dig out of the trash.
My mother-in-law calls Donny her "Twister". Its very appropriate because he goes through my house like a tornado. It gets very frustrating when I am trying to clean the house. If I clean during the day while he's awake, I'll never get anything done. As fast as I clean an area, he has 2 more areas destroyed. He'll go into my room to look for something and totally turn my room upside down. There is a Charles Schulz character that I believe was based on my baby, although he is finally doing a better job about showering and stuff. We'll just keep taking it one day at a time. Between his meds and his therapies and the systems we have set up at home, I have faith that someday we will help him get control of his hoarding (hasn't happened it). In the mean time, if you come by for a visit, we can sit and chat in the yard. Have a pleasant day.