My nightmare started about three and a half years ago. It was at this time that things with my son started going down hill. I really hate to use the word nightmare in this case however, this is what best describes the journey and the fight that I have had to endure up to this point.
About half way through his kindergarten year, I began suspecting that my son had attention deficit hyperactivity disorder (ADHD). At this point I was assured by his teacher that she didn't think he had it. She only thought his maturity level was not that of his peers, as is often the case with early kindergartners.
Toward the end of the year, his grades had started to drop and he had become a distraction to the class. His teacher had started reporting to me the problems she was having with him. He would no longer stay seated to do his work, would run about the classroom, refuse to stay on task and blurt out answers to her questions that were not even related to the topic she was teaching.
By the end of the year, I had a conference with his teacher. At the conclusion of our meeting, we came to an agreement that it would be in his best interest if he was retained as a kindergartener again the next fall. Again we discussed the possibility of ADHD. At this point, his teacher thought it would be a good idea to have him tested for it. This is how my journey began.
A few weeks after meeting with his teacher I was finally able to get my son in to see our family physician. After a quick exam and several questions, we had a diagnosis of ADHD. A few minutes later we walked out of his office with a prescription in hand, and thought that all our problems were solved. Little did I know that this was just the beginning.
My son had been on his medication for just a few short weeks when his behavior took a turn for the worse. The scary thing was that his behavior was becoming more erratic with each passing day. His behavior at home for the most part was pretty good. Taking a trip out in public however, was different story. At first when my husband (step father to my son) and I would go somewhere with my son, he would just start asking for things like any typical child. Regardless of whether or not we allowed him to get anything, our outing would always end in a huge temper tantrum. I'm not talking about the whining and crying kind of fit. My son would literally throw himself face down on the floor flailing, kicking screaming and hitting. Not only was this totally unacceptable, but it was also extremely embarrassing. Eventually as this became a problem, we just started leaving where ever we were at to avoid the situation all together.
As weeks went by his behavior got even worse. Dining at a restaurant would usually end up with fits thrown, drinks spilled and food thrown on the floor. Going grocery shopping became a longer task than what it should have. At almost six year of age, most children would have graduated from sitting in the shopping cart. We tried letting my son walk with us beside the cart and in the end we would inevitably spend most of our time having to look for him. It had become his new game to run away from us or hide inside racks of clothing at every opportunity that he had.
Tired of the never ending search to find him, he once again resumed his place in the seat of the shopping cart. This tactic worked for a brief time before he started to grab things from store shelves and throw them on the floor. He would clean off an entire shelf with just a sweep of his arm. We even went as far as trying to walk down the middle of the aisles so that the shelves would be out of his reach. As you know, grocery stores are a very busy place so it was impossible for us to stay in the center of the aisle the entire time we were shopping. And so it continued that things flew from the shelves as we walked by. The final straw came when he decided to start hitting other shoppers as we walked past them. We even tried taking turns sitting out in the car with him, but that failed to work to. It was at this point that we decided we could not take him to a public place again. Our only option was to rely on my parents to keep him when ever we needed to go somewhere. It was hard to get used to the fact that our outings would now have to revolve around my parent's schedule, but it was the only choice that we had.
In just those few short months since my son had started taking his medication, our life was anything but normal. One thing that didn't help the situation was the fact that my ex-husband (who also has ADHD) would not accept the fact that there was anything wrong with our son. Because of this, he refused to give my son his medication on the weekends that he had visitation. Now we had this poor little boy who was bouncing back and forth from being medicated, to not being medicated. It kills me to say this, but my son was a mess. Feeling like total failures and not wanting my son to continue living this way, my husband and I decided that it was time to seek professional help.
We quickly found a therapist in the local area and began taking my son there. And even though it was expensive to do so, we knew that this was what he needed most. Before the first appointment I contacted my ex-husband and gave him all the information so that he could meet us there should he decide to go. Not that it was any surprise to us, but he never came to the appointment nor did he ever call me to find out how things went.
At this first appointment it was confirmed that he did indeed suffer from ADHD and would benefit from individual therapy. Immediately the therapist set him up for weekly visits. After we were done talking to her, we were taken to see his new medication management nurse (simply known as meds management). She immediately took him off the medication that our family doctor had prescribed him. What we thought was a drug to treat for ADHD, was actually an anti-depressant, which may also be used to treat for ADHD. In some cases anti-depressants can actually make the symptoms of ADHD much worse, as was the case for my son.
Within a few weeks of my son being on a new medication, his behavior started to improve. With much relief, we were finally able to take him with us again when we went somewhere. He still liked to run away from us when he had the chance, but after a few embarrassing moments of him being attached to one of those toddler leashes and he soon stopped. It was great to know that things were no longer being knocked off of shelves and that fellow shoppers were no longer at risk of being pummeled by his small fists.
Once again it was time for school to start back up. Over the summer we decided that my son might benefit from going to a private school. Though it was more expensive, it was more structured and offered all day kindergarten eliminating the need for daycare. When school started, my son was very excited about it and made friends quickly. For now things were going great and we couldn't have been happier.
Every week for several months, we made the trip to the therapist's office. Slowly my son's symptoms began to improve and we were able to decrease his therapy to once a month. During this entire time my ex-husband was not involved in any aspect of his therapy. If anything, he was the cause of my son having to resume his weekly therapy sessions once again.
It was around this time that my son no longer wanted to visit his father. In fact he seemed down right scared about it and would scream and cry when my ex-husband would come to pick him up. My husband and I knew that something was horribly wrong, but my son wouldn't tell us what it was. His behavior when he came back home after the weekend was very erratic. Once again my son became uncontrollable. Due to my ex-husbands drug and alcohol problem, I had been trying for the last few years to get his visitation with my son to stop. Unfortunately, the courts didn't agree with my way of thinking.
One day while my son was in therapy, he revealed to his therapist the reason for not wanting to visit his father. About the time that his fears began was the same time that his father got mad at him, threw him on the couch and punched him in the stomach.
Now that we knew what was causing his fears, it was time to take additional action to help protect my little boy. The therapist immediately called Social Rehabilitation Services (SRS). They are the agency that takes care of child protective services. My husband and I also decided to take my ex-husband back to court to try to get his visitation stopped once again, or supervised at the very least.
As it turned out, SRS proved to be worthless. They sent one of their agents out to visit with my son while he was at school and we only found out about it one day when my son casually mentioned it to us. SRS never even bothered to contact us to let us know what the outcome was, so we decided to called them ourselves. We were told that the only thing that they did was contact my ex-husband by phone. We were also told that no action would be taken based on the fact that my son was so young and there was a possibility that he was making it all up. This was so unbelievable. After working our way up to the highest person in charge at the SRS, the outcome was still the same, nothing was going to be done to protect my little boy.
Now most people would have just refused to allow their child to go for visits. I have actually done this on several occasions and was later told by the judge that if it happened again, I would be thrown in jail. This would only result in my ex-husband getting custody of my son, and I would never let that happen.
Later on after the paper work was complete, we proceeded to court. After several months and several more trips to court, my ex-husband temporarily lost visitation with my son. Though this was the result of his continuous failure to supply the court with information requested by my attorney, and not for the abuse of my son, we were still happy. I only write of this part because my ex-husband has and continues to be a key factor in my son's decline in behavior and his regression in therapy.
We were very eager to see how well my son would do now that his father was temporarily out of the picture. Even if it was only for a short time, this was better than nothing as my son's behavior was only continuing to decline. I am not one to believe that children should be separated from their parents, but in the event of abuse and neglect (even medical neglect for that matter), the child is better off with out their parent.
By this time my son's behavior had gotten so bad that we really didn't know what to do anymore. His tantrums had now turned into rages and some times they were even violent. One time in particular that I remember was when he kicked me in my stomach when I was eight months pregnant with his sister. He had also become quite destructive. He would use what ever he could find to poke holes in the walls of his bedroom, his mattress, and the wood frame of his new bunk bed. At times he would be in such a rage that he would bang his head on the walls, he would try to strangle himself and once even jumped off the top bunk in an attempt to hurt himself. Normally by the time his rage had ended, he had no memory of what had just happened. This is what scared me the most.
He had also started being very mean to animals. He was always trying to hurt our two family cats who he had previously loved so much. He had once been mean to my sister's dog and several times to my parent's cats. One time while he was visiting my sister, he beat a frog to death with a baseball bat.
To make matters worse, my son was once again having problems in school. Not only were his grades dropping again, but he was picking on the other kids, yelling and screaming in class and occasionally having crying spells as well. Trips to the principal's office were happening almost weekly. The school that he attended still used the paddle, so you would have thought that the threat of this would have been enough to keep him in line, but it wasn't
Feeling overwhelmed and stressed out, we didn't know what to do or where to turn for help. People that we talked to (other than the professionals) all claimed that we were being too hard on him. If only these people could have seen life through our eyes, then maybe they would have a better understanding of what was going on with my son. This was not a normal child that we were dealing with.
After nearly a year of therapy and having changed medication a few times, we felt like we had reached a dead end. My son was no longer making progress and his therapist seemed as if she had run out of ideas and the motivation to help him. We knew that there was something wrong with him, but we had no clue what we were dealing with.
Finally the nurse who was in charge of my son's meds management suggested that we seek treatment at a different facility that would be more capable of helping us. She told us that we could have him tested to see if he would qualify for what she called the Severe Emotionally Disturbed waiver (otherwise known as an SED waiver). With this waiver, my son would have a wide variety of services and not just therapy. The waiver would also provide him with a state medical card that would cover all medical expenses that our insurance didn't cover. I knew in my heart, that this is what my son needed.
Within a week I had gotten an appointment to have my son tested for the SED waiver. Normally it takes about two weeks to get the results back to see if you qualify for the waiver. With my son we found out in just two hours. This should give you a pretty good indication of how bad thing really were. This was very depressing for me, but at the same time I was also very relieved about it because I knew that we would be getting the help for him that he so desperately needed.
A few weeks later my son had a new therapist. From the first time that we met her, we could tell that things were going to improve. My son and his new therapist hit it off better than he did with his old one. Building a good relationship with your therapist is necessary for successful therapy to take place. We were also placed with a new meds management nurse as well.
By this time we had gotten another diagnosis. We found out that not only did he have ADHD, but he also had Bipolar. After reviewing all of the symptoms, this now made perfect sense. I knew that my ex-husband had ADHD and was also manic depressive, which I learned was just another fancy name for Bipolar. My son has most likely inherited his mental health problems from his father.
Our fist meeting with our new meds management nurse proved to be a positive one. Not only was she very informative, she was also open to any suggestion that we had. At this time she thought that it was best to keep him on his current ADHD medication, being Concerta. She also gave him a new prescription for an anti seizure medication called Gabitril. Anti seizure medications are often used to help treat the symptoms of bipolar.
A few weeks after starting therapy with his new therapist, we had our first of many meetings. These meetings are known as "wrap around" meetings. It was at this time that we found out about the variety of services that would be available for my son and for the family as well. It was now time to meet our wrap around team.
The most important person on the team of course is the therapist. We learned that not only would she be providing therapy for my son, but she would also provide family sessions. These sessions are time set aside specifically for the parents to update the therapist on their child's progress, ask any questions they may have, or for the therapist to give advice, tips or strategies on how to deal with the symptoms the child may be experiencing.
Second in line would be his meds management nurse. Not only does she prescribe medications, but she also communicates with the therapist and the family to make sure that the medications are working as the should without any side effects.
My son was also provided with a case manager. This person is in charge of gathering any needed information; helps take care of any forms and paper work that needs to be done. She is also in also the one in charge of scheduling the wrap around meetings and the treatment plan meetings. In our eyes, the most important thing provided by the case manager is the time spent with my son. She visits with him for about an hour and a half each week. During the school year she visits him at school and does home visits during the summer. These visits are often spent working on anger management and coping skills. They also work on other things like how to behave while out in the community and different strategies to help keep him on task in the classroom.
My son was also assigned an Attendant Care Worker. This person does much of the same community based things that the case manager does, with the exception that he gets my son for a longer period of time. To me, I think it is very similar to what you would get from the "Big Brother's and Big Sister's" program. To this day, my son really enjoys all the time that he gets to spend with his Attendant Care Worker. During the school year, he is also provided with an additional Attendant Care Worker that works with him in the classroom as well.
We were also assigned a Parent Support worker. The role of the Parent Support worker is pretty self explanatory and an invaluable asset to any parent dealing with a child that has ADHD/Bipolar. My Parent Support worker provides us with up to date information about medications, discipline strategies and classes on a variety of subjects. She comes to our house once a month to check on how things are going. She will also provide transportation to appointments and meetings if needed. She is even available just to talk if things aren't going well and I just need someone to talk to. Over the past two years my Parent Support worker has probably been the best form of support I've had so far.
It has been almost two years since we made the switch to his new therapist. Our life still seems like a roller coaster ride at times. My son still has drastic mood swings that are only made worse when his father is in his life. Over the last two or three years, his father has been in and out of his life. He has never been involved in any of his therapy or wrap around meetings, which has not helped any. His father is very uneducated about ADHD and Bipolar. I honestly believe that if he knew more then he might have a better understanding of how to parent his son.
About six months ago my son's behavior started to decline rapidly. It seems like each time this happens (something commonly known as cycling), a different behavior comes out. This time he actually started hitting me. The first time it happened, it was just a hard slap on the arm which was totally unacceptable. Each time that he has a melt down (as I call it) his violence towards me gets worse. Now when ever he has a melt down, he comes at me with swinging fists. He tends to go for my face, and once he starts punching me, he doesn't stop until he is either restrained or his rage is over and his energy is spent.
Sometimes I see some sign that he is on the brink of a melt down, such as clenched fists, heavy rapid breathing and just a certain look in his eyes. Other times there is no warning at all and it just happens. It is for this reason that I have had to learn to act fast for my own protection. Restraint is about the only thing that really works.
Along with hitting me, my son also likes to throw things. He has thrown a dinner plate at my husband's head which shattered and flew everywhere. He has also thrown other things such as an alarm clock, picture frames and toys. Things have gotten so bad that anything within his reach becomes a weapon.
I stress to those that doubt, we do discipline our children. My son is the second youngest of six children in a blended family. With our other kids, we were able to stick with your typical everyday discipline that most parents use. We constantly have to change our discipline strategies with my son. We have tried every form of discipline we could think of, from grounding, yelling, positive reinforcement, sticker charts, and sad to say, even the good old fashioned spanking. What will work one month won't work the next month. You name it; we tried it, with the exception of using the belt. That is something that I just don't believe in doing. We have had to be very creative in our techniques. Most of the things that we try fail to work for very long. We try to keep my son as busy as we can as this seems to keep his melt downs to a minimum, but there is only so much that we can do. We have had him in psycho-social summer camps and he has also played on a few different sports teams. He seems to enjoy them, but unfortunately they do not go year round. We would love to get him in an anger management class, but we haven't had any success finding one for children as young as him.
With his recent decline in behavior, I started doing some more research to see if there was something different that we haven't tried yet. Upon reading different articles and from talking to other parents of children with ADHD and Bipolar, I learned something new. Often times when treating a child that has ADHD and Bipolar, the medication used to treat ADHD, can actually make their Bipolar symptoms worse. This is exactly what I thought was happening with my son.
Again we made another appointment with his meds management nurse. After reviewing his symptoms, his nurse thought that there was a pretty good chance his ADHD medication (at the time he was on Stratera) was indeed making his symptoms worse. She decided that it was probably best to take him off the Stratera and treat only for the Bipolar.
The medication that he is currently taking for his Bipolar is a mood stabilizer called Abilify. Since the medication change, his behavior and mood swings have gotten better. The fact that his biological father hasn't been in his life for over three months now also helps improve things, but I'm sure that this is only temporary.
Something that most people don't know is that the symptoms of bipolar for an adult are totally different than that of a child. This may be a big part of the reason why there is so much conflict on the subject of juvenile bipolar. It is commonly confused with ADHD because so many of the symptoms of juvenile Bipolar are similar to those of ADHD.
Something that I have realized I must come to terms with is the fact that this is a life long mental illness. It can and does affect my son and our family, as well as his social and academic life. This unfortunately is something that goes with the territory and can't be changed, only improved upon.
If you or someone you know has a child with Bipolar, I urge you to get educated and get all the professional help that you can get for your child. Many times children with Bipolar are left untreated and if their symptoms are severe, it could possibly lead to suicide. If the child is having problems in school, you can always request an Individualized Education Plan (IEP) or a 504 (which is similar to an IEP, but is mainly a behavioral plan based on a medical diagnosis). We tried to get and IEP for my son however, he did not qualify. We were on the other hand successful in getting him a 504 which has really helped him out academically.
Over the past three years the most important thing that I have learned is that education is the best weapon you can have when dealing with a child that has Bipolar. The more you know the better off you and your child will be. No matter what happens or what you're told, never give up on your child. There have been plenty of times that I've just wanted to throw my hands up in the air and walk away, but I simply can't give up on my son. He deserves the very best for his future. My son is too young to fight this battle on his own, so I must battle for him. He is the reason why I continue my journey.