Twinkle Theme by Mike B.

This week we experienced a new high in Mike's life. He participated in the Elementary Solo Music Festival here in Wichita, KS. It's been a long year, but Mike did great during his performance on "Twinkle Theme" on his String Bass. He really enjoys his playing, though practice can be stressful as he wants to get it perfect.

Here's a video of the performance from Thursday. This is his first time with accompaniment and a tuned instrument, so it made it that much better.

With all the ups and downs that we've experienced, we were hesitant to get Mike started on an instrument this year. After much discussion with his strings teacher, deliberation among ourselves, and agreements with Mike, we decided the Bass would be a good start. It's big enough he can't throw it across the room, durable due to size, and the strings are far enough apart for his fingers/hands that are fairly good size for a fifth grader.

It was a slow start and mid-year he wasn't going to continue on next year, but he has come around. He's practicing a minimum of weekly and has been accepted into the Arts Magnet Middle School here in Wichita. He is very excited for next year.

More to come on this school year, but wanted to share our high achievements.

The Future...a Thank You

This week, I saw the future in the eyes of Michael. At 11-years old, he has moved beyond himself into the world. A year ago, I would not have thought this possible. Now, I know anything is.

Thursday, with Michael's youth leadership group, we traveled to the state capitol to fight for mental health services state-wide. As we divided, Michael was the lone youth in our group. I watched him stand and talk about mental illness with two state senators. I watched him explain our shirts, Stigma, and mental illness. I got to take in no complaints in the ride or all of the walking.

It's hard to believe, why we were there and where we have come from. It's been a rough road with many bumps, bruises and scars along the way. We've both struggled and yet we thrive. We are in this together.

Loving people in Michael's life is what has made this possible. People who believe that he is somebody, not just a disorder that he was labeled with. The teachers that Michael sees at school every day, have made him want to live and strive to be his best. The friends of mine and his that always ask how life is going, remind him that others care. The adult role models that Michael has at church, remind him that he is someone. The workers that stand beside him and push him through the things he resists the most, have given him the backbone to which he can stand tall. The therapist that has been there through the good and the bad, the rock to which we cling, the knowledge to which we rely, and the roots to which we can grow.

To all who have been around, this week was dedicated to you and serves as a reminder to all parents of children with Bipolar: The hard times will not last forever. The light at the end of the tunnel, may come and go, but it's not a train. Love will endure.

Lessons along the Way

I've learned a lot in our four year journey. Some have been helpful, some have been discouraging and some have been random bits of knowledge.

• always keep a notebook (or folder) of everything pertaining to your child's health and school ;
• if you're not happy about your service, tell someone;
• nothing works the same for every person;
• there is always a chance your child with be the first with a side effect;
• more than likely, someone else has been down the path you are walking and they have knowledge useful to you;
• everyone benefits from a good therapy session
• you are still the parent, even when your child is taller than you;
• when your child is out of hand because of his/her disorder, remember, it's the disorder not your child;
• don't take it personal (much easier to type than believe in the heat of the moment);
• a child will have more behaviors with a parent that he/she is comfortable with, then anyone else (and that's the way that you want it)

Of all the things I've learned, the fact that I need an open mind, open arms, a loving heart, and patience is what I cling to the most. My child has never wanted to hurt me, deep inside. He loves life and knows that I am here for him. My love has never swayed. I know that if it weren't me walking this path, my child would be alone. To this...I cling.

Mental Health Services

After much paperwork and many appointments, Michael was shown to qualify for the Serious Emotional Disturbance (SED) waiver through Medicaid. This allowed him more services than we would have ever thought possible.

Michael would begin with a Case Manager that would coordinate all of his services. The particular one that we began with was awesome and stayed with us for more than a year. We're now on our fifth. Some have been better than others and some definitely communicate better with me than others.

Michael would also have Attendant Care. These persons would work one-on-one with Michael to achieve goals established on his Plan of Care. They worked in the school, home and community to build skills, redirect inappropriate behaviors and support him emotionally. He had several different workers at many different times depending on his stability over the years. He currently has no attendant care.

Michael attended Psychosocial Group (PSG), a gathering of children, in this case, aged 6-18 years old. PSGs assist in a peer group setting with improving social skills, positive peer relationships, problem solving skills, promotion of health, and leisure time skills. Unfortunately, with the variances of ages in this group, we did not have success as more behaviors came home than what he was being treated for. In talking to some professionals since then, this is not uncommon as the kids can get into a I can be worse than you mentality to one up each other the following week.

I also received services through the community mental health services through a Parent Support Person (PSP). My first attempt at this was unsuccessful as there was only one contact with me made. The second attempt a couple years later was very successful in that I found a wonderful PSP who had children with similar issues and had already traveled the path we were going down.

Michael's use of services has waxed and waned depending on his stability. As we are in good times right now, he sees his Case Manager every week and is now a member of a Youth Leadership group for Mental Illnesses.

The Hospitilizations

It was a day off of school at the babysitter's house. I was off to work as any other day. Then, my office phone rang. Michael was out of hand and threatening people with a knife.

I was on my way home. Something was more than wrong. We couldn't handle this. I thought to myself, "How could I let this happen? How can I not handle my own son? What have I done?" When I got home, the babysitter was holding Michael away from the other children.

I tried to talk to him, but the explosions resumed. I took over holding him as he was still ready to jump for the knife. Every time he settled; I would begin to let go and he would go again. We called the doctor and left a message. By the afternoon, not much had changed. The doctor called back, the suggestion, take him to Prairie View in Newton for inpatient treatment. After eight hours of hell, we were off.

I held him while the babysitter's husband drove us up there. The closer we got, the calmer he got. When we got there, he had calmed totally. Lots of papers to fill out, questions to answer and people to meet. I would be staying with him on the children's unit. The workers were nice. Michael had gone into his shell and was behaving himself.

We were there for five days. I spent my days attending meetings for him, meeting other parents on the unit, and educating myself on what we were going through. Michael did great the entire time there (a bit frustrating, but they said it's pretty normal for a patient's first time). They adjusted his medications, taught him coping and social skills, and rewarded him for good behavior.

It was the final day when I spoke with the Social Worker and learned of the community mental health services in the area where we lived. Several appointments were made and we were off, knowing more services were around the bin.

Our second hospitilization was a year later. Things had gotten worse again. We had been at the Psychiatrist's office and Michael was refusing to get in the vehicle and put his seat belt on to return to school. He began to get very physical and evern with strange adults around he could care less about hitting and biting me. This time, we called the ambulance to transport.

This time, the hospital workers saw more behaviors from him and I didn't stay. He was there during a school week and attended classes along with working on his homework from school. In addition, he had the classes that he worked on the year before too. He was pretty depressed this time and found many reasons to be defiant.

I hadn't seen much change in him from admission to the day of dismissal where he threw a chair at me. Unfortunately, Prairie View had a new doctor that didn't appreciate my knowledge and it was getting close to Christmas. So, against my desires, he was dismissed and sent home.

It was not but a week later, that he was wanting to kill himself and had a well thought out plan of how to do it. We called the police as one of his workers came by to help. We were off to the hospital again by ambulance.

This third time, behaviors were coming out that they had never seen. They were seeing the hurting child crying for help. A child that was struggling with how to live his life and control himself. I believe the workers pushed on the doctor this time as well as my not giving up. Michael needed someone to fight for him and I was there to do it.

The Medicines

The doctors understood. I was correct, something wasn't right. After the checklist and the family history, we knew we could possibly be dealing with a child that was Bipolar in addition to his Post-Traumatic Stress Syndrome. Where to begin though...

Michael had been seeing a therapist for several months to help him through the trauma he had already experienced in his short life. She, too, agreed something wasn't right. Something more was possibly wrong.

The decision for meds for him was a tough one. An eight year old on medication, something can't be right. I thought about it though and debated with myself. We couldn't go on living this way. I had left the abuse behind to keep us all safe. I didn't need for it to be from him now.

So the long trip down the road to stabilization began. We began with Seroquel hoping it would be a long term help as even though his body was larger than the average kid, it was still only eight years old.

The Seroquel didn't stand on its own for long as the homicidal and suicidal ideations came along. An eight year old with a plan to kill. Scary...

We have tried many medicines since the beginning and still have to adjust regularly due to growth spurts. Here is a list of some medicines we've tried and our results.

Seroquel - worked well; wore off as Michael aged
Depakote - worked well; wore off as Michael aged
Wellbutrin - seemed to work well for awhile, needed something stronger
Zoloft - did not help with depression/suicidal ideations
Trileptal - made ADHD-like, could not even focus on his soccer game
Geodon - did not work
Invega - when started at a higher dosed caused him to be almost comatose, at the lower dosage seems to do well
Trazadone - works well for helping to sleep, hasn't had any Night Terrors since starting
Abilify - tried at earlier times in life with little success as higher dosage seemed to cause agitation, seems to work well in current combination of medications
Lithium - adjust as needed for therapeutic Lithium level around .9

Our Journey Begins

It had been a rough first six years for Michael, but things were looking better. We were on our own. We were safe from the harms of the past and looking towards the future.

Something wasn't right though...

In addition to his horrible nightmares, Michael was having more issues than normal when being told no or when plans changed. This was something more than a child needing discipline. These fits went on and on for hours. Things were thrown; people were hit, kicked, and bit; it was a nightmare for those around, especially his younger brother. And when he was done, he would sleep and wake up with no memory of anything. He didn't have many friends (at least that would spend time with him outside of recess or school). He didn't always have the energy to do stuff like a normal first or second grader. He was always saying he was worthless.

Then there was the more manic state. He would talk to no end having to be told to breathe; he believed he could do and be anything (higher than what a normal child would think); and we couldn't try and stop him from doing something as it would send him into a frenzy.

It was time to see the doctor and get some help.