I wonder if any of you are wondering how Grace is doing? Or Eadaoin, Doireann, or Milly for that matter. Even me. I disappeared for a bit. From this blog anyway.
Life is never short of roller coaster-like. At this point, I have chosen the front car, and I’m determined to ride with my hands up while screaming the entire time. I’m going to be that girl. One may as well truly commit to “the ride” so to speak.
Grace is doing remarkably well. In fact, she is so stable that her psychiatrist is left scratching her head and saying, “I’m not touching anything.” The last time that Grace experienced any psychosis was before she started taking lithium. As Grace has said, “This lithium sure is awesome.” Yeah, it can be. Her psychosis was most evident when she was in the sixth grade. Unbelievably, she will be starting high school in the fall. I cannot believe that I’ve maintained this blog since Grace was in the sixth grade.
We have had zero trips to the Behavioral Health ER since sixth grade. No inpatient treatment since then either. No day treatment. I want to sit back and figure out why in hopes that this might be replicated, but I don’t know if it can be. I think that schizophrenia spectrum disorders are a lot like autism spectrum disorders. When you meet one person on the autism spectrum, you’ve only met one person with one representation and/or experience of autism. It feels almost impossible to generalize their experience to others. So it would seem with something like schizoaffective disorder, bipolar type.
So, why is there stability in Grace when everyone in the field tells me that there should not be? I can only describe factors that might contribute to her stability. I can’t provide concrete answers, but neither can the experts:
1. Grace was diagnosed quickly. Within two months of her first psychotic episode, we had the correct diagnosis. This is almost unheard of. Our journey getting any kind of diagnosis was rather painful, and you can read about the journey here. Nonetheless, once Grace was psychotic, I moved quickly and used the resources available to us at the time. Grace was already in an In-Home Crisis Management program wherein a therapist visited our home as many times as needed in order to help Grace achieve stability. This was one reason I was able to hook Grace up with resources so quickly. We were already in the system.
2. Grace saw two psychiatrists who were not afraid to aggressively treat her psychosis. They also were not afraid to diagnose her with schizoaffective disorder. They wasted little time in trying whatever medications they could to achieve rapid stability. Grace was a rapid cycler during her hallucinations. Suicidal ideation is highest during rapid cycling in people with mood disorders. Grace was suicidal during this phase. This was when she was admitted into an inpatient treatment setting for medication management.
3. I researched the hell out of bipolar disorder, schizophrenia, and schizoaffective disorder so that I could have discussions with Grace’s clinicians about her treatment. Grace saw pediatric psychiatrists. What I discovered is that pediatric psychiatrists knew little about long-term treatment of psychotic disorders in children. They talked about therapy, but they had little understanding of what treatment approach would be most effective. The therapists were of little help as well. No one knew what to do or how to proceed. I had to fill in the gap or no one else would, and that is a heavy burden to bear as a parent.
4. Biologically based mental health disorders are brain-based. So, I looked to treatment plans for stroke patients to get a sense of how people who have lost gray matter are rehabilitated. Many people who have lost gray matter due to stroke return to their lives somewhat impaired but fully functional again. What if this held true for people with bipolar disorder but, more specific, people with schizophrenia spectrum disorders? Schizophrenia is neurodegenerative meaning that white/gray matter is lost due to the progression of the disease. Could the brain compensate for the losses by rewiring itself? How might the brain be encouraged to do this? This was my primary question.
5. The kind of therapy that was clearly the best choice for Grace was skills-based. Due to white/gray matter loss because of the disease progression, Grace’s working memory and, consequently, her executive function skills were diminishing rapidly. Her affect was affected and had become flat. She was also losing ground in her social skills. Milly, her sister with an autism spectrum disorder, had become more socially adept than her. So, through a state grant, we were able to have a therapist come into our home for two hours weekly and do skills-based therapy with Grace. The skills covered everything from breaking down everyday tasks into steps (executive function) in order to accomplish them to more emotionally based skills such as, “When I feel frustrated, what can I do with my feelings?” I made a chart for Grace’s wall that held little cards. On the front of each card was a feeling such as ‘sad’ or ‘bored’. On the back of each card was a list of skills that she could utilize to “ride the wave” of that feeling until it passed. That is one example of a skill–learning distress tolerance. Distress tolerance is so important in managing both the negative and positive symptoms of schizophrenia. Learning coping strategies ties for first place here.
6. Grace attends a school for students with needs that differ from your average student. In fact, this school does have a program for truly gifted students as well. Grace’s program is for students with emotional and behavioral disorders. She was one of six students in her class with high needs. Her school is also very skills-based and uses the Nurtured Heart approach in its classroom management. One of the most important things to remember when it comes to managing biologically based mental health disorders is stress management. Eliminating unnecessary stress is key in promoting well-being. Changing the school environment was an obvious choice although not an easy task at all. Grace’s high school will also be within this intermediate district.
7. Diet matters. For example, caffeine interferes with lithium absorption. Grace, therefore, consumes little to no caffeine. No soda! We are careful with what she eats, and I can’t say this enough–healthy fats. The brain needs it. It’s not possible to heal a brain without healthy fats. Also, sugar is not her friend. Sugar and schizophrenia are mortal enemies.
8. Assume competence. I do this with all my kids. I assume that they are competent and able to do whatever is asked of them until they prove that they cannot. It might look harsh to the outside observer, but, most of the time, they can actually do what I’m asking. It might be hard. They might not like it. It might require ten times more effort for them to do what is a cinch for someone else. But, can they do it? More often than not, yes. This is what I want them to see. Their limitation does not necessarily have to limit them. It might slow them down. They might have to arrive at the same point as everyone else from a different direction, but they, too, can get there all the same. Assuming competence is one of the best things I’ve done for my kids. When they finally do hit the boundaries of their own abilities, then we know where to focus our therapies if that limitation is something that can be overcome. And, there is nothing more exhilarating than watching a person overcome something that they never thought they could.
Assuming competence is what has led Grace to overcome a lot of self-perceived limitations and, thusly, learn to take risks. When a person is able to change their personal narrative from “I can’t do that” to “I might be able to do that,” things change. They are willing to entertain possibilities and try new things. They are willing to listen to other people give them suggestions. Suddenly, when a doctor offers a suggestion, the doctor might be onto something. There is hope. And, ultimately, it is the cultivation of hope that keeps all of us going because we all have limitations in our lives. The presence of those limitations need not rob us of our hope for a good future. Tenacity and perseverance are forged in circumstances just like Grace’s, and she’s got them both in spades, in part, due to her life experience.
Today, she can babysit. She can put on a puppet show. She can problem solve. She also still hallucinates with insight that they are not real, and she experiences hypomania and very mild rapid cycling. She is aware of what it is and requests to take a lithium earlier in the day. There are still bad days to be sure in which she levitates around the house like Creepy Susie, but now she is aware of herself and tries to do something about it. Developing insight is one of the best skills a person can learn, and I am constantly engaging her on a deeper level so that she continues to develop that insight.
Currently, there is no cure for schizophrenia or bipolar disorder. It is not, however, a death sentence. There is hope. Your life and the life of your child will never be the same if this is your child’s diagnosis, but it doesn’t mean that it’s over and done with either. Different doesn’t mean bad. Difficult doesn’t mean bad.
It does make for a bigger life with a lot more twists and turns, but, like I said, I’ve committed to the ride. Front car. Hands up. I am going to enjoy this because it’s my life. It’s our life. And, most important, I want her to love her life as much as I love her.