Charity Marie Blogs!

When It All Seems to Fall Apart

My last post was in September and looking back, that was about two months after admitting my daughter for mental health issues for the second time, and is the time everything started to unravel and fall apart. My ten-year-old daughter struggles with some very difficult mental health issues and has for almost six years. It started with her seeing things in the closet. At the time, it just seemed like an extreme terror that she would outgrow. Now, five years later, I admitted her to an inpatient clinic again. Just in time for Christmas. While children around the world are waiting for Santa, my daughter is in a mental health ward battling demons no one can see and can't really understand.

She's been diagnosed with Major Depressive Disorder with Psychosis and Paranoia. These are really big diagnoses for such a young child. Unfortunately, based on my research, I'm starting to suspect that the diagnosis will be upgraded, this time to Paranoid Schizophrenia. As she develops and grows, so too does her illness. My husband and I have a dark sense of humor and to cope with this, we joke that she's "bat-s*** crazy" and while irreverent, it's not too far off. She can't help it and the worst part is seeing the pain, fear, and at times complete terror in her eyes as this illness continues to take a stronger, deeper hold.

Let me be clear. This situation, I'm finding, is exceptionally rare. Less than 1/60th of diagnosed schizophrenics will be diagnosed with early onset and she falls into the category of very early onset, which is less than 1% of that number. There's a 2-1 ratio of males to females, making it even rarer for her to have this. I've spent a year hoping and praying that this wasn't really happening. Hoping by some slim chance it would be wrong. I've fought against it in every possible way, looking for alternatives and coming up with the same result every time.

The tipping point this time was Thursday. I was at work when my son called. I could hear my daughter, hysterically screaming in the background. I have come to know that heart-breaking sound all too well in the past two years. It's a combination of terror and hysteria and despair that no parent should ever have to hear from their child. And I was 30 miles away. I quickly grabbed my things, calculated the distance and if I drove 85 I could probably be there in about 20-25 minutes if the 5:30 rush hour traffic cooperated. I worked via phone to help bring her down a little bit with the coping strategies we've built together over the last five years.

Thankfully, at this stage, I'm still the only person she truly trusts, and we've worked to build upon that. Heaven help me when she no longer trusts me, then we'll really lose control. Our 70-pound chow mix dog has become her steadfast protector and companion when she feels unsafe and scared. But at this point, she was so scared that she was standing in the front yard crying. I worried about the neighbors getting involved with an irrational child in a full-blown psychotic episode. Images of cop sirens and an ambulance filled my head as I tried to nudge my car faster through the traffic, taking chances I normally would never take. Would someone call CPS again and report us for neglect or abuse? That would be the third report in five years.

What had set her off was a prank my 12-year-old son had played on her by calling our house phone. When it wouldn't stop ringing for whatever reason, my daughter became convinced that someone was IN the phone and going to come through it and kill her. By the time I got home she was fully devolved in a panic attack in the front yard with my son. What's even worse, my autistic son was in a panic attack as well. My husband and I spent the next twelve hours discussing what to do and came to the difficult decision that she's not safe in our home anymore and needed to admit her for the third time in two years. All the possible scenarios that could happen were too scary to even consider.

And so that's what we did last night. Listening to my daughter tell a doctor that she's scared was really hard. I cannot imagine the fear she deals with every day. And it makes me want to hug her and never let her go. Every instinct a mother has for protecting her children gets kicked into overdrive and turned into helplessness when it's something you can't see or understand.

For the last five years, I've lived in daily fear of the future for her. In addition to the mental health issues, she also has dyslexia. Imagine for a moment how life is just from the mental disorders, and then combine with that a severe learning disability that prevents you from being able to read, do math, or write properly. Due to the cognitive issues, she can't organize her thoughts or successfully focus on tasks. So now, in addition to daily fear, hallucinations, delusions, and difficulty with discerning reality, add to that the devastating self-esteem issues, bullying, and an overwhelming feeling of being stupid, alone, and outcast. While everyone else is succeeding and growing, she's stuck at a 2nd-grade level, watching her peers advance, unable to understand why she can't too. She's in 5th grade. Every day, all day, is a struggle for her, from the moment she opens her eyes until she goes to sleep. And then there are the nightmares, and sounds that wake her in the middle of the night that aren't there.

So now I'm struggling to come to terms with the idea that she may never be fully functional and may require a lifetime of support. We may have to physically be there for her for the remainder of our lives. Other children will leave home and build their own lives. We're making plans for her to be a part of ours for as long as we live. Instead of talking about college and careers, we're talking about disability, Social Security, health insurance, and a trust fund for her care after we're gone. Maybe she'll overcome it but so far, the outlook and long-term prognosis is not good. Studies have shown that children with early onset schizophrenia almost never have good outcomes.

It's a brain disorder that can't be cured - parts of her brain didn't form correctly and don't function as they should, therefore medication can only do so much. The youngest recorded schizophrenic was 3 years old. Libby has always had trouble with understanding the difference between reality and fantasy. At two years old she thought Dora was her best friend and lived in the TV. It never occurred to me to think that was different until I talked with other parents who would look at me funny or laugh because their children never did that. It never occurred to me that her inability to potty train until 3 years old was a developmental delay and a sign that something was wrong. Physically she was developing at an above average rate and seemed advanced for her age. I even had one retired teacher tell me to look into a gifted and talented program for her in preschool. And in Kindergarten is when we started to notice things weren't right.

So many little clues that I was completely unprepared for. I didn't recognize. Couldn't recognize. As she continued to devolve more and more. And even now, the little breadcrumbs don't seem to point to a clear path. Is it schizophrenia or am I jumping to a conclusion? Is the fact that ten psychiatrists can't figure out what's wrong with her a warning? Do I listen to my instincts that are screaming at me (as they did prior to her dyslexia diagnosis) or do I hope for a lesser diagnosis that isn't quite so debilitating?

How do I ACCEPT this, whatever it may be? How do I finally come to terms with the idea that my child may have one of the most debilitating mental disorders known to man? How do I make peace with that? I find myself wanting to deny it while simultaneously wanting to have an answer so I can figure out a way to proceed and help her. Acceptance carries a certainty with it. But I fear accepting this will doom her to a lesser life than she might otherwise have if the diagnosis is wrong.

The doctors ask me about abuse, trauma, developmental delays, abnormal pregnancy, possible triggers but there's none of that. At least, not anything obvious. If anything, her clean history is what's creating a barrier to a diagnosis of schizophrenia because it flies in the face of what medical science has come to accept about this disease. Schizophrenics typically develop after 18 and there's usually a trigger. For children, there's usually a trigger and a history that points to it. My pregnancy was normal with the exception that I had hyperemesis gravidarum, which is extreme morning sickness and was prescribed Zofran to control it. I also was very sensitive to the prenatal vitamins and ended up having to get all my vitamins through my diet. So automatically the thought is, did I not get enough nutrition for her? Not enough vitamins? Was it the Zofran, which I have since discovered shouldn't be given to pregnant women but only to chemo patients?

The hardest part is the lack of information. I can't just Google this and find answers or a solution. It's all an unknown. She falls into such a small statistical chance of having this that they literally don't understand it and have no frame or reference or prior evidence to pull on. When I do a Google search for childhood schizophrenia expert, there's no results other than the Mayo Clinic and John Hopkins for reliable information. So where do you go with that? I have reviewed the history of both families and can find no history of schizophrenia or severe mental illness of a schizophrenic nature. But most of my family wouldn't see a doctor if they were on fire, choosing instead to take care of it themselves or just suffer.

The only thing I know for certain is, I want answers, and I will not stop until I have them. Whatever they might be and whereever they might lead.