Welcome to Childhood Made Crazy, an interview series that takes a critical look at the current “mental disorders of childhood” model. This series is comprised of interviews with practitioners, parents, and other children’s advocates as well as pieces that investigate fundamental questions in the mental health field. Visit the following page to learn more about the series, to see which interviews are coming, and to learn about the topics under discussion:
Rossa Forbes is a blogger with an upbeat and decidedly offbeat mom's perspective on the journey of schizophrenia. Her memoir, The Scenic Route: A Way through Madness will be published early next year by Inspired Creations LLC.
EM: How would you suggest a parent think about being told that his or her child meets the criteria for a mental disorder and ought to go on one or more psychiatric medication for his or her diagnosed mental disorder or mental illness?
RF: Before going down that road I would insist that the doctor conduct a thorough medical history to assess whether there is an underlying medical condition, e.g. Lyme disease, brain tumor, or an autoimmune condition.
As it is only quite recently (2007) that the link between psychosis and an autoimmune disorder called anti-NMDA receptor encephalitis has been made, it is possible that researchers are already identifying other antibodies in the blood and spinal fluid with links to psychosis.
Do keep in mind that doctors know very little about how the drugs work or what causes mental illness. The word “medication” (as opposed to “drug”) implies the presence of a disease state that can be successfully treated pharmaceutically. As schizophrenia (the mental illness with which I’m most familiar) is considered by the medical profession to be incurable, in the same way that they consider most mental illnesses incurable, this negates the idea that a medication exists that can treat it.
The drugs are actually major tranquillizers and they are generally effective at dampening psychosis –masking it, not getting rid of it. In the process, these drugs make the person sluggish and prone to weight gain and other side effects.
I know from experience, how hard it is to manage “schizophrenia” without resorting to a prescription drug. I do think it is possible, but I think most parents initially are not in any way familiar with how to do this. Acquiring this knowledge may take years of trial and error, although there are online courses that are beginning to teach these skills.
The big question here is the number of drugs. Too many people in the past have been on cocktails of these drugs. More than one drug increases the number of possible side effects, endlessly confusing the problem of what is a side effect and what is the behavior that is prompting a drug to be proposed in the first place.
I don’t buy the suggestion that managing a mental illness is just a matter of finding “the right combination” of drugs. This advice automatically implies that more than one drug is needed to treat the problem, very good advice from the pharmaceutical companies’ perspective but terrible advice for the consumer.
EM: What if a parent currently has a child in treatment for a mental disorder? How should he or she monitor the treatment regimen and/or communicate with mental health professionals?
RF: Begin by becoming informed. In my opinion, just about no one should be on more than one drug at a time.
It is crucial to be aware that there is a difference between “lowest recommended dose” and “lowest effective dose.” The recommended dose is what the pharmaceutical companies would have your relative on, and therefore what most doctors recommend. To prove that a drug works in clinical trials, the drug companies choose a dose high enough to generate a desired response in the majority of patients.
There are few studies to determine the lowest effective dose in patients. The lowest effective dose is often much, much lower than the lowest recommended dose. For long periods of time my son was on ¼ of the lowest recommended dose of his antipsychotic, and he was fine, even taking a few days’ or weeks’ break in between doses. I think it’s prudent to begin as low as possible. Remember, the behavior that you are seeing is not necessarily related to the drug not being in a high enough dose. I believe that if one is on a drug, the goal should be to eventually be off it or on the lowest effective dose. In order to get to that point (being off or on a very low dose) people have to learn to develop other coping mechanisms. This takes time.
EM: What if a parent has a child who is taking psychiatric drugs and who appears to be having adverse effects to those drugs or whose situation appears to be worsening? What would you suggest the parent?
RF: 1. First ask yourself, is it the drug, or is something else going on?
2. The problem may not be the drug, the problem may be at home or perhaps there is an undetected medical condition, which requires medical testing. Maybe a worsening situation means that the person is showing active anxiety. This may be due more to the home environment than to the drug. How truly supportive are the folks at home? Are they too critical? Are they pushing the person to do things he or she isn’t ready to handle, like a job or a course?
3. My son had adverse effects to every drug he was on, meaning he had unhealthy weight gain, akithesia, etc. yet he stayed on the drugs most of the time. The alternative is to drop the drugs, but then the parent should be aware that they are going to have to tough out the behavior left to their own devices. Without the drugs, they will have no major tranquillizer to give their relative. Are they willing to develop the skills and mindset to ride this out over a period of years?
RF: My soon to be published memoir, The Scenic Route: A Way through Madness, is exactly on the topic of what parents can do to help their relative outside of traditional psychotherapy and psychopharmacology.
Families can be invaluable allies if they understand a few basics about how to help.
1. Be in physical proximity to your relative, not a phone call away. The person needs 24/7 support, not wishful thinking from afar. Things are not “all right” when they are alone.
2. Be on your relative’s side. You are an advocate for your son or daughter, not for the medical profession and its beliefs about him or her.
3. Believe that recovery is not just possible, but probable. There will be long stretches, perhaps years, where your son or daughter will not be very productive, and yet we still have to keep that flame of hope alive. We can do it, but it takes unflagging commitment.
4. Be positive and upbeat in your interactions with your child. They need to know by your words and deeds that you believe in them and their future.
5. Be consistent in your belief. “Practice” recovery. Learn reframing techniques, etc., by reading books or by taking courses such as those offered online by Family Outreach & Support.
6. Feed your relative plenty of literature or novels that speak to the struggle they are going through. (My son enjoys reading Nietzsche, for example). The goal is to help your relative to find his or her “self,” or more realistically, to construct a “self.”
7. If your relative is musical, get him or her involved in music. If it is art, then art. Help them find their passion.
8. It’s really important to make this journey fun! This is where I found all kinds of non-traditional practices very useful. Numerology, for example. The numbers don’t lie. Knowing his numbers helped my son see where his strengths and his weaknesses lay. It helped me see a personality emerge which had been masked for years by dutifulness and then psychosis. It was fun to discuss our respective numbers.
EM: What would you like to say to a parent whose child is in difficulty and who would like to put her trust in the current mental health system?
RF: It’s okay to trust the current mental health system, but only to a point. The current medical system is not targeted to individuals but to populations. Do you want to outsource the work to a system that treats your relative as a commodity or do you want to take on more of the hard, but rewarding work yourself?
EM: Can you tell us a little bit about your journey, and your child’s journey, in the mental health system?
RF: My son, who is now 32, was given a schizophrenia diagnosis in his second year of university, when he was 20. He spent three months in hospital, then close to two years in an early psychosis treatment program. He was hospitalized in total three times by the time he was twenty-five, but hasn’t been hospitalized since.
I began to see the downside of the mental health system early on, but it took me a while to learn about alternatives. The first thing I learned was that to recover, you have to take yourself outside of a purely medical view of mental illness (the mental health system) which I took to mean that relying on drugs and doctors alone doesn’t make anyone well. I learned that from Dr. Abram Hoffer, but that’s also what people say who claim that they have successfully recovered. If ex-patients say this, I figured, then I ought to listen to these people.
My son is still in the process of finding a path in life for himself; he’s on a fraction of a dose of Abilify which he takes “as needed.” He’s been a voice student for several years and is actively involved in musical theater and choirs. Because of our particular living situation, he hasn’t got ready access to part time or full time work, even though he’s conscientious and would work hard if given the opportunity.
So, the challenge that we are all grappling with now is that he’s 32 and trying to pick up the pieces of a life that he abandoned at 20. My husband and I would like him to go back to university and, on his part, he’s understandably eager to start earning money. It’s been a very slow process for him to awaken to his potential, but the growth has accelerated in recent years and it’s been a pleasure to watch him grow.
EM: You’ve written The Scenic Route: A Way Through Madness. What might parents get from that book that might help them?
RF: As it is extremely difficult to give authoritative advice in situations involving mental illness, I felt that my writing a memoir was the best way to help parents – to show, not tell. Parents can enjoy the story, and maybe there’s something in it that rings true for them that they would like to try.
There’s no official roadmap for recovery, everybody’s different, but I do believe that some ways are better than others to make recovery happen. The title reflects the overall message that for most people, there’s no fast track, so, as a parent, sit back and learn to enjoy the ride. Taking the scenic route guarantees us some mind-blowing adventures, allows us to see things from our son’s or daughter’s perspective; we slow down together, we talk with each other more, while having some fun along the way.
Parents, mental health professionals, and complementary healers may also enjoy The Scenic Route because they will learn about several little known healing practices, such as shifting the assemblage point, undergoing Family Constellation Therapy, the Alexander Technique, The Tomatis Method, sound therapy, homeopathy, etc. The list is long.
You could say my son and I test drove these therapies and I wrote the consumer report. (I believe that’s a first in mental health memoirs.) I undoubtedly over-did the therapies, realizing, in the end, that intent, attitude and belief are probably more important than pursuing a particular path, but it was my way of coping, and in doing so, my son and I have discovered greater purpose and meaning in our lives.
EM: Your special area of expertise is being a mother. Can you tell us a little bit about that and what parents might find useful there?
RF: Yes, my special expertise is MOTHER. I’ve known my son longer than anybody else. (I’ve gone beyond the call of duty by carrying him through a ten-month pregnancy!) I’ve paid attention to things about him of which even he is unaware.
The medical profession isn’t curious about the uniqueness of their psychiatric patients. And they are not uniquely well informed on the best strategies that may help recovery. Mothers have an expertise called “knowing their child” and should use this knowledge as an invaluable recovery resource.
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