The following letter is my second attempt to write to Dr Meyer, my local health professional . I went to see him a couple of days ago. As well as getting my asthma script renewed, I wanted to discuss with him, whether I should have my son reassessed as his initial psychiatric assessment re having Aspergers had somehow got lost & buried in the system & the system was reluctant to cough it up. This may have had something to do with the fact that I chose not to follow the path or the drugs prescribe for my son by the mental health “professionals” (I can’t write that without the ” at either side – there is definitely an element of sarcasm there).
This letter is the beginning of my attempt to sort out the confusion in my head around my experiences with the mental health “providers” in regards to my son’s initial diagnosis & prescribed “treatment” & the alternative path we chose to take. Until a couple of days ago, I hadn’t discussed my son with any healh professionals for around 8 yrs. I was surprised to find that I became quite emotional when attempting to discuss it with my Doctor. It bought up a lot of long buried pain & confusion, anger & frustration. It left me feeling at a loss as to what to do with it…so….rather than try to sort it into a logical framework, I’m just going to write what comes up around this, as it appears until, hopefully, it eventually sorts it self out.
Part of the issue is that for me, or anyone else to really communicate their needs to a doctor or psychiatrist, requires a lot of time,often at the expense of the patient, or the patients caregiver …i.e, myself. The state provides some free mental health care, however it usually means waiting months for an appointment, then talking to someone who doesn’t know you or your child at all , & is trying to process your needs in as short a time as possible so that they can move on to the next patient. Those who have time to do a better job, charge often hundreds of dollars for their services, and are out of reach of the average wage earner. These issues and more have been fighting for attention in my brain recently. If it was up to me I’d never talk face to face with mental health people or doctors in general, but fire off screeds of writing instead. there is never enough time to say what I really feel needs to be said, or the support as they tend to do their best to stop me before I get started.
My writing at times will be clear & logical, & at other times express the genuine confusion I feel as I try to sort out my often semi unconscious emotions & thoughts. So… I write all this partly for myself – I need to gain clarity & healing, but also because I hope some other parents out there may benefit from my journey.
Dear Doctor Mayer,
re our discussion yesterday regarding my son Zenith & applying for a review of the disability allowance. First of all I just want to make it clear that I never expected that you would make the assessment, in fact I was very surprised when my case manager suggested that, which is why when I repeated to you what you said, I immediately followed that with, but you’ve never even met him so I don’t see how you can do that. You got a bit grumpy at that point, which was the only real feedback I got from you, but actually unnecessary as it’s not me that thinks that but my case manager.
Anyway I didn’t make it clear that the reason I initially chose not to follow the path laid out for my son & put him on ritalin & prozac. The primary reason was that at the time it was suggested, my son’s father was shooting ritalin up his arm once a week. Ritalin that was initially prescribed by those well meaning drug dealers we call psychiatrists. My son’s older half brother was has also been through the full gamut of “professional help” is now an extremely heavy cannibis smoker & also abuses prescription drugs frequently. Some of them are prescribed to them, some of them bought form other people that have them prescribed to them.
I have watched these two gifted & very talented individuals head down a path of self destruction that has not only been extremely damaging to them, (& ensured that are unlikely to ever realise their obvious potential) but deprived my son of a father & a brother. They have both been assessed by professionals as “gifted” & then been given by these same professionals, the means to destroy themselves.
Given the genetic tendancy on my son’s fathers side of the family towards drug abuse, & alchoholism, & having witnessed the influence of the New Plymouth mental teams on my sons brother, I see very clearly that they have never guided him towards mental health & they lack the resources to do so. So I chose when it became very clear that any support my son was going to get at school was dependant on his swallowing the prescribed doses of what was destroying his father & brothers life, to take a leaf out of my fathers book & take my son out of school & do it on my own.
My father was also different, he also had issues at school, in fact they tried to make him believe he was stupid because he didn’t answer questions quickly, he actually took the time to think deeply about things, & when he did answer them his answers were challenging. He spent many many hours sitting in a corner with a dunce hat on his head. But without the “help” of medication to make him fit in, he went on to become the youngest professor of Physics at x University, to then work at NASA for a while, then when he moved to X in Europe where he lived for the rest of his life (partly because of the deeply repressive nature of his home country towards those who think outside the square) he received an award in there for a lifetime contribution to science & maths in that country.
Which path would you take in my situation? To listen to doctors & psychiatrist who trap people in identities around mental illness, & turn them into helpless dependent drug addicts, or someone like my father who had the guts to be himself & be different & do something with it?
The Child psychologist you mentioned is a nice well intended woman, that I know personally from a group we both belonged to. When I mixed with her socially we discussed her grandson who she has frequent care of. My observation is that she is doing her best to make her ADD grandson “fit in” However she will never allow him or support him to have the courage to be who he is & fight for the right & the value in who he is. My son is now back at school, because he’s strong enough & empowered enough to know he has the right to be himself. He can think for himself & make his own decisions about the values & beliefs of those around him. For example he has perceived that kids at school can get away with extremely viscious bullying & personal attacks if they know how to work the charm factor at appropriate times. And adult life is not much different than that. However hes also getting a feeling for where his gifts lie, & learning to cope with his peers. He is doing so well, that while when I first went to the mental health system for help, when he was 6 yrs old -( for help with his severe speech problems – not language, he was saying sentances like “here comes another ambulance” at 14 mths old, just the physical act of speech – his sleeping issues, the huge personality changes that happened after he was attacked at school by a huge island Boy, the fact that he insisted he was an alien from neptune for about 2 yrs etc) – he did have severely disabling conditions at that time. But I can’t say that about him now. He used to also be absolutely hyperactive & manic quite often, & totally wear me out, but he has calmed down a lot & become more resourceful in meeting his intense need for stimulation. He’s extremely intelligent & needs a lot of mental stimulation, which as a burnt out solo mother iIhaven’t been able to provide.
I took him home, I gave him space for his brain to relax, I allowed him to grow up as slowly as he needed to , to have time to process the challenge of being who he was in this society. I was rejected by my family, I was rejected by my friends, when I made the decision to take a different path than the norm, we were totally on our own. I couldn’t even get the respite care I was entitled to because the hospital & the psychiatrist couldn’t/wouldn’t release his records to me, & the system provided a paediatrician to assess him that wasn’t qualified to do so, (but was vey quick to judge my decisions regarding my son, but never to ask any questions regarding why I made those decisions, that without the help he needed to be able to speak & communicate at school, his mental health was deteriorating rapidly & alarmingly. He didn’t know him, He had nothing to measure him by, no past references, but I did. ).
Nobody ever had an intelligent discussion with me about the fact that my son’s father was a drug addict, that they were trying to make us follow a path that had destroyed him. In fact they refused to discuss it at all. I was shocked when I was not given, not offered even when I asked for it, speech therapy, or therapy for the intensely negative effects that bullying had had on him, they only offered us drugs. That’s why it’s ridiculous to me, the pretence at doing a good job that happened in your office yesterday, your indignation you expressed – because the Psychiatrists only spent half an hr with my son, they had never met him before, the one that diagnosed & prescribed for him initially never saw him again. They didn’t know him at all. They didn’t even try to get to know him. They didn’t even care, they just clipped their ticket to make sure they got paid. & by getting him on a prescription, they ensured they continued to get paid in the future when the script had to be renewed.They didn’t care that here was a kid who had had a fucking mental/physical breakdown. Who used to speak perfectly & lost that. They let us down hugely & I was left to pick up the pieces on my own. I’m not going to pretend that they were there to help because they weren’t.
My son speaks perfectly again now, & it was only love that healed that. Love & Harry Potter books. he has some self esteem, he has some self respect, he knows that although they tried to tell him in his early years at school that he was below average, that he’s brilliant at maths. He has taught me way more than I could ever teach him in the time I’ve spent with him though. I was with him 24/7 for years, because when he was at his worst, at his most damaged, no one wanted to have anything to do with him. But I’ve watched him grow up into someone I have deep respect for, & that I’m very proud of. He chose to go back to school this year. He’s made friends, he’s independant. He still has the huge challenge of being different but he’s handling it in his own way.
I talked with my son last night about the disability allowance, & the assessment that is required to receive it as well as support in the form of computers etc from Autism NZ, they had offered us a top notch computer, but it requires the assessment, but my son said, who cares about the computer, (we have one that’s adequate) he doesn’t want to go back there to that world, & neither do I. The cost spiritually outways the benefits.
I came to see you to discuss it, to try & work out whether it was a good idea for us. I hadn’t discussed my son with any health “professionals” for close to a decade. That’s why I was emotional, because by not taking the given path, we walked a very very hard road. But we’re survivers, we’re coming through this healthier than we were before. I can’t go back there now, to those mental health professionals. Even for myself, I have never applied for a disbility allowance for asthma before, even though WINZ always suggests it when I pass through their offices in between jobs. & if I’m really honest I only have asthma because I choose at times not to listen to my body. The truth is that some of the biggest populations in the world survive perfectly well without dairy & wheat, just think China, Japan, Thailand etc their traditional diet, even Africa too, does not include Dairy or wheat, I can cure my asthma when I want to, I have done many times, I’m just lazy, & sometimes I just get sick of the constant comments & pressure from people who want me to eat what they eat – it makes me feel worse but it makes them feel better when I eat their diet.
So I’ve decided that I won’t apply for “disabilty” allowance either, perhaps this time I will just stick to what works for me, the benefits are huge when I do, increased energy, vitality, clarity of thought, improved communication, I even look younger on that diet. All you have to offer me is convenience. A couple of puffs & you don’t have to think about it. Everyday people try to get me to eat their diet, every day people try to get my son to think their thoughts …why????
I can cure my throat if I really want to, I know how to, I know what works for me and my body, it’s just a matter of applying it. I’ve done it many times before. The only thing that really stops me is the flack that people give me for being different than them. For not doing what every else does. For not following the status quo. I wish you all the best, because I think it’s time for me to be firmly on my path, not waver from it again. (Which means I wont be back). To follow the simple truth of listening to what the bodies telling me. Like with my son, I listened to my instincts, I did what felt right. I forgot about the experts & I trusted my own inner guidance. I trusted what I saw my dad do that worked for him, what my mum did that worked for her (they both died ages ago).
I’m writing this letter because sometimes I feel really angry with “health professionals” I feel they avoid the difficult questions & take the path of convenience regardless of the ultimate cost to their patients. But I don’t communicate it. There is a place for medicines, I don’t dispute that, but I think that were deeper questions asked & supported, real answers & solutions are available that can really help people with many conditions. But they are not usually funded by the state, & people really suffer because of the simplistic reliance on medications.
There are doctors that have done brilliant research, but that research is not getting through to mainstream medicine. There are people like Milton Erikson who have achieved unbelieveable results in the mental health field, but again mainstream mental health is archaic & outdated, & continues to apply what doesn’t work & doesn’t heal but pays the biils for the providers.
I live in hope for a world where some of the brilliant advances (some of which actually, refect very ancient knowledge as well) being made today actually filter down the the mainstream & are available to the general population. I’ve observed slow & subtle shifts in awareness around health over the last decade, finally for example antibiotics are being used more responsibly, where they are actually needed not just handed out as lollies.
I want to be now where people are passionate about health, passionate about mental health, not fixated with illness. defining, describing , classifiying illness.
I want my son to be passionate about life, passionate about his interests, passionate about growth and real wellbeing. I don’t want to be held back anymore by the smallminded people. Lifes too precious
I am always disappointed when I see a doctor, or pyschiatrist at the low quality of what they have to offer me, of the meaninglessness of the interaction, & the lack of anything really genuinely useful, really healing, really helpful. I can’t believe that everyone believes in & supports such an impotent system. I always go away wishing I had stayed away. I always go away wishing they had more guts, I go away wishing I had nothing to do with it ever. Unless of course I cut my leg off, I’ll be back then.
If I go back to see you again as a doctor, I’m going to keep feeling impotent, dis empowered, disconnected, stupid, I can’t do it anymore, even if the asthma kills me, I have go a different way.
/ that’s as far as I got, probably won’t send it, but just keep working through the stuff as it arises until it reaches a point where I feel satisfied. I find myself really wanting to communicate with my doctor even though there seems to be no point. I deeply long for a health system that is saner & really has something to offer the people that pass through it seeking help. I want to be part of the process that makes positive changes in the system to improve the exprerience for those that follow..(but how??? is the question. Perhaps one day i will write a book about it all.
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