Hard News: Miracles just rate better, okay?
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I can fully understand when the therapists tell us that we are pretty unusual in mostly following their advice, and that most families just don't do anything they say, and pretty much leave their kids to themselves. I can even see the appeal of it.
At our end of the disability world, I think it's common for parents with autism spectrum kids to go through at least a spell of real passiveness -- you get tired, it's hard.
And to be honest, sometimes parents who are really active are chasing hopes and doing things that maybe even aren't in their children's interest, so much as a way of avoiding accepting and loving the child they have.
But you, Ben, sound like a champ to me. Keep it up.
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I take it you are not one of those peple who would pay to have the accupuncturist attach nice-smelling waddding to the ends of the inserted needles.....and set fire to it ?
Probably not -- I'm the kind of person who turns a blood test into a three ring circus and the whole damn Ring Cycle. :) Then again, I do look back and am bemused that self-inflicted alcohol poisoning on a daily basis used to be my idea of a good time, so what the hell do I know?
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Okay, the nuclear anecdote.
I told this story to a Skeptics conference, so I should do it here.
Our older son, Jimmy, rotated late in the birth canal and sustained a large haematoma on the right side of his head. The doctors said later it wasn't that far off killing him.
He spent a week under lights in an incubator, but the follow-up care thereafter was negligible. We were told that the lump would calcify -- but not what that would mean.
It was bad. He seemed to be in pain a lot, and would often paw the side of his head. He had terrible "colic", and couldn't be cradled in arms -- only held upright over the shoulder. He couldn't breast-feed on his bad side.
I'd done so much walking around at night carrying him on my right shoulder that my back went out, so I went back to the osteopath (who I'd seen the previous year, after my first night on a new futon that was supposed to fix things culminated in a sleeping neck injury, and me going into shock and being taken to hospital in an ambulance at 5am).
In the waiting room, there was a notice about infant osteopathy, which described several of the symptoms we'd been seeing in Jimmy, who was about three months old. I asked the osteo about bringing him in, and he did a treatment.
This was cranial osteopathy -- the preposterous, gentle fingertip-pressure-only treatment that has no scientific basis. Fortunately, I didn't know that at the time.
My osteo referred us to a hospital clinic run by a guy called Stuart Korth, where he had two sessions.
The second one was quite a scene. There were three people with their hands on him, and Jimmy was yelling the house down. The whole room felt hot and I was wondering what was going on. A "major shift", apparently.
I'll never forget what happened after we stepped out the door. Jimmy was cooing and chuckling, which was unusual. We got on the bus home, sat down and he settled down, cradled in Fiona's arms. And then he breast-fed on his "bad" side.
This had never happened before.
We have photos of our laughing, happy baby from that day.
Things improved rapidly thereafter. The big calcified lump dissolved.
I can't explain what happened, and knowing what I do now, I doubt I'd have gone there. But I'm truly glad we did.
I swear, I'm not exaggerating what took place. The Skeptics and I agreed on "Interesting and worthy of further exploration" as a form of words afterwards.
I don't credit the theory and I've never been able to rationalise this. I just stopped trying.
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At our end of the disability world, I think it's common for parents with autism spectrum kids to go through at least a spell of real passiveness -- you get tired, it's hard.
It sure is. Particularly with a newborn in the house, the late nights have been killing us until recently, when faced with the high attention needs of the firstborn early in the morning. I'm not sure if high attention needs aren't pretty normal for a 3.5 year old anyway, but because he's special, I tend to feel much worse about neglecting him. It's affected everything in my life, work, play, relationship with wife and friends. I think I'm only realizing now just exactly how much stress we've been under - the first year I was running on adrenalin, and determined to make light of the burden.
And to be honest, sometimes parents who are really active are chasing hopes and doing things that maybe even aren't in their children's interest, so much as a way of avoiding accepting and loving the child they have.
It occurs to me a lot. As a computer programmer, it's tempting to treat the condition as a 'bug', and to make a mental dissociation that when I'm playing with him, I'm 'debugging' his problems. I'm sure that's a self-defense mechanism far more than a useful metaphor.
But with respect to love, I have to make a sad confession - I have found that I love him all the more for his condition. Having been forced to put a lot more effort into him than I was ever expecting to, I think the bond is far tighter than it might otherwise have been. My worry is that I don't feel the same way towards the second child, and it's tempting to think of him as having been produced "for the first child", in the belief that the forced socialization of siblings would be beneficial to him. Hopefully this is false, and I just haven't bonded to the second one yet on account of how easy he has been by comparison.
But you, Ben, sound like a champ to me. Keep it up.
Cheers, you're not so bad yourself. I found PAS extremely therapeutic during the first traumatic year - nothing like having an argument about something abstract to take the mind of a concrete and ever-present worry.
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But with respect to love, I have to make a sad confession - I have found that I love him all the more for his condition.
There's nothing sad about that confession.
And now you've made me all weepy when I have work to do.
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I don't credit the theory and I've never been able to rationalise this. I just stopped trying.
Sounds almost miraculous. This is, I think, the bizarre thing about alternative medicine - sometimes it has incredible successes, and that can justifying endless failures.
The closest thing I've had to that is having a back problem cured by being thrown down in a martial arts class and falling awkwardly. At the time it was nasty, and I was quite bitter on the instructor for throwing me like that. But over the next couple of weeks a persistent lower back pain I'd had for decades dissolved and has never reappeared. I can't explain it, and I would certainly not recommend it - most of accounts I've heard of awkward falls resulted in severe injuries - fractures, concussions, ruptured organs and dislocations.
And now you've made me all weepy when I have work to do.
Me too. I think I'll take the boy for a bike ride, that always cheers me up.
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I've had Moxabustion. (I'm assuming that by 'wadding' you mean mugwort, anyway.) It feels lovely. Not on needles though, as little cones burned directly on my skin. Obviously the underlying 'theory' is bizarre, but the effect is much like a nice warm pin-point massage.
<chuckle>
I think it likely that this is for the most part what was described to me by a friend who was looking for a solution to persistent acid reflux.
What fascinated me at the time was the sheer theatre of what was described to me; because to my speculative (but informed) understanding, theatre is part of the placaebo effect.
As I psychologist I keep reminding people that as long as a brain is a physiological thing then a placaebo effect is a physiological event with potentially predictable consequences. Researching this is challenging particularly from an ethical point of view; does the placaebo work better if delivered by a doctor as opposed to a nurse ?
The sum of 100 plus years of psychotherapy research and practice ? Letting people talk about themselves in a structured way to a concerned stranger makes them feel better – but we are still not sure why. Sound familiar ?
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What fascinated me at the time was the sheer theatre of what was described to me; because to my speculative (but informed) understanding, theatre is part of the placaebo effect.
My acupuncturist, who was also a GP, gave us (and I mean 'gave', not 'sold') moxa and taught my partner where to place the cones so we could do it at home.
Before I hit acupuncture, I'd had two years of 'conventional' medical treatment, which had culminated in large-dose painkillers for chronic pain, and anti-depressants at double the standard dose despite a psychiatrist confirming that I wasn't suffering from depression. I was extremely skeptical about acupuncture when I started, but prepared to give it a try because conventional medicine was making me sicker. After about nine months I was drug-free except for a melatonin supplement. I had less pain and more energy than I'd had since my daughter was born, and I don't care why.
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I had less pain and more energy than I'd had since my daughter was born, and I don't care why.
Nor should you - It is however the duty of professionals to make some attempt at knowing why - in order that these things are applied appropriately and work when they should without undue risk or unreasonable cost.
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But with respect to love, I have to make a sad confession - I have found that I love him all the more for his condition.
Not sad, that is wonderful that you love him for who is is, and how he is. It's called humanity.
I just hope you are finding support for you too. There is a thing called chronic sorrow that parents of children who are 'different' from a so-called norm, can be affected by, and it can come and go.
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A problem with "Alternative Medicine" is that over time, as the genuine cures and treatments contained within it (think "willow bark" for example) are adopted and subsumed by the official kind of medicine it slowly becomes more and more dominated by quackery - it wont get better over time, only worse until eventually quackery will all that will be left
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It's affected everything in my life, work, play, relationship with wife and friends. I think I'm only realizing now just exactly how much stress we've been under - the first year I was running on adrenalin, and determined to make light of the burden
I know some friends in a similar position to yours who seem to be on a similar time-frame -- after a year of stress on everything, they're starting to emerge again. It's good to see.
Our stress came much later -- with meltdowns nearly every day, intractable problems at school, etc. Our younger son was by far the major source of stress in our lives, which is a hard thing. Stuff's way better now, and I feel pretty good about our choices.
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I know some friends in a similar position to yours who seem to be on a similar time-frame -- after a year of stress on everything, they're starting to emerge again. It's good to see.
A social worker at the hospital gave me some excellent advice that might explain this. Right in the middle, when we didn't know what was wrong with Marcus, he was just having seizures, didn't know whether he would live or die, whether he had some terrible innate condition like leukemia, and had to watch him in a medically induced coma for 5 days, she told me that it was very common at a time like this to withdraw to only the closest people in your life. She suggested not to be ashamed or embarrassed about this.
I have been unwilling until quite recently to even talk about it online- when you asked after the baby when he was born, I could only say "The glass is half full", by which I meant "Things are pretty fucked, really, but at least we have a healthy boy who will live". His recovery has been truly amazing, but I don't like to hold too many hopes at this early stage. He is very much behind his age in some respects, but interestingly in some others he appears to excel - he has an extreme talent for memorization. Brains are very mysterious instruments - we speculate that the nature of his condition may have actually developed some talents that would in most children remain latent until a much older age. He could speak well before he could sit.
Our stress came much later
I guess that the difficulties with your children were not apparent immediately? I recall you speaking only recently (a year ago?) of receiving a diagnosis for the second child, which was very upsetting to hear but explained a lot. I was certainly sad to hear it - it seemed unfair that such a thing should be visited on you twice.
Stuff's way better now, and I feel pretty good about our choices.
That's been good to see, from afar.
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I just hope you are finding support for you too. There is a thing called chronic sorrow that parents of children who are 'different' from a so-called norm, can be affected by, and it can come and go.
I've known about it all of my life - my aunt is severely intellectually handicapped as a tragic result of the extremely rare PKU syndrome (especially tragic because the damage is caused by normal food that the conscientious parents are feeding to the child) and the sorrow never left my grandmother. But there is ironic luck in this - probably as a direct result, my father is a child psychologist who specializes in autistic and other special needs children, working with GSE. I have had great support from my parents, and it was he who pushed for us to make the ACC claim (being patently aware of the limits of what GSE can provide by comparison), and this claim led to an enormous amount of support.
But no, I don't really have any professional help for myself yet. It's a very difficult path to even begin down. I guess I could rationalize and say that for several years I have prioritized being "strong" over being "happy". It seemed necessary at the time. I've only recently realized I was depressed, although others clearly had realized.
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I guess that the difficulties with your children were not apparent immediately? I recall you speaking only recently (a year ago?) of receiving a diagnosis for the second child, which was very upsetting to hear but explained a lot.
I think it was more like four or five years ago. I'd already worked it out, but Fiona was upset at the time. What happened was that the kid we'd thought was "normal" turned out to face -- and present -- in some ways greater challenges than his brother.
There's really nothing like being guilt-tripped by "experts" because you don't want to keep your child in school any more. There's one particular person I'd cross the street to avoid.
I was certainly sad to hear it - it seemed unfair that such a thing should be visited on you twice.
It's actually not unusual, given autism's genetic dimension. You just get a slightly different flavour with each kid. (And you inevitably start inspecting yourself for flavorsome elements ...)
But, yeah, I really have to write that thing for Humans ...
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There's really nothing like being guilt-tripped by "experts" because you don't want to keep your child in school any more. There's one particular person I'd cross the street to avoid.
At some point you have to trust your instincts. I've pushed to have Marcus go to kindergarten, to promote socialization. It seems to have had a very, very beneficial effect. But there was a good chance it could have been a very negative experience - I had to satisfy myself that the people in the kindergarten were up to the task. I've been pleasantly surprised at just how far they've been willing to go, given how poorly funded they are.
It's actually not unusual, given autism's genetic dimension. You just get a slightly different flavour with each kid. (And you inevitably start inspecting yourself for flavorsome elements ...)
Tell me about it. Am I autistic? Maybe I'm just good at hiding it...even from myself.
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Am I autistic?
Ben - this is a question many many family members, parents, siblings, grandparents etc ask themselves on the autism diagnosis of a family member, and as they learn more about the condition. Or they ask themselves is x (relation) autistic?
I heard Tony Attwood talk in Wellington a couple of weeks ago and he describes a continuum that we are all on but those with autism clustered a little more towards one end (and ASD, depression, anorexia, OCD, addictions etc could all have a genetic relationship). He also says autism is infectious - the more you know about it the more you notice (allow) your own autistic traits.
It's everywhere, so embrace it don't fight it. As Temple Grandin says, if it wasn't for autism, people would still living in caves talking to each other.
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Yup, it seems a very human trait. In some pursuits it seems almost compulsory.
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I just hope you are finding support for you too. There is a thing called chronic sorrow that parents of children who are 'different' from a so-called norm, can be affected by, and it can come and go.
Certainly, but I think that's a sub-species of a guilt trip you can lay on parents, full stop. Guess what -- it's OK to be so damn tired and/or anxious you want to lock yourself in the bathroom with a bottle of gin. It's OK, dare I say it, to sometimes just want to stuff your kids back up your snatch and ask for a refund when they're being douche nozzles.
In my (admittedly limited) experience, sometimes the best thing you can do for parents is give them permission to be bloody human, and then you can start dealing with shit when you're not loading yourself -- and your children -- with utterly unrealistic expectations of perfection. After all, being a parent doesn't come with a manual, an off switch or time off for good behaviour. You've just got to do it 24/7, and as often as not "good enough" really is good enough.
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Certainly, but I think that's a sub-species of a guilt trip you can lay on parents, full stop.
Perhaps so, certainly post natal depression is well known even for perfectly healthy children.
Guess what -- it's OK to be so damn tired and/or anxious you want to lock yourself in the bathroom with a bottle of gin.
It's OK to want it, but it's not OK to do it. That's the bit that's hard to get used to.
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It's OK to want it, but it's not OK to do it. That's the bit that's hard to get used to.
Definitely -- but its much easier to deal with when you get yourself to the place where you say "OK, there's nothing wrong with feeling like this but what do I do with it that matters". I know its not exactly the same thing, but some times I really really want to break my sobriety. That's human -- and beating myself up for, well, being an alcoholic human being, is no damn use at all. Having myself in a place where I can deal with it, ask for help and (most importantly) not run out and get loaded and do terrible harm to myself and others is what I need to do.
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Chronic sorrow is not about guilt. It's about acknowledging that things can be tough and unfair at times. You can be on top of things and then something like a transition time arrives when other kids are moving on and yours isn't.
But I agree it's about how you deal with it. I recommend treats, but not self-destructive ones.
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I swear, I'm not exaggerating what took place. The Skeptics and I agreed on "Interesting and worthy of further exploration" as a form of words afterwards.
Or, the unconcern of the medics you noted meant that was something that would indeed resolve itself in time if left alone. Cranial 'osteopathy' is a nice sciencey sounding term for futzing around with the bones in a an infants skull, because you can.
This exemplifies what is wrong with Chirpractic and Osteopathy, the cracking of bones because they can in the service of discredited magic thinking because they can and because nobody has got around to stopping them.
The reality is that governments don't want to stop them because in places with public medicine they save the government money by soaking up a large number of the worried well, those who are too impatient to wait for their natural healing processes to the job or to change the damaging lifestyles.
Which again would be all fine and dandy, except that some of the things they do are dangerous, they overstep their abilities and knowledge and being already deep in the Woo they peddle all manner of stuff including anti vaccination propaganda and they are wont to tell people to come off their meds.
If they stuck to bad backs and stiff shoulders I would have no problem with them, trouble is they don't.
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Or, the unconcern of the medics you noted meant that was something that would indeed resolve itself in time if left alone.
Which it wasn't after three terrible months. We were never even advised there might be a problem. In this respect, the NHS fell rather short of the notice on the osteopath's wall, which largely described the symptoms we were seeing.
(Also, you might have done with a "That must have been terrible and I don't envy you, but ..." there. Just saying.)
I've been reluctant to mention this here, because I figured I'd be patronised. But what I described is my fairy strong memory of what happened. I checked the details with my partner tonight.
Our experience, of swift and sustained relief of distressing symptoms, did not seem to be that of something that would have got better anyway.
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I'm not trying to argue with your recollections of the event Russell. I'm only pointing out that with an n=1 you cannot know what you are asserting was the only possible explanation. You may indeed find it highly suggestive but I would suggest that this is coloured by your obvious relief. Our youngest had very bad colic for the first 4ish months of life, her little stomach would go rock hard after every feed and she would scream until we could manage to use a syringe to squirt good old fashioned gripe water down her throat. This did not always work however and then I would wander around with her draped over my shoulder screaming in my ear until she would finally belch and with a sigh drop off to sleep. This frazzles the nerves something shocking.
So I have some inkling of how this seemingly miraculous healing must have struck you. I am also a scientist and know that the conclusions you are trying to draw from it are completely and utterly unsupportable by this tissue thin 'evidence'.
For one thing you are assuming that this was the only possible therapy, that it was entirely safe (your son was fine this is not evidence of its safety overall) or that it would have got better on its own. Babies are both more delicate and much tougher than most people realise and time is a great healer for them.
I suspect that part of the difference in our cases is that our difficult baby was our second and thus we were more experienced whereas this was your first where you are finding it all out as you along. Our youngest was a bit of a trial but it was okay since all the rest of it was a fully known situation filled with tested techniques honed on the eldest.
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