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My entire 30-year career has been spent in the healthcare field. Rooted in western medicine. I grew up blindly trusting doctors and medical professionals. This represents my view on why parents seek alternate medical advice and “cures”.
A transformational observation
During my late teens, doctors insisted the best place for my great grandmother was a skilled nursing facility. I watched the staff place my great-grandmother at one of those U-shaped tables, alone and facing the wall to eat her meals. Oh, and I couldn’t dare sit with her, lest the state health department swoop in and issue a citation for breaking the nursing-home-dining-room-force-field (or so I’d been told). I learned that regulations, or more so how they were interpreted, defied common sense and basic human decency.
Doctor knows best
My first daughter was born, and it was hard. Not the kind of typical-new-parent hard, but the kind of hard that makes you think something is just wrong. 4 hours of pure screaming every time she ate. Not sleeping, EVER. Screaming and writhing with every diaper change. Speech that came and subsequently went. Pediatricians and specialists insistent the root cause was just ‘colic’ and she’d grow out of it. (Spoiler: She is now a teen and amazingly autistic) I felt like an over-reactive new mom.
Save your hate mail
I’m not looking for a vaccine debate here, and if you think that’s what I’m saying, you’ve missed my point.
I believe in the dangers of unvaccinated people. There’s an implication for public health: babies, schools, hospitals and nursing homes where exposure can be deadly. At the same time, I acknowledge there is a group of vaccine-injured that neither the government nor medicine seems to adequately address.
Like many parents, I got sick and tired of the condescending pat on the head.
My point is that western medicine’s way of patronizing parents who are desperate for answers causes them to look elsewhere. Furthermore, to look to Jenny McCarthy for medical advice. She’s been vilified for her views (and I can’t say I’m a raving fan). But, if you really think about it, Jenny McCarthy is a mom. Using her platform to acknowledge moms cast aside as “over-reactive” by pediatricians everywhere. Perhaps, as mom, she’s no different than me -someone sick and tired of condescending doctors who offer no solutions, advice, or ideas about what comes next. As parents, all we want is to love and do what’s best for our kids.
Paternalism built the lunatic fringe
Getting medical advice from non-medical people can be dangerous and can bring out the lunatic fringe. There’s a group, for example, who prescribes bleach as an autism cure. Sickening, right? But I would argue that the medical community’s inability and unwillingness to acknowledge parents in a meaningful way for too many years indirectly caused this. Indeed, caused parents to take SOME action, seek acknowledgement, and answers. To equate science with conspiracy. Sadly, medical paternalism created some of these unintended consequences.
Doctor’s way or the highwayWestern medicine's unwillingness to acknowledge natural supports like diet, the importance of sleep, or Naturopathy for so long has created "supplement syndrome" including modern day snake oil salesman who claim to have the… Click To Tweet
Medical doctors told me that a gluten and dairy free diet will give my daughter scurvy. I was left to decide what was worse- what doctors thought of me, or watch my child with visible stomach pain when she ate foods she was sensitive to.
Comparatively, we were assured vision therapy is a waste of time. At age 3, doctors asserted she’d always be learning disabled no matter what I did, so she didn’t need early intervention. This sage advice came less than 10 year ago, not in the dark ages.
Medical research needs to prioritize and legitimize natural supports. Undoubtedly, the medical community should be the voice of what is helpful, proven and safe. They need to support and acknowledge parents by providing safe and sane solutions. There is common ground to be found between a gluten and dairy free diet and some deadly “miracle mineral solution.”
I’ve often read the sentiment from the #actually autistic movement that looking for a cure equates to a desire to wipe neurodiversity off the map. I embrace my daughter’s neurodiversity. By no means am I seeking a cure. I was, however, utterly unequipped as a new parent to best support her and all that comes with autism. Talking to other parents helped and still does.
Neurodiversity, frankly, is the easy part – the hard part is figuring out how to support the myriad of possible co-existing conditions: ADHD, food sensitivities, intellectual disability, sensory processing disorder, gross and fine motor difficulties, moderately impaired speech – and for many, the list goes on and on.
The reality is, I didn’t know where to start or what to do first. I know I’ve made more than my fair share of mistakes along the way. However, had I listened to the developmental pediatrician, I would never have sent my kiddo to school, Girl Scouts, tae kwondo, nor fought like hell to get the school to help her learn to read. Never would I have insisted they make accommodations to help her be successful.
Why I do what I do
My blog highlights parent-tested interventions that work side-by-side with medicine. Helping parents understand the pros and cons through our lens. We highlight common sense, practical solutions for those who need to adapt to a special needs lifestyle and openly share our experiences. I want to give parents the confidence to talk to their medical doctors (and each other) about supports that will help every child live their very best life. We are simply ordinary parents with special kids – and it’s OK to ask for help so we can lead an extraordinary life.
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The biggest “cure” lately seems to be CBD oil but there are so many makers and very little accountability. It makes me nervous to hear parents talking about it and recommending it for their autistic kids.
I’m new to all this autism stuff (5 kids with my fourth on the spectrum) and so far it’s been a headache with providers (except the psychologist- she’s great) Therapists and doctors are not as helpful as I’d assumed with the diagnosis. I feel like we’re out on a ship at sea without guidance! 😳
Thanks for your comment! We’ve been at this for awhile (my kiddo is 12) and I STILL feel like we are on our own in many ways. I do a lot of research, and tend to try things that more natural. There is very little research (I have found) with kids and CBD oils, although, like you I’ve read that parents have found some success… but I have not yet taken the plunge. Keep in touch with other parents (find your tribe) — I know that’s where I’ve learned so much!
I told the Dr’s the same thing about my daughter – they assured me she slept when I could attest she did not. And when it came to shots, I was told to be wary if she didn’t cry – and when I pointed for YEARS that she never cried while getting her shots, isn’t that concerning? The same people would say she was “brave” or “strong.” Hello! She is only 6 months, 12 months – she doesn’t have those traits yet! I agree – I was also far to trusting in “the professionals” when those professionals really were only good at colds and coughs. I appreciate your message – it really is so confusing out there you don’t know who to trust. Nice to have some grounded ideas to help!
So, true about the medical professionals, at least in our experience. M.D. is not more important than M.O.M – we do know our kiddos best!