Friday, July 25, 2014

When Does a Holistic Treatment Just Plain Not Work?

Holistic health services  are especially important to many in the autism community since the allopathic model has so little to offer.   There are literally thousands of testimonies of people who have seen huge improvements or complete recovery from autism due one holistic health modality or another.  Herbs, homeopathics, nutrition, chiropractic care, acupuncture are just a few.   Many of them have real benefits and are much healthier approaches than taking drugs or getting surgery. I am grateful that they are there for us and that we live in a country that allows practitioners to practice their craft and patients to seek out their help.

 In spite of the benefits,   I have a one huge beef with the holistic health world.  People in this field are extremely reluctant to ever admit that their approach doesn’t work for everyone.  I’ve got news for them: Nothing works for everyone.   Like many autism parents, we have tried several holistic approaches to help our daughter.  It adds up to a hell of a lot of time, money and energy, but we feel that we’ve got to try.  With all the approaches we have taken, I don’t think any have had any long term effects.    Some worked in the beginning and then stopped having any effect.  Many just never worked from the start.   With a couple of exceptions, I don’t think we were purposefully cheated or scammed. These treatments were effective for many people; they weren’t for us.   No one has ever fully admitted that their treatment, for whatever reason, just didn’t work or stopped being effective.  A holistic practitioner’s response tends to fall into 3 categories.

1)      Naomi’s condition actually gets worse.  The practitioner’s response is almost always “It has to get worse before it gets better.”   I have found this to be the most overused phrase in the holistic health world.  First of all, it doesn’t have to get worse before it gets better.  It sometimes gets worse before it gets better, but I find this is relatively rare and very temporary.   Never have we have seen Naomi’s condition get worse, and then find significant improvement.  At best she gets worse and then goes back to where she was before we started the treatment.  That is the regular ups and downs of having autism and we have witnessed them whether we are following a particular holistic health protocol or not.  Getting worse is not always a good sign, and I’m tired of it being responded to that way.

2)      Naomi’s condition shows no change.   This one is most commonly met with denial.  “Oh no, she wasn’t using spontaneous speech like that 2 weeks ago. “  “Um, yes she was.  She wasn’t using spontaneous speech in this particular building 2 weeks ago, but now that she’s been here every day she uses spontaneous speech because that’s what happens when she is comfortable in the environment. “  I imagine that a neurotypical kid may be similar.  Shy and quiet when he’s first in a new environment and more likely to speak up as he gets more comfortable.   It is not an indicator of an effective treatment. 

Another  response I hear is “I can tell that he eye contact is better.”  This phrase sets off my BULLSHIT detector more than any other.  Naomi has always had good eye contact, (at least on her terms).   I first brought Naomi to a speech pathologist  when she was 13 months old.  She told me “You don’t have to worry about autism because her eye contact is very good.”  Needless to say, that wasn’t the case.  Now, when a practitioner tells me that she knows I’m wrong about improvement because she’s seen her eye contact get better, I know that practitioner is desperately grasping at straws for a reason I didn’t waste my money.  It just plain didn’t work.

3)      The condition gets better.  In this case they are more than happy to take the credit and wear it proudly.  I suppose they should.  After all, that’s what we came for.  Sometimes they deserve it.  Sometimes, I’m pretty sure it had nothing to do with their treatment, it was just a fluke.  There have even been a couple of cases where I haven’t followed through with the advice, so I know the improvement had nothing to do with the recommended course of action, but they take the credit without asking about the follow through.   When we see results, when their particular modality ceases to help us, or she improves and then regresses, we’re back to denial.  It feels like the improvement is more about their ego than it is about the person’s healing. Maybe this is why they are so reluctant to admit it when things don’t work.   They feel the need to defend themselves and the modality.  The  common response is to put it back on the parent.  You haven’t done it long enough, you haven’t been patient enough.  It needs more time, more money, more energy, more commitment.  You’re focusing on the wrong things.  You need to forgo other modalities, other therapies, other health experts and double down on your commitment for this to really work.

When I hear these things I am mentally transported back to the time before Naomi’s diagnosis.  Many people - professionals and lay people - came up with flippant explanations for her lack of development.  Some said that she wasn’t talking because of my high strung nature (rings of the refrigerator mother theory.)  Others claimed that she didn’t talk because she just didn’t need to.  I catered to her every need so why should she?  Some felt that I should focus on her gains rather than her failings.  After all, she had good eye contact right?   In the end, my sense that something was wrong turned out to be correct.  Ironically, when I tell people in the holistic health field about this they generally roll their eyes and say “Why don’t they listen to the mothers?  You know your child best.”   Somehow the belief that I know my child best doesn’t hold up for holistic health practitioners when I tell them Naomi is not responding to a particular treatment they believe in.  Suddenly, this mom just doesn’t know up from down anymore.

So after this experience, why didn’t I learn to trust my instincts when it came to treatments?  I guess I wanted to believe that the holistic practitioners really knew best, that their treatments would work, that I just had to put in a little more time, a little more effort a little more sacrifice and it would all be worth it.  In the end, my sense that these treatments just weren’t working turned out to be true.

I’ve been through enough now that I know not to second guess myself.  When I think we’ve given something a fair shot, when my bullshit detector goes off, when  I get told she’s doing awesome, and I know she’s doing terribly, I cut and run. I can’t prove that something wouldn’t be beneficial in the long run, but there’s just not enough time, money and energy to go that far with everything.    Sometimes a holistic treatment just plain doesn’t work.  Each of us has to use our judgment and move forward.

Thursday, July 17, 2014

They Won’t Do It; They Just Won’t

 This post is not about autism, but a reflection of the medical system that is so inflexible and dismissive of the people it is supposed to help.

Years ago, while doing a self-breast exam, I found a lump.  It was small, but nonetheless, it was there.   I was working for a chiropractor/nutritionist at the time.  He explained to me why, a mammogram may not be a good idea.  Basically, if you have a malignant lump in the breast tissue, the body surrounds it with placenta that makes a barrier to the rest of the body.  The pressure that is applied to your breast tissue during a mammogram can cause damage to this delicate barrier and therefore increase the chance that a malignant tumor will metastasize.   He recommended a theramagram and a sonogram instead.  “If need be, it should be operated on, but no needle biopsies, and no mammograms.  Leave it in, or take it out, but don’t mess with it!”  This made sense to me and I decided to go with it.

  I found a doctor that did thermagrams.  The results were good, but not unquestionably good.  There were a couple of areas he wasn’t sure about.   Because I had been wearing a seat belt, he thought the areas in question had a higher temperature from the seat belt’s friction.  The specific areas that I was concerned about looked good.   I wasn’t discouraged, but I wasn’t convinced that I had nothing to worry about.

 So I went to my OBGYN who referred me to a surgeon.  I called the surgeons office and said “I do not get mammograms, but I would like to see the surgeon.  If a mammogram is required, please let me know now so that I can save both of us the hassle.  Please do not let me take a half day off work and pay for an appointment, just to say you require me to get a mammogram.”  The office made the appointment for me.  Guess what happened?

Yep!  With complete disinterest in my thermogram results and complete dismissal of my concerns about pressure to the breast tissue, the surgeon came at me full force with mammogram advocacy. 

“Can I just get a sonogram first to see if it is necessary?”  I asked.

 “It doesn’t give us enough information,”  she answered.

I wasn’t going to convince this woman that I should have a choice in this matter.  So I stopped arguing with her.   I took the referral and went home. 

I called the “Women’s Breast Health Center”  which I had been referred to, and asked about a sonogram with no mammogram.   I’ll spare you the long version of what happened, but ultimately, the answer was “No.” 

I called many other health centers and their answer was “No.”

I couldn’t help but notice the irony.  If I were pregnant and wanting an abortion I would have my choice of women’s group strongly  stating “Don’t tell women what to do with their bodies!!!”  Yet here I was, simply wanting to get a sonogram without a mammogram and I couldn’t find a soul to help me get this basic service.  I decided that I would go with my thermagram results and hope for the best.

 Then, someone called me at work.

“Hi, it’s Nadine from Dr. Jones office. It looks like you haven’t gotten your mammogram yet.”

“I don’t get mammograms.”

“I thought that after talking to Dr. Jones, you agreed to get a mammogram.”

“No, actually, I didn’t.  I just stopped arguing with her.  It became very clear to me that she wasn’t going to see things my way and I wasn’t going to see them her way, so I just took the referral and said “Good-bye.”  I never agreed to get a mammogram. “

“Well you know you are risking your life by not following her advice.”

“I am more than willing to get a sonogram and no mammogram.  That should let me know if I am risking my life or not.” 

“They won’t do it.  They just won’t.”

“Well, then maybe ‘they’ are the ones that are risking my life.”

I never got the mammogram.  In the end, I was okay.

10 years since the above mammogram war; It had been 8 years since my last OBGYN visit   Yesterday I went to see her again.

First the medical assistant came in.  I did not have a lump in my breast this time, but I am 43.

“Well be giving you a referral for a mammogram.”

“I don’t get mammograms.”

Then the doctor came in.

“Well be giving you a referral for a mammogram.”

“I don’t get mammograms.”

At the end of the appointment the doctor said “Is there anything I can do to convince you to get a mammogram.

“Why can’t I just get a sonogram?”  I asked

"A mammogram gives us more information. “

“Well, seeing that I won’t get a mammogram wouldn’t it be a better idea to do a sonogram and get some information rather than getting no information at all.

"They won’t do it.  They just won’t.”

There’s that phrase again.  They won’t do it.  They just won’t.” No one explained to me who they” are, and why ‘they’ are so hell-bent on me getting a mammogram.  Why they are so inflexible and why they are so threatened by a woman who wants to make decisions about her own body.

“They won’t do it.  They just won’t.”

Yet, we should trust them.  We should believe that they know what’s best for us and for our children.  We should just believe there are no corporate interest, special interests nor an unwillingness admit when they are wrong.  They only owe you explanations when they meet their purposes.  Otherwise they say “They won’t do it; they just won’t.” 

Forgive me if I don’t find that a satisfactory explanation.

Forgive me if this gives me negative impression of the medical system.
They won’t work with me; it is up to me to work with them.

Well, I won’t do it; I just won’t.

Saturday, July 12, 2014

What She Wants More Than Anything

We went to the children’s museum today.  Naomi is generally more interested in the other children she sees there than the exhibits.  “No touching, no smelling,”  I often repeat.  We always visit the planetarium.   The large dome gives her sensory input that she seems to enjoy.  Today we were in the lunchroom and looked down from the balcony to where groups of children were participating in the Museum camp activities.  They were doing the typical games and recreation you often see at camp: balloon toss, blowing bubbles, Simon says, teamwork tasks etc.  Naomi couldn't take her eyes off them.  
This is?.... She asked.  
“It’s camp.”  I told her.
“Can I go to camp?”  She asked earnestly.
“No sweetheart, you can’t.”
She kept watching.  Sometimes following the movements, other times grunting in frustration at not being able to join.
“Can I go?”  She continued to ask every few minutes.
“No.   I’m sorry.”
“This one have a green tag.  Can I have green tag?”
“Ummm.  Not right now, but I’ll get you one.”
“These ones are wearing red shirts.  Can I have red shirt?”
“You have one at home.  You can put in on when we get there.”  This is not what she wants and we both know it, but I don’t know what else to say.  It’s the best I can do.
We see groups with matching T-shirts and name tags at the park, recreation areas, restaurants and museums.  Naomi watches them.  I know that more than anything she wants to be one of them.

This type of thing kills me.  We come across it often.  She wants to be a joiner.  She wants to have friends.  She wants to participate.  But she can’t.  We’ve tried the integration route.  Dance classes, gymnastics, even the child care room at the fitness center.  It doesn’t take long before we are told, it’s not working out.  Her lack of ability to follow directions or understand social boundaries makes her a poor fit for this type of thing.  If she didn’t want it so badly, it wouldn’t’ hurt so much.  But she does.  She’s not happy alone or with her mother all the time, but her disability makes those her only options.  She got to a special needs camp for a week this year.  It was more than an hour drive away and it was relatively expensive, but we made it happen.   It was something, but it left her far from satisfied.   It left me far from satisfied too.    I suppose the grass is always greener from a different perspective, but it feels like this whole autism thing would be so much easier if being around people and part of a group were not the things that she so desperately yearned for.  If she were the stereotypical introvert, I could accommodate that.   But I can’t accommodate what she really wants: Friends;  Little girls that let her be a part of their play and the ability to interact with them successfully.   I’d do just about anything for her to be a part of that.