(first off, I apologize for the length of this post!)The recent
Discover Magazine article,
Autism: It's Not Just in the Head has brought about debate in blogland. Actually I wouldn't call it a debate. Those that feel noble in their assessments--bash it. The rest of us just read it and move on. In this situation I usually find myself withdrawing. Everyone is entitled to their opinion. They have theirs and I have mine. But then I realized that I never come across anyone in blogland who shares mine. They are out there. We just don't speak up. But I have come across a couple of blogger friends who are taking a moment to pause and consider biomedicals. They are overwhelmed and unsure. It is for them that I am outing myself.
As I scanned through my blog I realized that I have left out a critical part of JP's therapy. It doesn't take a rocket scientist to figure out why I my have subconsciously done this. Perhaps it wasn't so subconscious...I tend to avoid debate. I am not here to debate anyone. However, I have decided that if I am serious about
reason #5 regarding "why I blog" than I need to address this issue.
Biomedicals.
Yes, we do them. Yes, I believe in them. And yes, I credit them with a lot of the gains JP has achieved. If you have been a reader of my blog you also know that we also have a verbal behavior program in place. We also have explored PRT, ABA, RDI and social stories. He has speech therapy and occupational therapy. We are doing a developmental soccer program and adaptive swimming. He is getting ready to start a gymnastics class. We are trying a listening program to help with his auditory issues.
Ultimately, JP is a very busy boy! We do and try everything. Some works. Some doesn't. We try it. Give it time to take hold. If it doesn't work, we move on. That is just how life works. That is not unique to autism. That is how any rational person deals with the issues in their life. They explore their options and make informed decisions.
So you might ask how I know biomedicals deserve some of the credit. After all it might have been the other therapies that accounted for the gains. Well, that is true. But his discrete trials did not make him poop regularly. We also spent the entire first year hiring out 20+ hours of home therapy help. (We also did continuous therapy when we were with JP). The next summer we started biomedicals and had to reduce our home staff. Despite the reduction of behavioral hours his gains were phenomenal. And no, he did not grow out of it.
It was obvious that he was more in tune with us. He was feeling better in his body and better able to focus. There is no doubt in my mind that this is where his gains came from. Biomedicals aren't curing him but they are helping him feel better in his body so that he is more receptive to our other therapies. In my opinion it is a package deal. My child needs therapies from both worlds to move towards his maximum potential.
I find myself get very VERY frustrated with my peers within the autism community. There is so much judgment among the families. Some parents are blamed for trying to "fix or cure" their children. Other parents are blamed for not trying to help their children. There is a lot of passion on both sides of the therapy debate. There are well educated and intelligent people on both sides of the camp. Frankly, both sides would earn a lot more credibility if they showed more respect. Their bickering only turns people off. The name calling only makes it harder for the rest of the autism community to look at the issues and evaluate them for themselves. Truthfully, I tried to avoid both groups for as long as possible because they are just way to intense! And that is wrong. My son lost a year of therapy because I was too intimidated to look at a specific therapy because it was portrayed as quackery.
When JP was diagnosed I made it my focus to help him in the here and now. I focused on the behavioral therapies because that is what was out there. That is what the schools tell you about. That is what the developmental pediatrician tells you about. Biomedicals didn't get much air time and frankly they were scorned by these people I perceived to be "in the know". The biomedical families where portrayed as gullible and desperate.
I even found myself judging a fellow parent who was fully pursing biomedicals. She was helping her son and all I could think was she was wasting time and money. This is such an injustice! Our children are the ones who lose out when we fall into that mindset. I can handle if you think I have gone over to the dark side but what I can't handle is that there is a child out there with chronic diarrhea or constipation and their family doesn't realize that this can be helped. That is not autism. That is an imbalance in their body. That can be fixed and the child can feel better!
Sorry B, if you read that. I didn't mean to judge you but I have to admit that I did. I had fallen prey to the mainstream attitude. But I thank you from the bottom of my heart for being there to answer my questions when I came around! You didn't judge me. You just waited and were there when I started asking questions. You continue to loan me books and share your experiences and I am so thankful for your being there to help ease my anxiety. Especially that first night we did the B12 shots. You and I have since talked yeast, supplements, chelation. We've also talked Verbal Behavior, occupational therapy and auditory training. We talk about autism in general. You know about autism in general. It took my getting involved in biomedicals for me to realize that you are just like me--a parent who is looking into anything and everything to help your son. I apologize for stereotyping you initially just like many of our peers are guilty of stereotyping all of us biomedical families.
Well, what changed my mind and opened my eyes? We had another dramatic life changing event nearly 2 years ago. When T was conceived everything changed. It had to. My perspective changed. I knew that I had a little one coming and I had to know how to protect him. Yes, finding a cause would not change anything for JP but it might prevent T from having to live with the same difficulties.
I had heard the mercury talk and had ignored it. But when the book, "Evidence of Harm" was released something propelled me to picked up a copy. Now, I want to be completely honest about this. I was very skeptical of the "conspiracy theory" attitude but I figured that I am a sensible adult. I can read and pick out those facts that look questionable. I still stand behind that belief. And I do urge other to read the book. It is eye opening. You can take it at 100% or even as 50% factual. It doesn't really matter--it is still eye opening. And, yes, it is mostly one sided. David Kirby mostly provides the story behind the biomedical camp. He did try to interview and tell the side of the CDC but they wouldn't/couldn't talk. Now, when you factor in politics this isn't so surprising. Still it is disappointing. I would like to know the full story...but the best we can ever get is a one sided perspective. But then life is all about perspectives and no two people have the same one.
My thoughts at that time were that mercury could very well be a contributor to the increase in autism. I didn't know if I could blame it for JP's autism. However, I did not feel that genetics could be the full answer either. We do not have any other cases of autism in our extended family. If it was purely genetics than there should be others. In fact, I had never met another autistic individual. So I read the book just to get a glimpse at the debate and decide for myself.
I compare the mercury theory to cancer. We can't say that all cancer is the result of cigarette smoke. Some are, some aren't. But there is no denying that cigarette smoke can be blamed for
many cases of cancer. (Now we could debate whether to blame the smoker or the cigarette but that is for another forum). We can't deny that mercury is a neurotoxin. So, just like I ask my mom, "why the hell do you still smoke?". I also pose the question to the powers that be, "Why the hell do you include a neurotoxin in our vaccines?"
My current personal thoughts are that there is a genetic predisposition for some families. We don't excrete toxins as well as our peers. One can pose the questions about why the parents who received childhood vaccines didn't get autism. That is true but we received fewer vaccinations in our day and our environment was cleaner. For example, we could actually catch and eat fish in the local ponds. Today much of the fish in our region (in the heartland) has been deemed not suitable to eat due to environmental toxins. Our world has changed.
Not only do our kids have to breathe in more pollution today but they have also been jabbed with many more vaccines. And I firmly believe that those kids whose genetics don't allow them to excrete mercury and other metals have paid the price. I've seen the statistic over and over again. They say that 1 in 6 kids has some sort of developmental delay. What the hell! How does that happen? Can we say that it has to be vaccines. No. There are many other environmental issues at play. This isn't a fight about vaccines. I feel that they play a part but it is about toxins in all shapes and forms. I truly feel that an intelligent adult can not deny that something is amiss.
Another crazy reality for me was when I went to my Ob-Gyn to confirm my pregnancy. They gave me a pamphlet on mercury levels in tuna and how pregnant women should limit their consumption. I also received a pamphlet on how important it was to me and my fetus that I get a flu shot. Something is amiss.
The mercury debate is a very heated one. The mercury side is adamant that we need to do something to stop altering the lives of our new babies. When we spend research dollars on studying genetics and helping the already diagnosed, we allow more babies to join their ranks. I don't think that they mean that we shouldn't research these avenues but they desperately want funds applied to prevention as well. The other side thinks it is all about blame and that these "loonies" just want someone to pay for the wrongs to their children. Then there is the neurodiversity crowd who just thinks that we should leave the children alone. To them, I only say that this goes beyond just accepting their quirks. I love my son's quirks. That is who he is. But I want him to be comfortable in his body and be the best that he can be. I owe it to him to make that possible.
I think there is fault with the government but I also feel that pushing that issue will get us nowhere. Face it, if every family who vaccinated had cause to sue than there would be little money to be had for those impacted children. And yes, every family could sue...not just those with autism! Every family would have a case if there was negligence on behalf of the government because every family
could have been impacted. (But then it does look like atleast 1 out of 6 has been impacted) But again, this goes beyond the vaccine program. We have to look at our environment as a whole. Our children have a genetic susceptibility and vaccines as well as other environmental pollutants have pulled the trigger.
It is fruitless to focus on making someone "pay" for this wrong. But I will stand behind the statement that we have been abandoned by society when it comes to serving our kids. We can't
afford to pay out of pocket for these therapies. And these therapies are helping some of them.
There has to be a calm place in the middle where sensible adults can talk about the issues. But the politics all around us keep that from happening. Politics keep some families from exploring biomedicals. They are expensive. They are portrayed as alternative. They are portrayed as dangerous. If your child had lead poisoning the medical establishment would authorize chelation. Yet within the autism community it is said that we are "risking the lives of our children".
Politics allows the government to leave us families fending for ourselves. Politics makes doctors who support our theories outcasts in their medical community. Those who raise issues or speak against the system become quacks. Politics allows the insurance companies to tell us that our children aren't worthy of receiving these therapies because society has already written them off. Politically speaking this is a huge snowball, and no one wants start the avalanche.
Until hell freezes over and our political climate changes, the lives of our children remain in our hands. There won't be adequate research to support biomedicals because they are too busy searching for the genes that have magically gone ballistic with the current generation. I am not doing anything risky with my child's life but I am out there traveling the dirt roads finding the way. His future is in my hands and I owe it to him to explore all of the paths.
Okay, off my soap box.
I probably should explain our path into biomedicals. There is so much to learn. To the new family looking at it...take it slow. Pace yourself. Our journey with autism is a marathon. You are not running a sprint so don't get going so fast that you collapse from exhaustion. And find a good DAN doctor that you like. Don't feel restricted to the only one local or the only one your insurance may pay part of. If your child was needing brain surgery you would find the best...not the cheapest. ( I know that is easier said that done)
I just want to state for the record that we entered the biomedical world very cautiously. I wasn't completely sold on it and frankly I was turned off by the conspiracy theories. But we had just found out we were pregnant. There was a mini-DAN conference held locally. Looking back I find this to be extremely lucky. It was what I needed and when I needed it. Our state does not have much biomedical support so it is bizarre to me that they held a conference here. In fact, those of us doing biomedical therapies have to travel 2-3 hours to consult with a DAN doctor.
Unfortunately (fortunately?) , we do have one DAN doctor in our local community. He is one of those doctors that I feel does a great injustice to the biomedical cause. Apparently he met the bare minimum requirements to become a DAN practitioner and then proceeded to do mostly his own stuff. He doesn't run blood, stool or urine tests. By all accounts he is a quack. He feels pressure points and then tells you what supplements your child needs. I am telling you this because I am certain there are quacks out there. There are weeds in every lawn. And it is doctors like this that are used to belittle the DAN organization.
I have consulted a DAN doctor in Santa Monica, California and one in Kansas City. Many of our local families go to Kansas City. Both of these doctors are professionals who look at the individual child and find the treatments that your child needs. It is not a "one treatment fits every child" philosophy. We are continually evaluating my son's outputs and blood levels to monitor that everything is okay. If you consult a DAN doctor and feel like they quack...they probably are. Don't give up on the DAN organization as a whole. Find another one. Give another one a try.
This post is getting ridiculously long. I just feel like I have to explain myself. And that is ridiculous. I know that there will be some of you out there that judge us for doing biomedicals. I know this because I read the contempt and scorn in some of your own blog postings. I just took this leap of faith because I hope that by now as a reader of my blog you realize that we are smart and educated parents. We are not sheep.
One of my goals for my blog was to help other families who are facing autism. I just hope that my honestly will help you consider biomedicals and show you that it is something to consider. You aren't going to get referrals from your school teachers or your pediatrician. But I am finding that there are many more of us biomedical families out there than you realize. In fact, even here in the heartland where we define "conservative", I am finding that many of the other autism families are approaching biomedicals. There are many of us out there. But most stay quiet about it. I find that sad. We really should be yelling from the rooftops so that other families will know that there is hope. However the only voices that those families hear tend to be the naysayers. That is frustrating. I am sorry if I have helped perpetuate that.
But I am saying it now. We are not sheep and we are not desperate. We love our child. We are not seeking to cure him. We are seeking to make his body healthy and to make him comfortable in his body. We are using biomedicals and it is helping.
So how is it helping? Here are a couple of our early successes...
My son had horrible yeast issues. I didn't realize that it wasn't normal for a 3 year old to still have 3-5 loose stools a day. I didn't know that until I attended the DAN conference and found out that so many of our kids have yeast/gut issues. That is a real medical issue. Our pediatrician did not catch it. It took my willingness to delve into the biomedicals and do the research before we got any resolution. As a footnote, JP took Nystatin for a little over 6 weeks and became "regular" for the first time in his life. He still has pretty much one solid bowel movement a day. No more chronic diarrhea! I truly believe that if we had not helped him deal with his yeast issues than we wouldn't have him potty trained by now.
Another eye opener for us was
Methyl B12 shots. This was the first leap of faith we took. Nystatin was mainstream but giving our son a shot was a bit scary. Yes it is just a vitamin but it was still unsettling. Fortunately the needle is very tiny. Up until recently we gave it to him while he slept and he didn't even wake up. Now we do it while he is awake. Anyway, this was our first step out on the biomedical limb. Hubbie and I talked before hand and agreed that we would not discuss if we thought we "saw progress" immediately. We both worried that we would see progress where there really wasn't any. You know, wishful thinking and all.
Well, we gave JP his first shot. I watched him like a hawk. He seemed a little more chatty but I couldn't be sure. We gave his second shot three days later. That next night Dad and JP were going out for a walk. I couldn't help myself and mentioned to Dad that I though JP had been more spontaneous with his labeling of items. Dad pooh poohed me and told me that it was too early to tell. I was just doing wishful thinking.
(JP was a little guy who could identify everything yet he never used his language to share that with you. If you asked him, "what is that" he would answer but that was the extent of his language. He never spontaneously labeled items.)
They came back from their walk. Dad was grinning. They had walked around the pond near our house. This was the same route they took every night. Typically JP would just lay over the side of the wagon and watch the wheel go round and round. This night he chattered nonstop. He said duck and tree and water and flower. He labeled everything. He didn't point but he spontaneously shared what he was seeing! Dad was sold. Mom was sold.
Now, I want to put a foot note on that story. That was our experience. B12 just happened to be something that JP reacted very well too. Not all kids will have such a burst. Thankfully we did! But please know that I am not telling you that B12 cured my autistic child. No! It seems to have helped him focus and brought about more language.
I have other biomedical experiences but this isn't about converting anyone to biomedicals. I just wanted to illustrate our successes with biomedicals. I share hoping that my readers will realize that biomedicals are not all about chelation! There are so many real medicial issues that our children are facing. Many of these issues our regular pediatrician should have caught but he didn't. He isn't an autism expert. He didn't realize how common yeast is and that we should evaluate JP for it. Much of the medical community just assumes that we are desperate parents. Our kids can't tell them that their tummy hurts and our word doesn't always mean much. It should. That is the biggest perk of dealing with a DAN doctor.
Well, this post is getting way to long. I could talk forever. But I won't. I just really wanted to put my voice out there. This article was a good read and I hope that it will give pause to some of the other autism families. Please don't get caught up in the political debates. Just look at the issues and do what you feel you can for child.
Another good source to explain these issues is
Children with Starving Brains by Jaquelyn McCandless, MD. Sometimes it takes a few months to get in to consult with your DAN doctor. This book would be a good source to get you going.
I really don't know why I decided to out myself. This isn't really a big issue but I find myself so frustrated when I read blogs by others who ridicule the biomedical world. We all want the same thing and we should not judge others for exploring other avenues. And remember exploring does not mean that you have to go through with any of it. You can always pick up the book or go to an consultation and then decide it is not for you. You don't have to do anything you are not comfortable with. I only hope that my honesty will help give credibility to the cause and that it will give you pause.
She asked him to squat by it and showed him how to kick his legs up. He followed her directions and had a grin on his face the entire time. Well, she just had in mind his holding on to the bar and kicking his feet up behind him. But JP decided that it would be fun to jump over the bar. So after doing it her way a couple of times he did it his way. She even encouraged him and told him what a great idea he had! He did it a few more times and then said, "Now you do it."
