Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30^th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.


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I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005

 

It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

It could always be worse!

This is what I told myself in the midst of doctor-visits-and-medical-mystery-a-palooza over the summer.  

It could always be worse!

Everything seemed to go cuckoo with the boys’ health toward the end of the summer. Nothing was clear cut about their situation, and no one seemed to know what was going on.   

The boys both had weird skin lesions that developed a few days after coming back from a camping trip. We did everything humanly possible to figure out what could be going on. Was it contact allergies? Were they bug bites? Was it some other condition? We had no idea and neither did the doctors. And after several days, when Monkey seemed to be getting better, Prince Charming was much worse and literally swelling before our eyes.

No one could tell us what was going on. The pediatrician didn’t know. The doctors at a second clinic didn’t know, even after 3 hours of them talking, researching and conferring with other doctors in the practice. No one knew.

Even after 10 (yes, TEN!) vials of blood taken between the boys for tons of tests, no one knew. (Getting the blood draw is a whole other story that requires consumption of a stiff drink – or several – before I am able to speak about it…)

The skin issue remains a mystery to this day, but thankfully the rashes are now gone. After about a week of not knowing what to do, making lots of phone calls, visiting various doctors, and doing endless research on the internet, I figured out a simple cure without any help from the doctors.

The secret is activated charcoal! I stuck a little pile of charcoal on top of the lesions and covered them with a bandage overnight. By morning my swollen Prince Charming was much less puffy. It was a messy miracle that took about 2 days, cost all of 3 bucks, didn’t hurt, and didn’t have any side effects. I wish I had figured it out sooner!

In and among the mystery skin issue, we were also dealing with some additional symptoms and concerns in Monkey. Cardiac symptoms.

Yes, you heard that right. In particular, tachycardia. If you are not sure what tachycardia is, it’s when the heart rate becomes accelerated for no apparent reason.  

You could have knocked me over with a feather when we figured out he was having heart issues. It was so unexpected.

When it first started happening, we thought it might have been an upset stomach, possible cold/flu, or even food poisoning. I was starting to feel like I was on Dr. House’s team with all of the research and differential diagnosis I was attempting.



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Each time Monkey would get his strange symptoms he seemed to recover quickly (within minutes or hours). There was only one time that his symptoms lasted for more than a day. He never developed any other symptoms of illness. It seemed strange that he apparently kept coming down with something but then the sickness never materialized. We knew something was up.

It was by accident that I figured out his heart was racing. From that point forward, we began documenting all of his symptoms and even found an app for our smart phones that would monitor heart rate. Then we got in to see a pediatric cardiologist.

Never in my wildest dreams did I expect one of my children to have a need for a cardiologist!

She sent us home with a portable heart monitor that we used to record any incidences as they occurred. Monkey was still being monitored when school started, so then I had to have a long discussion with the school nurse and his teacher to go over the details of the heart monitor in case he had tachycardia at school. What fun.     

After all of that, and a couple of visits to the naturopath, we still have a lot of questions about the boys’ health issues over the summer. We don’t know exactly what happened with either of them. We don’t know if the skin issues were related to the cardiac issues. We don’t know if any of the symptoms will come back.

The cardiac symptoms began going away once I started on a supplement protocol given to us by our naturopath to help Monkey’s immune system, focusing heavily on natural anti-virals. I did that for two weeks and as a result he stopped having his cardiac episodes.

We had a follow up appointment with the pediatric cardiologist to go over the heart monitor results. I reported the information about the naturopath’s treatment protocol and how the episodes tapered off and then stopped. Much to my surprise, she told me that since the naturopath’s protocol seemed to work, I should immediately begin doing it again in the future should Monkey’s episodes return.

What? A mainstream medicine person agreed with my naturopath and that natural methods worked and should be used again? I was happily shocked. Usually, information like this is met with disdain in the traditional medical community.

In our first visit with the cardiologist, she said there was a chance that his heart symptoms were being caused by some kind of virus. We were never able to pinpoint an exact virus from the myriad of tests run with the blood draws. So, she felt that success of the anti-viral supplements through our naturopath proved that Monkey’s heart issue was definitely being caused by some unknown virus. And, it could happen again. So, I will keep anti-viral supplements on hand for such an occasion.

All of this is to say, that during this time of health uncertainty, I really felt the stress of not knowing what was wrong and feeling helpless to fix it. Keeping that in mind, I know that it can always be worse.

Someone else always has a worse situation than you.

I better understood that I should not take my boys’ good health for granted. They have come a LONG way in their journey with autism and are much healthier than they were when they were younger! We have made a lot of changes, including the GFCF diet and proper supplementation. My boys are better because of it. I recognize that my life is much different now than it otherwise would have been had things not changed and I hadn’t been open to visiting a naturopath and doing other sorts of non-traditional treatments.  

During this time of concern over the summer, I really began to think of everyone I know that has dealt with things far worse than I can even imagine as a parent. I have friends who have children with Down syndrome that have dealt with multiple heart surgeries in their babies. I have another friend who had a child born with a significant heart defect, and right after her baby had a procedure to essentially re-build his heart, their apartment burned down and they lost everything while their son was recovering in the hospital. I have friends who have children with autism that cannot speak and still wear diapers at ages 8, 10, or even 16.

I can think of tons of examples of families that have a different experience with their child, and in my mind and my own experience it seems almost too difficult to imagine. What I’ve dealt with in my own boys is much more challenging than many of my friends have had with their children. But, we all deal with the cards we are dealt.  

We all have different experiences, challenges and triumphs. All we can do is try to do the very best we can in each moment of crisis or moment of joy. The boys’ health scares over the summer really brought that into focus for me.

I am so thankful for everything with my boys. Even though things have been hard in many ways, they’ve also been so wonderful in others. I am grateful for the path we are on, despite the twists, turns and brick walls along the way. I am also keenly aware that it could always be worse, and I’m exceedingly glad that today is a better day.    

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

A really awesome GFCF giveaway!

If you were on Facebook over the weekend, you know that I promised some big news on Monday. Are you ready? I’m doing an awesome giveaway! Really, really awesome. Like $200 awesome! Do I have your attention? Good!

I was over at Earth Monkey Moms the other day (you remember my Extreme Makeover Home Edition friend) and they were doing a giveaway that was super cool. They were giving away 10 spots in an upcoming live online dietary coaching program on how to start the GFCF diet for your kids. As it turns out, the consultant that offered up the prizes was someone I wrote a guest post for back in September. You can read that post at the Apples to Oranges blog here.

Anyway, I left a comment on the EMM blog that day, mentioning that if they picked me as a winner that I would happily forfeit it to someone else. After all, I do talks and meetings all the time about the GFCF diet through my support group and nonprofit organization. I don’t really need this kind of class when so many others out there could really use the info so much more than me!

Guess what? I ended up being one of the winners. And guess what else? Lindsay at EMM told me to keep the prize! And guess what I’m doing with that prize? I’m giving it away to one of you, my dear readers!

Can I just reiterate how awesome this prize is? I'm doing a little happy dance for you right now! Do you like that visual? Anyway....sorry. I'm just a teeny bit excited. 

I can tell you from my own experience that when you first start dealing with dietary restrictions it can be very overwhelming and scary. So, how cool would it be to have someone hold your hand through the process?

The dietary coach and fellow mother warrior is Lori Brienesse-Frank, and she is the gal behind Apples to Oranges Consulting. She will take you through everything you need to know about the GFCF diet in the 8-week live webinar series, which will begin in January.  

Christmas is coming early for one lucky reader this week! Would you like to know how to win? The only mandatory requirement is to leave a comment below this post, but please use the widget I’ve included below. The rest of the items listed will give you bonus entries if you complete them. So, fill in the little blanks and check the little boxes and you are done, my friends.  

I can’t think of a better way to start the New Year, than with some professional guidance from a dietary coach like Lori. You only have a few days to enter, so get moving! Good luck!

Guest Post & Interview: Regarding Caroline

Today I am very lucky to have Rebecca from Regarding Caroline with me!  She graciously agreed to do an interview and is also allowing me to share one of her posts. It is a must read!

CAM:  Rebecca, I wanted to sincerely thank you for taking the time to chat with me. I have to tell you that I found out about you and your site through some Facebook friends who were madly posting links to your site the day you posted, “That Would Never Be My Child…” They were right to be sharing your post! You really drew me in as you talked about how you were never going to have that child or that house. I understood it also as not wanting to be that mom. You captured my attention, for sure.

As I continued reading, I found myself nodding my head in agreement all the way through. You spoke about everything so completely and honestly, without judgment or negativity. That is why I felt compelled to contact you to get your permission to post the content on my own blog. My readers needed to see it. I am so grateful that you are giving me the chance to share your advice and a little bit about you and your daughter.

I’d like to start by asking about how things are going at your house right now. How is your family doing?

Rebecca:  Well, first of all thank you for your generous compliments!  Things at our house are going well.  Caroline is 5 and in mainstream Kindergarten with an aide.  She’s such a happy girl who truly loves life.   

There are two ways I look at our situation.  On beautiful days, when the sun is shining and everything is happy, I think about how lucky we are.  For a long time, I doubted that she would ever speak.  Like so many parents, I prayed, “Please, let her talk to me and I won’t ask for anything else.”  I’m grateful that my prayer was answered, but still, on those cloudy, dreary days when we’re stuck inside working on what feels like the same goals we’ve had forever, I’ve been known to forget that promise I made and start to feel sad about all the things she can’t do, such as have a conversation with a friend. We always want to get to that next step with our children, even if they’re typical, which is good, because it keeps us motivated, but also so important to remember from where we came and count our blessings for what we do have.

When she’s not “herself” it always means something is medically wrong.  Recently, she had a rapid onset of new OCD type behaviors and irritability.  With the help of a specialist, we learned that she’s dealing with PANDAS.  It’s been a whole new journey of discovery and healing.  PANDAS is an autoimmune disorder that affects a large percentage of children on the spectrum, but I’ve found that many people are still unaware of it.   After seeing how much Caroline improved with treatment for it, I’m going to have to get the word out!  For her, when we treated the inflammation caused by PANDAS, her eye contact and engagement profoundly improved and other typical ASD traits decreased.  It makes you wonder how many other children on the spectrum could also improve.  So overall, Caroline is doing well.  Thinking about how hard she works to attain what comes easy for most kids, makes us very proud parents.

CAM:  Just a quick note on this – PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. If you are interested in learning more about what happened with Caroline, please visit Rebecca’s post about PANDAS. I also wrote a post about these issues that includes a link to a scientific case study about PANDAS. OK, back to questions...

In Washington State there is insurance discrimination against the autism diagnosis code, which means insurance companies can get away with not paying anything. It’s commonplace and tragic for families like mine. Does insurance cover any of the treatments for your daughter? Do you have any tips on how to pay for treatments?

Rebecca:  We’re fortunate that we live in one of the states that have mandates for autism coverage.  Here in Illinois, insurance must pay for $36,000 of medically necessary autism related therapy each year.  The majority of Caroline’s speech, OT and PT are covered.  It’s important to have a prescription for the services and to use the right codes.  In the beginning we received many denials, but once we got those initial claims paid, we haven’t had problems.  The National Conference of State Legislatures website has a helpful page that outlines each State’s autism coverage requirements, in case anyone is unaware of what their State offers. (http://www.ncsl.org/?TabId=18246)

CAM:  Like many of us warrior parents, you probably have your PhD in vaccines from Google! Do you have any sort of estimate on how much research you have put into the topic of vaccines?

Rebecca:  That’s so true, and it’s too bad we can’t print out Google diplomas after we reach a certain number of hours logged on a topic!  The nice thing about the internet is that it allows us access to scientific journals, Pub Med and sites that allow for serious research into the topic.  The type of research even my former law school professors would approve.  Often times, us parents aren’t just reading the sites that report the stories, we’re reading the research itself.  Research that most pediatricians don’t even know exists, which as you know is the frustrating part!

How much time I’ve spent varies widely.  Right after her vaccines, when I first noticed changes in Caroline’s behavior, I researched them every night until I was exhausted.  I was actually looking for articles to prove that vaccines couldn’t have caused the changes, but I couldn’t find any.  All I found was more and more proof that they did.   I felt so sad and guilty that I had to let it go for a while and start focusing on recovering her.  I took all the time I was spending and put it into researching biomedical treatments.  Then, after she started recovering, and enough time had passed, I was able to look at it again.  Now, I keep up to date, reading new reports as they’re released, but still spend more time researching biomed and educating others.  

CAM:  Have you ever spoken with your daughter’s pediatrician about her vaccine injury? If so, what was the response?

Rebecca:  Our situation is unique because the pediatrician who gave Caroline her vaccines moved away just after her last set, at 12 months.  The pediatrician who took her place has never given Caroline a single vaccine.  She has two children herself who developed seizures after their MMR vaccines, so for her third child she delayed it.  Yes, you heard that right, DELAYED.  That’s how strongly Pharma has convinced these doctors and how little of their own research they do.  She admits she has not read any independent research.  I have given her some and I hope it gets through.  Who knows, maybe like so many doctors with vaccine injured children, someday she’ll become an alternative practitioner. 

The pediatrician who vaccinated Caroline after my continual questioning is now in Minnesota.  Just last week, I requested an email address to get in touch with her because I wanted to send her the blog.  I think she deserves to know.

CAM:  Another note – If your child has experienced a reaction to a vaccine, please contact your doctor and ask them to report it to the VAERS (Vaccine Adverse Event Reporting System) database. Vaccine injuries are notoriously underreported, so if you see any behavioral or physical changes following a vaccine, it is important to get those documented so that you retain your rights to access the vaccine court, should it be warranted. Now, here is the last question.

If you could boil down your experience into one nugget of wisdom, what would you like to share?

Rebecca:  Wow, that’s a tough one.  If I have to choose just one, I’d say “Stay the course.”  It seems that sometimes parents try biomedical treatments or the GFCF diet briefly and think, “Well, that didn’t work.”  Almost as if they don’t want it to, because, well, honestly, in the short term, it’s easier that way.  I know the feeling well!

The problem is that many of the things we’ve done with Caroline have resulted in only subtle changes, but over time and combined with others, they amount to a remarkable difference.  Miss a step or two, or three and she would not be where she’s at today.  An example is how many children need to also be soy free or even grain free for “the diet” to help.  If those things are not tried, an opportunity for healing and recovery might be missed. 

To be sure I don’t ‘abort mission’ too soon, I try to understand the science behind what we’re doing.  Knowing why something should work helps me to be more invested in it, increasing the chances I’ll stick it out and ultimately that Caroline will benefit.   

CAM:  That is excellent advice! I, too, have seen many families give up on new things too quickly. I think it's hard for parents to be patient because it seems like we are all in a rush to survive our current crisis, whatever that may be. We want to see positive changes yesterday! It can be very hard to have a little faith in something when the changes are slow and subtle. This is where good record-keeping or journaling can help you understand where your child was before, during and after a new treatment.

Before I launch into your post, I wanted to share my absolute favorite thing you said:

“That would never be my child,” was the rationale that resulted in my ignorance. An ignorance for which I paid an incredibly steep price. The life of my child was changed forever. Much of her childhood has been spent seeking recovery and the guilt I feel will never be lifted.

Rebecca, your words mean so much. I can only hope that more people will take those words to heart as they make choices for their children. Thank you for being here today.  

Rebecca:  Thank you for taking the time to ask such thoughtful questions and for sharing our story!

CAM:  Please visit Regarding Caroline to learn more about Caroline’s journey, get some great links, watch Caroline’s recovery video, and much more. You can also “Like” her page on Facebook.

That would never be my child...

Although Caroline is 5, it seems like only yesterday I had a life that was my own and was so blissfully unaware of the demands of motherhood, that when witnessing a screaming child in a restaurant I'd think, that would never be my child.

And when I was pregnant, visiting a friend's house where dolls and toys were strewn about every room, I insisted to myself, that would never be my house. In fact, I didn't want colorful, plastic anything. The thought of a high chair disrupting the clean lines of my stainless and glass dining table caused me tremendous anguish.

Needless to say, I've come a long way since then... and I have a house overrun with toys, games and stuffed animals to prove it.

So "Why is it," new moms often ask, "that they don't tell us what it's really like having kids before we have them?"

Honestly, I can't say no one did. People do, we just don't listen.

We're too busy living our fabulously free lifestyles to begin to contemplate what true sleep deprivation actually does to one's mind or to comprehend how it will feel to have the 60 minutes we spend getting ready dwindled down to 5 (if we're lucky).

We may hear the words our friend is saying - but subconsciously we think - that would never be my child. My child will sleep through the night and be easy, beautiful and perfect.

What's going on with ADHD?

According to a recent study from the CDC, Attention Deficit Hyperactivity Disorder now occurs in 1 out of every 10 children. I was shocked to read this! One in 10 children have ADHD? Are you kidding me? Does this blow your mind? It should.

Sure, I am accustomed to reading all of the statistics about autism and how the prevalence is skyrocketing out of control and reaching epidemic proportions. It’s sad to think how it becomes mind-numbing after a while. But, in all honestly, I really had no idea that ADHD was so much worse. I knew it to be true in my gut, but somehow had not actually equated that with hard numbers. And, those numbers are huge.

What is going on with this generation of kids? Autism is out of control. ADD and ADHD are out of control. Asthma is out of control. Allergies, particularly life-threatening ones, are out of control. Something is very wrong here, people. Does this not alarm you?

Well, if you are like me, you have done a lot of research and have come to conclusion that most (if not all) of our current health care problems are due in part or whole to environmental causes. This is not necessarily a genetic phenomenon. If we are talking autism, the rates are increasing too fast to attribute causation solely by genetics. And, genetic studies on autism so far have been fairly disappointing. There is no genetic smoking gun.

I’ve explained my theory of autism to you before. In a nutshell, you have many factors at play in the body (genetics, allergies, ear infections, heavy metal exposure, etc.) and at some point there is so much assault on the system that it creates a tipping point for the body and brain to fall into autism. You can take my theory it or leave it, but it helps me think about autism more clearly as a sum of many parts.

When thinking about environmental contributors to conditions like autism, there is a lot to learn. My eyes have been opened over the past several years as my family has dealt with both cancer and autism. There are many things to consider, like: artificial ingredients (colors, flavors, sweeteners), GMO (genetically modified organisms – which currently have no labeling requirements), allergens, heavy metals (like mercury found in high fructose corn syrup – which is in a majority of processed foods), and the list goes on and on.

You can be aware of what you purchase and what you allow your family to be exposed to. Reading labels is a great place to start. If you can’t pronounce an ingredient or it cannot be found in nature, you might consider choosing a different product. One of my favorite health sites is www.mercola.com. Learning more and making better choices will greatly benefit your family’s health.

Now, I am not much for politics. After a certain point of listening to politicians pontificate it just makes my skin crawl. My hubby and dad like to talk about politics whenever they can and I have little patience or interest when they get going. I have a few key things that I look for when I’m voting, but those things don’t necessarily fall neatly into the boundaries of one political party. I vote where the issues take me, not the party.

Recently I learned I could align myself with the issues that matter most to me and a political party that backs those very issues. I joined the Canary Party because it is issue-centric and not what you would typically expect from a political party. The Canary Party is “a group of citizens who are disturbed by the increasingly failing health of those in our society,” focusing on various issues related to the failing mainstream medical system, environmental concerns like pollution, and parental rights.

Here is a quote from their site:

“If anything was to be done about the epidemic levels of childhood chronic illness in the US, it would have to be a result of real political pressure to clean up the corruption in the medical establishment that was allowing bad pharmaceuticals, bad medical practices and bad public health policy to assault human health on such a wide scale. It was time to stop asking the medical establishment to pay attention to the epidemic of illness, and demand that they do, or replace them with their betters who would.”

The whole world is going to hell in a hand basket in so many different ways, but I can try to effect change for something that will directly impact my family. This was reaffirmed for me when I read the article about ADHD occurring in 1 in 10 children. Those rates are appalling. Autism rates of 1 in 91 are absolutely unacceptable. We need to do something to stop the trend of failing health and increasing disability and disease. We need to regain some control for the sake of the next generation.        

Environment is a top suspect in autism

Finally! And perfect timing, too. The National Institute of Mental Health dropped a bomb about autism on a national holiday. How convenient. When most of us were having picnics and spending time with family in preparation for Independence Day fireworks, the NIMH decided to quietly “surprise” the public with the fact that the environment is now considered a main causation of autism, more than genetics.

I think the Managing Editor of Age of Autism said it best:
Autism affects upward of 1% of American kids today. There "is no cure." There is no test. There is precious little hope for treatment in mainstream medicine. It's a crisis for America the likes of which we have never seen. And so the NIMH puts out a press release ON A NATIONAL HOLIDAY. Meanwhile, how many of our kids are cowering under a bed right now instead of reveling in the fireworks and family celebrations because of their autism? And what does THEIR independence look like tomorrow?

From The New York Times: The new study marked an important shift in thinking about the causes of autism, which is now thought to affect at least 1 percent of the population in the developed world. “This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder,” said Dr. Peter Szatmari, a leading autism researcher. There has been growing acceptance that genes do not tell the whole story, in part because autism rates appear to have increased far faster than our genes can evolve.

From the San Francisco Chronicle:
Environmental factors play a more important role in causing autism than previously assumed and, surprisingly, an even larger role than genetics, according to a new study out of UCSF and Stanford that could force a dramatic swing in the focus of research into the developmental disorder.

Does this come as a surprise to anyone? Anyone? Anyone? Bueller? Heck, no! Apparently the scientists were surprised. ((insert sarcastic “DUH!” here))

Parents like me have been saying the environment is a problem for years. I can’t think of a single parent of a child with autism (and trust me, I know a lot of them!) that believes their child’s autism is purely genetic. Most believe that the environment is the culprit. If it was not the reason, than it was one of the top reasons. I believe this to be true in my own family with both of my sons.

My own personal opinion is shared by many others: genetics loads the gun and the environment pulls the trigger. I definitely think there is something to be said about genetic susceptibility and environmental assaults adding to toxic load, ultimately leading to an autism diagnosis. I wrote about this and other things when I reviewed Jenny McCarthy’s book, Mother Warriors. Here’s a little snippet from that post:

The way I like to think about autism is that our kids each have a row of dominoes stacked just so, with each one a possible trigger or tipping point. There are many dominoes, and each domino on their own is seemingly insignificant, such as: allergies, reflux, eczema, ear infections, diarrhea, food intolerances, asthma, chemicals in the home, pesticides on our food, heavy metals exposure, fluoride and chlorine in our water, candida overgrowth, the vaccine schedule, genetic predisposition, etc. The list seems to be endless and I have by no means included everything that could ultimately be involved. When one or more of these dominoes gets bumped and the dominoes are close enough together for the bump to make an impact, I believe it triggers the cascading fall into autism. The sum of all of the parts equates to a life-changing diagnosis.

As a parent, studies like this have 2 sides. First, they are extremely gratifying. They prove that the hardcore parents who research endlessly for ways to treat and help their children with autism are not the crazed lunatics they are made out to be. In most cases, the medical system has failed them. The parents keep vigil on behalf of their children, paving new roads for their care because no one else will, and yet they’re made out to be a villain for doing so because it goes against the grain. We are justified. Our choices are sound. In fact, we were right all along!

Second, the other side is that studies like this are extremely frustrating. Sometimes they feel like a huge waste of time and money, often proving what most of us already knew to be true just by living our lives with our children. It doesn’t help us get through today or tomorrow any better.

I understand the need for scientific study, especially since my original choice of study and intended career were in Biology. I get it. We need the scientific process. But, I am now a bit disillusioned by the whole thing. Frankly, I don’t really care all that much if there is a higher incidence of autism in families who live near the freeway or that autism and birth order might be related. I care about helping the generation of children with autism and their struggling families TODAY.

As Jenny McCarthy said in her book, “People can say there is no science to support our beliefs about the causes of autism and ways to treat it, but there is plenty of evidence. Just walk into the homes of families who have children with autism. They’ll be happy to introduce you to their science.”

I will say that I am happy that they are starting to figure it out. Keep coming our direction, highly-paid executives, doctors and scientists. We’re waiting for you! In the meantime, all of us parent warriors will continue blazing our own trails and hope that eventually the mainstream medical and scientific community will catch up to us someday. They’ll finally figure out that we were right all along. Gee, won’t they be surprised?   

P.S. I found some additional content at the 11th hour after I'd already completed this post. Rather than re-write it to cleverly include the new stuff, I'm just going to place it here at the end and save myself the time.

I stumbled upon another great read about this issue and highly recommend you check it out! Lisa Ackerman, the founder of TACA, did a great job summarizing this study and how we can move forward with this "new" information. She quoted a physician who recently gave a lecture she attended and I love what he said. “If an adult stopped talking or regressed in their skills, physicians would order a myriad of tests including an MRI.  When a child regresses or stops talking we just call it autism.”

This is the very attitude that is pervasive among pediatricians today and it needs to stop. That's my 2 cents. Or maybe we're up to a full dime by now! Anyway, please feel free to leave your comments below and add to this rant discussion.     

Mother Warriors: Review & Commentary

- I originally wrote this in November 2008 and posted it on another blog. I thought I would dust it off and recycle it in honor of all of the wonderful mother warriors out there. I hope you all had a lovely Mother's Day. - 

On a recent trip I had some quiet moments to read and I found myself engrossed by Jenny McCarthy’s latest book, Mother Warriors. I admit, I wasn’t a huge fan of her previous book, Louder than Words, but her new book spoke to me and I finished it in less than a day. Much to my surprise, I found myself in tears by the end.

No matter your opinion of Jenny McCarthy, she is one of the top vocal advocates for the autism community and is pushing nerves and helping spread the word that there’s a big problem. I am a parent of two diagnosed on the autism spectrum, and I am trying to make a difference and be vocal in my own community. Jenny can do what I cannot – give major television interviews, write best-selling books, and generally increase the national awareness about the autism epidemic. I admire her passionately stepping up to say something despite the controversy of the topic.

Chapter 2 of Mother Warriors is an extended analogy that Jenny provides about the plight of many families dealing with autism. A child appears normal and then one day something changes and the child seems to be lost (often very suddenly) to autism. Many believe that vaccines triggered their child’s autism. In the words of Francis Collins, “Genetics loads the gun and environment pulls the trigger.”

A mother's guilt

I feel guilty. I know I didn’t do anything wrong. At least not intentionally. Ever since we got a diagnosis for my boys, I knew that they were born this way. I didn't cause it from my actions. That’s what we’re told. Autism is genetic, right? Over the past few years, I learned enough to no longer believe that autism is purely a genetic condition. Rather, I believe that in most cases it is an immunological response to an environmental assault, which triggers the cascade of symptoms into autism.  

As I sat enjoying my morning cup of coffee and scrolling through Facebook, there it was. A friend posted a status update about her son and their recent findings from the doctor. Her words gave me pause. Things suddenly started to click in my brain. What it this? What about that? Feverishly I pulled up Google and began searching for more information. There could be something to this. As the morning progressed, I felt my head dizzily spinning with the information and possible implications.

Then I found this scientific case study. It pierced my heart. Autism may have started from me. And, I’m not talking about my genes. From me, giving birth. Yeah. That’s it right there. I feel it now, washing over me. Guilt. Did the cascade into autism start on the day of their birth?

Diplomatic Warrior

Diplomatic warrior. Sounds strange, doesn’t it? Well, I think it’s a term that fits me. There was a time in my life when I was disparagingly dubbed a “diplomat.” In fact, being too diplomatic cost me an amazing opportunity while I was in college. Ultimately, that loss brought me to this very moment - fighting the good fight for my boys.

Our family’s journey with autism has caused me to become the warrior mom that I am today. I wear the badge proudly. I work hard to help my kids. If you get in my way, prepare to be steamrolled by one tough Mama Bear! My boys have made amazing strides, but it certainly hasn’t been easy. Nothing about it has been easy. But, they are recovering, and I can tell you that life is better now than it was even a year ago.

I’ve become a different person over the past few years. For instance, I never thought I would run a support group. Ever. But, I’m now in my third year of sharing and learning with a group of great parents. We all work and fight to help our children in the best way we can. A label doesn’t have to define your child’s experience. In fact, it can propel you forward to positive change.

While working with my group and a local nonprofit over the past few years, I learned that legitimate connection with people often trumps the need to always have the “right” answer. I can be strong-willed and opinionated. There are a few topics that I could easily do a lengthy verbal dissertation on. Some of my poor friends have heard me do just that! I don’t know how they can put up with me sometimes. We all have our hot-button issues, but we also learn how to pick our battles. Honey is better than vinegar, right?

There have been times that I’ve gained knowledge and perspective by simply shutting my mouth and listening to ideas that challenge my view. It doesn’t mean that I will always agree, but sometimes I can truly see the value in something that is exceedingly different from my own current thinking.

The autism community could use a good dose of diplomacy right about now. Facebook has lit up the past few days with issues that divide the various autism “parties.” I’ve also seen this kind of division and rhetoric in my own community. There are so many reasons to have a strong viewpoint when it comes to autism!

Do you think it’s safe to vaccinate, or are vaccinations contributing to the incidence of autism?

Do you believe in embracing neurodiversity, or do you choose to pursue biomedical treatments to help alleviate and improve medical symptoms related to autism?

Do you think Dr. Wakefield is a quack, or do you think he’s a doctor who has risked his entire career to help families with autism?

These and other topics are polarizing. Parents are tired from their daily autism battle. When you throw in strong dissent from the very thing you’ve cried and bled over, things can get messy. And, it can get very ugly, very fast.

As the saying goes, “Can we agree to disagree?”

When was the last time you had a discussion with a friend about religion or politics? Do you always have the same opinion as they do? Probably not. I think this easily carries over into the world of autism.

As far as I’m concerned, my role is pretty simple. I choose to share my experience so that others might have an easier journey with their child. You may disagree with my advice, opinion or methods, but that’s okay. And, I might disagree with you, too.

Autism is so prevalent and pervasive that it is literally kicking our collective backside right now! I’d rather fight beside you than against you. How about we all give each other a measure of respect, show some diplomacy, and battle on?