Did Daddy Have Cancer?

Last night we went on a family walk as the sun was setting. Near our house there is an area that was under development and was quickly abandoned as the housing market fell apart in recent years. There are sidewalks and trees, and it is set back from the main road. It makes for a serene, enclosed space that lends itself well to family time. We have had some excellent walks there on the long summer nights, and it’s a great place for the kids to get their energy out before bed.

Just before we left our house to take a walk, I had been watching a documentary on Netflix called “Dying to Have Known” about cancer treatments and whether or not the Gerson therapeutic approach can improve health and cure cancer. It was interesting to me because of my husband’s experience with lymphoma back when our boys were very little.

As I expected, when the boys heard the TV, they came out to check what I was watching in case they were missing something. They ended up watching almost the entire last hour of the documentary with me. I have no idea what piqued their interest, but I was glad to have their company. I figured, if nothing else, it might give them reason to ask me questions. Unlike most neurotypical kids, my boys don’t seem to ask a lot of questions, and I have to really make a concerted effort to have these kinds of interactions with them.

So after the movie concluded, we left for our walk. As we got underway, I was recounting part of the documentary to Titan, who missed most of the movie. I briefly spoke about how the work of Dr. Gerson* and Dr. Burzynski* are not viewed favorably in the mainstream medical community, much like how “alternative” autism treatments such as the GFCF diet are viewed with the same disdain, despite a lot of evidence about their efficacy. (*The documentaries, “The Gerson Miracle” and “Burzynski” can be instantly viewed on Netflix.)

I was reminding Titan about how his doctor got upset when he lost weight by eating raw foods, taking supplements and juicing while he was undergoing chemotherapy. The doctor was concerned that his weight loss would make him sicker from the chemo. 

Monkey interrupted us and asked who we were talking about.

“I’m talking about Daddy.”

“Oh. Wait… What? Why was the doctor upset with him? Was he sick?”

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“Yes, Daddy was sick a long time ago. The doctor didn’t like what we were doing to help Daddy’s body stay strong during his treatment. But, Daddy’s better now, so everything is fine.”  

“What was wrong with Daddy?”

“Well, he had cancer. He doesn’t have it anymore. He’s okay.”

I could see the wheels turning in his mind as he remembered the movie we had just watched and all of its talk about cancer. I could see it was troubling him and he started to walk slightly faster so that he could avoid me seeing his face. He tries to cope with emotions by avoiding eye contact because it gets very uncomfortable very quickly for him.

I’ve often heard people say that those with autism have dulled emotional responses, but from my experience I can tell you that I believe that sometimes the surge of emotions can be overwhelming and they are responding in those ways due to a feeling of chaos and lack of control. I think people with autism may feel even more emotion than you or I, and they simply can’t handle the way it makes them feel. Monkey will do whatever he can to avoid emotion, but sometimes it can hit him very, very hard. So, I respected the subtle nonverbal clues he was sending me about how the subject of his dad having cancer was difficult to process.

“Did Daddy really have cancer? What kind of cancer was it?”

“Yes, he did. He had lymphoma.”

Titan jumped in and asked Monkey if he could remember the scar on his body, and told him that the scar came from a surgery where they removed his tumors. He also talked about the blue tattoo dots on his chest that were used to align the radiation machine.

“How old was I when this happened?”

“Well, your brother was a baby…about 6 months old. You were 2 years older than that. You were really young, which is why you don’t remember any of this. We haven’t really talked about it with you because it happened a while ago. Daddy is fine now. So, please don’t worry.”  

“Okay.”

His pace slowed back down a little bit as his emotions began to calm. I figured the door was open, so maybe we should expand the conversation.

“You know you can ask me a question about anything whenever you want, right? Is there anything that you want to ask me about right now? Maybe about Daddy, or autism, or something else?”

“Yes. Why am I allergic to wheat?”

I explained to him that his food allergies are something he was born with, much like my allergies to pollen, and that the special diet is helping his body and brain. I also told him that the allergies are part of his autism and that when he is on the diet, his autism is better. This, obviously, led to the next question…

“Will I have autism and food allergies for the rest of my life, or will they be cured?”

I told him that much like with cancer, some people can get better and some do not, and that this can also apply to things like autism and food allergies. Some people have to stay on a special diet for their whole lives, and that we didn’t know yet if that was the case for him or for his brother. We talked about how the diet has helped his body, his brain, and his autism, and that he needed to stick with it for a while longer.

We talked for several more minutes and I tried to involve Prince Charming as much as I could. I made sure to specifically ask him if he had questions about his autism or anything else. He understands that he has autism, but gets easily confused about the fact that autism is a condition that affects his body and brain, and that it isn’t something more concrete like a local event we have called Autism Day. So, I talked with him about how some kids have autism and some don’t, and reminded him about how we like to visit and play with our friends that have autism at some of the special events we go to.

I know that in time his understanding will expand. All I need to do is keep talking with both the boys and encourage questions in those distraction-free times, such as family walks in the evening.

How do you talk with your kids about autism?          

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.    

Wordless Wednesday: Toothy Milestone

Prince Charming recently reached an important milestone! At the ripe old age of almost 7, he lost his first tooth!

I've been home for every single loose tooth that Monkey has had so far, and I'm sad to say that I missed Prince Charming's big occasion entirely. I was out of the house working on taxes for my nonprofit, of all things. Total bummer.

After all was said and done, I got a Skype video call on my cell phone and saw his happy, tear-stained face. He was so proud of himself. My little boy is growing up.

The following pictures were taken by my hubby to document the big event. :-)   



Prince Charming was eating lunch, bit into an apple slice, and the rest is history. He was fairly traumatized, especially because it meant he couldn't finish his lunch until the tooth was pulled. He couldn't handle the sensation of the loose tooth in his mouth and everything came to a screeching halt until it was dealt with.  



Daddy to the rescue! After much reassuring and coaxing, Prince Charming allowed Titan to pull that pesky loose tooth. He was so proud to tell me about his bravery and to show me the "hole" in his mouth. 

Autism epidemic, anyone?

From Reuters, “About one in 88 children in the United States has autism or a related disorder, the highest estimate to date and one that is sure to revive a national argument over how the condition is diagnosed and treated. The estimate released on Thursday by the Centers for Disease Control and Prevention represents an overall increase of about 25 percent since the last analysis in 2006 and a near-doubling of the rate reported in 2002. Among boys, the rate of autism spectrum disorders is one in 54, almost five times that of girls, in whom the rate is one in 252.”

Earlier this month I was preparing for the new autism numbers from the CDC to drop. In anticipation of how bad the new autism prevalence could be, I began to wonder at what moment the world would finally see autism as a medical epidemic.

We all remember how quickly everyone got on board in dealing with the supposed pandemics of bird flu and swine flu. The whole world seemed to be talking about the flu and quickly mobilizing to deal with the perceived problem.

Well, where the hell is the concern over autism? The only people I ever hear talking about autism are autism parents. I hardly ever hear or see feedback from anyone else. Autism parents aren’t vocal because we want to be, or because we like to talk about autism. It’s because we have to be. We are fighting for our kids AND we are fighting for your kids.

I guarantee that those who think autism will never touch their life have another thing coming. It will cross their path at some point. So, we better all open our eyes and recognize that there is a problem.

When is an epidemic really an epidemic? When will the public at large wake up from their ignorant slumber? What does the incidence rate of autism need to be before we see national and global change to combat this epidemic? Does it need to be 1 out of every 10 kids? We are headed there quickly.  

The thing that frustrates me the most is that the “new” CDC data and the subsequent “new” rates generated from that data is NOT NEW AT ALL! The data is OLD!

The study was conducted in 2008 (yes, that is 4 YEARS AGO!) on what were then 8-year olds. Those children were born in 2000 and are now 12 years old. As a result, almost none of the children I know on the spectrum (including my own boys) are included in that data set.

Want to know something else about that? My children wouldn’t have been included in the data anyway. Want to know why? Because they only collected data from 14 locations across the US! And, none of those locations were in my state.

Is it just me, or is it insanely tragic that the CDC is reporting “new” data that is horribly out of date from just a small handful of locations?

This does not sit well with me.

When I saw Facebook go full tilt yesterday with all of the articles and stories about the new autism numbers and the links and comments from all of my autism mommy friends, I started feeling more and more depressed about it. I actually had to turn off my computer and walk away because I couldn’t take it anymore. I did not expect to react that way. I mean, this is not a shock to me or to any parent of a child with autism. We all know in our hearts that the numbers are hideously underreported. I see a higher prevalence of autism in my own zip code for crying out loud! 

So at this point, instead of continuing my rant and getting more upset, I will focus on some selected quotes from some articles I read yesterday about this “new” data. Check out the articles and let me know how you feel about the CDC’s announcement.

From ABC News:  “The data was collected by The Autism and Developmental Disabilities Monitoring network, an organization funded by the CDC to track autism rates. For this report, the ADDM reviewed medical records of 8-year-old children from 14 different areas across the country. The study focused specifically on 8-year-olds because most autism spectrum diagnoses are made by the time a child reaches their eighth birthday.”

“The CDC study released Thursday is considered the most comprehensive U.S. investigation of autism prevalence to date. Researchers gathered data from areas in 14 states - Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin. They looked specifically at 8-year-old children because most autism is diagnosed by that age. They checked health and school records to see which children met the criteria for autism, even if they hadn't been formally diagnosed. Then, the researchers calculated how common autism was in each place and overall.”

So, they are only looking at SOME records of SOME 8-year olds in a FEW scattered places. We need to seriously consider doing some research like they did in South Korea that was population based and reflected an incidence rate of 1 out of 38. I would venture to say that their study is more indicative of what the true number could be here in the US.

From Reuters:  “CDC investigators warned, however, that the 14 sites are not ‘nationally representative.’ As a result, the rate of autism being reported on Thursday in CDC's Morbidity and Mortality Weekly Report, ‘should not be generalized to the United States as a whole,’ they wrote.”

You got that right. The rates are probably much higher!
 

“Scientists had long estimated that 90 percent of autism risk was genes and 10 percent reflected environmental factors. But a 2011 study of twins by scientists at Stanford University concluded that genes account for 38 percent of autism risk and environmental factors 62 percent.”

Um, duh. Most of us parents have known this for years, since a majority of us do not have autism anywhere in our families.

From the Associated Press:  “The study also found that autism disorders were almost five times more common in boys. And that an increasingly large proportion of children with autism have IQs of 85 or higher - a finding that contradicts a past assumption that most autistic kids had IQs of 70 or lower.”

And now for the exceedingly annoying quotes...

From USA Today: “A professional group is now considering changing the diagnosis of autism spectrum disorders, eliminating some people on the milder end. If the formal definition is changed next year, the rate of autism will certainly fall, experts said.”

DO NOT GET ME STARTED on this quote. Don’t you just LOVE the idea that they can get rid of the autism epidemic by changing the criteria and eliminating some of those higher-functioning kids right off the spectrum? Grrrr…

From ABC News:  Dr. Isabelle Rapin, professor of pediatrics and neurology at the Albert Einstein College of Medicine said, “Not only physicians, but parents, teachers, therapists and the public are much more aware of the symptoms of autism, and I suspect some may apply the diagnosis based on one symptom, which is inadequate.”

Oh, good Lord. The things I could say about this quote. What I will say is that diagnosing professionals (pediatricians, neurologists, psychologists, etc.) have to follow the DSM IV criteria. If the proper criteria are not met, the child does not have autism. Period. To say that professionals are handing out autism diagnoses like lollipops is preposterous to me. Autism cannot be diagnosed based on one symptom. Anyone who does this is not a reputable and should be held accountable for medical malpractice. To allude that this is commonplace is just ludicrous.

From CNN:  Mark Roithmayr, president of the advocacy group Autism Speaks, says more children are being diagnosed with autism because of “better diagnosis, broader diagnosis, better awareness, and roughly 50% of ‘We don't know.’”

Uh huh. Better and broader diagnosis? Nope! The diagnostic criteria HASN’T CHANGED IN YEARS because the DSM IV hasn’t changed in years! The DSM IV was published in 1994 (with a revised edition published in 2000). We have had the same version for diagnosing children for 18 years! Doctors should know this manual inside and out by now. I cannot see how this is an issue, unless we have a huge pool of rogue diagnosticians making up their own criteria for autism (see quote above from Dr. Isabelle Rapin).

Then, there is the matter of this 50% that “we don’t know.” I will admit that there is a lot that we don’t understand about autism, but more children are being diagnosed with autism because more kids have autism! It’s not a diagnostic anomaly. It’s not a genetics thing. The huge increases seen in autism rates cannot be accounted for by genetics or better diagnostics.

Our kids are sick. And, not just neurologically sick. Most of them have significant medical complications that accompany their autism diagnosis. We have a systemic problem that crosses all boundaries, demographics, classes, races, and locales.

I know that there are many more kids with autism than the CDC will admit to, or can even begin to account for with their current reporting methods. We’ll just have to sit back and wait for them to report on today’s kids…years from now.  I wonder what the autism rates will be when they catch up to my kids? I shudder to think of it.

Want to know what the autism rate is at my house? 2 out of 2. 100% of my children have autism. And, that’s all I need to know.

Not-So-Caffeinated Autism Mom

About a week ago on Facebook I shared the following with you: “Confession: For the past 2 weeks I’ve been drinking decaf. The shock! The horror!” I was quite amused by your responses! From your comments, as well as comments from some of my own friends locally, I’ve gotten the tongue-in-cheek question, “Are you going to change your name to Decaffeinated Autism Mom?”

     
One word: NO! I am still your favorite hard-core coffee junkie that you have come to know over the past year. So, let me give you a little history on what’s been going on.

I have been working very hard, just like every other stay-at-home mom out there. Trying to keep the children alive and the house from falling apart can be a challenge for anyone. As you know, I also run a special needs support group and that takes time. And, in all of my additional spare time (LOL!), I recently took on the role of Executive Director at my own nonprofit organization. The nonprofit involves volunteers, a Board of Directors, meetings, work parties, hard work, energy, and LOTS of time. Trying to squeeze the duties of a full-time job into the few minutes and hours I can spare out of my day (or the wee hours of the morning) has been a challenge.

Health wise I’ve struggled with many things, like: allergies, migraines, reflux, etc. In helping my boys, I’ve learned a lot about how to approach health from a more natural perspective. I have been able to take myself off of all of the medications I had been on for a very long time. Things have been fairly good since that time, except for the fact that my weight never seems to budge. Genetics are certainly not helping in that department!

As I’ve taken on more and more responsibility and stress in the past year, I’ve been noticing the return and slow progression of some of my old symptoms. I knew that I didn’t want to go down the road of meds again, but I also wasn’t making a concerted effort to change things either. I’m lazy when it comes to myself. I admit that.

I go to great lengths to do what is best for my boys’ health and properly manage their specialized diet. After all of that effort for them, I don’t really want to make the same effort for myself. Yep. Lazy. And it caught up with me.

It was getting to the point where I wasn’t having any days where I felt good. I knew that I had to finally do something and make myself a priority. I knew if I didn’t, I could end up like my mom. She has very poor health and is now disabled. I don’t want to follow in her footsteps.

New Years came around. You may recall that I don't make resolutions. I create change. My change for 2012? Get better control of my health again.

It had been such a long time since I had been in to see my naturopath that my chart was in archives. Shame on me. No wonder I was having trouble! After sharing my laundry list of symptoms and concerns, guess what happened? My doctor placed me on a restricted diet.

NO flour. NO sugar. NO juice. NO alcohol. NO gluten.

Oh crap. It stung when she told me. I am a serious carb and sugar addict. Always have been. I can live without juice and alcohol (well, mostly…), but carbs and sugar? I am already quite the gluten-free expert, so I wasn’t worried about finding whole gluten-free grains to eat. But, seriously? No sugar and no flour? Kill me now.

I will admit that in the week leading up to getting lots of blood work done (and the deadline to start my new diet), I binged on sugar and flour. Pasta, I’m going to miss you! Nom nom nom. Cake, you are so delicious! Nom nom nom. Looking back, it was juvenile and disgusting. At one point, I ate dessert until it made me feel nauseatingly ill. I was ready to make the change. And I did. And I’ve been a good girl!

It’s been about a month since I started this new dietary lifestyle. Most of my symptoms are gone. Surprisingly, positive changes began happening within the first 24 hours of starting the new diet. It has certainly not been easy, but it’s been necessary. And, I feel so much better!

One new thing I’ve discovered is that I cannot tolerate caffeine as well as I used to. It had never affected me before. I used to be able to drink coffee at any point during the day, right up until bedtime, and have no ill effects. Now that my body has much less internal inflammation, I can immediately tell when I’ve had caffeine. I made the mistake of drinking 4 cups of coffee during breakfast one morning and I felt sick until late that afternoon. Since then, I switched to either half-decaf or decaf. I still get my coffee fix without feeling awful. Maybe this is a temporary thing while I work out the rest of my symptoms. Only time will tell.

I think I’ll go grab a cup of coffee now!

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!

Sorry, doctor. You're wrong.

I was doing some shopping at my local vitamin and supplement store when a lady looking at children’s vitamins noticed me quickly placing some products in my basket. She watched me for a minute and then asked if I could recommend some vitamins for her son. I looked over and saw a young boy sprawled out flat on his belly quietly playing with a car a couple feet away from his mom. I asked the mom some specific questions to try to learn about her situation so that maybe I could provide some guidance.

I learned that her 4-year old son was not eating. The mom was grasping at straws to get some sort of nutrition into his body. When he chose to eat, his diet was extremely limited – full of wheat and dairy. Sound familiar? He was also not communicating verbally with much success. The alarm bells were very loud in my head as she shared more with me. While she was talking, I glanced at him occasionally and watched him play with his car on the floor. He was passively listening, only trying to speak or use crude sign language when prompted by his mom. He wouldn’t communicate directly with me, instead using his mom as a translator for his very special hybridized language of Spanish, sign, and English.  

I began to share a bit about my boys and their journey since we learned about autism and their food allergies. The lights seemed to be turning on in her head. She knew there was something going on with her son. It was very obvious to me also, and I had just met him.

This mom had done everything right. She was seeking high-quality supplements to try to help her son avoid vitamin deficiencies from his lack of food intake. She told me his hearing was fine, but he wasn’t picking up speech as he should at the age of 4. Even his own father has great difficulty understanding him.

She told me that she had taken her son to the doctor to discuss her concerns about his lack of speech development and his daily refusals to eat. The doctor told her to not worry about the food thing and that he would talk eventually. His advice was to just give it some more time.  

OMFG! In my head I am going freaking nuts when I hear her say those words. I’m concocting an imaginary plan to go visit this excuse for a doctor and scream obscenities at him.

Give him some more time? He’s four! Obviously something is wrong. Hellloooo! So, the mom should just wait until he enters kindergarten and the teacher has a heart attack when she realizes how delayed this child is? That would be a huge disservice to the child, his family, and his future teachers.

I felt awful for this mom. I was her not that long ago. I had blind faith in our doctors. I heard those same words when I brought my son's delays to his attention. Oh, just give him some time. Boys are slower to develop speech. It will be okay. 



Don't forget...doctors are always right! Especially about cigarettes!

NO! No, it’s not okay! He doesn’t need more time! He needs help! NOW! The wait and see attitude infuriates me to no end. And, now that I have the clarity of 20/20 hindsight, I can almost taste my fury when I hear those same words again.    

Unfortunately, I listened to our doctor longer than I should have and I lost precious time that I will never get back. I finally figured out that I was getting nowhere fast and that I needed to take control of our situation. And I did. And my boys are better for it. I shudder to think where we would be if I had continued to wait per the doctor’s recommendation. It makes me cringe just thinking about it.

I spoke with the mom about food allergies. I also told her about free developmental assessments available in her school district. She was floored that such a service exists. I didn’t specifically tell her to pursue an autism diagnosis for her son, but I mentioned how my boys did many similar things at the same age. And, I used the word autism a lot. I feel very confident that this mom will call the school district to get an assessment for her son. I’m about 99.9% sure that they will find areas of delay and that he will qualify for developmental preschool. I have no doubt. A proper diagnosis will hopefully come in time, but the first priority is getting this kid assessed and qualified for a specialized education.

I gave her my card and asked her to keep in touch with me. I am very interested to see the outcome for this precious boy. I can only hope and pray that he gets the help he needs and deserves. Lord knows his doctor didn’t help him one bit with his ignorant remark. Jerk. Thank God this mom followed her instinct. 

Despite my hurry that day, I am so glad that I chose to take those few minutes to talk with that mom. I can only hope that a seed was planted and that positive changes are on the horizon for her son.  

Moms, you have a wonderful gift of intuition. You know your child. Don’t accept the garbage you are fed if there is any shred of doubt in your heart. Do what you do best and seek the answers for your child. You, like all of us mother warriors, are smarter than your doctor when it comes to your child. Trust yourself.

I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too?

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.        

The juice and yogurt fiasco

Last week I told you about how I took out my juicer from its dusty hibernation. Since I have been known to be a really big wimp when it comes to eating vegetables, it’s easier for me to introduce veggies into my diet when they are juiced along with some beautiful, seasonal fruit. This is something healthy that I like to do for the whole family.  

The beginning of the fiasco...

Recently Monkey had a big issue with the juice du jour I made, which included organic nectarines, organic carrots, and lots of organic kale. The color of the juice was more green than not and I could just tell that getting him to drink it would be difficult that day. I opted to make a quick deal as I served the juice, hoping that I could circumvent any problems before they began.

We love So Delicious coconut milk yogurt. It’s way too expensive, but it’s a wonderful treat every once in a while. I happened to have some in the fridge and I thought it would be an excellent proverbial “carrot on the end of the stick” to entice my boys to drink their juice. After I made the promise that whoever finished their juice first would get to choose their yogurt first, it clicked in my brain that I might have a problem. There was only one container left. How did I forget that before I opened my big mouth?

You see, Monkey did one of his famous little tricks the day before. You may remember that we had to lock up our food because of his antics. I had forgotten that he had grabbed one of the containers of yogurt and opened it without my permission. I walked into the kitchen and he was standing there with the open cup in his hand, and he quickly asked, “Can I have this?” Um, it’s a little late for asking my permission, dude. Ugh. He ended up eating the yogurt that afternoon, but much to his dismay, I made him share it with his brother since he neglected to ask my permission beforehand.

Prince Charming powering down his juice and loving it.

So, no sooner than the bribe incentive of yogurt to the “winner” had left my mouth, I remembered the incident from the previous day and I knew I had just royally messed myself up. There was only 1 container left of the yogurt, which meant no choice at all and 1 kid (the second place juice drinker) would be without. I knew that with my promise, it would be worse if I asked them to split the single container. I double-checked the situation in the fridge and verified that I was about to have a really big problem.

I calmly told the boys the situation, gently reminding Monkey that the reason there was only 1 container left was because he had opened the other one without my permission the day before. The news did not go over well when Monkey looked over at Prince Charming’s cup and realized that he had already sucked down almost all of his juice while Monkey had barely touched his. He figured out his fate as the “loser” of the challenge and he didn’t like it one bit.  

That’s when the tears started. Those tears turned into a raised voice spiked with angst about how it was unfair that he wouldn’t get yogurt when he was done with his juice. He was mad that Prince Charming would earn the yogurt and he would have none. I reminded him about the day before and that I truly wasn’t punishing him. That was just the way things happened and there was no way for me to give him his own container when there simply was none left.



Monkey is trying to drink his juice through the tears.

After about a half-hour of crying and attempts at negotiating with me, Monkey finally asked to talk with his dad on the phone. I knew this moment was coming, so I agreed to let him call only if I had a chance to talk first and explain the situation to Titan. Frankly, with Monkey’s sobbing state I knew it would take him a very long time to get out a string of coherent thoughts that would make any sort of sense to Titan, and I certainly didn’t want to take that kind of time when he was in the middle of a busy work day.

We called Titan at work and I took my turn first and then Monkey had his turn. When things escalate at our house and I’m having trouble reasoning with the children, Titan has a way of getting through to them when they are distraught. He is like the kid-whisperer. It can be quite remarkable.

Sometimes I want to sock him in the arm through the phone when he gets them to settle down so quickly. Really? I’ve been negotiating, talking, cajoling, bribing, threatening, hugging, rocking, and everything else I can think of and we get on the phone with you and they are fine in about a minute? Really? Can I switch jobs with you for a day? Perhaps a week? Please?

Before they hung up, I got a quick run-down from Titan on what transpired and then Monkey and I chatted about the call afterward. Monkey listened to what his dad said, quickly became calm and finished his juice. We went on with our lunch routine, which was now stretching much later into the afternoon than usual. As we wrapped up and began talking about having quiet time, Monkey asked to call Titan again. I told him that it wasn’t a good idea since he was still at work and we had just talked with him, so I offered him the chance to send an email instead.

He was really excited to type his own email! He’s getting pretty good at using the keyboard and this was his first ever email to anyone, so it was a big deal for him. Other than changing the names, here is the email exactly as he wrote it:

Dad,
I finally did it, I finished my nectarine juice in 41 minutes and 23 seconds and so on.
I also tried to be a big boy and be like a superhero third grader
I also played sonic slam with Prince Charming too and we had a fun time together. Did you know that corn on the cob and chicken is what's for dinner?
My favorite food is Corn on the cob rather than juice.

Monkey

I think he did a great job! Don’t you? Now I think I need to brush up on my kid-whispering skills for the next fiasco.

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.