Wednesday, May 16, 2012

a personal update (or, my crash course in autism)

me and my sweet boy

The neurologist couldn't keep his eyes off my son. "The change in him is remarkable!" he said. 

We were back at the doctor a full seven months after the last visit. During that time, I had changed Caleb's diet radically and eliminated gluten, wheat, yeast, dairy, eggs, corn, soy, shellfish, peanuts, tree nuts, sugar, artificial flavors/colors/sweeteners.

As the doctor is shaking his head, marveling at what he sees in Caleb's behavior, he asks, "Do you have any video of him from before the diet change? Because he would make a great case study for the medical board! He is proof that diet change can improve autistic behaviors."

Our neurologist is a believer in the role that diet can play in the treatment of autism, but the medical board of his hospital is not. They are definitely behind the times, and he felt that Caleb's improvement was so remarkable that it would be good for them to learn about his case! During that same appointment, he confirmed what I already suspected, which was (finally) an official diagnosis of Autism Spectrum Disorder (still unspecified at this time). He also agreed that Mitochondrial Dysfunction was a very likely root cause of the autism and we are pursuing further lab testing at this time. 

Originally, I had embarked on this new "diet" as a way to determine if I had food sensitivities. I had just a shred of hope that things could get better for me (you can read more about my journey here). I also had hope that it might make a difference for my son, Caleb. I had heard that many children with autism, ADHD, and various other disorders, benefited from a diet that was free of gluten and dairy products. Oh. My. Word. Not only did I start losing weight and feeling amazing, but my son started to come alive. He came out of his "fog" and was so much more alert and interactive with everyone around him. He began to have more energy and was able to do things physically that he couldn't do before. 

A few more months into this diet change, I began to devote myself to research regarding Caleb and his condition. I had a suspicion that he might have autism, but I felt I needed to educate myself more on what autism was. I began to read everything I could find online. I checked out a few books from the library, and had a conversation with Lexie of Lexie's Kitchen, and read some articles from various medical journals...and my whole world changed. 

Caleb with Grandma (one of his favorite people!)

Not only did I feel that at least SOME of what Caleb had could be explained by autism, but I felt there was a good chance of a further diagnosis for him of mitochondrial dysfunction (when all the cells of his body don't produce enough energy, causing delays and malfunctions in many of his major organ systems). Then, I began to learn about the ramifications of these diseases. I don't want to completely overwhelm you, but in the last two or three months of research, I have uncovered some startling facts. I learned that:

1 .These conditions are caused and/or made worse by environmental triggers. This could be a myriad of things...exposure to pesticides, dangerous gases (like car exhaust), the nasty ingredients in vaccines, constant exposure to allergens, pesticides, etc. We are talking about children whose immune systems are weaker to start with, and when they get exposed to something that is really not good for any of us - it can start a downward spiral. For some children, this happens while still in the womb. For others, it happens when they get immunized or there is a combination of exposures to various environmental pollutants. I am over-simplifying a bit - but it's been quite eye-opening to digest the amount of information there is on it. This is a childhood epidemic that CAN be reversed. I wish that when I was pregnant I had known what I do pregnancies would have looked TOTALLY different, and in fact, my lifestyle before even becoming pregnant would have looked different, too.

2. Children with autism - and ADHD and allergies and OCD - can "recover". There is hope! It takes a huge commitment on the part of the family, but it can be done. Most traditional doctors don't have the answers for this, though - they rely heavily on drugs (as they were taught to in medical school) - while experiential evidence has shown that diet changes, environmental changes, and various bio-medical treatments give the greatest results. Most typical MD's are out of the loop because they are busy with their practices and aren't able to keep up with all the latest research...not to mention that autism has been affecting children at such an alarming rate it's been difficult for them to keep up.  So it's an emerging field that requires a fair amount of research on the part of the parents. But it's SO worth it! 

He's not strong enough to walk, so he's figured out another way to get around...scooting on his bottom!

Here are a few of the recent changes I have made: 
- This is the biggie: I implemented an elimination gluten, wheat, yeast, dairy, eggs, corn, soy, sugar, artificial flavors/sweeteners/colors; and several other things have been excluded based upon my observations of how they affect Caleb's behavior
- I buy organic food only 
- I got rid of my non-stick pans and replaced them with stainless steel (non-stick pans are coated with teflon, which is a known carcinogen that is both food-born and air-born)
- I replaced his PJ's with organic ones (regular pj's are coated with a flame retardant that is extremely harmful for most kids, but especially those with autism and allergies)
- I replaced the kids' soaps, lotions, shampoos, and toothpaste with organic ones
- We stopped using the microwave (it's said that every microwave leaks electro-magnetic radiation, harms food, and converts substances cooked in it to dangerous organ-toxic and carcinogenic products)
- We stopped using plastic dishes in the kitchen (even BPA-free ones) - using only glass, ceramic, or stainless steel instead
- We're using filtered water for not just drinking, but cooking with as well
- We are considering possibly moving out into the country, where the air is cleaner and we can grow more of our own organic food.

This list may seem to some like I have gone off my rocker and become a totally paranoid mama. Though I confess there are days I feel like that (!), those who have known me a long time can attest to the fact that I was never a person who cared about these sorts of thing before. That's what knowledge does to you. When you discover that there are things that you thought were perfectly harmless, making your child sick, you start to feel a little sick yourself. It's taken me weeks, months, to process what I am learning...and I'm still processing. But, after you pick yourself up off the floor, you realize that some of the knowledge you've gained can be converted to power. In the same way that all these things contribute to my child's illness, removing them and replacing them with healthier options can actually help in healing my son. So, while it is very overwhelming, it's also very empowering. I don't have a son with an illness for which there is NO help. Granted, you will find medical professionals who will tell you that. But it's not true. I've read too many hope-filled stories of mothers helping their children to recover from autism. 

And I plan to add our story to that list.

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed...Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are bing renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." - II Corinthians 4:7-8, 16-17


  1. This is so great to hear Courtney. Caleb is just adorable. I couldn't agree more that diet can truly change behavior... I look forward to following your journey...

    1. Thank you Megan! Nice to "see" you on here. :-) Yes, I've truly been learning that "food can either be the best kind of medicine, or the slowest form of poison". I can't remember who that quote is from, but it's so true!

  2. Thank you for sharing. We're still in that "figuring out what the heck it is" stage with my son, too. So far, we've gotten PDD/NOS with the need to rule out Asbergers, Anxiety, ADHD, and so on. Our biggest challenge is actually getting him to eat. His diet is quite limited and gets narrower every month (more things he adds to his "I don't like it" list). How did you get your son to transition to new foods? Was it a battle, or was he good at trying new things? BTW - Megan is my cousin and shared your blog with me. :-)

    1. Hi Laura! I'm so Megan shared this blog with you. You know what book was really instrumental with me in the "figuring it out" stage? Actually, there were two: Healing and Preventing Autism, by Jenny McCarthy and Dr. Jerry Kartzinel, and Mother Warriors by Jenny McCarthy. If you haven't read them yet, I strongly recommend that you do. My son has significant muscle weaknesses that also mean he can't chew, which means he's dependent on me pureeing up his foods and feeding him. Which means he pretty much has to eat what I feed him! But one of the reasons I recommend the books above is that other parents have had those same questions/feeding dilemmas. Some of them have learned how to make gluten-free chicken nuggets, for example, and actually went to Burger King and purchased a bunch of clean, empty chicken nugget containers...then put their own gluten-free chicken nuggets in the Burger King containers to fool their kids. It worked! You may not have to go to such great lengths, but what I've learned is that it is worth it. Gluten and dairy contain proteins that are so difficult for these kids to digest, and it becomes like a drug to impairs them neurologically (and physically, in their intestines and bowels) and yet, just like a drug, they are often addicted to these foods that are so bad for them. That's where us moms have to put our big-girl pants on and DON'T GIVE UP!! Only offer him foods that are safe and healthy for him, and eventually he'll be hungry enough to eat something that you offer him. This is where the Mother Warriors book was helpful to read...because it really does take a "warrior" mentality to pull this off. You can do it!! If you want to talk more about this, feel free to email me at courtney.goodwin [at] .

  3. I came across your blog via Pinterest when looking for soy/gluten/dairy-free ideas for my family. So glad I found your blog, and your story. Your son Caleb is absolutely beautiful. Have a great 2013!

  4. I am wondering if you can tell me what he DOES eat?

  5. Wow. You sound like a wonderful mom! I'm so happy for you that the changes your elimination diet had such a great result for you.
    My son has tons of life threatening food allergies so we have eliminated many foods from our diet as well. With the emergence of his newest allergies (rice, soy, wheat, sweet potatoes, tomato, etc) I too have eliminated all coated pans and plastic and we are now moving towards organic as well.
    I so wish they would do more research in this area...I think they will find it effects us (and our kids) in so many ways.


Thank you SO much for your comment! Have a fabulous day! :-)