Stacy's Books

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Sundays with Gage – Autism One

A few weeks ago I had the good fortune to attend the Autism One conference in Chicago.  I was there for 3 1/2 days and came back with a renewed zest to heal Gage.  This conference is for people who reject the notion that autism is a strictly psychological condition and treat it as a medical one.  I’ve been on board with this approach for a year and a half and was ready for a crash course.  I can’t cover everything I learned or already knew (by the way, this is why there are so few autism posts on here – I start writing and the post becomes unmanageable) but using Oprah’s book as a guide, I’ll just tell you the things I know for sure.

1)Kids on the autism spectrum are being recovered.  I spent most of Wednesday listening to mothers who healed their kids and they are no longer on the spectrum.  Do you want to know what the secret is?  They all started by healing the gut.  The brain issues that get a kid diagnosed with autism start because the gut is compromised and toxins spread to the brain.  All of these mothers started with a casein/dairy free diet, no corn, soy or GMOS, and little sugar.  With this new diet they also added supplements to heal the stomach and for some this is all it takes to be on the road to recovery. The trick is to find the correct supplements and diet that works for your kid.  Because every kid is different and not every one is recovered.  A note about the diet – once the child’s gut is healed some of these foods may be added back in.

2)Traditional doctors are of very little help.  Most of the doctors who are DAN or MAPS doctors (docs with biomedical training for kids on the spectrum) now were traditional MDs who had a child with autism that set them off on this path of what kids with autism have in common medically.  It’s quite a bit actually.  Gage’s pediatrician has been of no help whatsoever, you will read more of her when I talk about vaccines.  If a parent wants a recovered kid most of the work is on them.

3)Leaky gut is not something traditional doctors believe exist. And because they don’t believe it, they don’t see how things like toxins, medicines, vaccines can contribute to autism.  I did not say cause I said contribute.  Without the leaky gut these things could be eliminated from your body without a problem.  So, is the leaky gut to blame?  I won’t get into the complexities of the leaky guy here but I’d be happy to answer any questions if you have them.

4)Some of the talks were above my pay grade.  I went to one about Vitamin B numbers being off with kids on the spectrum and I was ten minutes late.  Those ten minutes must have been very important because I sat there for 5 minutes and had NO IDEA what he was talking about.

5)I’ve not talked about vaccines on this blog because it is a lightning rod for vile, disrespectful comments and if that happens I’ll turn the comments off.  Feel free to email me if you want to talk about it.  Okay, there were lots of doctors talking about vaccines at this conference and I listened to two panels.  They pretty much expanded on my own views after the past year and a half of research.  Let me tell you the one thing I learned.  Nine months after Gage ended up on a ventilator and a dairy allergy was put on his medical record our pediatrician gave him a vaccine with casein in it without consulting me.  This ushered in another round of severe head banging and it is also when he was diagnosed with PDD-Nos. Did his doctor know that the vaccine had dairy in it?  I don’t know.  As a parent it is your responsibility to do your own research. There are kids who should not receive vaccines at all and there are kids who shouldn’t receive certain vaccines.

6)Medical testing is vitally important and insurance rarely covers it.  On the same note, traditional therapies are not properly covered either.  Gage gets 20 ‘free’ OT and Speech sessions a  year.  These ‘free’ session cost me $60 co-pay every time.  Thanks insurance, you’re a real help.

7)There’s more that I’m forgetting right now, but I’ve bored myself already!  If you are interested in checking out any of the sessions (maybe I’ll recommend some next time), here’s a link to all of the videos .

I’ve been asked a few times over the years (even just yesterday) what a parent should do if their kid is diagnosed and I always say to start with a gluten free/casein free diet.  It is not easy and to do it correctly the gluten has to be out for at least nine months, but it is the best place to start.

June 7, 2015 - Posted by | Autism, Gage

23 Comments »

  1. Thank you for sharing your thoughts! Very interesting and I’m sure you picked up a lot of new info from the panels. It’s hard to do your own research on the internet unless you find like-minded forums. Good luck with implementing your findings and just know that Gage is lucky to have you as a mom!

    Comment by Rita @ View From My Home | June 7, 2015 | Reply

    • Every mother’s road is a different one (thank you for sharing yours with me) but to understand each other is important. Hard to write about well when I’m in the middle of it but important because so many kids are bing diagnosed now. In New Jersey, 1 in 27 (or 29) boys is now being diagnosed with autism. Scary.
      Oh, and my Facebook group of moms has been THE BEST resource for me. So blessed to have found them.

      Comment by stacybuckeye | June 7, 2015 | Reply

  2. You are a warrior and a wonderful mother for Gage. I hope he realizes how lucky he is one day. To be honest, I don’t think traditional doctors are much help with anything – they don’t listen and spend very little time with patients.

    Comment by BermudaOnion | June 7, 2015 | Reply

    • Yes Kathy. Sadly, the more I read and research the more convinced I am that most doctors don’t have a clue. But, there are good ones out there willing to listen and learn new things. We found a new neuorologist who I love who has been very helpful. The first of 12 doctors I can say that about!

      Comment by stacybuckeye | June 7, 2015 | Reply

  3. I’m happy the conference was so informative. You are, without a doubt, Gage’s best advocate… he’s a lucky boy to have you!

    Comment by lakesidemusing | June 7, 2015 | Reply

    • Being his best advocate is exhausting 🙂

      Comment by stacybuckeye | June 7, 2015 | Reply

  4. I think it is such a big challenge to deal with elimination of both gluten and casein! and to add to it: natural pickiness of kids! I don’t know how you do it!

    Comment by rhapsodyinbooks | June 7, 2015 | Reply

    • He is a picky eater and his diet is not where it needs to be BUT he is casein and dairy free. Easier to start when they are too young to realize the gf bread and df cheese taste like crap.

      Comment by stacybuckeye | June 7, 2015 | Reply

  5. I’m glad that you are following your instincts as a mom and educating yourself and choosing what is right for Gage. It’s not an easy journey but I can tell you that being Gage’s advocate is the best thing you can do for him! Kudos to you for sharing your journey here on your blog. I hope we can get together soon and catch up…I’d love to hear all that is going on!!

    Comment by Bonnie | June 7, 2015 | Reply

    • Yes, as you know, it can be a lonely and frowned upon path, but one that has only Gage’e health, regardless of the diagnosis, as the goal.

      Comment by stacybuckeye | June 7, 2015 | Reply

  6. Stacy, sounds like it was a good conference!

    Comment by Mary | June 7, 2015 | Reply

  7. I’m glad you felt like you learned something at the conference, and I applaud you for your strength. Gage is lucky to have you for a mom.

    Comment by Anna | June 7, 2015 | Reply

    • I’ve been sick for over a week so my strength comes with a price 🙂

      Comment by stacybuckeye | June 7, 2015 | Reply

  8. Nodding my head through your post! A friend went the route that you are on with her son and has had good success. He graduated high school last week and is planning on going to community college.

    Comment by Nise' (Under the Boardwalk) | June 7, 2015 | Reply

    • So nice to hear success stories and congratulations to your friend!

      Comment by stacybuckeye | June 7, 2015 | Reply

  9. […] picked up these three books at the Autism One Conference.  I was able to hear all three of these ladies speak.  I picked up Our Greatest Allies by Maude […]

    Pingback by Mailbox Monday – June 8 « Stacy's Books | June 8, 2015 | Reply

  10. I’m so glad you are learning all you can. Gage has the best advocates in his parents. You two are amazing!

    Comment by Heather | June 8, 2015 | Reply

    • Trust me, we’re just average parents with more stress 🙂

      Comment by stacybuckeye | June 8, 2015 | Reply

  11. I’m still not entirely convinced by this argument, but am interested in learning as much as I can about it. My 9-year-old son (and Mum) have Aspergers and I’ve found lots of things that help (routine, writing instructions down etc) but food doesn’t seem to have any effect. Perhaps I just haven’t done it for long enough? Good luck with Gage – I hope you have some success.

    Comment by farmlanebooks | June 8, 2015 | Reply

    • Routine and schedules help Gage too. Going gluten free really helped him, but it took me months to find all of the hidden gluten in foods. My best example is dried beans. We starting using them in sensory bins after we’d gone gluten free and some of his stimming/hyperness came back. Curious, I called the bean company and they told me that the beans were processed on the floor next to barley, therefore being cross contaminated with gluten. Once I got rid of the beans the stimming and hyperness got better. So, I think it really takes months to go completely GF and then they have to be on it for 9-12 months for the stomach healing to begin. And the younger the better. It’s going to help a younger kid more than an older one because more damage has been done the older they get. That being said, as like any treatment, it doesn’t help every kid. The last ARI survery (2009) said the GF/CF diet helped 69% of the kids who did it. I know that it was a game changer for us so I always recommend it as a starting point.
      Also, I think the gluten in the UK is of a much better quality than in the US so it’s possible that the effect wouldn’t be as noticeable. My gluten-free friend could eat pastries in France with no problem but back home she doubles over in pain. We use an abhorent number of nasty pesticides here.

      Comment by stacybuckeye | June 8, 2015 | Reply

  12. Thank you for sharing, Stacy. My knowledge of autism is so limited, but it does seem like it is more prevalent today than it ever was in the past. I hope that with this increase and the information coming out of the research and experiences of families who are dealing with autism that doctors, especially, and educators will become more educated as to the signs and treatments out there.

    Comment by Literary Feline | June 8, 2015 | Reply

  13. Thanks for the information, Stacy.

    Comment by Lloyd Russell | June 12, 2015 | Reply


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