How to find the recovery stories here

Hey guys!  Life is just so full with three busy kids, I cannot seem to keep up with my blog.  However, The recovery information here is absolutely still valid and helpful.  So rather than needing to find the search button and type in the right words, here are the three recovery stories in order:

Tony's story

Grace's story

Kate's story

Click the links.  I hope this helps!!

There are many other autism links and helps in my blog posts, but these are the starting point.  Feel free to poke around and I hope this helps you on your journey.  xoxo

Remember, recovery IS possible.  Anyone who says otherwise needs to be moved to the side while you do what's best for your people.  Also remember, recovery is a marathon, not a sprint.  It takes time and you need to take care of yourself in the process.

Love and hugs to you all!

Grace gets brave

The other day, while Grace was still getting her feeling for riding her bike sans training wheels, she noticed two little girls in our neighborhood ride by on their bikes... also without trainers.  She watched them ditch their bikes and start playing at the park across the street from our house.  She came over and told me they were riding without trainers.  It's so funny how once something becomes important to you, you suddenly notice it everywhere!  :)

Anyway, she just stood there watching.  I knew what she was thinking... she wanted to go play with them.  But she was nervous.  See years ago, when she was just beginning to come out of autism, she wanted to play with other little girls.  But because her language was odd (she had echolalia and jibberish talk for a very long time) the little girls in our neighborhood didn't want to play with her.  She would wait in our back yard for them to come out and when they did, she would smile at them, looking for an invite.  (Oh if only they'd known what a miracle it was that she was looking them in the eye!!)  Two little twerpy girls in particular, looked Grace right in the face, acted all scared (they were 2 years older and much larger than Grace so I cannot imagine what they were afraid of) and ran away from her, giggling and pointing at her.  Tony and I would hug and comfort her but my heart would break as much as hers did.  And she learned way back then that kids can be mean to those who are different. No matter how much we tried to tell her it was them and not her that had the problem, she was still wounded to the heart at such blatant rejection.


So all this is going through my head as I watch her watching those little girls play.  Since that last time she made an effort, years ago, she has not been able to initiate conversation with girls her age.  She can make friends with boys much easier than she can with girls.  She has told me countless times that she wants to make friends with some little girl but she's afraid and no matter how I encourage or try to facilitate, she usually stands on the sidelines of the fun watching and wishing, but afraid to act. 

So per usual, she watched and watched those little girls, pining to go play.  Of course I watched her, with an ache in my heart and my heart in my throat, trying to look nonchalant so Grace wouldn't pick up my "crazy vibes".

She finally screwed up her courage to whisper to me that she wished she could go play with them.  That alone was pretty huge.  She is pretty private about that issue as she is very embarrassed  by her inability to initiate play.  But the next part was even HUGE-er.  You won't believe it.  :)


So there I was, not sure what to say but wanting to encourage her to rise above her fear.  Somehow I managed to keep my voice calm and said "Go ahead".  She said she didn't know how.   I told her to just run over and with a smile on her face, say "Hi!  I'm Grace. Can I play?"  I have a lump in my throat just remembering the sight of her walking all the way over, SUPER slowly but with almost palpable anticipation of being able to join in. First time ever that I have seen her expecting to be included. 


And she did it.  She DID IT!  Do you know how awesomely amazing that is???  She, my shy sweet little thing, picked up the pace on her slow walk and by the time she got near them she was almost running.  She said some approximation of what I told her to say and those little girls, God bless them, said "Yea!  Come play!"  I am not given to tears easily but that did make me tear up watching her face light up and join right in their game.  I just stood at the door of my house for probably a good 30 minutes watching her run around the park with completely new friends; divine joy on her face. 


I am SOOOO proud of my little girl.  I have worried for years over her inability to initiate.  I think I can quit worrying now.  I love my girl. 


And I'm a pretty big fan of those little girls too.  ;)

AutismOne conference is free this year!!

If you can get there, get there!!!  They will even have free childcare by the SonRise people!!  You just can't beat that.  Please pass this along .  What a great gift from AutismOne to make this information available to everyone.  While I'm no fan of Jenny McCarthy, the line up of speakers is something you don't want to miss.  :)

From the site:

A Gift from Our Family to Your Family

FREE Registration to the

AutismOne/Generation Rescue 2011

CONFERENCE

The Largest and Most Comprehensive International Autism Conference is now FREE

Keynote Address Jenny McCarthy & Byron Katie

150 Autism Experts
5 Jam-Packed Days of Presentations
6+ Specialized Content Tracks
May 25 – 29, 2011, The Westin Hotel, Lombard, Illinois

The future of autism recovery begins now! 

We are thrilled to bring you the, “Autism Recovery on a Budget: Empowering Parents,” conference registration for FREE.

Recovery depends on education, not on how thick your wallet is. But first you need to know how to help your child. You need to know the most effective treatments and therapies. You need to know when certain interventions are appropriate and when they are not. You need to know hope is real.

It’s time to open not only our hearts, but our home. And so it is with open arms we invite you to come and share with the AutismOne family what we have learned collectively over the past decade. It’s time to embrace every family affected.

Currently constructed autism costs too much. One of the biggest obstacles to recovering children has always been the cost of educating parents. We believe answers need to be free.

Each year we learn how to do more with less and each year the conference is a reflection of the ever-growing body of accumulated knowledge.

Each year we learn more about how to prevent autism or minimize its effect. Each year we learn more about dealing with autism in adolescence and adulthood. Each year we learn more about the underlying biomedical issues at work.

This year we will have the chance to share with you what we have learned whether you are a woman thinking about having a child or a parent with a child aging out of the school system or a mom facing autism for the first time.

This year we will help you learn about taking care of yourself. For the first time, this year, we will train practitioners to implement the biomedical mission of care.

This year we will train more attorneys to fight for you and first responders to help protect your family. This year we will train more students to assist your child, advocates to challenge the system, teachers to educate your child, and professionals to embrace recovery.

This year we welcome parents who have not had the opportunity to learn what they must to help the ones they love the most.

We will teach you, we will guide you and provide you with the tools and education and together we will begin the journey of recovery.

- Ed and Teri Arranga, conference directors and parents to Jarad and Ian.

Our interview with Innate Motherhood

Here is a link to the interview.  I met this mom at an autism recovery conference probably 2 or 3 years ago.  She does not have a child with autism herself but is very in tuned with the autism community as her husband and extended family work heavily in this community.  The site is based on the premise that the body has an inborn ability to heal itself and keep itself healthy as long as there are no interferences.   Stay and look around for a while.  The information on her site is very informative!

I hope you enjoy!


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Innate Motherhood:    “After being disappointed with the mainstream approach to healthcare, more and more people nowadays are learning and turning to natural options to deal with their health challenges.  What was the first “light bulb moment”, so to speak, into the natural philosophy that led you to recovering your children from Autism?”
 
Wyndie: “Hmm, my lightbulb moment is pretty amazing actually.  It was right after the doc ever so casually applied the autism label to my oldest.  I remember just sitting there in a daze while he finished talking.  When he left the room and I was gathering my belongings to leave, his nutritional coach looked me in the eye and quietly said “It doesn’t have to be permanent; it can be reversed.”

WHAT????

That was the moment I realized mainstream was not the only option.

 Innate Motherhood:    “We are starting to see parents question the safety and effectiveness of so many mainstream interventions, and have a growing interest and want for more natural information, not only for themselves but for their children.   With so many types of health challenges that children with Autism face, we understand that parents like you are trying to give their children optimal recovery by utilizing multiple approaches to regain nuerological, brain, immune function, and overall body function. Could you summarize the different types of natural help you have done for your children and how each has been vital in your childrens’ recoveries.

Wyndie: Well this could get wordy!  (Lol)

We started almost immediately with the multi-faceted testing available through Great Plains Laboratory (www.gpl4u.com).  This was so important because with this, we saw mitochondrial dysfunction in one child, we saw high blood ammonia, we saw parasites, yeast, pathogenic bacteria, we could basically get a snap shot of many of their body systems that were in great distress.  These tests showed me things we would never have seen with traditional testing.  Regular docs don’t even know what some of this stuff is but it was vital to have this information so we could treat them effectively.

 We loaded everyone up on multiple supplements (www.nbnus.com) to make up for deficiencies that were too drastic to overcome with food.  It’s different for these damaged kids… their body burden is sooo heavy with toxins that they cannot get real nutrition from their foods.  Most of them won’t even eat real food.  When we first started recovery, two of my kids were living off of chicken nuggets, pop tarts and oreos.  It’s completely impossible to build up a body’s immune system on that diet!!  These supplements were vital and the testing showed me exactly what supplements could target what problem.  These two things are so important to start with.

 Having a health coach who was fluent in autism was a life-saver for me.  She gave me books to read and guided without being intrusive.  She was there for me at every turn and answered questions that were probably incredibly juvenile, yet she never made me feel like I was inferior.  She became my partner in health who shared the same goal I had… getting my kids back!

Then we worked hard on diet.  I am a military wife so the military approach in this house works just fine.  I know many parents are too guilt-ridden to force their children to eat well.  A friend told me that if she had waited for her child to cooperate in his recovery, he would not be recovered.  We felt the same way, we didn’t give the kids choices in their foods.  I now saw food in a completely different light… it was killing my children’s brains.  We went through our pantry and locked up everything that had gluten or sugar in it. 

Seriously, we have a locked portable pantry b/c my husband, being a grownup, eats what he wants and while I will not try to control his intake of gluten or sugar, I insisted that these items not be where the kids could get to them.  Kids going through withdrawal will do crazy things to get their drug fix (gluten/sugar) and I wanted to be able to control their food intake 100%.  Diet is absolutely crucial in recovery.

 We hunted around through the various autism diets before we found one that I could fit pieces into our lives without making me crazy.  As we learned how to eat the Body Ecology Diet (www.bodyecology.com) way, my kids made huge improvements!  This diet controls yeast much better than anti-fungals and yeast protocols do.  Food is sooo very important.  There are no free bites of food.  If you put something in your mouth, it will either hurt or harm you.  Up to this point I had only given the kids harming foods (b/c I didn’t know better) but when I learned how deficient their bodies were in basic nutrients, we drastically changed their diets.  I will freely admit that my son went on a food strike b/c he could not have his gluteny chicken nuggets.  I bribed him to eat a bite of veggies with promise of a bite of nugget.  It took him three days to agree.  During that time, I would offer him food, explaining if he would take just ONE bite, he would get his nugget.  On day three, he agreed to gag down a bite (with much drama).  Once we established that pattern, he would have to eat more and more veggies to get a bite of nugget.  Then I switched to gluten-free nuggets.  This took some time but he and my daughter both made great progress.  My son actually didn’t have asthma any more once he was gluten-free.  That was a biggie b/c up to that point, he had to take 5 meds daily to be able to breathe!!!  Everyone’s eczema went away and we started getting eye contact.

 We also chose to use chiropractic therapy.  Since I was still very new to this alternative way of thinking, I needed a lot of help.  My regular doctors abandoned up and refused to help.  So a chiropractor was the easiest person to turn to.  Our chiro knew everything about how the body worked and how to keep the CFS in line, how important it was to detoxification.  We went 2 x a week for about 2 years.  This was especially critical while we were chelating.

 Next up, we did chelation.  We had spent the first year loading up the kids with minerals and taking care of deficiencies as best we could.  But those metals had to be moved out of their bodies.  I spent months researching methods.  I had already been told that I could not count on the military docs to help in any way so I sought out an integrated doctor.  These doctors are useful b/c they had an MD and can write scripts and oversee things as necessary but they are versed in alternative medicine so when I proposed chelation, he didn’t squawk, he just agreed to help with testing and checkups.  During chelation it is supremely important that minerals intake be kept optimal.  Chelation does remove metals but it also removes minerals.  We gave copious amount of minerals daily and our doc ran blood tests every 3 months to make sure we were still on track in that area.

 I chose an oral method of chelation.  Obviously I could not do IV since the ped would not help and oral is easier anyway.  There is a wide range of information about forms of chelation and we chose to go with the safest method.  In fact the way we did ours was less harmful than the way the FDA recommends for lead poisoning.  Andy Cutler (www.noamalgam.com) has detailed out a practical way to use oral chelation on children and he gave us much help during the preparation phase.  We started at 3 mg of DMSA every 4 hours around the clock for 3 days.  This way, when the DMSA grabs the metals, it gets reinforcement to carry it all the way out.  When a person gets a bolus dose of DMSA and no follow up, it only moves the metal but doesn’t remove it from the body.  With continual dosage, the DMSA is given enough time to escort whatever it grabbed and leave the body.  We saw improvements almost immediately and within 3 rounds of chelation, my son became typical.  It was amazing to see!  He could function out in public.  My older daughter gained speech and cognitive reasoning.  My younger daughter absolutely reeked of lead during chelation.  For her, chelation resolved the posturing problem she had lived with all her life.  Her wrists and ankles had always turned in, and with chelation they straightened out.  She also started absorbing food and stopped looking like a starvation victim.

 We were able to finally get to Occupation Therapy (OT).  When a child is so ill, it’s almost cruel to have them do therapy.  As another good friend said, it’s like asking a child to run a mile with a broken leg.  But since we had cleaned up their brains a bit, we felt it was good to help them catch up on all the things they had missed.  My son could not even rotate his trunk (at the age of 7), had no balance and still had sensory defensiveness/seeking.  My older daughter had missed SO many milestones, she just needed basic skills but she also had major sensory issues so OT helped them with all of these issues.  It was important that they be able to catch up with all the things they had been too sick to do.  My poor son told me later that while he had autism, he always felt like his body was floating off in space and he couldn’t be grounded.  That explained so many of his odd behaviors!  I cannot imagine living well if I felt like I was not grounded to the Earth.   My younger daughter did not need OT b/c we had started her recovery so young and she had not missed more milestones than I could help her get back at home.

 We also chose to use neurofeedback.  This really helped with anxiety and focus.  My son was always very VERY anxious and this completely removed that anxiety.  For my older daughter it helped with language and attention.  We did this therapy for about 3 years, taking a break in the middle.

 Whew!  That’s a lot of stuff!  lol

Innate Motherhood:   “As chiropractic patients and wives of chiropractors, Erica and I strongly advocate for and recommend chiropractic care for family wellness.  We provide much information on our website that show the benefits, success, and need for pregnant mothers, infants, children, and anyone suffering from health challenges.  There are so many misconceptions about chiropractic, but what we found is a wonderful success story can transend and debunk these claims, and inspire those seeking great help to be open to it. Can you tell us your personal chiropractic success story and how you came across it for your children and yourself?”

Wyndie: Well as I studied about recovery, I had heard from many others that chiropractic care was important, but like all things money is a factor.  We put it off for a bit while trying to figure out what things took precedence for our bank account.  The more I learned, the more I realized that it was more than important, it was vital b/c the kids were SO toxic and that detoxification process would not be easy, but it could be made worse if their CNS was not in line.  I could clearly see in my mind, a kink in the detox process if I did not allow chiropractic.  So with this on my mind, I went to the health food store and low and behold, there was a chiropractor there that day!!  He was so friendly and even though my son was very afraid of him (remember anxiety and selective mutism were major factors for him), he had kid-friendly toys there.  He was so gentle with the kids and respected my sons fear, not getting in his space and tolerating the mess my daughter was making of his stuff.  J  We talked and I just blurted out that I wanted to chelate and what did he think of that.  Interestingly, his wife works with kids with autism in the school system so he was not new to the subject and he explained in English why it would benefit them to have chiro care and that he WANTED to help.  Now remember I talked about my pocketbook?  Recovering children is excessively expensive.  Just one child can bankrupt you… we have three.  So the first visit in his office, we discussed finances.  He lowered his price to barely anything so we could afford him.  That won me over right there because he was choosing their health over his bank account.  I have found this to be the case across the board with chiropractors.  We have had more than one chiropractor through the years but always the important thing to them is to align the body and restore the software that God put in our bodies and we had messed up.

We continue to see a chiropractor two times a week.  For some time we were down to every other week, then once a month, but upon getting a moving x-ray, we saw some really intense spinal issue that needed more frequent care. I will never be without a chiropractor again.  Although autism is gone, our goal is not to just survive but to thrive.  I believe you cannot thrive in this toxic world without having a good diet, clean water and a straight spine.         

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Where is a parent to begin??

The world of autism recovery is truly overwhelming.  Having a child with a diagnosis and an inability to function well makes things difficult enough but then wading through the information available to you is mind-boggling.   BUT today it is so much easier to find the right resources.  Many parents and organizations on the internet today are just waiting there to help you.  One organization I love is TACANOW.org.  TACA is run by parents whose only goal is to help their children and other parents, not to pad their pockets with your misery. 

In the last few years, I have seen many organizations come and go.  Some start out with fire and quickly fizzle out, but parent run places tend to last because, let's face it, there's no shortage of warrior parents with affected children.  I highly recommend this article as a place to start your journey.

I wish you love and God's blessings as you endeavor to bring your child back to health.

Autism, look what you've done to me

I generally try not to gripe too much. Well except to my mom b/c she's my sounding board so she hears some of the exhaustion and frustration, but mostly I'm upbeat about things. I'm a glass half-full kinda girl.

But the other day I was telling my doc how frustrated I was over all these allergies. Eleven years of food allergies that rule our lives and cause mind-numbing terror to our parently (yeah I know that's not a word) souls. Yeesh. He gently said "But look at your life now. Would you be this person if life had been different? Would your kids have their tight loving bond if your family had gone differently?" I blithely agreed that it was good but then came home and thought on that hard.

Before autism, I was all about the hair, makeup, clothes, shoes, cars, perfect house, perfect everything... all the shallow things in life. I was all about me.

After autism, those things just don't matter anymore.

Somewhere along the way autism did something weird to me, it made me grow up.

I stopped caring about hair, makeup, clothes, cars, frivolous things. Not that I don't take care of myself but now instead of scheduling an every 6 week hair appt to keep the color perfect, I get a haircut a year if I'm lucky. Makeup? It happens sometimes but generally only when I have a speaking engagement. Clothes? I shop at goodwill now and am happy to have clothes without holes in them. I don't even know what's in style! Cars? I have one, husband has one. We'll drive those things into the ground before we think of spending a dime on another vehicle. Shoes? I'm still wearing shoes from 10 years ago. I did buy a pair of sandals last year but it was a necessity.

My perspective has changed 180 degrees, to say the least. My house is nice but definitely not perfect. Rather than spend my hours making things just so, I spend my hours in the kitchen making sure those kidlets have good nutrition going in. I still have tons of pictures that should be on the walls. The walls are in desperate need of painting. Instead of trying out the latest restaurant, I spend time figuring out how to make my garden grow. Instead of googling to find the perfect gift this year, I'm on chat boards and forums, reading the pain of others still in autism and trying to help... feeling helpless and wondering if I'm making a difference. Am I giving someone hope? Is someone encouraged by my words? Instead of trying to make the world revolve around me, I am thrilled to know it doesn't.

At many points during autism recovery, I didn't get haircuts. That money was necessary for supplements, testing, procedures, doc consults, food. I WANTED a haircut, there just wasn't justification for it. Now, it's different. There is so much more to life than trying to look perfect (no one is anyway so why pretend?). I enjoy a nice hair style. I like looking nice, it's just not my everything. My car isn't perfect but it's not a big deal. My clothes are far from lovely but it's not important. People are important.

And I think that's what I missed before autism. When it was all about me, people didn't matter. It disgusts me a little to think of the level of selfishness back then. Double yeesh!

But you know what is amazing?? When autism found us, people EVERYWHERE jumped in to help. Looking back, it is astonishing to see how many hundreds of people rushed to my aid. Yes, many of them were virtual helpers known only to me by their sign names on chat boards. Many others were real life people who went above and beyond to help us. A community of people I never knew existed jumped at the opportunity to help complete and total strangers. And I will always be indebted to each one of them b/c they taught me to give unselfishly of myself in the pursuit of even just a single child.

That's what autism did to me. It introduced me to a whole group of warriors. It made me leave behind all the selfish & vain pursuits of an empty life. It made me put aside my southern belle gentility and become someone completely real. Gone is the self-absorbed woman-child and in her place stands a warrior-mom who loves her family fiercely and sees the world through completely different eyes. I get to marvel at my children's achievements. How many parents don't see the wonder of their child's laughter, their sparkling eyes, their beautiful toes, their wonderful brilliance? I'm sure many parents appreciate these things but before autism, I was so wrapped up in me that I often didn't appreciate the miracles living under my own roof.

So autism although I still hate what you did to my kids, for this I thank you. Thank you for causing me to grow. Thank you for giving me the opportunity to reach one more family and extend a little bit of hope.

And thank you Lord Jesus for allowing autism to teach me.

Conference is done

And I am tired! It's funny b/c this was by far the smallest conference I have done but it was just as emotionally charged. I think every time I talk will be that way... maybe it will get less so the more I do it.

I didn't just speak at this conference, I also worked for Body Ecology. I represent them at many conferences throughout the year. This diet is not easy and I have done it (and still do it) with three kids so it's encouraging for other parents to speak with someone who's been there done that and can hold their hand through the hard part..

Months ahead of a conference, I project how many will be there (based on the conference coordinator numbers) and work to make reservations for hotels, vehicles, plane tickets, etc. All the little details that have to be done ahead of time. Because this one was in my home town it was not complicated in any way. No reservations were necessary although I did have supplies from Body Ecology shipped. Unfortunately the conference heads did not give us a very accurate number and we planned for 250. Twelve docs showed up. Although I do not appreciate the misrepresentation on the part of the conference heads, I still made some good connections. Twelve more chiropractors are now trained and ready to help children with autism get better. I know not all children will recover 100%, but I do believe the majority of children will be improved to some degree.

One thing you hear over and over from parents of children with autism is that they have gut problems. If all a parent treats is the gut, that cannot help but improve a child's quality of life! (Imagine having constant gut pain... would you be cheerful and playful? Yeah, me either!) But of course these docs are trained to do so much more. I had some time to speak in depth with several of them and it's so wonderful to see these doctors who are willing to go against the mainstream, to be the odd man out, to seek out (and find) answers to helping these sweet children. So, SO precious to me.

It's also wonderful to see people, vendors and doctors alike, who have no child with autism and yet they fight like the dickens to help. God bless those who work so hard to help the wounded. Those are my heroes.

Preparing for a conference

As I sit here preparing for this weekends speaking engagement, I am struggling with getting my mind organized. I have a general speech, which is just our story of the kids lives through autism and recovery. I don't give medical advice or anything, just share our story. I am the only speaker who shares a story in this fashion, all the other speakers are professionals of one sort or another. I am the "giving hope" speaker. I love that. I love that our story gives hope to others.

This time is more difficult though. There will be only doctors there, no parents. (Well I'm sure some of the docs are parents but they are there for professional training) In the past, I have always catered my speech to the parents because they're the ones who need to hear that it can be done. This time I need to focus more on how professionals can help parents. I am having a terrible time tweaking our story to encourage docs rather than parents.

It is, as always, a heart wrenching experience to be going through their stories once again. When you add pictures to the story, it becomes so much more poignant. The horrors captures on film speak louder than just hearing it from the mouth. Pictures really are worth a thousand words and we've got alot of pictures. :) It is such a blessing to see where they were and where they are now. SUCH a difference.

Praise God!! :D

May I continue to appreciate the blessings in this house before they are grown up and living lives of their own.

Grace's story

I've finally worked up the nerve to re-live Grace's story. Her story started out much the same as Tony's in that she has lots of allergies at the beginning of life. She reacted with hives to the hospital Pampers and had random hives during her first year. We treated her as though she was allergic to dairy and avoided it on principle. However at a church function when she was 6 months old, a well meaning person gave her a Cheeto while I was not looking and she immediately started reacting with anapylaxis. After that, we made it clear to others around us that she was not to be fed anything that did not come from us. We continued to let her go in the nursery but it was spotty attendance there at best as I was uncomfortable with the lack of consideration on others part (see my nursery problem with Tony in the beginning of his story and you'll understand) and she was a really quiet baby so she was no problem to tote around with me.

Around 9 months of age, she got a huge amount of immunizations and immediately stopped growing. I know, I know, vaccines don't cause autism. I've heard that a million times too. Doesn't make it true though. Anywhoo... she stopped growing, she stopped making baby noises, she stopped everything - literally. Her eyes stopped changing color (they were in that changing color mode when this happened), she got a terrible vacant look in her eyes and she got VERY lethargic, unable to do much for days at a time. She lived on my hip most of the time and I have to say I enjoyed her being there. She loves to just suck her thumb and twirl my hair. And that's what she did for two years. She was so delicate and fragile, people often commented that she looked like she would break.

Her cognitive skills would come and go. It was very weird because some days we could see she understood us but other days there was just no comprehension when we spoke. Woody & Buzz Lightyear became her everything and Tony was her sole playmate. As I mentioned in Tony's story, they just kind of went away together into their world, leaving us lonely and wanting. Doctors told us it was just their allergies and their social isolation. But Grace would often lay around for days at a time (once I couldn't tote her around on my hip all day), but these times of lethargy were always followed by wild and lunatic behavior. She would twirl and twirl and twirl (ad nauseum) on her sit and spin, jump up and throw herself against furniture or the walls. It was very disturbing b/c we could NOT stop her! I mean, we could physically restrain her but she would be wild in our laps and just completely out of control... scary what power a 3 year old has when they're like that.

As time went on, these bizarre behaviors continued and we didn't know what to do. It was perplexing because when we moved from Texas (when she was 2), she did start talking, but it was all nonsense. She would echo what she heard and could parrot well enough for others to think she was adorable and b/c she was so tiny (remember she stopped growing at 9 months of age), people thought it was appropriate for her to babble or speak nonsense. But we knew better. She should have been speaking in sentences by this point but the only sentences she could say were the ones we had given her. Original thoughts did not come out of her mouth although I am certain they were in her head. Her tongue was completely coated white and she was diagnosed with geographic tongue (warning: gross pictures on that site). We later learned this was from the raging yeast infection in her blood.

She also had NO fear whatsoever and would run off if she saw something interesting. Not running away maliciously but just appearing to forget she was supposed to stay with us. We learned very quickly to keep our hands on her at all times. Many grocery trips landed her in anaphylactic shock b/c she could not keep her hands off the groceries. After a few of those trips, we stopped taking the kids to the store and Daddy and I would take turns doing the shopping. It was just too dangerous to take her any place we couldn't make safe for her.

Tony was a great big brother during all this upheaval, in spite of his own problems. He did love Grace with that unselfish brotherly love and was her best protector and advocate. The only time she was without us was during church (after we changed churches) because the nursery was safe for her there. He was her mouthpiece there and everyone looked to him to keep her safe away from us. People kept forgetting that she couldn't be trusted though and she had alot of accidents and anaphylactic incidents in there as well; always when Tony was out of the class with the bigger kids. I can still see in my minds eye, holding her down with all my might to stick that epipen in her leg. And I can see her fighting me with all her might, which is quite alot when it's terror driven. Twenty pounds of 3 year old is alot when it's terrified! On one occasion the epipen didn't work and we almost lost her in the ambulance. Thank God for competent EMT workers!! They saved her life that day for sure.

Life continued to spiral downward for Grace. Her mental absences continued and increased. I'm sure the frequent use of epipens, although necessary and lifesaving, were doing a real number on her adrenals and immune system. Looking back, I can see her behavior was very much influenced by her food. I kept food journals for her when I started on myself and it was very clear that the chronic yeast infections, the posturing over furniture b/c of intense gut pain, the wildness, were all due to foods. And they weren't always food allergies, they were often just foods that fed yeast... such as sugar and gluten. Boy those days were tough as she was my doll baby and could break my heart with a look. And often those sad looks were b/c I was changing her diet and she wanted her old food back.

But slowly and surely, she started coming out of her fog while we changed her diet. It was fun to see that sparkle come back in her eyes. She did have multiple metabolic problems that showed up on tests so we treated those with supplements as needed. At one point we saw she was overloaded with ammonia in the blood... that was scary since people DIE from that! But we treated her with some nutritional supplements and her body got rid of it's excess ammonia load. When that happened, she suddenly had energy like never before; and I mean good energy. ;) Like she could play all day long without needing to rest for three hours on the sofa. The resting for days on end completely ended. Poor little thing, she was so toxic it had drained her ability to function!

We continued to see progress as we treated her with supplements and changed her diet even more. The diet was always the hardest thing for her as she really loved sugar. It was hard to give up and we had to lock things up. Daddy still eats whatever he chooses and one day, it was her birthday if I recall, I woke up early to find both Tony & Grace on the floor of the kitchen, eating marshmallows from Daddy's stash. Daddy's stash had been on the top of the fridge and Tony had climbed up there to sneak it out. He confessed later that he had been doing that for days but had wanted to share some with Grace for her birthday. Sweet but naughty. :) So that day, I called Daddy at work and told him to bring home a locking safe. And he did. lol We locked anything that contained sugar in it away so Daddy could have his own foods without jeopardizing the kids recovery efforts. That was a sweet thing to do; I know many men who will not budge an inch on their own personal comfort but our daddy is not like most men. He had also seen the recovery progress and was not willing to jeopardize it, God bless him!

Once we got all the sugar locked away, we started seeing eye contact return, she completely quit posturing over furniture. She went from not sleeping more than 3 hours a night to sleeping all night. Up to that point, we had trained her to stay in her room and play with quiet toys while everyone else slept. She had a baby gate up and she just stayed in her room doing whatever. If she got loud or out of control, I would go in there and sleep in her bed. She learned quickly that if she didn't quiet down while I was in there, I would leave so she would play quietly for hours with me sleeping in her bed. I remember distinctly her maniacal laughter during the night between spurts of quiet. We didn't realize at the time that this was a sign of yeast but once we started treating her with strict anti-yeast dietary protocols, and giving nystatin and diflucan, these behaviors went away! Sleep is wonderful. :)

With chelation, she was finally able to convert beta carotene... meaning she didn't turn orange from eating that color. Which was nice b/c she looked sick anytime she ate orange food before that. She had alot of toxic metals in her body but it took longer to see improvements from chelation than it did for Tony. Therapy gave her a chance to catch up on all those skills she had missed, but it also brought an understanding of her sensory needs and helped her find relief in that area. I really didn't understand sensory issues for a long time but was glad to have a therapist who did! Grace would spend hours on the net swing and we even bought one and installed it in the house once we stopped therapy. Swinging is a big relaxer for Grace. In fact, when she was a baby/toddler, that was the only thing she would do at the park. We spent copious amounts of time at parks and she would just swing for hours and hours until I was ready to go home. Tony would run off and play wherever there was no one else but she would just stay parked in that swing. I was glad when we found it was her trying to regulate her needs for sensory input because that was an EASY problem to solve. :)

Now at the ripe ole age of 9, she is so stinkin' smart!! No one who knows her now can believe she use to have non-verbal autism; you just can't tell. She communicates very well and has a really tender heart to those who are different. She is vivacious and full of life, her smile is sooo contagious and genuine!! She also wants to be a missionary. She loves Jesus like no ones business. It's my personal belief that when she couldn't communicate, couldn't sleep, couldn't tell us her needs, that Jesus was the one who communicated to her, loved her, gave her what we didn't know she needed. We did our best but we just didn't understand and couldn't always reach her in her hidden (mental) places. I am glad she is with us now in full capacity, but am also very glad that when she wasn't, she had someone who understood her far better than we did.

Tony's recovery

Tony was fairly typical as a baby. His only health problems were chronic bowel problems, chronic ear infections, eczema, asthma and environmental & food allergies. Looking at that sentence now, I just want to scream as those are all problems with the immune system but back then, I knew no better. Each of those problems were dismissed by his doctors as normal.

He also had torticollis which made him only able to turn his head one direction and affected his ability to walk. He was in OT from 9 months to 1 year to help him learn to move his body well enough to walk. He actually had great movement but his spine was messed up from the twisted neck and walking was a struggle at a certain point. I really never thought it was bad myself but our base doctor was insistent that he needed therapy and we complied. We had a very nice Major who worked with Tony every week and gave me home therapy exercises until he "graduated". It was actually a good experience for Tony & I.

About the time he graduated, his food allergies were so severe that I had to quit my job to keep him home. I was secretly glad to have a reason to bring him home as I never wanted to return to work after he was born; but it was difficult to know the reason I came home was because he was no longer safe in public settings. I remember very distinctly the day I knew it was too dangerous. He went to the military daycare (which is where I worked) and you need to know that DOD childcare is flawless in their ability to keep germs and food and all things safe. The room was practically sterilized twice a day and kids foods were kept away from each others, toys that were played with were not reused until being cleaned, I mean it was as safe as they could be. BUT that day, I was visiting him on my lunch break and he was eating some baby food, but his neighbor in the next highchair over had macaroni & cheese. Tony, being a toddler, did what toddlers do. He grabbed his neighbors mac & cheese. He didn't even get any in his mouth before I had grabbed his hand and washed him off. But he went into anaphylactic shock (this happened often so I knew what was going on). Just from touching the mac & cheese. That's when we realized why he kept going into anaphylactic shock randomly...he was allergic to touching his allergens! The director of the childcare center told me she really didn't see how to keep him safe (and I didn't either) and that I should put him in a bubble. (That was a less than stellar comment on her part, I might add) So I quit and took Tony home.

I remember that first day home. We lived on base and walked to work every day so I just took him home in the stroller and we hung out on the playground next to our housing unit. The day was sunny & cool; a beautiful Texas day. We finally ended up swinging and I was holding him in my lap, face to me. He feel asleep and I just sat there swinging and holding him and thinking how wonderful life would be now that I could stay home with my baby.

Life was wonderful for awhile. We had another baby soon after and Tony was a great big brother. He just loved Grace and thought she was the coolest play toy ever. They had a special bond that was so precious to see. She very quickly showed signs of severe food allergies too but she also very quickly regressed into autism so she was a danger to herself because she could not care for herself or speak up to say "no thank you" when offered food. She was not out of my sight often but she did go to church nursery and she couldn't remember not to accept food from others. So Tony, very responsible at that age and being an A type little dude, took responsibility for her. If Grace went to nursery, so did Tony. Very quickly Tony became Grace's mouthpiece and protector. He saw her have to get an epipen injection many times and he understood the seriousness of his self-appointed job.

As they grew, Tony & Grace maintained that bond and always had each other for playmates. At that age, Tony was very social but Grace was not at all. At activities, kids would look at their food and make faces. Well meaning adults would raise their eyebrows at their food and make comments. But mostly people understood it was life and death and the amount of food allergies they had necessitated the "weird" foods. We got very good at wiping down surfaces to EVERYTHING the kids would touch. We should have taken out stock in the Huggies wipe company because, Baby we would be millionaires!! But anyway, we still strove to "look" normalish so we started allowing the kids to live off of Tyson chicken nuggets, oreos and spiderman pop tarts.

However not everyone understood (or cared) that it was life and death. At one point I had to pull Tony out of church nursery because the nursery workers would keep him caged up in a playpen while the other kids decorated the room in cheez-its. I mean literally covered the room. We would go in to pick him up and every child was orange crumbs and the floor was orange. Well a social toddler in a playpen is a great attraction to others so the little people would always come over to play with Tony, touching him, touching his toys, and we would spend the afternoon in the ER, hoping he wouldn't die.

This was his life for years. Any social situation brought danger. While we did leave that horrible church, we still had to deal with the fact that each exposure he had there, had upset his immune system even further. The amount of foods he became allergic to was astronomical. His immune system was on hyper alert every second of the day. If you know biology, you know that stresses out the adrenals big time. Although life saving and necessary, epinephrine shots also stress the adrenals. His body started crashing little by little and by the time he was four, he was hospitalized for complications from strep throat. When he was released, he was a different boy.

Tony never lost language. I say that because his symptoms will make you wonder how I didn't see autism any sooner. Or even how the doctors didn't see it. I firmly believe it was because he could still talk. He was always the little conversationalist and when a doctor sees your child for 2 minutes and all they can talk about is dinosaurs, it doesn't set off alarm bells. His obsessions were obvious to us but not so obvious to the people that didn't live with us. He could still socialize to some degree but he went from "normal" play to screaming and crazy hyper. He started sweating buckets at night. I'm talking, his sheets were drenched and his clothes were dripping wet when he got up. He was not in a hot room, not wearing hot clothes, this was just the way it became for him. He started snoring and his food allergies, perservations, obsessions and wildness got more pronounced. While he withdrew further and further into himself, it was very subtle, and we ignored a lot of the signs because he continued to play with Grace.

Their playing had changed though. Instead of flitting from toy to toy, doing normal kid things, they would sit on the couch and obsessively watch Blue's Clue's (I can still hear Steve & Blue singing in my head!), or play for hours with dinosaurs (nothing wrong with that) and little by little, they stopped interacting with me. Daddy was overseas probably 1/2 of the year so it wasn't easy for him to spot things and I was super stressed over the allergy situation and, well honestly I was rather self absorbed so I missed signs too. Because the allergies were so severe, our social life dwindled down ALOT and I stopped seeing other kids Tony's age and couldn't compare and see the oddities. At the age where it probably would be have started to "click" for me, the military moved us and I had to make all new friends.

Let me tell you, when you have kids with allergies to TOUCHING common things, making friends doesn't happen easily. For us to go out in public used to take an enormous amount of courage. Imagine that anything your child touches could kill them. And imagine that it's stuff you can't see that would do the most damage. Finding a new church was a difficult and daunting task. So Daddy and I decided I would go by myself first and we would see how the people of the church were. If they had a heart for special needs, I would speak to the nursery workers to see what they were willing to do to keep the kids safe. If they were put out or snotty in any way, we did not go back to that church. We went through quite a few churches I'm sad to say. But we did occasionally find a church where they were willing to work with us and we eventually found a place to worship.

Once we found a church home, it took some time to accustom people to our needs. We can't help our issues so we just asked people to make small accommodations for the kids safety. Most did of course but it still took Daddy & I some time to work up our courage to trust people. It took even longer for me to work up my courage to let my kids play with other kids. Always in the back of my mind is the knowledge that if a child Tony is playing with just had milk and donuts before playtime, it could kill Tony. I know very few kids who are neat eaters and therefore most of the little kids around us have food of some sort on their clothing. A simple thing like sharing a toy that had been in someone else mouth or on their table during meal time could kill my children. Those are the crazy things I have to think about every second we're in public. At that time, I was still timid and often didn't want to speak up so I just avoided social situations as much as possible.

Fortunately I made some friends who helped me get over that but still, for a time, we were very isolated socially.

By the time I started being more free and comfortable in the groups who knew our needs, I started to notice some really weird things about Tony. He was afraid ALOT. Yes, a child who can die from touching things would naturally have a more fearful personality. But he had not been that way before and he was Grace's caretaker! He had known for years about these issues but suddenly he was afraid to talk to people. He started being unable to talk (selective mutism) in public. He was also terribly underweight compared to all his age mates. He did not know how to be social with either adults or children. He was just wild and crazy unless he was frozen in fear. And he stayed that way because I didn't know what to do.

Finally a friend recognized that my newborn (Kate) reacted badly to foods that fed yeast. She herself had candidasis and encouraged me to see her doctor. I went out of desperation. At this point, Tony was 5 and I had been assured by all the experts that he would outgrow his allergies by then. Not only had he not outgrown them, he had more than when he was 2. Since Kate and Grace both had allergies, I went hoping he would tell me something that would help. I received alot of information that day and started tweaking my own diet. That was no fun but was necessary because I was breastfeeding the baby. Her eczema went away when I cut out all things that feed yeast (dairy, gluten, sugar, yeast). So I started messing with the big kids diets to see what would happen. I kept a journal of everyones food intake and behavior. VERY quickly, the connection to their food and their behavior became crystal clear.

I kept going back to this doctor who thought in a whole new way from the ones I knew. During one appointment, he did diagnose Tony with autism. I remember being stunned and relieved all at one time because I had already known he had it and the verification helped, but you're not really ready for that dx when it hits your ears and heart. I also remember his nutritional health coach looking me in the eye after he left the room and saying: "It doesn't have to be permanent". WHAT??? Autism can't possibly be fixed right?? Well that comment lite a fire under me. I had already started learning a little about toxicity from studying candidasis so I started collecting books and websites that could help me. During that time, I took Tony to the big medical university here where all the autism kids go. They used the CARS and when we came back for our evaluation, they told me he missed a diagnosis by 3 points. They also knew that at this point, I had tweaked his diet and seen improvements, so they told me to keep doing what I was doing because based on his history before treatments, he did indeed have aspergers (although at that point they just called it high functioning autism).

So what did I see with dietary intervention?? Well here's a quick rundown:

Gluten removal - quit that horrible screaming and screeching, stopped wetting the bed, his excessive night sweating stopped (this sweating was so severe that his clothes were dripping from sweat when he woke up), his asthma went away completely!
Sugar removal - eye contact came back, stimming stopped, he calmed down considerably.
Adding fermented (probiotic) foods - bowel problems resolved, stopped craving certain foods, major social gains, eczema went away.

We did a ton of other interventions as well. Diet was just the beginning.

Chiropractic care - we did this 2x a week during chelation to keep the detoxification pathways open. We continue to receive adjustments to maintain health. This is one thing I think everyone needs to do on a regular basis.

Oral chelation - we had testing done and it showed high levels of toxic metals in everyone's body and chelation is the best way of getting it out. Metal toxicity will keep the brain & immune system from functioning. (Most people are aware of the danger lead poisoning can do to the brain - all toxic metals will do that). We did NOT do this until we had worked on their guts though as chelation can be very hard on the body and often stirs up yeast in a fierce way. We had a doctor oversee our chelation and we supplemented heavily in those days to make sure we did not deplete the body of needed minerals and nutrients. We went very slowly and used the safest method we could find.

Occupational Therapy - this was needed to help the kids regain their lost skills. Tony, for instance, had motor and trunk rotation problems. He could not look back without turning his whole body. A child of 6 should have been able to rotate his trunk but he could not. That was only one of his many physical problems that were remediated by OT. His sensory seeking needs were met here and we learned how to help him meet his sensory needs. At one point, he would only go out in public in long sleeves and could not touch dirt without great distress. He is SO over that! :)

Supplementation - during the early years of recovery, we ran a huge amount of labs. We saw many problems the kids had internally that we could resolve with vitamin & nutritional supplements. As you can imagine, a child on a severely restricted diet like Tony's had many nutritional deficiencies. (*Hint: processed foods hurt the body, they don't do it any good!) We found he had a parasite in his gut that was eating all his nutrition (at 9 years old he was 45 lbs) so we killed that sucker and he started gaining weight again.

Neurofeedback - this was absolutely vital for Tony. Although he was physically recovered from all the other interventions, he still had that heart-stopping anxiety. He was just unable to function out in public if someone spoke to him. After just three sessions of this, he lost that anxiety. It's wonderful to see him able to function appropriately in public!! He has learned the difference between necessary caution and all-out terror. It's good. :)

It took about a year for him to look recovered to the untrained eye (who didn't see him for a very long period of time) and much longer to get complete recovery (meaning no one could tell he used to have autism even after interacting with him for a lengthy time). This is not a typical timeframe for a more severely affected child. Please also know that recovery means they do not look or act like they have autism. It does not mean they have no more medical issues. He has only recently been able to pick up social cues from others and the food allergies persist.

There is so much more that I didn't include but I'm sure you're all going cross-eyed from the information overload. So there is Tony's story... in a very large nutshell.

Autism Recovery

Since I first started this blog, I have wondered how best to approach our recovery stories. As I mentioned elsewhere, I don't like to revisit the old days. They hurt. But I have always believed that our recovery was not just for us, it is for others as well. So selfishness is not an option and I am happy that our story has helped others find recovery and know it will continue to do so.

It may sound weird but it's actually difficult to condense and share because it was a very long & complicated process that led to recovery; AND there are three children involved not just one. When you're going through something, you just journal as you go and your perspective is different; but we're done and it's a bit harder to remember everything (believe it or not you do forget some of the awful stuff) and hindsight is so different than "now sight". So I will just split it all up as best I can by child. I'll try to use tags and keep them consistent so you can search easier. I will probably copy parts of my conference notes right in here so if you've heard me speak at conferences, some of this will be familiar to you.

I appreciate your patience as I get all this written out and also appreciate you keeping negative comments to yourself. Shockingly, there is a segment of the population that is offended by autism recovery. If you are one of those people, this blog is not for you. This is to share our story and help others, not to start debates of any kind.

Y'all hold one! It's gonna get wordy in here! lol :)