Detoxify your house!

Did you ever see the movie the Matrix? What happens when Neo is given the choice of taking the blue pill and continuing to believe in the fake reality, or take the red pill to see how the world is truly like? Well, if you haven't seen the movie this will make no sense to you. If you have, let me tell you this post might be considered as taking the red pill. At least that's how I felt when I started investigating diets.

This information is what I came across while doing the GAPS diet with my son. I literally had no idea how toxic our environment is, and how hard it is on the body. This information is for everyone not just those with autism. And by the way, yes I am a tree-hugger. But I was the kind of tree-hugger that recycles, and believes in alternative energy. I still loved having that fresh scent from air fresheners, my lovely perfumed body lotions, expensive shampoos and soaps, and freshly scented clothes. 

So toxins can be ingested in to the body in three ways from what I know:

• Through breathing
• Through ingestion
• Through the skin

There are dangerous, cancer causing, hazardous, flammable, life threatening-when-ingested in large amounts chemicals in the products we use to (ironically) keep the outsides of our bodies and our homes nice and "clean", while what we are actually doing is loading ourselves and our environment up with chemicals. Toxins are stored in fat cells. The brain has a lot of fat cells. When toxins are locked up in fat cells they can't be used, so you do the math. I hope most Americans would know that drinking alcohol during pregnancy is bad because the alcohol enters the bloodstream and goes in to the baby. None of us would give a toddler a cup of Vodka or a cigarette, because we know they are toxic and bad for them, probably not even just a table spoon of alcohol a day and two drags of a cigarette a day, right?

 And yet, what I didn't think about, and didn't realize is the chemicals in our cleaning products are equally damaging and dangerous. And the craziest part is, for the most part they are completely unnecessary. Despite ourselves we believe the adds that tell us how clean, fresh and safe our house/body/clothes/sheets will feel, while all the while we could use vinegar, essential oil, microfibre clothes and baking soda and get the same result without bringing all these toxins into our homes and bodies, AND save loads of money on expensive cleaners. Did you know by the way that the reason shampoo and shower gels foam so nicely is because they put in a substance that is also used to de-grease engines. And we put it on our bodies day after day, thinking just a few minutes of exposure doesn't make a difference, and we are washing it off anyway. Not true on both accounts. Our skin absorbs it and it does make a big difference, especially for someone so young who has autism. Autists can't handle the toxic overload for whatever reason. So one first step in helping their bodies is to remove as many toxins as we can from their environment to help their immune system respond to the many other challenges they have. The goal in detoxifying is not so much becoming a treehugger, or making a statement, rather than realizing that we need to assist their already compromised immune system in any way we can. As I said, the effects of alcohol and nicotine have long been observed as hazardous to health, but at first no one believed it. It took decades for people to admit that it might be bad, because they had grown used to its comforts. I believe that in about 20 years people will have done enough research to realize that the toxins in the chemicals we use are truly not good for us. 

HOW TO DETOX:

1.) So the first step in detoxifying your house is to stop buying cleaners, or at least use the less aggressive environmentally friendly ones. For ways to detoxify your environment I'll post a link from another blog. No need to rewrite perfectly sound information. 

http://crazysexylife.com/2010/20-ways-to-detox-your-home/

2.) You have to detox your body as well. This blog has some good suggestions on  how to do it. http://www.abundanthealth.ws/htryboct.htm  However, I disagree with some statements. For example, drinking lots of water is not necessarily healthy. Water in California for example contains some residues of what is also used to fuel rockets. A lot of water is high in contaminants, so first make sure IF you drink a lot of water that you use spring water. But again, drinking lots and lots isn't necessarily healthy and can place a strain on your kidneys. The other thing I disagree with is that you have to avoid plant foods high in pesticides. Sure ideally we all eat organic, but lets face it, that's super expensive. However if you follow Dr.Fuhrman's diet he says that eating 95% plant food supplies your body with so many micro nutrients that the amount of chemicals from pesticide is negligible, especially considering how many chemicals you would ingest by eating regular processed foods. There is however a list of foods that are best avoided when not organic. You can google it.

3.) Along with detoxifying your body consider what you eat and how you prepare it. Stay away from all processed foods. Use stainless steel and cast iron versus Teflon and aluminum. Be aware also how you store your food (i.e. plastic containers for school lunches are not ideal). I didn't realize that, but there is just the added absorption of the plastic chemicals in to the food we then ingest. Consider also the environmental load of buying bottled water.

4.) Chelation. This is a big thing in "treating" autism. Some doctors recommend chelation to get rid of heavy metals in the blood. First of all, yes it's possible your child has heavy metals. Do a blood test to confirm that. And then consider that chelating drugs were designed for super fit trained men in the armed forces who were exposed to shrapnel and heavy metal poisoning. They were designed to save lives when the alternative was imminent death by metal poisoning. In other words, they were not designed for little bodies of children. And to my knowledge the side effects are so severe and dangerous that you might as well just leave the heavy metal in the system for all the damage the drugs will do. There is however a natural way of chelating and that is through baths, saunas, and eating a clean diet. Juicing and herbs can chelate heavy metals naturally, and in such a way that you will strengthen rather than short circuit the immune system. So on this also we are back to Dr.Fuhrman's diet (by the way he is not the only one who has sound scientific research to back up his claims. You can also check out Dr.McDougall and Dr.Campbell who wrote "The China Study".) Here a blog post on natural chelation. http://www.all4naturalhealth.com/natural-chelation.html

Getting rid of all electronics

OK, don't panic at this one. If you have an autistic child chances are very high they will be obsessed with electronics. They delight in making things light up over and over and over and over and over and over again. You get the idea. The simple reason is it makes their brains light up. It is addictive for them. When you let your child play with those battery operated toys, iPods, iPhones, iPads, gameboys, videos, TV etc. you are not doing them any favors. Their brain chemistry is set up in such a way that they will be addicted to it, and will throw huge tantrums when you try to remove them from it. The problem is that these type of things don't teach them anything new. They can obsess over them for hours to the exclusion of everything else. That is BAD. They are already in their own world. The last thing they need is less brain stimulation. This is where the son-rise idea comes in. You go in to a playroom that is low on distraction and you use enthusiasm, excitement and energy to give them reaction they are looking for. Their brains need to be lit up with stimulus, so when you make yourself the most interesting thing in the room, guess who they will eventually want to start playing with?
Picture this scenario.
Scenario number 1: Child sits in front of TV. It avoids eye contact with you, watches the same show over and over. It's safe, it's predictable. It makes his/her brain feel happy. He/she wants to watch only the one episode. Pretty soon he/she just wants to push the DVD in and out so he/she can say repetitively "Coming soon to Disney DVD and video". And then he/she wants to watch another video. When you try to turn off the TV, melts down follow and the child acts like a kid on drug withdrawals.  You try to engage him/her otherwise, but you have just become the person who took his/her drug away and are forcing them to interact in a way they don't feel like doing.

Scenario number 2: You are in a non-distracting room with your child. Toys are out of reach. He has to interact with you to get a toy. So he avoids contact for a while and just spins in a circle. You start spinning with him in the same rhythm. He continues and ignores you. You are having a great time, just enjoying his repetitive game. He looks over at you amazed and you become super animated and fun to look at and thank him for looking at you. His brain just registered...if I look this person becomes interesting and fun, and looks at me with love and excitement. Love and excitement generate a hormonal response in his body which helps the brain cells grow (according to Dr. Daniel Amen). After a while he works up the courage to indicate wanting something from the shelf. You jump at his slightest effort and show him that you are there to help get him what he wants. You celebrate any effort he makes to communicate with you. Then you organize a volunteer group and keep your child in the special non-distractive environment and train the volunteers to become his facilitators and "toys". You teach them to light up when he connects, and be really slow, calm and lovingly dumb when he whines or tantrums. The brain learns...aha communicating with another person gets me what I want, and it is fun. Tantruming doesn't get me anything.

Basically by removing the electronics...YES it will be more work for you, and heaven knows I was so scared to remove that all important TV downtime at 4-5:00 when I was so tired I didn't think I could make it. But after a while all of us got used to it. And now, my kids ask to go ride their bikes or play outside instead of watch TV. I was able to introduce a system where they can earn fuzzies for exercising or playing outside, doing chores, playing with each other, so when their fuzzy jar is full they can watch a show on Saturday. When your child is very young (before age 10) really limit electronics time. This is the time to explore in the sand, because there will always be time to watch TV, work on the computers, etc. Childhood is where the sensory system is wired and developed through playing outside, learning about balance and textures. The most important thing however you can teach your child is that people are fun to be around. So become his toy! It might mean more work up front, but it will pay off over a life time.

Work the Cerebellum: how Neurofeedback, Brain Balance, or iLS can help your child with autism

Hi Everyone,

today I will discuss why it's important to get your child some sort of training that will help his cerebellum make more sense of the world. The cerebellum is the large part at the back of our brain that is in charge of sensory integration.
I just thought of a metaphor of what sensory processing is like for an autistic child. Imagine your brain and body as an email account. Every sensory input that is coming in to your brain is an email. So you turn on your account and you are getting 400 emails an hour (which is if course far below what actually comes in). There is nothing that you need to do to get the emails, other than be awake. In order to manage the onslaught of information and process them appropriately (i.e. file things for later if they are not important, delete, mark as spam, respond to the important, archive etc.) you need to at least have the use of your hands. For a neuro-typical person these emails are not a big deal. Our brain appropriately filters, marks as spam, responds to the important issues, without us having to consciously do anything. For an autistic person however it's like your internet connection is slow, you have no filters on your account, your hands are tied to the chair and someone has gagged you. On top of that your chair is positioned in such a way that the leak in the ceiling is dripping on your head constantly distracting you, and you can't get over to turn off that obnoxious music (insert whichever you find most annoying) that someone left on the radio. Now try and respond to all those emails. The best you might be able to do is hit some delete button by banging your head on the keyboard or screeching/growling through your gag for help. You might even try hopping up and down to get someone's attention or simply to get out of the way of that distracting drip.
Now substitute the words "email account" for cerebellum and "email" for sensory inputs, and imagine what this looks like to a person on the outside, who has no idea that you are trying to process something? Yes, jumping around, screaming, growling, crashing into things? Does that sound like an autistic person? It sure sounds like my boy.

So here is a practical example of how sensory processing works without our having to do anything: You sit on the couch, reading a book. You smell that the cookies you just made are burning. You run up to get them out. Your brain has just processed the smell of burning cookies and generated an appropriate response. Your proprioceptive sense lets you know how to efficiently jump up off the couch and make it to the kitchen without bumping into anything.

 In my son for example his proprioceptive sense (the one that lets you feel your body movements and orientation in space) doesn't give him enough feedback, so he constantly jumps to feel his legs, or trips over things. Imagine you smell those burning cookies, but you can't feel your legs. Or your sense of smell is hyposensitive and you forget about the cookies and burn them and your house to a crisp. The cerebellum has to process a massive amount of information and then translate it into tiny commands that helps us for example stand without falling over, or filter out background noises to focus on the pertinent one. By the way I'm not a brain scientist, so if I'm totally screwing this up, and you know what you are talking about, please correct me in the comments sections, for all of our benefit.

Anyway, there are a couple of ways to help the brain. The earlier you start any intervention the better, typically. One excellent intervention is sensory integration therapy. This is administered through a certified occupational therapist, trained in sensory integration. A word of caution however: if the therapist is not familiar in working with autistic children, find someone who is. There are also a number of therapies out there that stimulate the cerebellum's development. Scientific research on this subject is still in it's very early stages, but there is plenty of anecdotal evidence that would warrant further investigation. There are a number of programs out there that take a multi-sensory approach which helps children. These are a few of them. I personally haven't gotten to try many of them because we live in the Netherlands and they are not available here. However I just found out the iLS is, so we will be starting that soon, I hope.

Brain Balance Program: 
This program runs 3x1 hr / week and costs about $6000 for 12 weeks. It is based on Dr.Robert Melillo's program. He wrote the book The Disconnected Child. The program is aimed at strengthening the weaker part of the brain hemisphere and thus helping it catch up with the other side, so they can communicate in sync, which according to him will reduce most problems associated with autism/add/adhd.

Interactive Metronome:
I don't know how much it costs, but it helps the two brain halves communicate in sync. Timing is crucial to proper functioning and these exercises help brain timing improve.

Dore:   Similar idea to Brain Balance but less developed it seems, and the founder sounded a wee bit dodgy to me.

Handle:
Similar idea to brain balance, but doesn't require active cooperation from the patient which can be helpful.

iLS:
Exercises performed to music which is listened to through a vibrating headphone. The frequency of the music is tested and in that way the brain is stimulated.

LENS Neurofeedback:
Optimizes brain passageways. Can be very expensive.

Anat Baniel Method: 
I've actually tried this one with Ezra and it was remarkable. He could feel his body so much better. However, this is also largely dependent on a good therapist.

I will keep you posted on how these therapies go. I know several mothers who swear by the Brain Balance centers, however, the child has to have a higher level of cooperation to be able to participate. So if your child does not demonstrate such an ability, I hear the Handle method is more favorable.

Diet a religious dilemma?

I think at this point I could write an opera script about diets. Or a soap opera. It probably wouldn't get very good ratings, although there would be a fair amount of drama associated. Hm, perhaps reality TV is the way to go on that.

OK, if you follow my blog at all since my passionate post about the GAPS diet and how every parent of an autistic child should immediately do it, you know that although the diet has helped us get our kids eating a greater variety of food and we have healthier options, this diet has not been working for us. Ezra's behavior is getting more and more difficult. I read through all the FAQ on the gaps diet website to find answers, I contacted the clinic of the author to schedule an appointment, and they told me that she's no longer taking patients, and to read the book and the FAQ on the website. GREAT! That was helpful...NOT.

Anyway, I still think the theory about the gut flora being out of balance is a good one, and research definitely shows that the intestinal tracts of autistic children are severely compromised. So clearly something must be done to heal and seal the gut. But I'm starting to doubt, and always have that consuming massive amounts of meat, eggs, and animal fat are really the solution. To be fair, of course Dr. Campbell-Mcbride doesn't recommend "massive" amounts, but still, that's pretty much all the kids will eat. It makes sense that the bad bacteria needs to be starved of it's nutrition source (i.e. complex carbs). But on the other hand if the body is fighting chronic inflammation, how can consuming meat and fat, which are supposedly inflammatory going to make that any better, even if they are organically raised and grass fed?

I guess my real dilemma comes from my religious conviction. I'm a member of the Church of Jesus Christ of latter day Saints. I believe God reveals truths to prophets today just like he did in times of old. In 1833 a prophet called Joseph Smith received a revelation regarding the health and well-being of members. It's a code by which I live, called the word of wisdom. It counsels people to abstain from tobacco, alcohol, coffee, tea (black tea) and drugs (by the way one of the reasons we are counseled to abstain from them is not only because they can cause addiction and are bad for the body, but because of evil conspiring men. How true is that considering drug cartels, tobacco industry etc?) It also counsels people to eat liberally of plants and grains (wheat being especially good for man), use moderation on fruits, and eat meat of animals and fowls sparingly, only in winter and times of famine. This revelation isn't entirely new. The same kind of dietary suggestions can be found throughout the Old and New Testament. Now if you know LDS people at all, you know that they stick pretty well to the "don't" part, but do whatever they like with the "do". In fact, it's fair to say that sugar is the Mormon drug of choice. There is practically no social gathering that doesn't involve food. Anyway, getting off track here. 

SOO, my issue has been, if wheat is supposed to be good for us, then why is my kid allergic to gluten? Or what about all the other allergy sufferers, celiacs, etc? Of course, this revelation was given in 1833 and back then wheat was still soaked, fermented, and ground in a way to make it easily digestible, not like the highly processed stuff they have today. Our environment has changed a lot since then and we have so many more pollutants and toxins our body has to deal with. And who knows that the amount of exercise and fresh air they got back then didn't fortify their immune system in a way to never bring up digestive issues. I do believe God wants us to use common sense, and our brains to figure out what is right for ourselves. After all, the word of wisdom is a guideline. But now I'm really at the point where I just can't get any further. 

There are so many diets out there and they all claim to help, and often they advocate the exact opposite of each other. In fact, I think the one thing they all agree on is that all the chemical additives, food dyes, pesticides, and so on should be avoided at all costs. Which one is the right one? Feingold, GFCF, TCM, HDN, anti-histamine, GAPS, SCD, Body Ecology, Paleo, South Beach, Atkins, Vegan, Vegetarian, Macrobiotics? 

I need a revelation!

Food Fights and Autism

So here is a video of Ezra tonight having a hard time choosing Option number 2 (see below for explanation). Granny made dinner. When you watch the video, just consider that Ezra has eaten and liked beef in all sorts of shapes and preparation methods before, and he likes it...usually.
As most of you know we use the Son-Rise program at our house. Or at least we pretend to. Really, if you do Son-Rise it's like a life philosophy. Anyway, there is one area where I use more ABA and that is in the area of food. Sometimes I regret going this route, because as is the problem with ABA it doesn't really build relationship or teach them how to love and want to do something (i.e. eat food that is good for them).
Ezra was such a picky eater that he wouldn't accept anything at all unless he got some kind of reward or treat for it. One of the tricky things about doing a GAPS diet for both kids is that I can't use different standards for the kids. Not really. And at first it was actually my younger typically developing son who had a harder time and would throw tantrums before trying a new food. Now he pretty much will try a little bit of everything, but it still takes a while. I started using a dry erase board every time they had a tantrum. I drew a line down the middle and explained to them they had two options.

Option 1:
Cry, scream, hit, throw food, yell, not eat! -->Result: hungry, cranky, nothing else to eat, and eat whatever they didn't eat for breakfast, lunch. And they will also have wasted a lot of my time and energy, which means I won't have much left to play with them after dinner.
Option 2:
Just try a bit of everything, eat most of your food, get more yummy food. -->Result: feel full, happy, and we'll have more time to play together afterwards.


For Micah and Ezra writing things down really helps them understand better what they need to do, to arrive at the result they want. I have started applying the practice of drawing up their options into other areas of our life. I want them to learn that our actions determine our results. If I was the ideal mom I would be able to stay calm and supportive during every break down they have, sadly, I fall short of that ideal  multiple times a day. I'm working on it though.

GAPS...so far no luck!

We have been following the full GAPS diet for almost three months now. It seems like my life is all about food these days. I'm not even following the diet anymore myself. It is so much effort and so expensive, that I would rather have my kids eat the special food, than waste it on myself. After all I am a functioning adult, and other than obesity and mood swings, my health is fine. There is always the little mommy fear My-kids-are-going-to-starve in the back of my mind, and so when they ask me for food after finishing theirs, and my serving is all I have, I would rather give it to them, knowing that I can also survive on something else, if I need to (which is what I have been doing, and the scale is showing it). On the other hand I'm also trying to teach them that they can't just throw a tantrum and get what they want. I make it clear that what I put on the table is what they can eat, and otherwise they will be hungry. So often times, they actually end up a bit hungry, because they refuse to eat. They ask me for food non-stop. It's really aggravating. Ezra is especially obsessed with food. There seems to be no off-switch in his brain, when it comes to eating. He craves fruit like a drug addict craves heroine.

I am in the kitchen so much. I get up in the morning and spend about 1.5 hours in the kitchen. The night before I also spend about an hour after dinner making lunches and preparing breakfasts. That's not including the hour I spend in the kitchen making dinner. What on earth takes so long, you might wonder? Well, if you have to warm up the broth in the pan not the microwave, make fresh juice in the juicer, grind the nuts, and the pancake batter in the food processor, you end up having a lot of dishes to clean. Besides all the ingredients have to be homemade, so there is also a fair amount of prep work that goes into having the ingredients for the foods I make. For example nuts need to be soaked for 8-12 hours in salt water, then drained using a sieve, dried for several hours (ideally overnight) in the dehydrator, and ground into flour in the food processor. It takes organization and time to do GAPS. I'm not very organized. Still, all this work would be worth it if it could heal Ezra's stomach, his ADHD and his autism. IF...Sadly, it's not actually working. All the symptoms that should go away with GAPS are still there, and possibly worse than before. In the last two months we have seen in Ezra

• increase in skin rashes
• hyperactivity increase and decrease in focus and attention span
• aggression and decrease in use of language
• painful stomach and undigested food in poop
• increased obsession with food
  

It is sadly possible that we just aren't doing the GAPS diet right. We are on the what is called Full GAPS diet. There is an intro-phase, and technically you shouldn't move past the intro phase until your patient has been symptom free for 6 months. I suspect that if consulted a GAPS practitioner they would point out that Ezra is getting way too much fruit and honey, possibly can't tolerate a lot of eggs, nuts, coconut, and ghee, and that we need to put him on the intro, give him meat broth before every meal, soup once a day, and highly boiled vegetables and meat, until he has sufficiently detoxed, and only then move into full GAPS. I'm also fairly certain they would point out that the non-organic veggies and fruit we feed him are high in pesticides. Dr.Campbell even mentions in her book that GAPS patients can be so sensitive to those pesticides that they really don't improve until it is all out of their diet. And my friend who also has an autistic child would point out that the foods we are giving him are high in salicylates and phenols and can cause all the above reactions. But what can I do? Micah thrives on a high carbohydrate diet. His challenges are helped with more carbs. How can I give him a banana and tell Ezra he may have boiled carrots instead? And how can I watch my child weep, when all the other kids get to have things he can't? It sucks!

Nonetheless I have to admit that in some ways GAPS is simpler than gluten free, casein free, and much healthier. I wouldn't want to go back to GFCF. At least now I know that my kids are getting a wide variety of healthy foods, versus all highly processed carbs. And once you learn about what evil corporations put into food to make it cheap and maximize profit I really don't want to feed my kids that garbage. Ideally my kids could just eat anything. Still, life is more complicated this way. Making nut butter and honey sandwiches for the kids school lunch takes over an hour (with baking the special bread, or 24 hours if you count the time it takes to prepare the nut butter), whereas I can make a sandwich with normal bread and spread in 20 seconds. I don't know what to do, honestly. The science and research behind GAPS makes total sense. It would be so helpful though if we could actually have things confirmed with true practitioners and blood tests or whatever, instead of me having to figure out everything by myself.

Chick-zza! Your GAPS legal pizza for your picky eaters

This is by far my most popular dish with the kids on the GAPS diet. I could call it Chick-zza I guess. In later stages, I can probably add cheese, but now we don't get to eat that.

It has been about 17 days now since we started GAPS and it feels like I've been doing it forever. I really can't wait for the intro to be over with. I'm not even following it exactly, because I don't have avocados readily available. And the other thing that is a bit ridiculous is introducing squash pancakes, with the advice "Start with one a day, and watch for reactions". I want to know which iron-willed mother can manage to feed her kids soup, broth, and veggies for two weeks, and then give them a pancake. One pancake. I'm not that mom. I think Micah had eight pancakes the first time I made them. And was I supposed to then just freeze the whole batch? Anyway, I'm growing impatient with the intro diet. I understand it's purpose, but I really wish I had started it during vacation, because now I can't tell for sure what my kids are reacting to...the new school environment, or the food. Also, I am impatient to just move on and make different foods. I think we're eating too much meat. I can't wait to include salads. I want to have a greater variety of foods, which the intro doesn't really afford.

So my picky eaters at the end of the day are still picky. They are now eating broth without complaints, and in fact, I have difficulties keeping up with the supply, but they're still not eating vegetables unless I disguise them in some way. I'm torn between bribing them to eat, or just following the parenting rule: set the standard and don't engage in arguments. I just read on this website about picky eaters, that if you want to get your kids to eat all foods, just make what you want them to eat, and if they don't, they can choose the consequence, which is feeling hungry. You can explain to them in a loving way that they can either feel full, or they can be hungry, and then you are to not ever engage in any arguments. It's easier said then done, but I like the idea of no meal time terror.

I have to admit though that it is a tremendous amount of cooking, peeling, preparing. I wish I could just go to the store and buy everything ready made, but without all the E's and the sugar in it. I'm also struggling with living in the Netherlands right now. So many things are readily available in the States. The US is a very internet-oriented market. You can find anything online. The Netherlands is certainly better than Switzerland when it comes to online shopping, but it's still not like the US. So many things that I could get there, I can't have them here without crazy shipping costs, or they don't even export them. It's not that they don't have organic everything here, it's just that it's harder to find. Also, I'm very busy at the moment now because the publishing company that I work for publishes their annual Equestrian yearbook in October, and so I have to go in to work every day, and work evenings. At the same time, I have to cook for about 3-5 hours a day, start up the Son-Rise program for Ezra, find and interview workers, and try to spend some quality time with the kids.

To be honest I thought they would be less obsessed with food now that they're off carbs, but just the opposite is true. Instead of coming home and playing, they trail me around the kitchen asking me every two seconds what's for dinner, can I have a snack, I want this, I want that. That's why I'm happy to let them eat at school. Their teachers even report that they eat everything I pack for them. Ha! Today the mom that stays at school when they eat lunch even told me that they had to laugh at the amount of food I pack for Micah. Apparently all the other kids get two slices of bread and one slice of meat for lunch, and that's it. But Micah is eating it all. I do know that no matter how much they complain about being hungry or wanting snacks, they are getting a ton of calories, and about 150% more nutrients than before. Still, not gonna lie, I don't care for the cooking and the planning. Anyway, that said, this recipe takes about 4 minutes to prepare, and the kids love it, so I like that.

Recipe Chick-zza:

The crust is made out of ground up chicken, cauliflower, salt, and onions. Interestingly enough it doesn't taste like any of those ingredients. If you want to recreate this: just take a dinner plate. 1/2 of the plate should be chicken, 1/4 onions, and 1/4 cauliflower. You can use any vegetable you like, but cauliflower gives it the right consistency and color to fake a pizza look. For the tomato sauce I just blended up canned organic tomatoes, fresh basil, salt and two cloves of garlic. Decorate with anything you feel belongs on a pizza and is GAPS legal. Put in the oven for about 15-20 minutes. Done.

Mwahaha! Persistence paid off. Picky eater mom wins.

I didn't think this day would come, and yet here we are. Ten days have past. I remember ten days ago, cooking only the foods the picky eater crew would eat. I remember what it was like to have Ezra scream at food he didn't want, throw it across the table, throw himself on the floor and have a temper tantrum for 50 minutes. I remember him hitting and pinching me for 20 minutes, screaming at me to get what he wanted. I remember both of them refusing all food. I remember exchanging TV time and honey for bites. I remember four years passing with Micah refusing every single fruit and vegetable except for grapes, and raisins. It seems impossible that these same two children issued following statements today:

Micah: My tummy hurts a bit. I think I need some more broth. Can I have some more please?

*

Micah: Mom, can I have some spinach juice please? Just make me some spinach juice now (at bedtime).

*

Micah: I had my broth for lunch at school. It was so good.

*

Ezra: Ooh, can I have a carrot, celery juice please? Please, mom?

And what did they have four lunch? I made them both "Pizza" again. It's basically ground up chicken, cauliflower, and onion spread thin like a pizza crust on a baking sheet. I heated it up and covered it with tomato sauce. They snacked it up. And for dinner I mixed 1 kg (2 lbs) of broccoli, cauliflower, carrots, and onions with about 1.5 lbs of ground pork, added some spices, and baked it in the oven in a casserole dish (for us adults, I stuffed peppers with the filling). I presented the sausage casserole and peppers and allowed them choose. They both had several helpings of the casserole including their delicious carrot and zucchini chips.

Bottom line: it can be done. Detox is crazy difficult, but 10 days of struggles is all it took, versus a life time of carb addiction and unhealthy gut. Do they eat plain veggies...well, yes but not readily. But hey, they're eating veggies, demanding healthy juice and broth, and eventually I think they will be able to and want to try all sorts of new foods, as long as it looks good and contains a major motivating delicious word like 'sausage', 'pizza', or 'chips.

Lottery diet!

Lottery diet is what I'm now calling the GAPS diet, because if we won the lottery, we might be able to continue it.
Things have been going pretty well. It's hard to imagine that 10 days ago I had to bribe my kids with toys and TV time to get them to drink their broth. I would sit in front of the TV and let them watch one minute of their show for every sip they drank. Now they actually request the broth.
Two days ago I made a recipe from the Introdiet cookbook I downloaded from online. It was total rubbish. I mean, it tasted ok, but food has to look good, not just taste good. I really don't blame my kids for balking at the site of the zucchini chicken casserole. So yesterday I ground up cauliflower, onions, and chicken breasts, added some salt, spread the whole thing onto a baking tray and baked it. I even sliced some tomatoes onto it and declared it was pizza. In addition to that, I peeled carrots, and kept peeling them to thin strips and then fried them in coconut oil, and added my new favorite salt ever, Hymalian salt. The combination of coconut, sweet, crisp, and salty is utterly divine. Not only did my kids snack up the pizza and carrots, they demanded seconds, thirds, and wanted some for lunch again today. HA! And Ezra doesn't like chicken. Well, he actually likes chicken, he just thinks he doesn't.

So if all that is going so well, what's the problem? I seem to go to the store 3 times a day now, to keep our veggies stocked. I make juice for the kids. If they don't want to eat their veggies, I give them the option of a green juice, but that requires carrots, and apples. I've added up all the receipts from since we started the GAPS, so 10 days and it added up to 540 euros. So, you can imagine why I feel like maybe we won't be able to continue eating this way. Who has 1500 Euros for food a month? We don't have enough time to start our own vegetable garden, and it would have to be a pretty massive one to supply all the food necessary. I would just buy food in bulk, but that is not something that is done here. I tried to work out some deals with the suppliers, and they just figure 'hey, this lady wants to buy my food, why should I discount it?'. So we are trying to figure out the financial aspect.

The other thing is, I really am in the kitchen a lot. I was so happy that I would now have some time to myself now that the kids are in school, and I have been busier than ever, making them breakfasts, packing special lunches, working, shopping, planning. I don't know how I did all that when they were home. So we will have to see. Perhaps we have to aim lower and just do the best we can.

Mother's nerves fried to a crisp with picky eaters

Everything is fried in our house these days. My nerves, our food, and our electricity. So I was planning on keeping you all updated on how my picky eater battle is going (or should I call it turning picky eaters into veggie fanatics?), and then our DSL got fried because of some electrical problem, as did our nightstand lamps, alarmclocks, curling iron, and power cord. It's very annoying. So now, I have no internet access and am afraid to use the computer at home, because I don't want it to fry. Here I am at my work desk then writing this brief update.

It is getting harder on me. I'm anxious for them to eat the good nutrition so we can just move on and I can introduce dairy and nuts again. Imagine that. 9 days into the diet and I'm thinking about introducing the foods they had to avoid: eggs, nuts, and dairy. They are already getting some scrambled eggyolks for breakfast, and seem to do fine with them. That's the thought that keeps me going. They will be able to eat more food. Not less. Although in the meanwhile I still feel like I'm starving them, because Ezra refuses to eat some things. Here's a funny little conversation from yesterday after dinner.

Me: Mom, I feel like I'm starving my kids.
Granny: Well you are.
Me: Ugh, I'm no better than a Nazi.
Granny: No, no. You're doing it for a good reason.

I can't tell you how helpful it is to have Aaron's cooperation. The dinner tantrums continue. They are loud, desperate struggles to control what they eat. With Aaron and I both not backing down, they eventually do actually eat what we give them, even if it isn't as much as we would like. I was so worried that they aren't getting enough food, until I realized that Micah has gained 3 lbs since being on this diet, and his previous digestion which ranged between severely constipated and diahrrea has now become normal. It's working!!! I on the other hand have lost 9 lbs in the last 8 days. So it's working for everyone. Even with the little bit that the kids are eating, they are getting more nutrient and calorie dense food than ever before. I try to remember that when Ezra is screaming and pinching. And I put carrots, sausage patties, sauerkraut, applesauce and a thermos with beef broth in his lunchbag yesterday, and he ate it all up.

OK, I would make this longer, but I have to actually work now.

Picky eaters almost won

This morning I was ready to call it quits with the diet. It's just so hard. It's not the food. In fact, after only five days I've lost 6 lbs, and I never have any cravings. Well, not never. Day 5 was pretty rough. I desperately wanted some bread. And the food is soooo delicious. It is organic, it is rich in fat which makes me feel not only full, but satisfied, something I never felt no matter how many carbs I guzzled when I was on my typical diet of sandwiches, chips, and cookies.
No, what's hard is that I have to plan ahead. That was hard even when we ate the other way, but then at least we could just go get some fries to everyone's delight when mommy didn't plan to make dinner in time, or have some rice crackers. And the other thing that's really hard is trusting that my children will eventually eat what they have been refusing for five years now. It's so heart-wrenching to see them this hungry, and to know that the easy way out could fix that. I'm not withholding food from them per se, they are withholding it from themselves, by not eating the healthy protein, fat, and carbs I provide for them. But it still feels like I'm the mother whose not feeding her kids, and what mother would do that? I keep on telling them though when they ask for the 'bad stuff' that I love them too much to give them things that will hurt their body.
I don't want to give up and go back to feeding them things that make them hyper, give them rashes, make their stomachs hurt, and have to cook the same three things for them, because they won't eat anything but rice, pasta, and chips. On the other hand I don't want to have to do this either. I wish I just wouldn't care. Whenever I have a bit of freedom ahead on the horizon, I manage to create more work for myself.
On the other hand, how can I not? Once I realized what is causing their health and mental problems, how can I not help it? But if I'm making the right decisions, choosing the better part if you will, why doesn't it feel better? Why isn't it easier? Why am I not happier? And why do other people get to have the cake and eat it too (I specifically mean have singing jobs, and have children as well)? I realize I'm getting very philosophical here, but with all the free time I have from not scheming about the foods I can eat, I find myself confronted with the very questions I tried to drown out with those carbs.
If I had to guess I would look for the explanation in delayed gratification. Often it seems that choosing the right is really choosing what will in the end benefit you most in the long run, not what is pleasant and easy first. I chose pleasant and easy (well, not that easy) for 5 years now (and much longer than that if we're honest), and I haven't gotten very far, and frankly it wasn't all that pleasant either. Not with my personal weightloss by giving in to my sweet tooth,  and not with Ezra's recovery from autism. This morning I just couldn't take another fight about the food from the kids. I was ready to give up, but thankfully I had support from my mom, who lives with us, in case you didn't know. She just told me to hang in there. And then I got another gift from a dear friend in Washington, which she had promised to send me for over a year now. The dedication in the book even read September 2010, but what a perfect day for it to arrive. It can't have been coincidence, that a ring with the inscription "Never, never, never quit" came on the day that I was ready to quit. (Therese you're an angel sent from heaven!) So I didn't. And tonight as I'm writing this post Micah was so hungry he asked for me to bring him more broth. Both of the kids ate a few bites of vegetables for dinner. Maybe, just maybe, this might work out in the end.  

How Diet causes autism, and why the Gluten Casein Free Diet is not the answer

OK, I admit, the title is purposefully sensationalistic. I don't actually know what causes autism, but after reading Gut and Psychology Syndrome from Doctor Natasha Campbell-McBride I'm 150% convinced that diet is one of the main factors in what causes autism.

I'm not a Doctor, or medical expert, just a mom who does a lot of research. However, Dr. Natasha Campbell-McBride is not only a mother of a successfully recovered autistic child, she is also a trained medical doctor (Neurologist, and brain surgeon), as well as having specialized in nutrition after finding out her son was autistic. So if you don't believe me for my lack of training and titles, then read her book. No need for me to re-invent the wheel. It's pretty easy to understand, and it will give you all the details and explanations of what I am about to summarize below, with research and scientific studies quoted to back her up.

I found myself chanting mentally on every page "Why didn't anybody tell me about this? Why didn't I know?" (and if I'm honest with myself, I did have a friend who told me about this, and at the time I thought it was too extreme, and that I didn't have the guts to do it, because I myself was addicted to carbs). In my previous post about what to do when you suspect your child is autistic, I said that if I could go back and know then what I know now, I would have started a GAPS or a SCD diet immediately. I constantly think of all the things I could have done differently but after reading this book, I would prioritize this as the MOST IMPORTANT INTERVENTION ALONGSIDE ONE ON ONE EDUCATION.
So here is why I tell you: don't shy away from the work. You will soooo regret not doing this. I'm convinced that this diet is 50% of the solution (with the other 50% being training the brain through one on one intensive education and something like Brain Balance or Neurofeedback).

After reading below explanation, jump to the bottom of the page, where I give you an update on how it worked for us after doing it for 6 months, and what I have learned from it. It isn't what I thought it would be. 

OK here is the explanation of why I recommend you do this diet summed up as simply as I can:

Our gut is the first line of defense to foreign objects, bacteria, toxins, etc. and a very important part of our immune system. Normally the gut is populated with good and bad bacteria. They are in balance and take care of anything that doesn't belong in our body. In children and adults with Autism, ADHD, ADD, Dispraxia, etc their digestive tracts are out of balance (omitting explanation why, for brevity but it's in the book), and therefore their immune system is compromised. When there are too many bad bacteria and not enough good the body can't handle the toxic load. Foods and toxins get into their blood stream and into the brain that shouldn't and cause heaps of damage (This condition is called Leaky Gut). And on the other hand important nutrients that the body and brain need for normal development do not make it to the brain because food isn't digested right, thus the brain doesn't develop the way it should, making it all worse and compromising the immune system even more. 

The idea of the diet is to replenish the good bacteria with pro-biotic foods like fermented vegetables (and perhaps some supplements), and at the same time starving the bad bacteria of it's main source of nutrition: starches. The foods allowed on the diet are very nourishing and simple to digest, thus giving the stomach a chance to repair itself and supplying the body with nutrition. Essentially this diet is a complete sugar free, grain free diet (although fruits, and honey are allowed, just fyi). You do that for about 2 years or until your child has been symptom free for at least 6 months. Now before you throw your hands up in the air and say: no way, that's too hard, let me tell you what it looks like after you've waited a few years and tried other stuff first (like the GFCF diet, Feingold, etc).

1. Autism doesn't go away or get better by doing nothing and waiting it out. In fact it gets worse and the gap to catch up to peers widens (which -you've guessed it- means more work for you, mama, or daddy)
2. Trying easier things first only works for a little bit, because the root of the problem is still there. Only GAPS, or the SCD diet address and cure the actual problem in the gut.
3. No matter how finicky of an eater your toddler is now, when he's older he'll be stronger, more verbal, and more finicky, and the tantrums and control battles are more aggressive and louder. 
4. Two years of work are nothing compared to the work you'll have to put in if you don't do it. You're child will develop more food allergies, more intolerances, and refuse anything besides starch. Every meal is a battle.

Now what about the Gluten and Casein Free diet? I did that for 3 years now. At first we saw a huge improvement, and so will you, but it won't last long. Here is what Dr. Campbell-McBride says about that:
"If you transfer this child to the GFCF diet, processed carbohydrates containing gluten are replaced with gluten free processed carbohydrates, made with rice, sugar potato starch, tapioca flour, soy, buckwheat flour etc. This sort of food will feed the abnormal flora in the child's gut just as much as the previous diet did, perpetuating the vicious cycle of a damaged leaky gut and toxicity escaping from this leaky gut into the blood and brain. Of course the fact that out of dozens of various toxins, flowing from the gut into the body, two toxins have been removed -gluteomorphin and casomorphins - does some good."

It does help a tiny bit, and I can testify to that, but it hasn't solved his picky eating and carb addiction, and his gut flora is still a mess. In addition to those problems the gluten free products are very high on the glycemic index, even higher than the gluten containing ones (because gluten is a protein which slows down digestions, i.e. requires less insulin). High glycemic foods cause inflammation in the body. Children with autism already have chronic inflammation in their bodies and brains, so when you give them GFCF diets it doesn't abate the inflammation, it makes it worse, and the bad bacteria are still fed.

Here are some resources to help you get started with a GAPS or SCD diet (by the way SCD stands for Specific Carbohydrate Diet. It has been around since the 1920's with 90 years of scientific evidence to back up it's effectiveness. However it wasn't specifically created for autism. The GAPS diet is based on the SCD diet, but was specifically altered for patients suffering from autism, ADD, ADHD, etc.)

Book Gut and Psychology Syndrome
Cooking class to reverse food allergies
Meal Plans
FAQ from the Gaps Site
Dr. Campbell-McBride on youtube.
SCD Recipes and help


Update April 28, 2012: We did GAPS with Ezra for six months. It did not yield the results we hoped for. He got better at first, but then started eating mainly meats and fruits. I have learned in the meanwhile that meats are actually very hard on the digestive system, as are fats. We have done further research and are currently favoring Dr.Fuhrmans' recommendation of eating 95% plant foods. His recommendations are not specifically for autism, but they make enough sense and present solid scientific research for general health, that it made sense to follow it for the whole family. Plus the Chinese Medicine Practitioner that I consulted said that the best thing for a kid like Ezra is very little meat (or none), and lots of steamed vegetables, things that are warming to his middle and require very little digestive juices. We now also know that he has a candida overgrowth, so really he should be taken off most fruits. That's where we saw the major difference on the GAPS diet during the introduction phase where no fruits were allowed. He really calmed down, spoke clearly. It's just so hard to pull off that kind of diet when you send your kids to school. So to sum up I've taken a lot of information from the GAPS diet, but I think Dr. Campbell-McBride is wrong about the meat consumption. With any dietary intervention the key is to get kids to eat lots of green vegetables (and yes, you can imagine that that is easier said than done). If you do a GAPS diet and they end up eating only what Ezra ate, it will be better than eating just carbs, but it's only the first step in the right direction.

Put off having more children

Disclaimer: do what you think is best. I have no business telling you to put off having kids. Everyone decides what is best for them.

My story

Ezra was merely a year old when we got pregnant with Micah. I had a little inkling something wasn't developing right with Ezra but it was too early to tell, and I didn't even know about autism. We wanted more children, but didn't really plan to get pregnant again. A little moment of indiscretion led to our darling Micah. I'm so grateful for my treasure, and I love him with all my heart.

I do admit though that as a mother one of the major sources of my stress and anxiety about Ezra's challenges have to do with Micah. When I was 8 months pregnant, Aaron had kidney cancer. He had to have his kidney removed, and I was left to care for both him and Ezra. He couldn't even move or lift anything. I'm sure Ezra felt the anxiety I felt for Aaron. He became more and more difficult, and it was obvious by now (he was 18 months old) that something was really wrong. He didn't have any words, and had multiple tantrums a day. He had severe separation anxiety, and freaked out if he couldn't see me. He spent most of the day right at my side, or on my hip. His attention span was non-existent. He would spend less than a second with a toy, and demanded my attention every second of the day. Then Micah was born. He was such a beautiful little baby. He was gentle, calm, snuggly, and just plain adorable. I was in love with him just as any mother is with her newborn. Ezra of course was jealous, and became more and more difficult to manage, but would only go to me. I had to constantly hand Micah off to granny or daddy, so I could calm Ezra. I started resenting Ezra for being so demanding. Two months after Micah's birth, we had Ezra assessed and he started getting therapies. I spent a lot of my week taking Ezra to his different therapies, where I couldn't bring Micah along. For me that was and still is very difficult.

One of my major inner conflicts is to want to be with Micah, but knowing that Ezra is the one who needs my help the most. If I don't spend time with Micah, he will still develop normally, whereas leaving Ezra alone to his own world, will severely hinder his brain development. Temple Grandin says in her book The Way I See It, that the worst thing you can do with an autistic child under six is nothing, because the brain is not creating pathways on it's own, and needs stimulation. It tears my heart to shreds when Micah looks at me with big sad eyes, says things like "I wish I was autistic too. Then people would come play with me," when I choose to play with Ezra in the playroom, or spend time training volunteers, watching Ezra in the playroom with them, giving feedback etc. Ezra gets all the attention. People will come to our house, even family, and exclaim with all their energy EZRA, how are you? just to get his attention. Micah will come running up with shining eyes and say HI! and repeat it four or five times, but be completely ignored. When people call, they always ask how Ezra is doing, rarely do they want to know anything about Micah, and he notices. Ezra can demand so much of my energy that I simply have none left to play with Micah. Then I feel guilty, and start to resent Ezra again for taking up so much of my time. It has gotten a bit easier now that Micah is able to understand more that Ezra is different. The other source of major concern is that Ezra is still jealous of Micah and pinches and hurts him all day long. There is nothing that makes me angrier than seeing Ezra who is almost twice Micah's size constantly beating him up.


I know that these problems can be solved by attitudinal work with the Option Process of the Son-Rise program. Life isn't fair for anyone, and the sooner we can accept that, the better...in theory. It's easier said than done.

When we went to Massachusetts, just Ezra, Daddy, and I we saw a completely different boy. Ezra was calm, happy, sweet, and attentive. He never screamed those blood curling screams that he uses at home. Sure he had excellent support from the playroom staff at the Autism Treatment Center, but the major difference was that Micah wasn't there. The minute we got off the plane when we got home and into the car it's like someone flipped a switch and he instead of hugging Micah started pinching him and screaming.
Ezra does love Micah, and Micah adores his older brother. Like all other siblings they learn from each other, the good and bad things.

I just think, that my life would have been a lot easier, if I had waited to have another child until Ezra was six or seven years old. Then I wouldn't have to deal with all this guilt and knowing that no matter how much I give someone is always going to come up short.

Have your child tested for food intolerances

This could be a fairly extensive post, but I don't want to go into all the medical details. I'll try to keep it really simple and short.

The Short Version:

A healthy child is a happier child. If you remove all the things that the immune system is reacting to, then the body has a chance to rest and strengthen it's immune system. The better the immune system, the healthier the child. The healthier the child the less problem behaviors you see, and the more progress you'll see. Or a simple metaphor: if your child's body is a fortress under attack, you want to only send in the troupes that will bring provisions for the soldiers, not the enemy troupes that will attack and weaken your child and that it will have to fight off, when what it really needs is reinforcement. Our job as parents is to figure out what our child's body considers enemy and what reinforcement.

OK. Great idea. Where can I do that? 

There are two ways I think. Through bioresonance (non invasive) or blood test. We used Alltess lab. It cost $160 for 180 IgG test.  We had the kids' blood drawn here in the Netherlands and sent it via Fedex to the US.
Disclaimer: Food intolerance (IgG) and food allergy (IgE) are not the same. A food allergy can be life threatening whereas an intolerance just causes problems with the immune system. It's best to just google the difference (and test for both).


A bit more explanation


There are so many different explanations for what causes or exacerbates autism/autism like symptoms. The most simple and elegant explanation that I've ever read is by Dr. Melillo. He states that Autism, ADHD, and all those kind of brain problems are really a problem of the brain halves not communicating in sync, because one of the brain halves (in ASD that is typically the right side) didn't develop at the same rate as the other half (and here is where you could come up with lots of different reasons why, such as genes, toxicity, vaccines, viruses, etc.) The function of the immune system is divided up between the left and the right brain. When the left brain is doing it's job nicely in producing anti-bodies to patrol the blood for harmful pathogens and the right brain isn't keeping up it's job to check the anti-bodies, then the child develops a lot of food intolerances, because the immune system is compromised.
The solution to this is to strengthen the brain half that is weaker so it can communicate in sync. There are various ways of doing that. Here are the methods I read that will strengthen the weaker brain side:

1. Brain Balance program by Dr. Melillo. Costs around $5400-$6000 for a 3hrs/week treatments for 12 weeks. Some include the intolerance blood tests in that price. All the parents I have talked to that did this treatment say it helped their child recover completely from the intolerances and even from autism. Read the book Disconnected Kids, by Dr. Melillo.
2. Interactive Metronome helps the brains communicate in sync to some degree.
3. Handle   I haven't done much research on this but my friend tells me that this does the same thing as brain balance, but with the benefit that you don't need your child's cooperation.
4. Neurofeedback training. This is highly effective, but as with all these treatments the efficiency depends on the number of sessions you have the development gap you are trying to fix. I heard it can take up to 100 sessions or more. 
5. Cranio Sacral Therapy  Read this from a fellow blogger with a child that had more allergies than I have ever encountered.

What have I done so far? Well, nothing. Mainly because of costs. I was going to go to Florida this summer for three months with the kids, so I could do the brain balance program with Ezra, but we didn't quite get the support we needed to do such a venture.
What would I do if I had the money I needed ($22,000)? I would do two 12 week programs of brain balance, and then also buy the Zengar institute's computer and software so we can do neurofeedback training at home with Ezra and Micah with unlimited sessions. Then I would find someone to do Cranio Sacral Therapy with Ezra, and I think we would be good to go.

However, fixing the brain is only 1/2 of the solution. The wrong kinds of foods cause havoc in the digestive system, and once damaged, it will not operate the way it needs to. Everything I've read indicates that the digestive tract doesn't heal itself or recover spontaneously, but needs dietary intervention to heal what was hurt, and restore proper balance. One without the other won't work long term, i.e. just diet alone won't fix the reason the digestion is off, and just fixing the brain, won't help the stomach heal.
Ezra is totally obsessed with food. He wants to eat all the time. He can't get enough into himself, and wants basically only carbs. However, he simply doesn't get enough nutrition from it because his digestion is messed up. So his body keeps demanding more. It's a vicious cycle, which is why the next thing I would recommend is putting your kid on a SCD, or GAPS diet immediately.

Call the Son-Rise Program immediately

There are several different treatments out there, so why do the Son-Rise program? Because it is the only program that focuses on the relationship between you and your child, and that gives the PARENTS the tools to cope. As I mentioned in Putting myself first, helping your child is all about your attitude. The Son-Rise program is the master of attitudes, beliefs, and hope. When I went to the Start Up program in the UK last January, it was the first time I truly felt hope for Ezra. Before it was desperation. The Son-Rise program gave me the tools to be OK with Ezra's diagnosis, to understand, and accept him. It was liberating, not to have to try and change him.

Kids in the Son-Rise program can recover completely. ABA therapies can work in helping your child manage tasks, but if you want your child to become a connected human being who WANTS to be a part of this world, this is the program to use. As evidence of this claim, the Son-Rise program was just voted the number one therapy tool in the Autism One Conference in Chicago 2011.
Now, not all kids will recover with this program. I'm not telling you to not consider other programs, but knowing what I know now, I wish I could go back and tell myself to throw all skepticism overboard, and run it while Ezra was even just one year old. It seems to me that the kids that recover completely are those who had intensive one on one therapy for 40-70 hours a week, for 2-3 years before they turned 6 years of age.

It might seem as if it costs a lot, but really, it's a drop on the hot stone compared what an ABA full time school costs, or even a DIR floor time school. I think the Rebecca School in NYC which would be one of my dream schools for Ezra costs $72,500 a year. Speech and occupational therapy twice a week costs $1200 a month. With this program, some of those therapies become superfluous. You will run it with the help of volunteers.

Before you skip over this blog post, reconsider giving it a try. Even if you don't have a full time program, the people at the Autism Treatment Center of America are the most loving and caring people you'll ever meet. Their attitude is infectious.

Raise some money to go the Start Up. We did it. It's doable. They also have scholarships.
http://www.autismtreatmentcenter.org/contents/programs_and_services/index.php

A view you'll need

2a) Thinking in Pictures and The Way I see it by Temple Grandin

A lot of what you will read when reading up on autism and treatments will be written by experts. Experts that is...who have never in their life been autistic, and can only provide the accumulative knowledge of observation, not introspection. If your child is autistic, I highly recommend reading these books, because Temple Grandin is autistic, and she is a phenomenal, brilliant scientist. Her insight has more to say than any so called expert. She has walked the walk! I was so much in awe of what she wrote, and it helped me see my own son in a very different light.


Here are the links to buy the book, or check it out at your local library.

The Way I See It!

Thinking In Pictures

Put Myself first, not my child

1. Put Myself first not my child

Trust me, nothing is as important as you. You make or break your child's future. That is the truth! You are responsible. It is an enormous responsibility, and sometimes seems like a burden too heavy for your shoulders to bare. When you look at it that way, it will be a terrible burden. Life will be hard. Rather look at it as your blessing, your opportunity to grow in humanity, humility, and understanding far beyond what others will experience. It also means, that if you are in charge of it, you need to be in top mental shape. You're in it for the long run.
I just recently spoke to a friend of mine who has a relative with a teen-aged special needs child. She apparently just tried to kill herself for the 10th time. In my opinion, if you tried that many times without succeeding it is because you want your current life to be over, not for actual life to be over. Anyway, it was a wake up call to me. I was so close to burn out. I don't exactly have suicidal ambitions, but sometimes I do cast my eyes to heaven and think 'Can I come home now'? In fact, I'm sure that's burn out. I yelled at my kids for the smallest things, I lost it all the time, with myself, with my husband, with the kitchen cupboard that wouldn't shut...I couldn't seem to find my smile, and I felt generally just down and depressed. Sometimes I don't know where I'll get the energy to face another day. I cried multiple times a week, sometimes a day. So how did it get to that? Talking to my friend about his relative helped me realize that all these years, I had been putting Ezra first. I have been denying myself needed time off. How could I take time off, when no one knew how to take care of Ezra, when leaving him meant he would scream for me for two hours, when I knew I was inflicting this burden on someone else? I couldn't even enjoy time off if I had it because I was so worried about him. He had such severe separation anxiety that if I left his line of sight he would start wailing. He did that for about 4 years.
Yes, no one can take care of your child like you can. But you cannot let that stop you from living your life. If I could go back I would tell myself, that he will be OK. And so will yours. It's hard at first, but find someone you trust to take your child off your hands for a couple hours a week, or even a day if you can. I know you're not sleeping well. I know he's probably up at night, and early in the morning. My life got so much easier to handle once I realized that he was not hurting himself at night, and that I could just put in the earplugs. It took me three years to let go and realize that I needed sleep if I wanted to cope.

You are the marathon runner. Your child is just hitched to you in a trailer, and you are pulling him. You need to stop and hydrate. Enjoy the scenery along the way, because otherwise you will never make it to the finish line.  So find a hobby and do it. Breathe! Forget about your child for a few hours. Interact with others, find friends you can enjoy your hobby with. Nothing is as refreshing as human interaction. My hobby is horseback riding and my riding pal who knows about my situation usually amuses herself by counting the deep contented sighs I make when I ride through the forests. It's like the weight of the burden is lifted for a few hours.

This deserves a whole separate post, but if you are having a hard time it's because you are having a S.A.D.  S.A.D. stands for sucky attitude depression, or sucky attitude day. I know from experience that the only thing that makes having an autistic child harder is having a sucky attitude about it, which leads me to point number 2. The Son-Rise Program!

What to do when you suspect your child is autistic

This post is intended as a guideline, a starting point, perhaps even a lighthouse in your hurricane for you moms and dads who have just found out or suspect that your child is autistic, or simply different from the rest. No matter what the experts say of when you can diagnose a child, if you suspect your child is different, don't wait. Get a diagnosis YESTERDAY! Sign up wherever you need to. Waiting times can be quite long and the clock is ticking.
I started suspecting Ezra was different around 12 months old, and I asked my doctor who shushed my concerns at every appointment until we had wasted an entire year. And then he still wouldn't take action, so I contacted First Steps early intervention in Indiana where we were living and they confirmed my gut instinct. What I'm saying is, the same signs were there at 12 months that they later said made him autistic. Here are some of the things that made me think he's different:
At 12 months:

• He never turned his head when I called his name. Typically developing children will turn their head at about 8 months, even if they don't look in the right direction.
• He didn't imitate anything, no gestures, no sounds
• He rarely looked at me
• He didn't babble, talk, or interact with me

At 18 monhts:

• He still had no words, he started screaming a lot and having tantrums
• He would engage in repetitive behaviors such as dumping out water glasses, staring at the water running down, and couldn't follow any simple directions like "give me the cup"
• He didn't point, or seek shared attention (like showing me a new toy)
• He had a lot of separation anxiety that never went away
• He didn't point at anything or take my hand to show me things

So there are definitely signs you can tell early on. If any of these apply to your child, you are my fellow warriors. I salute you. Yours is the errand of angels. I can tell you now that no matter how much your family, friend, and therapists care, no matter how involved they are, none of them will ever truly understand you as well as another parent with a special needs child. If you're looking for support and understanding, join a yahoo group or a parent group of autistic children in your neighborhood. It is such a relief to be able to share your frustrations, challenges, joys, and tears without the judgment of "you're just making it up, it's not that hard, it's your fault he's like this, you're just not a good parent." Also, it saves you the trouble from having to reinvent the wheel. Chances are they've been there, done that. This is what this post is about. The lessons I've learned, and the things I wish I could go back and do over.
My oldest son Ezra is now 5.5 years old. He was diagnosed in January 2008 with being not typically developing, and probably autistic. The diagnosis of autism and ADHD has since then been confirmed. At the time of his diagnosis he was just about 2.5 years old. I have and still spend many nights lying awake, trying to drown out the regrets and the guilt that pound at my consciousness for not acting on my instincts, and doing more for Ezra earlier on. I am working hard on accepting that I did the very best I could, with the information available to me. I thought myself very well read at this point, because I spent the last 4 years reading up on treatments, protocols, personal recovery stories, biomedical treatments etc, learning and comparing all along. And then I joined a yahoogroup for parents of autistic children, and was blown away by how little I really know. Some of these mothers have been researching for 1-20 years. They are amazing. Anyway, if I had a time machine and could go back in time, these are the things I wish I had done right away. I hope this list helps some of you out there. And no matter how much you would like it to be, journey through autism is not a sprint. It's a marathon. You're in it for the long run. There are no quick fixes. So make peace with that fact. These suggestions are especially for ASD kids under 6 years of age. These might seem like weird suggestions, but honestly this is what would have helped me the most. 

1. Put myself first, not my child. What I mean with this is get help for your child, but realize now that you need some you time to not let autism become your life. Why?

2. Call the Son-Rise program immediately This program will help your child and you actually accept and be happy with a diagnosis, and has the potential to totally recover your child from autism. Make a special playroom, and find volunteers to help you. Why?

2a.) Get an inside perspective into autism from a person who actually is autistic by reading Thinking in Pictures, and The Way I See It by Temple Grandin. Why?

3. This is a big one! Have your child tested for food intolerances and allergies and remove all foods immediately that he is intolerant to. Also, if you can afford it go organic, but at the very least, stop buying food with colorants, E's, or any type of preservatives. Your child's brain development is important and if the right nutrients are not getting to the brain but the wrong ones are, then it will make matters worse. Why?

4. Clean up the food! Start a vegetable/fruit/beans diet, SCD or GAPS diet now. Why?

4a. This actually goes along with 4 but I'll make it a separate point. DETOXIFY your household. Get rid of toxins such as your deodorants, shower gel, shampoo, fabric softener, laundry detergent, etc.! What the heck?  

5. Put off having more kids, if you don't have more than one. Why?

6. Pick a method that will stimulate the cerebellum such as neurofeedback training, or brain balance program with your kid. Why?

7. Find a sensory integration therapist, and have them start working with your child. Waiting lists can be long, so get on one ASAP. Read all you can about sensory integration. Why?

8. Get rid of all electronics. No battery operated toys, no TV, nada. You think it helps you have a break, but really, it prolongs the problem and makes it much worse. Why?

9. Cancel all your plans and dreams for you and your child's future. Wasting thoughts on what could/should be will only make you miserable. You can  either see autism as lemons straight up for the rest of your life, or you can make it into a lifelong supply of lemonade. It's your choice how you want to see it. Live in the moment. If you focus on what can't be, you will miss what can be. One of the most amazing things about autism is you get to learn and experience how truly amazing human beings really are, how magnificently capable they are. You can see it as an opportunity to celebrate a lot because each little step equals a major accomplishment, or you can also choose to be constantly miserable because your child is not doing what others seem to do without effort. Having an autistic child can teach you like nothing else how to be happy in the moment, choose your own happiness, defy the norm, love unconditionally, and inspire without demanding.
10. Find a pediatrician who is with DAN or with Dr.G, or someone who is knowledgeable about treating autism bio-medically. Some people see autism as a biomedical problem, and there are so many things you can do and try. Word of caution: stay away from chelation drugs, and drug treatments that will kill the gut flora. They tend to compromise an already strained immune system. A diet heavy in plant foods is the best way to chelate.

I understand that this list might be harsh to process. If I could go back and talk to myself, I would probably smack my past self and tell her to just get on with it. Coming to think of it, that's actually what I did, so perhaps I should stop feeling guilty? I didn't let his diagnosis stop me, and I don't think I'll ever give up fighting for him. But I would like to stop fighting myself. This is life now, and there is joy in it, if one doesn't waste too much time thinking about what could and should have been. It doesn't exist. All there is, is now!

Stay posted as I write the reasons for all these steps. I don't have the time to include them all right now, but promise to write them up in the next few weeks. Also, if you are one of my anonymous readers, and have something to contribute to this subject, something you wish you had done, or would like to ask me a question, please put it in the comment section.

18 months in the Netherlands/Autism in the Netherlands

This is a dual purpose post. It is partially meant us an update and will hopefully also serve as a bit of a guide if you're considering moving over here with your special needs child (and don't, if your child has autism). It's been 18 months since we left our home and friends in Indiana to move to the land of windmills. I fear that like Don Quixote we might have been chasing windmills when we decided to come here. It's not all bad. They have the best horses in the world, the most beautiful flowers, and some absolutely wonderful people. But some days it feels like it's just mostly bad, and not only because the weather is basically overcast from October to March. I think to a large extent this has to do with the fact that we are only here for 3 years, and I have Ezra's life and education to worry about. I don't worry about Micah (much), because he is typically developing, at least as far as mental ability goes. Ezra however is so far behind in everything, that his future in this cold country is a constant concern. In fact I've been so frustrated with the government here that for the first time I started understanding why people do bombings. Don't get me wrong. I think those acts are absolutely heinous. How dare you take the lives of a father or mother, son or daughter? Just the thought that because of some act of terrorism a son might be waiting in vain at the door that night to jump into daddy's arms after work. It makes me sick. However, I do understand the sentiment to want to send a message, and be heard.

Here is an overview of my battle with the Dutch windmills of bureaucracy:

First let me explain that there is something called PGB. It's a type of assistance the government provides to those with special needs, whose needs aren't covered by health insurance. Health insurance is supposed to cover speech therapy and physio therapy. It does not however cover occupational therapy more than 10 hours per year. To effectively treat the sensory integration problem that underlies most autism ideally you would get at least one hour a week if not every day, for 2-3 years. So this is something you could use the PGB for, if it is obvious you need it. PGB also covers physical help at home if you're handicapped, group therapy, parent respite in form of weekend camps for their handicapped children, etc.

Here is a chronology of the help I've been trying to get for Ezra:

2009
August
Calling International School, Therapists, etc. No answer until September when school is in.

September
Finally get people on the phone. Make appointments 2 weeks to 3 months from now for initial intake. Then you get an appointment after that 3 weeks later to see if you can get help (therapies etc.)
International school says: "we don't want a child with problems."
I get an appointment with Bureau Jeugdzorg (youth office) responsible for giving the diagnosis of help. I've learned since in my dealings with this office that they are mainly overworked people who don't really know what it is like to need the help. I explain exactly what I want, and that I need PGB in order to do the Floortime therapy as prescribed by Dr. Greenspan.

October
Ezra starts school at Tomteboe, what I thought was a school for special needs children with Autism.

November
Still haven't found a speech therapist who can work in English. Start work with an occupational therapist.

December
Ezra leaves home at 8 am and comes home at 4 pm on the taxi every day totally overwhelmed and either cries for hours or obsesses over the DVD player (i.e. pushing DVD's in and out).
I visit him in school. They aren't doing anything I asked them to do. Ezra is completely bored and overloaded by the chaos and noise of the classroom (although there are only 10 students). They don't speak to him in English. I learn that they really aren't a school, but a medical baby sitting service. Kids get put in there to find out what school they should go to after this. What they call treatment doesn't look any different from Micah's typical playgroup, just less kids, and a visual schedule. Still no therapies for Ezra at the school. They said they first have to observe him for 6 months to determine if he needs therapy (despite having a detailed treatment plan from the foremost authorities on childhood developmental delays, and the treatment plans and evaluation of his former speech & occupational therapists).


2010
January
I finally get the translation from the indication from Bureau Jeugdzorg. They say we won't get PGB, because Tomteboe is all he needs. We arrange for an interview with the school leaders. Together we agree that it isn't working, and they said: Ezra is too autistic for this place. We can't help him. I determine to take Ezra out of school by March.
I attend the son-rise Start up in the UK, and learn about the Son-Rise program.

February
Ezra is out of school at 1 pm every day. He's doing better. Final meeting with Tomteboe and B.S. from bureau jeugdzorg. She gives me the absolute smallest amount of PGB, because I don't want Ezra in that "school".

The main problem is that Dutch people don't know how to treat autism according to me, and they certainly don't believe that you can recover from it. They are so far behind in their research. Everything in this country goes slowly and with a lot of paperwork. They still think that Autism is a psychological disorder, and wait to diagnose it until they're older. In fact many of these special needs schools for kids with Autism don't start until the kids are six years old. To me that doesn't make any sense in light of all the research proving that early intervention is critical.  I've even had them tell me that if you wait it out it gets better. Well it doesn't, dear Dutch people, and there are loads of accredited studies that prove that. Early intervention is crucial!


March
We start our son-rise program at home. Life seems great. Micah is now going to playgroup every morning.

April-June
Things are looking up. We don't have a lot of volunteers, and aren't terribly good at the program, but progress is being made.


July
I finally get the PGB that they promised in February. Six weeks later I get the translation of the paperwork. It states that if I want to complain I have to do it within six weeks. Great. After talking to my friends, I learn that they get thousands of Euros in PGB for their programs, and we got barely enough to cover anything. SCREWED, but, oops too late to complain.

July-September
All volunteers go on vacation, and Micah and Ezra are home together all day. Ezra becomes aggressive and starts to hit/bite/pinch make Micah scream non stop. Micah goes from happy camper to crying, screaming teasing all the time.

October
Things are getting more difficult between Micah and Ezra. It's constant fighting. I get the local authority to clear Ezra from obligatory school. He's excited about the Son-Rise program and impressed by what it accomplished. He also says that doing this program saves the government at least 17,000 Euros a year in schooling costs for Ezra.

November-December
Hire a professional to fill out our forms to reapply for PGB.
AWBZ tells me I need to have an indication from them to get special budget. I fill out a form, and they return it to me saying that Bureau Jeugdzorg needs to give me the indication as Ezra is under aged. I fill it out and Bureau Jeugdzorg says CIZ is responsible. I call CIZ and they say AWBZ is responsible for giving me the indication. WTF? So finally I fill out the form, give it to Bureau Jeugdzorg, and they tell me that because Ezra's IQ is so low I have to send it to CIZ. Oh good!

2011
January
After numerous calls to CIZ, I finally get a response around the 10th. I get an extremely unfriendly, defensive person on the phone. She denies my case, saying that because I don't send Ezra to school we have no right to help. I can appeal however within the first six weeks. Hurray! Of course it takes months to process it.
I call International school pleading with them to take Ezra. They again deny him, saying he wouldn't be able to function in a normal classroom setting (and they're right). I call the special needs school central to see if the local special needs school could take Ezra half days or at least give me written proof that I tried to put him in school and was denied. They explain that he first has to go to a normal school for six months so they can find out if he qualifies for normal school with assistance (and by the way, I have a brain scan now proving that Ezra has autism and ADHD?!?!!). How can it possibly take six months to find this out? Honestly! And have I mentioned: he has a speech delay and doesn't speak a lick of Dutch. OK, so I'm promised that they will call me back, which in my experience is equal to: "Don't call me. I'll call you!" So I call them again this morning and this is our conversation. She was in fact very friendly!

M: It will be very difficult to get an indication for Ezra to go to a cluster 4 school

They have normal schools, and then special needs schools: Cluster 1-4. 2 is for communication difficulties, and 4 is for behavior challenges like autism).

M: He wouldn't be able to function in a classroom there because there are too many students. You should put him in Tomteboe for two days a week.
Me: I asked them to do that, but they said it would be too disruptive to their process.
M: They wouldn't be able to do son-rise program with him school.
Me: Yes, I realize that, but CIZ needs me to prove that I've tried putting him in school. I don't think it's the best thing for him, but they're not interested what's best for him, only what fits their definitions.
M: Perhaps you could put him in the International school.
Me: I've tried twice. They said no. We're only here for another 18 months, so I really would rather have him speak English, because he doesn't understand Dutch, and it would delay his speech even further.

M: A.O. from Tomteboe told me he had communication problems. He should try a Cluster 2 school.
Me: You can only get an indication for a cluster 2 school if you have six months reports from a speech therapist which we don't have, because we couldn't find a speech therapist in the Netherlands who speaks English.
M: But coming to a Cluster 4 school wouldn't help his language. They speak Dutch. He wouldn't be able to integrate there.
Me: I KNOW! That's why I'm running a son-rise program at home.
M: OK, how much PGB do you get?
Me: None.
M: What do you mean none?
Me: I mean, the Dutch government specifically CIZ isn't giving me any PGB, because they say I chose to keep him at home.
M: But where can you send him?
Me: Nowhere, that's the point. The only English speaking school in the Netherlands for autistic children is in The Hague and costs 18,000 Euros a year.
M: Can't CIZ give you the money for that to cover it?
Me: Nope, I tried.
M: I'll help you get an indication for a Cluster 4 school.

OH, and the joke of all of this is: guess how much it will cost to send Ezra to a Cluster 4 school if he ever gets the indication? Yup, that's right about 18,000 Euros paid by the same government that is denying me the money that could help me run the most effective program at home! So the moral of this lengthy blog which really was more for my own amusement is: if you have an autistic child and don't intend to have him/her learn Dutch, don't come to the Netherlands.

PS: update. Talked to the Cluster 4 school and apparently Ezra needs an IQ of 80 to go to this school, which he doesn't (at least that you can test). They might make an exception for him, but he couldn't start until he's six years old which is in October. So essentially there isn't anywhere that I can send him to school right now (that we could afford like the private school in The Hague or on the American Airforce base).

How to get a picky eater to eat

This day was so exciting, I have to double blog about it. Check out my Son-Rise blog for Ezra's program here. It was the best day ever.
One thing that made this day so awesome was the fact that for the first time Ezra ate all the food I gave him, including chicken, and salad. Ezra is really food defensive. He's so stubborn and inflexible that he would not even tolerate chicken on his side of the table. Today however was different. Why, you can read on the blog. Here however is what I did specifically to get him to eat.

1. Check my attitude: don't care if he eats it or not. If he wants more of his favorites, he has to eat the others first. I'm not going to fight about it or get upset if he doesn't eat or screams at me. He won't starve. He has enough food to sustain him.
2. I bought a darling little tray with kittens on it.
3. I arranged the food in a visually pleasing way, with at least two favorites (potatoes, and oranges)
4. I bought a bowl in the shape of half an apple for his fruits
5. I put salad in a separate little glass bowl on the tray.
6. When he wanted more potatoes I explained that he had to eat everything else first. I explained why protein was good for his body, and what it would help him do (i.e., it builds your muscles, it helps you feel full), and that vegetables are very good for his stomach
7. I celebrated him once for trying new foods, when he nibbled a bite of the chicken, and then completely ignored him and enjoyed my own food.

He ate the whole thing. It was amazing. And did I mention: he's never done that before.

I just added these pictures. This is not the lunch I was talking about, but nonetheless he ate it.

Rice and Beans is one of Ezra's favorites. Healthy, cheap, and easy! Right up my alley! Notice that the salad looks happy in this picture.

 I told Ezra: look the salad is happy. He giggled and turned the carrot around. Ezra: nope, sad salad, mommy! Touche kiddo.

Things you say to get your kids to eat: (very excited) look it's like green, curly spaghetti