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Autism Diet Challenge: Just Try It! March 1, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting, specific carbohydrate diet.
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Right off the bat I want to warn you that I am sticking my neck out here in an effort to save the world, instead of  just worrying about helping my own son. And I’m sure someone is going to make me regret that I did, but I’m going for it so I can sleep at night…

Ok. I try to be open-minded, and I love a good debate. And I really try to be respectful of other people’s opinions when they differ from mine.

But if I’m being truly honest with myself, I need to face this one pet peeve I have that sort of deviates from what I just said.

I can’t for the life of me understand why parents won’t at least TRY an autism diet to see if it would help their child!

Let’s examine some top reasons why people won’t try it:

1. There’s no proof it works, and recently, there have been reports that say it doesn’t.

To that I say: Not everything, especially something like the implementation of a diet and it’s affect on behavior, can be adequately tested in a study. Is there anyone out there who wouldn’t trust their own gut and eyes over a medical report? Let’s not forget how many decades the government and medical establishment let us go on thinking cigarettes weren’t harmful…

2. It’s too expensive.

Yes, it is more expensive in the sense that you will spend more money on food for a special diet than a mainstream diet… unless of course your regular diet is one of take-out food. But, if your child felt better and behaved better, wouldn’t that be worth the cost? Maybe you’d offset the diet’s cost with the money you might save on other treatments that may now not be needed.

3. It’s too hard to do.

It is hard, at first. And at times, like parties and holidays. But parties and holidays with a wild child are hard too. What if the diet helped your child and you and he could enjoy the party for a change? In time, the diet  just becomes a part of life and that’s how you’d have to look at it. Look at it as a lifestyle choice, not a diet. Otherwise, like all diets, it’ll be doomed to fail. 

4. I can’t imagine “doing this to him” for his whole life!

First of all, take small steps. Tell yourself you’ll just give it a real try for 30 days. And then give it a real, honest try. Even when it’s difficult. And it will be hard at first…especially if it is working! No cheating. You will know in 30 days if there’s some noticeable improvement in your child. And when you see that change, that is where the strength to continue the diet comes from. And support groups online. For me, I saw improvements in my son within 2 weeks, but it took about 18 months on the diet before his gut healed enough that he finally had a formed stool…just days before his scheduled colonoscopy and endoscopy, thank God.

In my son’s case, we were fortunate enough to have very specialized labwork done through an autism study he was involved in (lab work you can’t just order from a local lab) and we KNOW he has some mutations and can not digest the proteins in certain foods. In fact, his body breaks them down into harmful opiates, which, when released into the bloodstream, travel to the brain and contribute to the autistic behaviors. For me, feeding him the typical American diet is like feeding him poison. What if your child has that kind of mutation, but you don’t know it?

5. He won’t eat that food. He’s picky.

Okay, who is the parent here? This is the time to get tough.  And the earlier you implement a diet, the easier it is to do. My son was just turning 3 and you have more control at a younger age. Plus the diet will be well established by the time he starts school and he won’t even remember McDonald’s nuggets, so he won’t long for them, though he may be curious about them.

Think of those processed foods as the enemy. Most kids are picky eaters. It’s in your hands whether you are going to let your kid’s chosen 4 favorites be healthy ones or not. If you stick to your guns, your child will eventually give in since his survival instinct will make him eat this way if that’s all you offer. Plus, some kids are actually addicted to foods their bodies are craving because bacteria in their guts need those foods to live. If that’s the case in your child, you need to break that cycle by depriving the bacteria from feeding. You do that by eating differently. You starve the bacteria and they die. And the gut heals.

6. It’s not healthy.

Come on. How balanced do you think the typical American diet of chicken nuggets, hot dogs and pizza is? With so many children becoming obese and diabetic, these diets are actually a gift of health that you can give to your child.

Even adults would do well on this diet. The Specific Carbohydrate Diet that my son is on has been helping celiacs, Crohns and IBS patients for over 50 years. Have you noticed how middle aged folks are suddenly unable to tolerate dairy or gluten? I’ve been told it’s because our bodies haven’t evolved fast enough to keep up with the processing of the foods we eat today. We so-called healthy people can’t break down these chemically-processed foods. How can our children then?

Under the supervision of a medical professional and with the proper nutritional supplementation if needed, these diets can resolve intestinal and digestive problems that you may not even realize your child is suffering from. Don’t you want to feed your child a diet that makes him or her feel their best?

7. My child doesn’t have any food allergies or sensitivites so he doesn’t need the diet.

Maybe. Maybe not. A doctor can give a diagnosis. But a mother’s instinct says a lot, too… if she knows what to look for. Does your child have any of the red flag signs of an allergy or sensitivity…such as red cheeks, skin rashes/eczema, dark or reddish circles under their eyes? Maybe constipation or diahhrea? Does he eat certain few foods to the exclusion of most others…almost like an addict? Can’t sleep at night?

8. I don’t know where to start.

First, find a doctor who supports autism diets. A recommendation from a friend is best, but failing that, look for a DAN (Defeat Autism Now) doctor or chiropractor. Allergists and immunologists with autism practices may be able to help you. Some, but few, pediatricians may too. Be sure they have experience with autism diets.

Do some research. There’s a few different diets out there. The best one (in my opinion only) is the Specific Carbohydrate Diet  my son has been on for 5 years and you can learn all about it by reading the fascinating book Breaking the Vicious Cycle by Elaine Gottschall. SCD is like GF/CF to the extreme since it allows no grain at all and my challenge is to try this diet for 30 days if you think you can handle it! (For more info, see the Autism Diet Help tab in this blog). But there’s also regular GF/CF (gluten free/casein free) diets and the Feingold Diet.

****I’ve always been an advocate of therapies that may improve the lives of our autistic children …so long as they do not have the potential for harm. These diets are healthy ways of eating for anyone. There is no harm if a doctor is on board with any nutritional supplementation. It may not make any difference in your child’s behavior, but it won’t hurt him or you to try it. 

But what if it helps him? What if it even recovers him?

Can you live with yourself if you didn’t take that chance? It could be the simplest of answers. Just 30 days to see if it may help. You don’t need Jenny McCarthy or me to tell you. You will know if it’s helping. And if it’s not, go off it with the peace of mind of knowing you gave it a real try, instead of living with the nagging wonder if you should do it.

By April 1st, those persistent red cheeks and shiners could be gone. Maybe even some language. Please trust me and just try it. And come back and let me know how it went!

What has your experience been with autism diets? I want the good, the bad, and the ugly…

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Autism and the Nursery Witch October 19, 2009

Posted by hopeauthority in Autism, Children, Family, Health, special needs.
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No sooner did I wrap my mind around the first article with the big jump in autism stats…1 in 100 instead of 1 in 150…but right on it’s heels comes the latest figures. 1 in 91.

1 in 91.

Anyone else feeling sick?

It brings a recurrent and ridiculous vision to my mind.  I am standing outside the glass of an insanely large maternity ward, looking in at rows and rows of newborns… with their cute smooshed faces and their arms tightly tucked into their cocoon-like wraps. Soft little beanies of pink and blue atop misshapen little heads. There’s about 100 of them all lined up. Or should I say 91 of them.

And like some sick, twisted fairy tale, there’s a witch hovering over one of those beanies…a blue one… casting a frightening spell that will manifest itself in about 18-22 months, upon the happening of a certain event.

I want to shoo the witch away, but I am too late. I want to hear what she is chanting, but the glass is too thick. I need to know what will trigger the spell to come to pass.  Some environmental toxin? Some vaccine? Some seemingly safe food that wreaks havoc on the digestive and immune systems…not too far off from the poison apple?

There are still days that I can’t believe that my blue beanie was the one.

I remember shortly after Fabio was diagnosed 5 1/2 years ago…before I told anyone but the closest  family and friends… I was at a carnival and spotted a woman with a boy about 5 years old. She wore a tee shirt with all the stats about autism on its back dating  from the time it was 1 in 10,000 until the present. At that time, the most recent stats were 1 in 250.  It cryptically stated: “Your child could be next”.  I could not take my eyes off her, her child, or her shirt.

Back then, I was haunted by that shirt and so worried about my son’s future. I still worry about his future…every day as a matter of fact. But the idea that the numbers of children being diagnosed with ASD are rising too quickly to even make up such a tee shirt…now that’s a scary thing. 

At this rate, it’ll be 1 in 75 by Christmas.

Someone really needs to kill that nursery witch. Fast. The survival of all our beanies depends on it.

100 Days of School February 9, 2009

Posted by hopeauthority in Autism, autism diet, Parenting.
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So, this week we celebrate the 100th Day of School. Around here, it’s a big deal, but …thankfully… it is only celebrated by the first graders. (I know there’s other states that have each grade celebrate it each year.)

When my typical daughter had to do her project, we did this pretty fancy thing involving painting a wooden plaque, screwing 4 hooks into it, threading 25 colorful beads onto 4 wires (100 beads), attaching the strands to the hooks, and placing sticker-letters on the plaque proclaiming her name and the school name and “100 days of school”.

Tonight’s project with Fabio was simply to glue 100 things onto the big piece of construction paper the teacher provided with a big “100” in the center. Easy, right? Well…

First I made the mistake of taking Fabio to the craft store to pick out what he wanted to glue on. I had already decided on those foam stickers that you just peel the back off and they stick on anything. If I had to deal with glue for 100 items, I’d surely have passed out from the fumes…

So, Fabio was a pain in the butt in the craft store. It didn’t help that I had a return to do there first and the clerk was slow as molasses.  Fabio’s rarely good in the stores. Which is why I rarely bring him. Which is why he isn’t good there. Vicious circle.

So we grab the foamies and get home and get started.

By the time we got to about 40 items, I was losing him. And we had 60 to go. Lots and lots of re-directing later, and the masterpiece is done! It’s covered with fish, alligators, turtles, frogs, dolphins, penguins and lots of stars!

The thing I hate more about the 100th day of school celebration than the project is the traditional McDonald’s Happy Meal party they are having in Fabio’s class to celebrate on Thursday. ARGH!

The form came home last week requesting $4 if you are participating. Fabio can’t eat anything that I don’t make for him…so McDonald’s is OUT. But how do I handle this? I can’t have him eat his regular food when his class is all eating happy meals. Do I keep him home?

So here’s what I came up with. On Thursday, Fabio will have a happy meal…sort of. I bought one this weekend and kept the McNugget container, the cup/lid/straw, the apple dippers bag, the happy meal bag, the boy toy. I will make him nuggets for the teacher to heat up and sneak into this container, a peeled and sliced fresh apple to sneak into the apple dippers bag, his own juice to put in the cup. His meal will look like the others. I think it’ll work.

Its times like this that it’s so hard to have a kid on the spectrum on a diet.

New Autism Diet: GF/CF… and B/F? January 8, 2009

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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People think I’m crazy. They do.

When I explain the diet that ‘C’ has been on for almost 4 years…the Specific Carbohydrate Diet…I always get that same slack-jawed, glazed-over look. It is because SCD is like GF/CF on steroids!

He has no gluten…in fact, the has NO GRAIN AT ALL. No dairy. No sugars…in fact, no sweetner of any kind except honey. No yeast, soy, corn, flavors, colors, dyes, preservatives, yada yada. Nothin. Surprisingly, he can have nuts and eggs. But he can’t tolerate legal SCD foods which are naturally high in phenols and salicylates either.  It’s a bitch. But it’s worth it.

But this post is not about that… Its about Delthia Ricks’ article on page A4 in Newsday yesterday.

Are you wondering what “BF” stands for?

It’s for Bug Free… BUG FREE! (Yes, I just said freakin BUG FREE!)

Would you believe that food manufacturers are allowed to use bug-based dyes in our food, drink, and cosmetics and merely label the dyes as “artificial color” or “color added”!  Better think twice before guzzling that ruby-colored grapefruit beverage you love for breakfast. Or feeding your kid some popular brands of yogurt.  Or even kissing your mother with that mouth.

Apparently, it will take another two years before the food industry will be required to disclose on its ingredients labels an extract made from the crushed wingless beetle-like creature known as a cochineal. Two more years.

Now, I consider myself to be a pretty damn savvy label reader. And my gut can withstand the most fiery, spicy food. But the thought that we have been allowed to consume pulverized bugs …and that we’ve unwittingly fed them to our potentially immune-challenged children…is enough to make me toss my tacos.

Really….Would anyone KNOWINGLY ingest bugs? I bet the people who make that stuff don’t eat their own products! And it has no nutritional value.  It just provides lovely shades of red, pink, orange and purple to your food and cosmetics.

But it gets worse. The Center for Science in the Public Interest petitioned the FDA in July 1998 to create a new labeling rule regarding this bug use because some people had suffered severe…even life-threatening… allergic reactions after consuming or using products containing the bug-based dyes!

11 YEARS of potentially life-threatening allergic reactions… well, make it 13 by the time the new law takes effect. WTF?!

Some companies already list the dye, but not using words that would be a red-flag…or a Black Flag!… to the average label reader who doesn’t have a bug-ology degree. So here’s what you need to watch out for if you want to avoid consuming dead bugs:

  • carmine
  • cochineal
  • E-120

Is it any wonder that people are starting to consider that in some children there may be a link between autism and diet? Do we really need to color our food or our lips with crushed Peruvian beetles?

And most scarily, what other petitions about other dangers impacting our autistic kids are sitting around in the FDA…that we won’t learn about for another 11 years?

It makes my skin crawl.

Oh wait…it was just a Peruvian cochineal.

Autism Birthday Party From Hell December 4, 2008

Posted by hopeauthority in Autism, autism diet, Children, Parenting, school, special needs, specific carbohydrate diet.
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About two weeks ago, my son went to the best birthday party ever. Last night, he went to the worst birthday party ever. Ever. Um, did I happen to mention EVER?

Warning: This post is a rant.

I wasn’t going to let him go because it was so inconvenient to work it out for 4:45 on a weeknight, but I felt guilty since it was a boy from his class.  I don’t know the mom, having only met her once…at open school night. I should add that she has a reputation for being very openly anti-school district and has a lawsuit pending over her son’s placement.

I didn’t want my son to miss a chance to have a social outing with his peers, especially at this cool, new indoor inflatables place I’d heard great things about.  So I moved heaven and earth, called in favors, and got to the party…only to find that only one other boy from the class came. But there were plenty of other special needs kids there who were noticeably older and larger than my son. That’s great, I thought. A nice group of like-minded parents.

Boy was I wrong! I never felt so unwelcome and out of place at a party in my life. And as we all know, there are many parties where we can feel out of place. I was wrong to assume that a special needs party would be a safe haven.

So, imagine a giant inflatable double slide reaching right up to the ceiling…about 20 feet high… and having a narrow “staircase” sandwiched between the two slides, which is actually more like a 24 inch wide path with vinyl-covered, built-in 2×4’s as “steps” and durable straps on each side as “railings” to pull yourself up with.

Now, imagine … cajoling your painfully shy and anxious son to try something… ANYTHING… out of the five different inflatable options… sometime before the freakin party is over…  Then, having to coax him and follow him up said staircase from hell without looking like a total doofus and then sliding down it with his little butt crammed ever so snugly in your crotch. Now repeat. Four times. Finally, courage emerges and he goes solo. Life is good.

Enter, Little JackAss.

Out of nowhere, this huge boy of about 10, lunges up the staircase where my son …just behind his 2 friends… is about halfway up.  Little JackAss reaches ‘C’ and doesn’t push past him as I was expecting. Oh, no. Instead, he proceeds to violently push and shove ‘C’ down the staircase! ‘C’ is telling him “Stop that!”, and is holding on to the straps for dear life and looking down to me.

In an instant that felt like an hour and in what I imagine as one of those slow motion movie scenes, I leapt…yes, I can apparently leap when need be… to his defense and was on Little JackAss in a flash, bellowing for him to “Get your hands off of him!” I remember thinking all the while, Where the hell is this kid’s mother?!  Then, from somewhere down below comes the shrill, loud voice of Mother JackAss “Timothy! Keep going up. Right now. You go up. Go!”

Are you friggin kidding me?! That was all? No “Timothy, don’t do that”? No “Timmy, say you’re sorry to that boy”‘? Not even a Mother Jackass-to-Mother  “I’m sorry”? Nope…not a peep.  He made another kid cry 2 minutes later. Same lack of response from  Mother Jackass.

Then as soon as my heart rate went back to normal and I was able to convince my son that it was safe to try the slide again, Party Hostess Mom (who is one of those moms who puts herself before her kid: painted face, big 80’s hair, gym rat) comes over and her first words EVER of conversation to me are (add major negative attitude to the tone): “So, are you happy with how things are this year?” Ever the diplomat, I say that there’s stuff I like and some stuff I don’t.  She actually scoffed at my answer.  (I thought scoffing went out of style with the colonies…)  She can’t let it rest…she proceeds to interrogate me as to why ‘C’ doesn’t have home hours (“the district lies about it only being for academics”), and “Oh, he can talk?” and “Oh, he has extracurricular activities?” Finally, I had been pushed to the point of saying, “Look you don’t even know my son at all. He’s doing very well and we’re happy with his placement and his social activities.” So she walks off in her skin tight gym suit, clearly unsatisfied.

The last offense comes in the party room. Due to ‘C’s special diet, I made him chicken fingers and watermelon and a bottle of water and 2 special cupcakes to replace the pizza and soda and ice-cream cake being served. I’d give my right arm if he could eat those things, but sadly he can’t.

When I took out his food, all eyes were on us like I’d committed some grievious offense. Like I thought he was too good for pizza or something. It was so uncomfortable. We moved on to the cupcake faster than I’d planned just to keep peace and when I took it out, the Hostess Mom asks if its GF. So…thinking she really cared… I briefly explained that it was and it was also CF, SF and grain free and that ‘C’ had some serious dietary issues and unfortunately can’t eat anything that I don’t make from scratch. Up goes the painted-on eyebrow…

Instead of understanding, she says…again with the attitude…”Oh, I thought about doing the GF diet, but I really don’t think it works. Do you really think it works?” Now, these words…without an attitude… are welcome to me as I am happy to explain the diet and how its helped ‘C’ so much over the almost 4 years he’s been on it to anyone who really wants the info.

But when the query is not a positive and genuine request for information, but rather merely a venomous comment from a selfish and ignorant woman… who just got on my last nerve… my attitude changes…

“Well, SINCE YOU ASKED, yes I KNOW its worked for ‘C’ . He continues to make great strides and is so much healthier than he used to be. He sleeps well at night and can pay attention at school.  The diet is not for every child, of course. But… SINCE YOU ASKED… I am SURE it’d help ‘D’. By the look of his red cheeks and dark eye circles, he most definately has a food allergy.”

ZING!  Now go home and sleep with that guilt.

Sorry, I just had to rant. I can handle anyone who is honestly trying their best to help their child. I never preach to people about the diet or any other therapies we’ve tried with ‘C’, and only give advice when asked. Even when I believe strongly that a child looks or behaves like they may have a food allergy, I bite my tongue. I like to think that we all try to make the best decisions for our children.

My only gripe is with the people who put themselves and their needs before their children…especially the loud mouth ones who always have excuses not to try something that may benefit their child and who always blame everyone and everything else for why their child is not progressing.

And a sad note to close on was near the end of the party, when the birthday boy sat next to me and touched my face (touching people’s faces is a stim of his). I turned to him and said warmly and with a big smile “Hey, ‘D’, are you having fun at your birthday party. ‘C’ had a great time!” He smiled back at me. Then I look up at the woman standing on the other side of him (not his mom) and, looking at me like I am a child molester, she asks meanly right in front of  the birthday boy “Do you really think he even knows who you are? How does he know you ?”

Again amazed, I said “Well, yes, I do think he knows who I am. My son is in his class and I was just at the Thanksgiving feast in the classroom last week. So, yes I do think he remembers me.” And I looked back to ‘D’ with a smile. And he touched my face again.

Sometimes, there’s just too many JackAsses in the world.

Green M&Ms Make Me…Angry September 19, 2008

Posted by hopeauthority in Autism, autism diet, Health, specific carbohydrate diet, Uncategorized.
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Argh! Another dietary infraction at school. It seems ‘C’ got an M&M…from the floor, no less! And here’s the ironic thing… when the school nurse called my cell to tell me about it, I was eating breakfast with some of the moms from his class. And one of them sent in M&Ms that morning.

This mom is a new friend of mine. A few of us formed a breakfast club of sorts, meeting for french toast, bacon and support every Thursday morning at the diner. (Don’t know why we didn’t start this club up last year, but I guess we just had to get used to our own transitions to kindergarten.)

These women are already so important to me. We not only have parenting an autistic child in common, but our kids share the same teacher. Our shared experiences really empower us. We are becoming our own little “force” to be reckoned with. A little like “Don’t mess with the kids in class 1-5”. Wait til we join the SEPTA team next week!

So, the M&M thing really set me off… especially coming right on the heels of the “raisin incident”. And mostly because it set ‘C’ off–literally. It had chocolate, dairy, sugars, and artificial color/dye, just to name a few of the offensive parts. Who wouldn’t want one? Especially a little boy. Or the little girl who was the intended recipient of the candy.  In fact, I know several people who can’t push themselves away from a bowl of them. (Of course, they are my husband’s family and that’s a whole other post…)

So ‘C’ is not his usual self now. And how long that will last remains to be seen. (Bananas do him in for 10 days.) The regular ‘C’ is gone… replaced by a boy who waffles between maniacal laughter and bouts of sudden crying and sadness. He squeeks out “feel better”, but can’t tell me what hurts. His verbals are down.  He peed a little in his pants because he is not as focused. He peed a little in the tub for the first time in his life.  He’s even limping a little, but he didn’t injure himself. And so we wait…

So I’m mad about it all. Not at my friend. After all, she sent them in as a reinforcer to motivate her child. If ‘C’ didn’t have these diet issues, I can’t say I wouldn’t have sent them in for him, too. Though I do wish the kids, who are all advanced enough in age and skill, would all just move on to non-edible reinforcers, like stickers, playgound or computer time, or something similar and a little more toward mainstreaming. No one would argue that most kids would be better off without candy-especially in the morning.  (Of course I’ve always been put off by the food reinforcers, even when used on ‘C’ as a toddler. They always made me feel like ABA was dog-training. “Do this trick, and here’s your treat”)…

I am mad ‘C’ can’t have M&Ms. I’m mad other kids can–and do–in front of him. I’m mad that they are always at my husband’s family’s functions. I’m even mad at myself for eating them when ‘C’ is not around.

So, I guess green M&Ms make me mad. And to all of you out there with your minds in the gutter… they certainly don’t make me horny. What’s that  anyway?  Anyone remember?