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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: One step forward, two steps back February 25, 2010

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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What was that saying from science class?

Something like “for every action there is an equal and opposite reaction”. Well, I think there’s some real truth in that…especially when applying it to kids with Autism.

Take my kid, for instance.

Every time he has a big break-through in language development, it’s accompanied by an equally big setback in behavior. Seriously, every time one positive gain is noticeable, so is the accompanying glaring setback.

Do you notice that in your kids?

It’s almost like the section of the brain that gets fired up and starts cranking out new language suddenly sucks up all of the brain’s total energy supply so that it can fuel the language burst. Like it steals the energy from the other parts, leaving the part of the brain that’s responsible for behavior depleted and gasping for air.

Leaving me with a little monster… who. won’t. stop. talking.

I’m not complaining about the talking. After all, I repeatedly promised … in countless late night secret bargains with God… that I’d never complain about how much Fabio talked or anything that might someday come out of his mouth  if God would just let him become verbal.  And I am so thankful.

But the frustration over dealing with behaviors resurfacing after you thought they were gone for good can be overwhelming. Why does nearly every milestone have to come with a price tag? Isn’t there ever a win-win?

So, with little choice in the matter, we wait it out. We wait for the balance in the brain to be restored and the energy to flow evenly. We wait for the language to take root and the behaviors to level off.

For we know that when this little maniac transforms back into his more manageable self, he will be one more step further along in his journey from a simple exchange to a conversation.

Autism is like the Olympics February 24, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting.
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The Thrill of Victory…and the Agony of Defeat.

My last post was clearly a thrill of victory one.

This one  is more of an agony of defeat kind.

Been going through a rough patch with Fabio. I recently messed with his diet in one of my very rare attempts to broaden it ever so slightly. Nothing crazy or not permitted. Just some things high in salicylates, which he is kind of sensitive to…so we avoid them for long stretches of time and then periodically attempt to reintroduce them.

That attempt sadly sent my little guy over the cliff just like that Olympic skiier whose famous wipe-out in the 70’s lived on for decades as the “face” of the agony of defeat.

He’s been having trouble in school attending to his work and focusing. He’s been aggressive and often full of rage when the slightest demands are put upon him.

During the never-ending month long week the kids were just off from school, I finally took him to the DAN chiro, who took one look at his eyes and said, “What did you do to his diet?” Then he looked at my eyes, full of tears. All I could blurt out before they ran over was “One of us needs medication.”

Every minute of every day so often, I second-guess myself about the choices we’ve made regarding Fabio’s care. The natural/holistic autism course we’ve taken. But deep down, I think it was right … for us.  Is right, for us. To me, it is more important that we do no harm. Even if the choice means that he doesn’t advance as far, as fast. It’s so easy to imagine that the other road would have lead to a happier place when we hit a bump in the one that we’re on.

So …to continue with my cheesy sports analogies…we’ve decided to stay the course. When the going gets tough, the tough get going …  I’ve removed all of the offending additions from his diet, and finally after a freakin week of insanity am now seeing  my happy little man emerging from the edge of the cliff he’d gone over.

So I’m forced to face that as Fabio’s coach and biggest fan, I can dictate the course of his daily routine and diet, guide him as best I can, and cheer loudly from the sidelines as he works so much harder than the average person, day in and day out. I can triumph in his victories and cry over his setbacks along the way. I can help make him the best that he can be. But there are factors out there that I can not control. All any of us can ask of ourselves …and those we love …is to try our best.

And if he doesn’t get on the podium this year, there is always next time. Training begins hard… again… tomorrow.

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.

Autism Statistics Now 1:100! October 5, 2009

Posted by hopeauthority in Autism, Children, Family, Health, Parenting, special education, special needs.
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There’s many stereotypes and generalizations about autistic kids. Like they don’t handle change well…they like routine…they hate transitions. Well, maybe the apple doesn’t fall far from the tree in this house.

I was on a roll with this blog when my aunt passed away in May. For three and a half months, I found it hard to carve out the time for blogging. It’s not about just posting comments, but also about reading those of others. It’s about sharing and connecting.

My aunt died. My routine was broken. I was unhappy about both. Then a new routine of not blogging set in without me really realizing it. And then that became a hard routine to break.

And so much has happened that was newsworthy in the public eye… as well as in our private life… that caused me to at least think “I gotta get back to my blog!” Yet I didn’t.

I let horror stories go. I didn’t pay proper respects at the loss of Ethel Kennedy Shriver, or of local autism heroes. I’ve been lax in reporting Fabio’s HBOT progress or any of his milestones and challenges. There’s a 100 posts in my head that never made it to the screen.

But today, in Newsday, my local newspaper, an article by Carla K. Johnson, entitled, New study  reveals worrisome autism numbers, jogged me out of my fog and sent me running to the computer:

Two new government studies indicate about 1 in 100 children have autism disorders–higher than a previous U.S. estimate of 1 in 150.

Suddenly, I am moved to write again. But I am speechless. 

Perhaps a moment of silence would be best…

Stroke: Autism’s “Cousin” May 18, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, Health.
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It’s been awhile. My aunt’s stroke has taken me away from the blog partly because of the physical things I need to do for her and partly due to the mental distraction of her situation.

She survived with mental faculties largely intact. Short- and long- term memory are great. Speech is pretty good. No facial drooping. But the right side of her body is essentially paralyzed. Can’t move the arm or leg. She came out of the ICU, off the ventilator. Now stable.

And cursing. A blue streak. (This from a proper woman who never, ever cursed in her life!) She was being starved by a$$holes for God’s sake! And mistreated by these bast@rds! Why, she was going to call her lawyer to start a suit against the whole lot of them morons!

Well, that was the status when I spoke to her last Thursday. So, I had to make the trip to Pennsylvania on Friday to straighten things out.

So, I arrive in under 4 hours, loaded down with dozens of fresh New York bagels and containers of cream cheese for each of the departments who have helped my aunt. Nothing shows your appreciation better than NY bagels!

Needless to say, the so-called bast@rds couldn’t be more accommodating to me…or my aunt. The Director of Nutrition Services came up to go over her dietary wishes in painstaking detail assuring me that nothing undesirable would ever cross her plate again… and that she’d eat plenty.  Her doctor came right in to update me.

Even the priest from her parish had gotten my message and showed up to bless her, which brought her much needed peace.

Then just as I was about to end my 7 hour visit and begin the long drive home, they discharged her from the hospital and moved her to its 9th floor Acute rehab center. Argh! So, I started all over with the new staff…who is wonderful. And a few more hours later, I left her in their competent hands to begin her 3 hours per day, intensive therapy regimen.

As I visited with her, I couldn’t help but think about the parallels between autism and stroke. And it brought me sadness and frustration.

Like my son, she sometimes needed to “search” for the words she wanted to say. You could see from her face that they were in there somewhere and she was frustrated to have to make an effort to retrieve what was always so readily available. She will need speech therapy, like Fabio.

Fabio could certainly benefit from some occupational therapy (OT) for his pitiful little handwriting, but he doesn’t qualify for OT services since his other fine motor skills are stong and bring up his overall score on the eval exam. But how can I complain about his scrawl as I watch my aunt trying to massage the life back into her right hand with her left one? She will need OT to relearn every skill she ever had like writing, washing, dressing, feeding.

Fortunately, Fabio is a wiz when it comes to all things physical. I am ever grateful for this gift as I am aware that many autistic children need quite a bit of physical therapy (PT). For my aunt, intensive PT is the most important therapy of all. She must try to regain the use of her right side if she ever wants to live independently again. She needs to be able to move. Herself. By herself. Safely.

It’s independence or institution.

So, I sat there for hours…at times blankly smiling at my aunt while my mind secretly contemplated all these cosmic similarities between her situation and Fabio’s…and I felt sadness and frustration. And I felt tired from the battle he’s been fighting and from the one she must now take on.

But I spoke to her only of hope… though there is little for a complete recovery.  A complete “recovery”.

And then I thought of my boy. And the similarities.

And I am sad. And frustrated. And tired.

Update June 16,2009:

My aunt passed away on May 23, 2009, which is why I haven’t been posting for some time. Thanks for your support and prayers.

Prayers and Good Thoughts Requested May 9, 2009

Posted by hopeauthority in Autism, Family, grandparenting, Health, religion.
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On April 25th, I wrote a post about my Aunt Angie’s visit. Please read it now, if you haven’t already.

I was a little exasperated by the way she played with Fabio constantly, but in a way that was too “in his face” and therefore frustrating to him at times. She kept trying to connect with him.  I was frustrated at how hard it is to teach someone how to play with an autistic child…and at the fact that playing even has to be taught.

What Fabio really responded to was the way my Aunt Angie just loved him. It was when she would back off that he’d seek her out for hugs or kisses. And I’ll never forget the memory of Fabio climbing into her bed in the morning and her responding by simply … instinctively… covering him up with the blanket and drawing him into her side for a snuggle.

Ten days after she went back home to Pennsylvania, she suffered a massive stroke.

For those who are so inclined, please pray for my aunt’s recovery.

The world can not afford to lose someone like her. Fabio can’t either.

Regression by Strawberry May 2, 2009

Posted by hopeauthority in Autism, autism diet, Children, Health, school, specific carbohydrate diet.
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Gotta love those care-free days of youth and all the fun school projects you do in special ed first grade. You’ve got the non-edible projects with macaroni and glue. And, occasionally, you get the edible ones.

And when your kid is on a totally restrictive special diet from hell , these projects are the ones that make you want to kill somebody. Or kill yourself. Oh, and it’s extra special when you get only one night’s notice about the project…

So the note comes home:

We’re going to be making peanut butter and jelly sandwiches in class tomorrow. Can you send something in so that Fabio can participate?

Unlike the hundred of thousands of kids who’d die from it, it’s not the peanut butter that’s a problem for Fabio.  I have a special organic peanut butter with no additives that he loves.

And it’s not the bread. I make Fabio bread from cashew butter, eggs, baking powder and a pinch of sea salt. 

It’s the freakin jam/jelly that is the challenge.

I’ve been canning jams and jellies for competition for almost 20 years, so thankfully, I have a leg up on most folks in that area. And I can substitute honey for sugar in the recipes. The trouble is the fruit options.

Fabio can eat many fruits, but not the ones that make popular jams. He can’t tolerate berries, grapes, or apples due to their high natural salicylates and/or phenols. And what’s worse is…he loves them. If you put out a bowl of blueberries and a cake, he’d go for the berries every time.

When he eats these fruits, he is in heaven. Until the next day. And the five to ten days thereafter. Yes, you heard me. The effects far outlast how long the food was in his body.

It’s like a Jeckyl and Hyde thing.

He regresses across the board. Total loss of eye contact and any functional language. Very bad behaviors. Repeated tantrums. And it goes on for days! Of course, it’s never worth the moment of pure joy he had while eating the coveted fruit. And yet again…

Still, every 6-12 months a situation will arise when the temptation is too great. When heroic efforts would be needed to avoid the fruit. When just enough time has elapsed since the last time to let me forget how hard those several days of hell are going to be on all of us.

When you think that maybe… just maybe… this time it will be different because maybe… just maybe… he somehow outgrew this allergy.

So I stay up til 2 am making this gorgeous, ruby-red strawberry jam for my little man. And I bake him a fresh loaf of his bread and slice it a bit thicker so he’ll be able to spread on it without ripping. And I packed a little container of his peanut butter. And I crossed my fingers.

Sleepyhead walks in to the kitchen at 7am, sees the jam in his lunchbox, removes the container, and says very nonchalantly: “No thank you.”

Umm… No freakin way!!! I thought. And… with the look of daggers coming from my tired eyes as I replaced the container in the lunchbox… I said through gritted  smiling teeth:

“Mommy made you yummy jelly to make peanut butter and jelly sandwiches today at school.”

“No thanks.”  As he removes it again.

Okay, this is going nowhere. So, I give him a tiny taste. And in one instant a memory awakened inside him. And his green eyes widened. And he smiled. Big.

So he happily went off to school with the promise of more jam in his future. And I met him up there later to give him some enzymes to help him digest the berries. And he came home begging for more PB&J sandwiches…which I gave him… until the small allotted amount of jam was gone. And he was in heaven.

Until the next day when regression set in.

But I’m happy to say that it is less severe than it’s been in the past. He has more language now and has retained it. Eye contact is okay for the most part. The bad behaviors are only evident when demands are placed on him that he doesn’t want to do and even then, not as bad as before.

It gives me hope that my boy will someday be able to enjoy the simple pleasures in life.

Like fresh strawberries in the summer.

And maybe a friend to share them with.

It’s Autism Awareness Month…Yip-pee! April 1, 2009

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Well, its April again.

Already.

I don’t like April.

There’s April showers. April Fools Day (for people who actually have time for pranks and laughter). Allergies. Taxes. A big freakin school vacation to disrupt routines and invite regression and highlight social isolation. Oh, and there’s Autism Awareness Month, of course.

So the whole world will suddenly step up its efforts to be “aware” of autism … for thirty whole days. There will be lots of news articles and Jenny McCarthy sightings, talk shows, and some fundraisers… for thirty whole days.

Good-bye rollover minutes!  I will get copies of every article, plus tons of phone calls reminding me to watch every autism story from everyone who has ever so much as heard of my son having autism… from my Great Aunt Lizzie’s gardener’s nephew to my cousin John the hairdresser’s clients… for thirty days.

I swear, long before the May flowers sprout, I’ll have had my fill of the many “helpful” souls who just show up in April and pass along some autism “news” simply to make themselves feel better. I especially love the ones who tell me about how a special diet may help… Fabio’s only been religiously following one of the most restrictive diets ever made for the past four freakin years. Anyone who has spent more than three hours with my family would know that.  

In fact, there’s only one thing that feels longer than those thirty days in April …it’s the remaining 11 months of the year when the “awareness” fades away and nobody calls… or visits… or helps… or cares.

We don’t need Autism Awareness Month. Or Autism Awareness Day.

We need Autism Awareness Daily. Right Now.

Empathy and Autism March 23, 2009

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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During my recent sickness, Fabio and I shared one of the most beautiful moments.

It was the fourth day of suffering with a headache like none I’ve ever felt. Nothing would relieve the pain. Nothing. Fabio and I were alone in the house, in the den. He on the computer. Me on the nearby couch.

So, I figure he’s engrossed in his game. And in a weak moment, the tears come and I sit there sobbing softly into the arm of the couch. I don’t know how much longer I can take this pain.

Fabio turns around to look at me from his computer chair and sweetly asks: “What’s the problem, Mom?”

I look up, surprised at the inquiry. “Oh, honey, Mommy has a bad headache. My head hurts alot.”

He gets off his chair and walks over to me. He leans in and kisses my forehead gently. Then he steps back and before returning to his computer chair he says/asks: “Happy?”

It was all I could do not to cry even harder…