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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.

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.

An Apple a Day Keeps the Doctor…On Call November 9, 2008

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting, special needs.
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There’s something really wrong with the world when a little boy can be harmed by an apple.

Yes, an apple.

Brief history here: Some people…including my son…are sensitive to can’t tolerate foods that are naturally high in salicylates/phenols. Apples are one of those foods. For most people they’re a food that’s as natural, healthy and as “American wholesome” as it gets. One a day is supposed to keep the doctor away, right?  Well, not exactly…for my son, anyway.

Apples are “legal” on the Specific Carbohydrate Diet he follows, but they have given ‘C’ some grief in the past, so we’ve avoided them for about a year. In a weak moment, and with a special enzyme to help avoid the problems, I gave ‘C’ an apple. What I didn’t realize I needed to do was watch him like a hawk while he ate it. After all, he’s 6 and he’s eaten them before…

In the two seconds that I turned my back to open the front door to an arriving friend… (Isn’t that always the way these tales begin? )… ‘C’ runs over to greet the friend. Does he say “Hi”? No. He was too excited. Instead, ‘C’ held out his hand to show the man his special treat…his treasure. 

His apple… or should I say, the nub that was left of it.  SON OF A B#TCH!!!!!!

There in his hand was the bottom inch of the core. Did he eat the top half? The friggin stem? The little brown pits…which have arsenic in them??!! Panic struck. I tried to get his to throw it all up…until he almost bit off my finger in self-defense.

Quick, call the chiropractor (who treats him for everything). God Bless this man. He is always so calm and reassuring and never makes you feel like the bad mother you feel like you are.

So ‘C’ got his apple…with an activated charcoal “chaser”. Of all the supplements, vitamins and such stuff I’ve had to force into ‘C’, this charcoal was by far the most vile. But the doctor said it’ll absorb everything…not to worry.  And ‘C’ appears no worse for the wear. Thank God.  But me?  Well…

I am glad I listened to that “voice” that said to buy the activated charcoal. Its been knocking around in the very back of the kitchen cabinet where all the vitamins and supplements are stored for several months now.  I  highly recommend every household get some for emergency use. You never know when it’ll save a life…or at least a trip to the doctor or ER.

Hmmm. There’s something very fitting about the thought of Santa stuffing some activated charCOAL in my little devil’s angel’s stocking for being on the shit nice list this year again…

Halloween Should Be National Autism Day! October 31, 2008

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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Why can’t every day be Halloween?

There is just something magical about Halloween. It’s always been my favorite holiday and it’s obvious that ‘C’ inherited that gene. For the past three Halloweens, it’s really been like a witch cast a freakin spell on ‘C’ and made him typical for the day. The whole day. And night.

Any day of the year, if you ask him what we do on Halloween, he will snap out of whatever he is doing and answer “Go trick-or-treating at Carly’s house!” (his sister’s friend). Halloween can… and has… been used to blackmail him into good behavior for at least a week now. He’s been talking about being the Hulk for weeks. He even put on the horrible hard plastic with flimsy elastic band mask…whose eye holes don’t line up.

I let him go to the party at school and I’m happy to say it went well. I’d gotten the teacher’s assurance that she’d be on him like a hawk.  I gave him a precautionary enzyme, because, well, let’s just say I have trust issues…I spent the entire freakin morning preparing brand new recipes so he’d have new treats there which would be “legal” on the Specific Carbohydrate Diet.

I found and modified some recipes on the pecanbread website and made him pumpkin-shaped pressed cookies (which I cursed because as they baked and puffed up, the shape looked more like a circle than a pumpkin). So I rolled them and cut them into ghost cookies with raisin eyes and mouths (which I also cursed since I had to keep re-freezing the dough). Then I made mini cupcakes with fake fluff-like frosting in Halloween liners. And I caved in and let him have some blueberries since the enzyme is designed to help him with the phenols/salicylates in the berries and the raisins. Blueberries are his favorite food in the world. They just don’t love him back… Because all the kids were given Clay’s treats too, he didn’t seem so different and he didn’t cry… despite not having those glowing orange cheetos on his plate.

He was so excited to go trick-or-treating after school. We did our neighborhood first then went to Carly’s. All this language came out of nowhere. Mr. Chatty all day.  Mr. Manners too. Lots of unprompted “thank you”s as he left each doorstep (of course, whenever they opened the door he’d state excitedly “I want some!”)  He’d be the first to get to each door out of the pack of 10 kids…so he could ring the doorbell.. one of his favorite old stims. It makes me laugh now to think back on the behavior plans we’d make to get ‘C’ to stop ringing doorbells and opening/closing doors. And then Halloween would come and undo all that work.

Each year on Halloween, ‘C’ gets better at the whole thing. This was the first year ‘C’ didn’t even try to get into someone’s house! (Last year, he made it into 2 houses despite one of us being right there on him!) Talk about progress. He is always the youngest, and the last one standing, and would keep going til midnight if we let him. He is so good about not being able to eat any of his candy–ever–because he never sees anyone else eating theirs. All he knows is that the fun is in the collecting!  He could barely stay awake for his bath tonight. My tub will never be the same…black hair spray and green face makeup. Yikes!

I don’t know if it’s simply that Halloween is a night for craziness, for acting up, for packs of kids running wild in the streets and that’s why ‘C’ fits in so well. Maybe… as the harvest moon shines overhead… the typical kids take a step onto the spectrum with their behavior and ‘C’ takes a step off the spectrum with his… so the gap between the two worlds seems to close for 24 hours?  Does the anonymity of the costume factor in somehow…Is he just not ‘C’ because, well, he’s not ‘C’ on Halloween (i.e. he’s the Hulk)? Did he think in that smart little head of his, “Hey, I’m the Hulk. I’d better get my friggin act together!”? 

Well, whatever is behind the magical transformation of ‘C’ every Halloween, I’m always sad to see it go. Especially since it leaves behind a mountain of candy just waiting to glue itself to my ass. 

So if anyone knows the witch responsible for this spell, please let her know that my soul is indeed for sale. All I ask in return is that it be Halloween every day… Oh, and that all the homes give out MaryJanes.