jump to navigation

Autism and the Teenager March 17, 2015

Posted by hopeauthority in Autism, autism activities, autism diet, autism teen, humor, Parenting, special needs, specific carbohydrate diet.
Tags: , , ,
4 comments

He turned 13 this week. A teenager now.

Oh My God. How did this happen?

On one hand, I feel like it was yesterday when he was born, then diagnosed at almost 2. Maybe the fact that his autism had us locked into the “terrible twos” for ten years has something to do with my disbelief that my little man is now a teen. Yet on the other hand, I feel like I’m 102 and I can’t remember life before autism.

I had to laugh at all the Facebook friends who saw the birthday post that I have a teen… and started warning me to go out and buy hair color now. Hello? “Now”? “Now”, you say? Where have you been? Honey, I’ve been Clairol’s best customer for this whole 11 year ride. (Of course, I’ve been known to sport that gray “skunk stripe” more times than I’d like to recall when I didn’t have the time to get to the salon.)

Anyway, autism has grayed me, and aged me. And the teenage years to come scare me.

The hormones kicked in about a year ago, along with the teenage angst and the mustache. How is it that the kid has a mustache at 12 anyway? Seventh grade seems young to me for that. My boy. He is so gorgeous with his green eyes, slim build, long hair and ready smile. He could model…if only he could sit still and focus long enough.

I worry about his attraction to girls and their attraction to him. I see heartbreak and frustration coming. He isn’t “typical” enough for a relationship yet. Maybe someday. But he desperately wants to make connections and is trying so hard, though he lacks the conversational skills. His life-long desire to hug everyone, once cute, is getting awkward now as he grows to an already 5’4′ tall. Language is the one thing, no, the biggest thing, that prevents him from the breakthrough we all feel is right on the other side of that invisible wall.

He’s come so far though. I never thought he’d talk when he was first diagnosed. And while I can’t really yet imagine it, I am hopeful he will live a somewhat independent life someday. He takes dance and piano and acting lessons. He plays basketball, baseball and lacrosse on special needs teams. And in one of the greatest feats ever: He sang a two minute song…Do you Hear the People Sing from Les Miserables!…all alone with only an instrumental accompaniment while competing in a suit and tie in a local pageant on the stage of a large community theater. Massive accomplishment. Yet, he can’t hold a conversation.

You know what? Conversation is overrated. Today is a day to celebrate how far my wonderful teenager has come. And how bright his future will be. How bright all their futures will be.

* * * * * * * * * * *** * * * *

Brag on: What has your child accomplished that you never thought he/she would? Or what do you fear your child will never accomplish?

Advertisements

Finding Time to Blog on Autism May 21, 2013

Posted by hopeauthority in Autism, autism diet, Children, humor, Parenting, special education, special needs, specific carbohydrate diet.
Tags: , , , , , , , , ,
add a comment

your-are-late

Oh. My. God.

I am so sorry… and so stoked… at the same time.

I don’t have to tell you why I fell off the blog bandwagon because you “get it”. Autism gets in the way of so many things. Including blogging.

Days fly by. Then weeks and years follow. And before you know it, your little “Fabio” is 11 and ready to graduate fifth grade and go to Middle School next year.  I simply can’t believe the time has passed. And yet I look so young. Not!

I’m not sure if any of my original followers are still out there, but I’d love to hear if you are and to catch up on how your not-so-little ones are doing!

The good news is that I’ve tried many new things for my little man and will be able to share that all with you. He is still on the SCD (Specific Carbohydrate Diet) and that’s 8 years now! I never thought I could keep up this maniacal pace of cooking and baking everything he eats for so long now. But I have. With the popularity of Paleo and Primal diets, SCD is easier than ever as many of those recipes fit SCD or can easily be adapted to comply.

I am looking forward to being here more often. You see, I blog for a living for some really wonderful doctors (part of what makes it hard to blog for pleasure). But here, I only have you guys to answer to, and I don’t have to weigh Every. Single. Word. I can just let it spill from the heart. Or from the gut. Whatever it happens to be that day. Uncensored “stim talk”.

Before I dive in, are there any questions? Any issues you’re having I can help with?

I can’t wait to start sharing all the funny things, the inspiring things, the ugly things…come on, it’s real autism here not the sugar-coated version. Also, there are the therapies like NAET, Braincore and HBOT. And the school and extracurricular stories. And the cursing…

Puberty is coming. Lord, help me.

It’ll be a blast. I promise.

* * * * * * * * * * * * * * ***

Who are you? Tell me about your little one.

 

Autism and the Holy Communion April 16, 2011

Posted by hopeauthority in Autism, autism diet, humor, religion, special education, special needs.
Tags: , , , ,
5 comments

It was a tough year of religious education with “C”. Many cold and snowy Saturday mornings. Many bouts of his OCD with the doors making me crazy. One sweet old doormat lady 1:1 volunteer who was totally useless ill-prepared for working with an autistic kid.

There are 3 special ed boys making their communion this year out of the class of 12 kids. Because of his many food allergies, there would be gluten free Jesus on the big day! Thank God…I thought I’d have to make my own Jesus and have to admit I wouldn’t know where to begin.

Out of all these kids, mine is the only one known to the parish priests. No, not because I was a good Catholic who brought him to Church every week so he’d get used to it. I didn’t. I was weak. I caved to the public “skunk eye” pressure after one incident where he threw up down my back after a crying fit at Mass as a toddler. Yes, you can get the skunk eye in Church.

They know me, my husband, and our son because our daughter has attended the parish school for 8 years. And since I am one of those parents who volunteers for everything up at the school, they know us well. Which makes the following tale even harder to tell.

Cut to the Communion rehearsals.

The doormat, bless her heart, has no control over “C”. (He immediately sized her up last fall and zeroed in on her weaknesses. She was doomed.) I decide not to intervene to see if she could guide him through this rehearsal. Big mistake.

You see, “C” is obsessed with doors, so just getting him to walk into the church (instead of repeatedly opening and closing the big glass entry doors) is tough. Of course, if you blow that, you’re sunk and he will spiral into a fit of non-compliance. The other problem is that his sister acts in local community theater, so to him, the altar’s raised, 4-step platform is just a big stage calling to him. Loudly. And he can’t pass a stage. Not without bowing, anyway.

So, he breaks away and goes up on the altar! He is taking a bow to imaginary applause. He is even holding his arm up and out behind him, like stage actors do to give props to the pit orchestra. Just great…

Now it becomes apparent that I have to go get him down. As I head toward him with the look of death a serious face, he runs behind the altar and, looking up at the 80 foot tall crucifix hanging above him, blurts out “SUM OF A B-I-I-I-I-T-T-C-H”.

Could you freakin die? Seriously.

And I’m standing up there asking myself what the hell I was thinking putting myself him through this sacrament. Sure it’s funny now. It really is.  I have my own issues with God and the “why my son?” thing. So why is it that this Communion is so important to me, I wondered, while dragging my holy terror off the altar in a headlock.

The second rehearsal was more of the same. With a sprinkling of him declaring to the congregation “Face it. I’m just not good in church!” Ugh.

So when Communion day arrived, I was a wreck. I’d warned the handful of family and close friends (who still don’t really get it) of how bad it could be, in the custom invitation I’d sent out. I worried big time about the fancy navy blue suit, crisp white dress shirt, and (gasp!) tie and (another gasp!) dress shoes. He is, after all, a kid who can (and does) undress himself in 5 seconds or less, every chance he gets. I envisioned him coming down the aisle barefoot,  in his wifebeater undershirt. I also worried he’d spit out the “church food” as he called it. Yep. Church food.

Turns out, he made a fool out of me. Walked down the aisle like a GQ model down a runway. I mean, he really worked it. He sat through the whole four hour Mass like an angel. And when it was time to receive his gluten free Jesus, he was precious. Took a couple little bites and swallowed hard like they were stuck in his throat. I had his shoulder in the Vulcan death grip the whole time, but his curiosity over the church food trumped the appeal of the stage. Take that, you Skunk Eyes.

God truly has a sense of humor.

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

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting, specific carbohydrate diet.
Tags: , , , , , , , , , , , ,
1 comment so far

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…

Autism is like the Olympics February 24, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting.
Tags: , , , , , , , ,
add a comment

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.
Tags: , , , , , , , , , , ,
1 comment so far

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.

Drop Those Peeps You Pesky Wabbit! April 12, 2009

Posted by hopeauthority in Autism, autism diet, Children, Parenting, special needs.
Tags: , , , , , ,
3 comments

Ahh. Autism and Easter.

It’s hard enough to deal with the regular holiday stresses, and the challenge of the stiff clothes. When there’s a special needs kid in the house on a restrictive diet… like Fabio and his Specific Carbohydrate Diet… life is just that much more challenging on a day like Easter.

Sure I’ve done my share of almost heroic attempts at making a homemade candy or confection that is legal on this diet. Sometimes, they are even edible. Sort of.  But, I’ve burnt gallons of honey along the way too. I’ve made lollipops and marshmallows from scratch. I’ve made animal crackers, painstakingly cut into mini-animal shapes.  But Fabio never eats any of these things. Maybe it’s a texture thing. Maybe they just suck.

In any event, we have become a candy-free Easter house. And we like it. We have our own traditions that work for us and keep things stress-free. Well, you know what I mean…

“The Rabbit” …as my mom always referred to the Easter Bunny… always brought me stuff in an interesting, reusable container of sorts…but NEVER a basket. Things like a kiddie plastic wheelbarrow or, when I was older, those funky round holders for your stacks of 45 vinyl records…Oh my God, I am ancient!  (It’s true, the first time I saw a microwave was in college… and it took up that rich kid’s whole closet.)  Anyway, the tradition of “no baskets” continues in our home.

Daughter’s computer game and theater tickets and small trinkets are beautifully held by a funky painter’s style cap she can wear later. Fabio’s got a CARS pail full of garden tools, CARS die cast cars he’s been asking for, kooky pens, and a computer game he’ll love. No one will miss the basket… or the candy. 

The egg hunt for plastic eggs filled with coins, stickers, tattoos, and trinkets of the non-candy variety is yet another great tradition that we’ve gently tweaked to be sweet-free, but still fun.

I do confess that while shopping today, I bought a Lindt chocolate bunny specifically because 10 cents of my purchase (never mind that that one bunny came to freakin $8.00…) was being donated to autism research. It’s a win-win-win, right? Lindt gets $7.90. Autism gets 10 cents. I get another two pounds heavier. Can you say sarcasm? I don’t mean to sound like an ingrate, or to look a gift horse in the mouth, but can’t Lindt do a little better than one dime out of $8.00? Fine. I’ll be quiet now. In fact, you won’t get a “peep” out of me…literally!

So I am wishing you all a Happy Easter. One free of sugar rushes and allergic reactions to colors and dyes and other candy ingredients…or at least free of the stresses that often come with holidays. And for anyone who is so inclined, feel free to share your Easter traditions or tips for special needs family fun.

100 Days of School February 9, 2009

Posted by hopeauthority in Autism, autism diet, Parenting.
Tags: , , , , , ,
1 comment so far

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.

The Kidnapping of Father Time December 23, 2008

Posted by hopeauthority in Autism, autism diet, Children, humor, school, special needs.
Tags: , , , , ,
add a comment

Don’t you just love the way all the classic horror movies have the dumb teenager walking toward the killer instead of running away screaming?  And the way nothing good ever comes out of a dark alley? There’s always a murder or a mugging going on in the alley. You can count on it.

With autism, you can’t count on a lot. Much of life is unpredictable. Often chaotic. But there is one thing you can count on around the holidays…

There is no freakin time.

Seriously, its like someone mugged Father Time in the back alley. Which just adds even more stress to the generally high level of stress that the holidays bring (See 12 days of  Christmas post for refresher).

While my keyboard has been gathering dust (along with the rest of the house), I’ve been desperately trying to do all the crazy last minute holiday prep that normal people do…and they have the nerve to complain about how hard it is for them (don’t ya love that?) 

But then I have to add stuff like creating a new treat for ‘C’ for his party at school tomorrow so he won’t feel sad and frustrated over his special diet. Why else would I be up typing this post as the experimental gingerbread man cookies are filling the house with great smells at friggin 3 am?!

Oh, I meant to get to this earlier tonight, but I was busy wrapping and tagging the 402 gifts for my kids’ teachers, aides, busdrivers, etc. And I have to be at a closing tomorrow this morning in about 6 hours. Not to mention that daughter has dismissal at noon and I have to swing by to get her on the way to ‘C’s party at school at 1:00.

By 3:30 tomorrow today, the endless vacation will have begun. Two weeks without services. What is that? Like 3 years in real time?

Time.

Right now, there’s not enough of it to get ready for the holiday. Like somebody mugged Father Time. And we need to get him back right away.

Time.

There’s too much of it when school’s out and there’s no vacation planned. 

Note to his kidnapper: Please return Father Time ASAP. He is seriously overdue for a butt kickin’ for messin’ with my life.

So…what’s the one thing you know you won’t get to on your “to-do” list this year because you ran out of time?

Autism Birthday Party From Hell December 4, 2008

Posted by hopeauthority in Autism, autism diet, Children, Parenting, school, special needs, specific carbohydrate diet.
Tags: , , , , , , ,
6 comments

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.