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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…

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 and the School Play February 18, 2010

Posted by hopeauthority in Autism, Children, Parenting, school, special education, special needs, specific carbohydrate diet, Uncategorized.
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“He’s going to be a horse.”

The note came home from his second grade teacher. The play he’s been working so hard for since October in his mainstream Music class was rapidly approaching.

A HORSE??

What the heck kind of play is this? Is it all horses? Is the horse a central character? And most importantly…can the show go on if the horse runs away?!

The note continues. “Must wear solid black, brown, or tan. A headpiece will be provided.”

HEADPIECE?!

You’re freakin kidding, right? Ok. Now, I’m starting to sweat. What kind of headpiece are we talkin about here? Doesn’t matter. I don’t see him even trying it on, much less wearing it for a 30 minute production.

Thirty minutes?

What are the odds of Fabio and his one other autistic classmate making it through this mainstream version of “The Tortoise and the Hare”…with about 35 other “typical” second graders?

Thirty minutes of standing in place on risers, many musical numbers with hand and arm gestures, taking turns, NOT running away, even in the face of all those parents and grandparents and their camcorders…and all the noise.

To date, Fabio has had bad experiences with stages. Graduation from his special needs program right before kindergarten didn’t go well. He was miserable, wouldn’t wear the cap, and was melting in the gown. And he refused to go up for his diploma. One of only 3 kids who wouldn’t. Ditto in two award ceremonies for reading since then.

But time has passed since those events. And Fabio has also had a chance to see his sister perform in several concerts and live theater productions in the community. He goes to the shows, sits nicely, and gives her flowers at the end. And he loves music. Maybe this would be different.

I figured I’d better prepare him in advance for the idea that we’d be coming to see this play. So a few days beforehand, while he and I were laying in my bed relaxing before bedtime,  I said in my happy but not too excited voice, “Mommy and Daddy can’t wait to come and see you be a horse in the show.”

“No.”

“Well, um, yes, honey. We are going to come see you just like the other mommies and daddies of your friends. Ok?”

“No.”

Time for a new approach. “Honey, Mommy and Daddy want to come see you just like we come see Nic (Sister) in her shows. We are so happy and proud of you and want to come see your play. And we’ll bring you a present.”

I see the wheels turning as he considers this. I brace myself for the request. Surely he’ll ask for some costly toy…

“Bring flowers.”

Did I hear that right? Flowers? For a school production? For a boy? Well, why the hell not! You got it, bud. And I secretly applauded his connection between his play and his sister’s plays and the ritual of giving flowers.

So we grabbed the camcorder, special treats for the after-party that he could eat on his diet, and of course, the freakin flowers, and we hurried off into the snowy morning traffic to get good seats for whatever was in store for us. And we waited. All the “typical” kids came in and took their places. All the kids in the classes of those kids came in and took their places.  All those kids’ parents and grandparents came in and took their places.

Where is he?

Then, bringing up the rear… like a cowboy hearding cattle… marched my “horse” with the horse headband on! He went right to his spot on the riser. The music began.

He was perfect. PERFECT. He was typical. In fact, he was better than typical. No one there would ever have guessed that he or his classmate beside him had autism.

I started to cry. My husband started to cry. His teachers and aides started to cry. His former teachers who came out in the snow from other schools and from maternity leave just to see him…started to cry. And for about 30 minutes we all watched in awe as he did every single thing just right. And he radiated happiness. The little black horse with the headpiece on his head.

And when it was over and the tears were dried, that little horse rode off into the hallway… carrying flowers like a champion.

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.

Autism and the Dog Experiment…Part I April 14, 2009

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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Like I don’t already have enough on my plate with all my daughter’s activities and, well, with my little challenge, Fabio and his needs…

…now, there’s a dog in our house.

I’m one of those people who can’t say “no”. I’m also one who speaks first and thinks through later. That’s pretty much how Rodney… the prissy prince of a shit zui… came to live with us on Sunday night for the next 10 days while his owners are in Spain on vacation.

But truth be told, I would happily do anything for our very good friends, George and Rose. They are one of only 3 families that “get it” when it comes to Fabio, his diet, and autism in general. We spent Easter with them and came home with Rodney…and the most beautiful cast iron pot:  gigantic, fancy, French-named, green-painted, two-handled, very heavy, obviously expensive (and totally unnecessary!) “Thank you in advance” gift. I joked at the time that Rodney would actually fit inside if he were bad. I’m not laughing now.

Quick background: Hubby and I raised 5 guide dog puppies before the kids were born. I was the drill sergeant. The dogs were smothered with affection during those “infertility years”, but the competitive nature in me needed them to be the best. To have them succeed. Even when I desperately wanted them to fail so they could stay with us. And succeed they did. So I have Labrador experience. Which apparently counts for nothing when it comes to this pampered little lap dog.

But if I am being honest, I had selfish reasons to undertake this challenge. Yes, I was helping friends. But I could “test drive” the idea of getting a dog. See if Fabio would be good with it. Will he be gentle enough? Will he even be interested? Can I take the dog out to pee without Fabio burning the house down while I step out? Or is it still too soon?

I also can have my daughter earn her “Pet Care” badge for Girl Scouts by taking care of Rodney. She’s been begging me for a dog for years. I blame the economy, but she realizes it’s mostly due to her brother’s autism and my fear of something happening to him when I am outside tending to a dog. I don’t want her to resent him over this.  We’ll see how much she wants one after 10 days of taking care of him.

So, Rodney shits in the kitchen 10 minutes into this experiment. Next day, he does it again just to spite me for daring to leave him alone for an hour or so while I took the kids to the doctor. I know it was spite. He’d gone before we left. Rose’s 10 page instruction manual says he’s a one-dump-a-day dog.  He did that extra load…and walked his long hairy legs and paws through it… on purpose.

Game on, little hairball.

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.

Autism and the Tooth Fairy March 29, 2009

Posted by hopeauthority in Autism, Children, Family, humor, Parenting, special needs.
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There’s the autism world. There’s the real world.

There’s the bridge between the two worlds…that I imagine as one of those rickety, rotted, wooden suspension bridges with missing planks like you see in the Tarzan movies. Every day, desperate parents risk it all to cross over with their special kids. To bring them back from wherever it is they’ve escaped to. Back to the real world.

As if this isn’t hard enough to make sense of…

There’s also the fantasy world. Enter the tooth fairy.

Holy enamel, Batman! How do you freakin explain this concept to an autistic little boy? Do you even try?

Well, having a typical 11 year old who still sorta believes in all things magical..sorta…and who happened to lose one of her last few teeth on the exact same freakin day as Fabio lost his tooth, I had to face the fairy.

It has been about 2 years since Fabio lost his first two teeth in quick succession, so he doesn’t remember anything about the fairy coming. This particular tooth has been hanging on for ages, so I knew the moment was coming. When Fabio flashed me his winning smile yesterday morning, there was no denying that the tooth…suddenly laying down flat forward in a pool of blood …had to be “helped” out of his mouth. Gross, I know.

After priming him all day, Fabio insisted on falling asleep in his regular spot…our bed…and on making a “tooth samwich” by putting the tooth between two pillows. He and his tooth were moved to his bed. His sister fell asleep with her tooth under her pillow. The tooth fairy left her standard $5.00 bill amid a dusting of glitter under her pillow. (You know…fairy wing dust!) For Fabio, it was a bit different…

I heard him stirring this morning and quickly went into his room in the hope he’d settle back to sleep. I found him sitting up with a dollar bill in one hand and a Kooky pen in the other. Did I mention that Kooky pens are his absolute favorite thing in the world and he’d do anything for one? I thought I got him to lay back down for a bit, but, like a lightbulb had gone off in his head, he jumped out of bed, rounded the corner and, before I could stop him, made it to his sister’s bedside.

He snapped the light on, flung back her covers and turned over her pillow to reveal her haul. I know he thought he would steal her Kooky pen, but alas, she only had a five-spot. Yes he pocketed that anyway. And then he hit the lights and climbed into her bed for the first time ever and snuggled in for another hour of sleep.

So, he got it. Somehow, he made the leap from reality to fantasy. I don’t know who or what he imagined the tooth fairy to look like, or how he thinks she exchanged the tooth for the goods, but he didn’t freak over the concept of his tooth being gone or of the thought that someone or something came into his room in the night.

I think the key to making this a positive experience was the kooky pen. It was in making the reward something relevant and desirable for him. Just money would mean nothing to him…despite pocketing his sister’s haul.

Let’s hope the Easter Bunny goes as smoothly…

Share your own tooth fairy experiences here!

Happy 7th Birthday Fabio March 22, 2009

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Well, I can’t think of a better reason not to make this…my 100th post…a post all about me, than to instead salute my little guy on his latest milestone. 

Has it been 7 years already since my water broke right in the middle of Home Depot, only 27 minutes after I’d been released from bedrest, and flooding the entire lighting department?

Anyways…I’ve been absent due to my lingering on what surely felt like the brink of death for a few weeks. Nasty sinus infection that I ignored for two weeks, then a very bad reaction to antibiotic #1 …as in holy shit, I think I have the rare but serious tendon damage that the label warns of as I can not walk on my feet…a cough that will simply not stop, an unrelenting headache that made me want to freakin drive off a cliff. Well, you get the idea…

But I put off the doctor since I wanted to get through Fabio’s party. He opted for the bowling party again and a good time was had by all, most of the kids being friends from school. He got great gifts from folks who “get” that sometimes you have to buy below the recommended age if you want to give something “age-appropriate” to an autistic kid.  After hacking my way through the party, I crashed the rest of the day and I realize that I simply must take better care of myself if I want to be around to take care of everyone else.

After the bad reaction to the first drug, and the headache which… if I didn’t know I had a sinus infection I would have thought was surely a stroke brewing… I even went to Fabio’s DAN doctor (a chiropractor) for help on Thursday.

He took one look at me …there without Fabio..and knew it was serious. So, out comes his arsenal of holistic remedies. First, a lovely massage of the face, head, chest and neck with lavender oil. There I was, on my back, all relaxed. His strong, warm, oily hands massaging my shoulders and neck and then…

In one fast and fierce unexpected moment, he twisted my head like they do in the Rambo and Bruce Lee movies. You know what I mean. You hear the crunching bones as someone’s chin is twisted way beyond their shoulder and their neck breaks..and they slide like a mass of jelly to the floor…dead.

Like a wienie, I screamed. A scream to be heard in the waiting room (if not the parking lot). I could not believe that I was not…at a minimum…rendered a quadriplegic by that maneuver. I also could not believe that my headache was gone. After 4 straight days. Gone. Just like that.

Then I remembered why I love this man. Even if he did send me home to drink a teaspoon of apple cider vinegar and put peroxide in my ears 3x/day. Kinda hokey. And gross.

I’ll eventually get around to doing that traditional 100th post. But I wanted to wish Fabio a year full of fun and growth and peace. And I wanted to remind all of you to take care of yourselves so you’ll be around to enjoy many more of your special kids’ birthdays too.

Adventures with Mr. Gutter Mouth March 6, 2009

Posted by hopeauthority in Autism, Children, humor, Parenting.
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I knew it would happen someday. 

The thing about talking …or swearing…in front of kids is that they soak it all up like a sponge. And don’t kid yourself about those cute little non-verbal autistic kids who seem to be in their own little worlds. Little sponges, I tell you.

Remember this one thing: Just because they aren’t talking, doesn’t mean they aren’t  listening. They understand more than you realize. And your day is coming. Mark my words. It’s coming sooner than you think.

So, the politely vague note comes home from the teacher’s aide (who is, like, 14 years old or something) and it says Fabio “had a ‘slip’ and they ignored it”. So, dope that I am, I am thinking my kid fell down and they left him there. Then it goes on and says something about writing neatly and a ‘slip’ again. WTF? So I politely write back that I don’t understand what they are saying, please clarify.

Apparently, unbeknownst to me, the code word for a curse/swear/bad word is a ‘slip’. Ohhhhhh….I get it now. So the details of the exchange were as follows:

Teacher’s aide: “Fabio, you need to rewrite this assignment. It is not neat enough.”

Fabio (begrudgingly rewriting it, replies): “Son of a bitch…”

Look, I’m a bad mom. I admit it. I laughed at the picture in my mind. Do I want him to go around cursing? Of course not. But I am not going to have a fit over an occasional ‘slip’. Especially when used in perfect context!

What did bug me was the note that came home with the details from this doe-eyed youth of a teacher’s aide. She had whited-out the following addition: “He did NOT learn that at school, for sure.” (Yes, I read the back of the page and could easily see what she meant to conceal!)

I’m not proud to report that I sent in a note today figuratively ripping her a new one over that comment. I told her it was out of line. I told her almost every parent and every kid, typical or not, curses on occasion. I told her that since she is not a parent much less a parent of a kid with autism, she most definately was out of line in judging me.

Then I added that I know he didn’t learn it at school because he learned it from me. I told her she could also hear an occasional “Goddamnit”, so she’d better brace herself for it.

I explained that during the SIX YEARS  I waited and worried for Fabio to find his voice, I promised myself that…if only he would speak… I would never tell him to be quiet. That even a bad word would be a good sound to my ears.

She called me first thing this morning to apologize for the misunderstanding, which I really appreciated. I believe she learned something important today about perspective. Something she can use in the remaining zillion years of her teaching career since she is just starting out. 

That and that you can still read whited-out text from the back of the page. Well… son of a bitch!

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Note to friends and followers: My 100th post is very close. In keeping with tradition, I am considering making it a post answering any questions…tasteful of course…that you may have about me. So if there’s anything you want to know that you don’t already, let me know.

Autism and the Octuplet Fiasco February 11, 2009

Posted by hopeauthority in Autism, Family, Health, Parenting, special needs.
Tags: , , , , , , ,
3 comments

Last month, the headline story that had rumors of autism swirling around it involved the tragic death of John Travolta’s son. Some people asked me my opinion on it, but I opted not to post on it because it seemed too raw. Too private. Too sad.

This month, we have the octuplets birth. And the autism footnote to the story is that at least one of the mother’s previous six children has autism. Two others may have other special needs issues. Now she has eight more children. What are the odds that one some several of them may have special needs or autism as well?

Am I the only person who can’t stop thinking about that one child with autism?

Do you think the press will get to that point some day? Maybe on the 15th interview? the 20th? If she’s spending 45 minutes per day holding each newborn…6 hours…and she wants to go back to school…and she likes to sleep…and she plans to work… How much time is left for the child with autism?

How do you adequately parent 14 children in only 24 hours each day?

This is no doubt a hot topic for debate. And while it may be private, it doesn’t rise to the same level as the Travolta death. There is a sense of “fair game” here. Like the mom brought this on herself. And she actually did, by her deliberate actions and conscious choices. I don’t hate her, but much of the public does.

As the mother of two children… one with autism… and as a woman who did in-vitro fertilization seven times in order to have that family…and as an only child myself, I couldn’t let this story pass without comment.

I am all for women taking heroic measures to have their families. I understand the temptation to throw caution to the wind and transfer back more embyros than the doctor recommends (especially after numerous prior failed IVF attempts). In my case, I’d lost both of my parents prior to having children. So if anyone desperately needed a “connection”, it was me.

So why don’t I have 14 children?

Because I love the two children that I have. And loving them means I want to share a lot of my time with them. And because one of them has autism, he needs a lot of my time so he will be the best that he can be. And she needs a lot of my time so she will not resent her brother taking up so much of my time. And they both need a lot of my time so I can raise them to love and care for each other.  So, I would never do anything to risk my life and leave them without a mother, or to add such a large number of siblings at one time that I’d effectively leave them without a mother anyway. I put their needs first.

When my daughter was born, I fell in love instantly. She was everything I ever needed. I was happy. Like some moms, I actually couldn’t imagine loving another child as much as I loved her…until her brother came along. He was perfect. Family complete.

Sure, autism made it easier for me to get through that window of time where the biological clock is ticking loudly that “it’s now or never” for another child. But historically women stop having children after having a reasonable number of them. Or they may even stop sooner if there are health issues to consider.

It’s hard to find the positives in this story. We want and need the right to pursue a family through medical technology. We want to choose how many embryos we put back.  But there is something wrong with a single, unemployed mother of 6 children…at least one of whom has autism…having octuplets. It seems reckless to me.  Everyone is bitching about the price to the taxpayers…But what is the price to the child or children with autism?

And while I’m ranting, is anyone else just blown away by this woman complaining on national TV about how her own mother wasn’t really there for her emotionally? Hello! Whose house are you freeloading in with your 6…soon to be 14… kids? Who took care of them when you were on bedrest? Is that any way to thank your parents? No wonder they stopped at one.

Do you think state agencies should follow the family to determine whether it’s in the best interest of the autistic child …or any of those children…to remain in her care?

Any opinions to share?