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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.

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Autism and School Picture Day May 19, 2009

Posted by hopeauthority in Autism, Children, Parenting, school, special needs.
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Is there anyone…anyone…out there in Autismland who has gotten a good school picture of their kid? Ok, I’ll settle for a decent one. Anyone?

Hmmm. Let me make this easier…

Anyone got one with both shoes still on?

Actually seated… without a tantrum in progress?

How about actually looking at the camera? Okay, that wasn’t fair to even ask.  Anyone have one looking even remotely in the direction of the camera? I’m talking anything at an angle less than a profile.

Anyone with a hairdo that doesn’t scream “BEDHEAD”?

Anyone whose boy isn’t clutching a Barbie in each fist?

Anyone whose kid didn’t spill something on the shirt?

Anyone whose kid kept the shirt on despite the annoying tag in the neck?

As you may have guessed, today is school picture day…again. We are lucky enough to have one in the fall and another in the spring. That’s two wasted checks for $35.00 each in a vain attempt to get a normal looking photo like the rest of the world. And to shut up the mother-in-law.

Where in God’s name do these so-called photographers come from? The freakin’ Department of Motor Vehicles! You know the type…they say “On three. One. Two.” Snap. WTF!!!

Speaking of which, there should be a license required to take our kids’ pictures. 

Until then, here’s a list of helpful hints to get you through the annual ritual:

  • Order the least expensive package since you will probably either send it back or only keep copies for yourself. In the unlikely event you get a winner and do want to distribute it to the entire world, you’ll be happy to pay a bit more for the reprints.
  • Don’t count on him wearing the new shirt. Hope. Attempt it. But don’t count on it. You don’t want to start the day on a stressful note by fighting over the outfit.  Pick a comfortable favorite that you …and he…can live with.
  • Write a note to the photographer in bold print where he can’t miss it (and also tell the teacher to tell him)  that your child has autism and to please have patience and make the extra effort to get him to look at the camera…and ask him to take several shots so that one may actually be decent. I tell him I have tons of relatives and am just waiting for a good shot so I can order more pictures.
  • Send a back-up shirt to school incase the first choice gets ruined before the photos.
  • If you have an old school photo, show it to him before  he leaves and tell him its picture day at school today and you want him to sit nice and smile…and then offer him a positive reinforcer for when he gets home.
  • Send a brush to school and ask the teacher to use it if his hair gets messy. But if your kid hates having his hair brushed, reconsider this tip and just hope for the best.
  • Ask the teacher in advance to schedule the photos for the best time of day for the majority of the class…usually earlier in the day.

So, there you have them. My golden nuggets of school picture day advice for the autistic. Oh, and there’s one more thing:

  • Don’t sweat it if they come back embarrasingly lame…as they usually do. Just send your mother-in-law (and everyone else) an enlargement of one of the many great shots that you’ve taken of your kid.

You know the ones I’m talking about…the ones that only a mother can take.

The ones that capture the true essence and spirit of your child. As if you had a license or something…

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.

The Dog Experiment: The Conclusion May 5, 2009

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Sorry, I left you all hanging after the mid-April report on the rocky beginning of the dog experiment (See April 14 post for recap.)  After much reflection on the 10 day fiasco trial, I’ve decided we are not ready for a permanent pooch in the house…yet.

First, my guide dog training days lead me to expect a perfectly behaved dog and Fabio still needs enough of my attention that I don’t have the time to train a puppy the way I’d want it to be.

Also, I’d be too worried about what trouble Fabio would be getting into while I was outside with the dog doing its “business”. And then there’s the issue of keeping Fabio away from the dog’s food and slobbery toys.

And then there’s the potential for allergies…Fabio has so many food and seasonal allergies and sensitivities already that a permanent dog may be a problem.

And I really had to watch Fabio and Rodney closely when they did play to be sure Fabio was gentle and played correctly.

And I was getting confused trying to keep track of when everybody last peed and pooped!

So, those are the generic reasons we aren’t getting a dog right now.

But back to the experiment, already in progress and going awry at last glance:

I consulted my dog behavior experts for help after the dog kept pooping every time I left him alone. Oh, and he also jumped up on the furniture…or your lap if you were sitting on it. And, uh, humping jumping on Fabio. 

Other quirks: He curled up and slept like a kitten on the front passenger seat of the car, but shook uncontrollably when placed on the floor of the front passenger seat. Wouldn’t stay in his freakin bed at night either …because he wants up on the bed. And, if you dared to leave him alone on a floor of the house for two seconds, he’d bark. Oh, and he licks feet and flip-flops. Ewww.

Did I mention he won’t  poop in the rain?  Well, not outside anyway. Not even when I’d hover over him with a golf umbrella. Did I really do that?! And did I mention that it rained almost every freakin one of the 10 days we had Sir Rodney?!

Of course I’d never tell Rose all these things about her little boy dog.  She’d either never believe me…or be crushed. And I love my friend, Rose.

So in addition to sending her text messages and photos … in Italy… of Rodney having fun, I planned a memorable homecoming.

Did you all hear the story about the lion cub that was raised by two men and then returned to the wild where it became the leader of a pride of lions? Then, after quite some time of not seeing the men who raised him, the men stepped into the lion’s “space” again. The lion, spotting the men, charges toward them. As the camera rolls, no one knows whether it’s going to pounce on them. Then, in a dramatic moment… and to the tune of Whitney Houston’s “I Will Always Love You”… this playful, loving reunion takes place! Major tear-jerker.

I never saw this video, nor had I heard the story, until Rose shared it very casually over Easter dinner. A mental note was made. Ten days of hell followed and Rose was on her way to come get Rodney. Gee, did it look bad that all his stuff was packed up at the front door? 

So the stage was set. The You Tube song cued up for the chorus. The dog held back from view. Rose enters my apparently deserted house and calls out to me…conspicuously out of sight. After a few seconds that felt like an eternity, the silence was broken as Whitney broke into song: “And I-I-I- will always love You-oo-oo … I will Always love You …”

Then I simultaneously released my hold on Rodney and watched the magical reunion unfold.

Rose was hysterical crying … and hysterical laughing … as she hugged her little hairball. I also captured this moment on film so I can make fun of her for years to come.

And so I can watch it the next time I ever.even. think. about getting a dog.

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

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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

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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!

Adventures with Mr. Gutter Mouth March 6, 2009

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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.

American Idol and Autism March 5, 2009

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Dun-na. Dun-na. Dun-na. Dun-na. “THIS (long pause) is American Idol…”

All it takes is a few notes of the intro song to send Fabio running, hair in the wind, for the big screen in the den. He starts asking for American Idol about an hour before it’s due to start. It is a great blackmail tool reinforcer to use to get him to do any outstanding homework or finish eating (yes, we eat kinda late)!

Idol has been a tradition in our house since Season 4. We never miss it, even if we have to DVR it on occasion. And we all participate in a “pool”, so we each have to decide who to vote off each week. I always take my daughter to the concert when they tour in the summer.

One of those funny moments you’ll always remember happened a couple seasons ago when the four of us were watching Idol. It had just ended and hubby, daughter, and I immediately started speculating and debating about who we thought should be voted off, with us not able to agree. Fabio was just sitting there with us, being his regular cute, essentially non-verbal, four-year-old self. It was down to maybe the last 4 people at that point. 

Once we stopped debating and there was a lull in the discussion, Fabio simply, and clearly, stated: “Lakisha”. Freakin Lakisha. We all burst out laughing. Great times…

So now, when the Idol music begins, Fabio has started doing something that is both adorable and excrutiating at the same time…he runs to his drum set and starts to “play”. And Mr. Music also occasionally “accompanies” some of the more rock-style performances with his unique drumming talent. Or he’ll try to sing along a bit. Or he’ll dance.

So watch for Fabio to be in American Idol, Season 18. He’s got 10 years to perfect his gig. Oh, and he’ll be no wild card.

Nope, America will vote him in, for sure.

It’s Groundhog Chili Time! February 2, 2009

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That’s it. I’ve had it with this tradition of pulling a hibernating hairball out of its hole to determine whether we get an early spring or …as is always the case… another six weeks of miserable winter.

What do they think the nasty critter is going to do? Reward us with the gift of an early spring? And let’s not even get started on how they can possibly know what the groundhog sees…

Why every guidance counsellor on the planet isn’t pushing all students to become weather forecasters is beyond me. It’s the only career where you can be wrong 90% of the time…and still keep your job. They rely on fancy doppler technology and cranky groundhogs.

Anyway, my autism point as it relates to Groundhog’s Day is that I hate winter and the way the freezing cold for months on end limits Fabio’s activities. Sure, I like the first snowstorm (especially if it falls on Christmas Eve). The first snow day. The first sleigh ride. But then…

I miss the warmth of summer. The pool and the beach. The fun in the sun. The ability to stay outside for hours with the kids. I like how Fabio can burn off so much more energy in the summer. And how it it’s just plain easier to deal with everything without snow boots, soggy winter gear, and the ever present salt, sand, and muck. The sniffles and sneezes. The stir crazy weekends.

So this is a call for all the great creative moms (and dads) out there to help each other out and answer the following question:

What do you do …inside/outside/and away from home…when its snowing outside to keep your autistic and typical kids busy? 

We need to pitch in and help each other survive the remaining six weeks of winter. So let me start things off.

I love to cook with my kids. And in the winter, I love to use the crockpot. It’s so easy. Just chop up a few veggies and toss them in with just about anything…

…like a groundhog or something.