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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.

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…

The Mainstreaming Experiment April 21, 2009

Posted by hopeauthority in Autism, Children, special education, special needs.
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Today, Fabio had his first taste of a typical classroom. Just a taste.

And I am thrilled to report that it was freakin de.li.cious!

My little guy has worked so hard this year. A few months ago, he got to mainstream into a typical first grade class for gym. He happens to be very athletic and coordinated, so we reasoned that gym would be a good place to start mainstreaming. And because that’s gone so well, I suggested at his April 1st IEP that we consider experimenting with a more traditional and structured subject.

His teacher agreed and Fabio is now going to spend some time each day in Reading in a typical first grade class of about 25 kids. Starting today.

I wanted to call the school, like 15 times, to see how it went. I was imagining the worst.  Would he even go into the classroom? Would he melt down from the terror and be unable to transition? Would the teacher be supportive? Would the kids be nice? I could barely wait til the little bus brought him home to find out how it went.

Me (excitedly): So, did you go to Mrs. L’s class today?

Fabio: Yes.

Me: Well, how was it?

Fabio: Good.

Me: Tell me what you did. Did you read with the other kids?

Fabio: I want Noggin, please.

Argh. So close…yet so far. This is going nowhere. I know…I’ll check the communication notebook for a note from the teacher (who was forewarned that failure to send a note home with details would result in a frantic phone call instead).

There I found it. The note. It said:

Fabio had a great day. He went to Mrs. L’s class for reading. NO BEHAVIORS!  He raised his hand and participated in class. He was very interested in the new environment and was looking around the room. Fabio continues to do well in mainstream gym and he’s making friends.

I stood there and took it all in for a moment. Unable to speak. Joy and hope daring to well up inside me.

No behaviors? Raised his hand? Participated in class? Is making friends?

The words assembling a vision in my mind of my little boy… who works so hard… bravely facing this major transition. Boldly crossing over from his autistic class to a typical one…just for awhile. Overcoming all the social, behavioral, and sensory obstacles of his surroundings that no doubt were bombarding him the entire time. Mentally slaying those dragons.

The journey is long and hard. But it’s days like this that replenish the spirit.

I am so proud of my little boy. So, so proud.

CSE on April Fool’s Day…Are You Kidding Me?! April 2, 2009

Posted by hopeauthority in Autism, Children, Parenting, special needs.
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When your annual meeting with the school district ..the one you lose sleep over for days…is scheduled on April Fool’s Day, it can’t be a good sign, right?

For the first time ever, we went into this meeting unsure of how it’d turn out. All of our past meetings were mere formalities of sign here, initial there…where we knew going in exactly what the district wanted and what we wanted and we were in agreement. Today was different.

I am generally  happy with the school district and they have been generous in the past with services for Fabio. We have a nice relationship and I try to pay it forward by volunteering as a parent member for other kids’ CSE meetings when I can. Still in these economic times, districts are looking to cut costs. So I was worried.

I was in a tough spot. Fabio is doing great as a first grader in his 8:1:2 class, which includes first and second graders (and one third grader).  The district wants to open up an extra class of 8, for the more advanced kids…but it’d be in a different elementary school…and they want him there academically so he’d stay with the kids he’s been doing group work with all year.

My gut…which is generally spot on when it comes to knowing the best thing for Fabio…says to keep him in whatever remains of the original class that he’s in now, just as a second grader.

If I do that, I may hurt him academically since there may not be high enough functioning kids left there (or moving up from the kindergarten version) to work as a small group. But if I move him to a whole new building with all new people who have never had a class like this in their school, Fabio will shut down. I know it. He can not transition like that. He is so aware and attached to all of the adults in the school he’s spent 2 years in. And the teachers and kids in this school have embraced our children in a way that should be televised all over the world as an example of autism awareness and acceptance.

Fabio is sucessfully mainstreaming slowly in this warm and nuturing environment and I’d like that all to continue just as it has been. Ideally, they should just add that third section to the same school so the kids won’t have to worry about transitioning and could stay there until 5th grade just like typical kids get to stay in one school. Is it me, or is that a no-brainer when it comes to our kids and their absolutely ridiculous need for routine?!

At this point, we are in agreement on the 8:1:2 being the proper placement. I’ve made my wishes known as to which class I want him to be in, but the assigning kids to sections has yet to be decided. It’s still possible that there will only be one section in the school I love and that they won’t need the other section until maybe next year. So we are in a bit of limbo. 

Did I mention I freakin hate April?

Anyone have an opinion on which of your child’s competing needs you’d give priority to in this situation: academic vs. emotional? I am open to suggestions.

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.

100 Days of School February 9, 2009

Posted by hopeauthority in Autism, autism diet, Parenting.
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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.

Hey Howdy Hey! HBOT Update: 30 Dives February 5, 2009

Posted by hopeauthority in Autism, Health, special needs.
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30 down… 10 to go. Hyperbaric Oxygen therapy (HBOT) is moving along.

It’s all a blur when you look at each dive on its own merits. The repetition is both comfortingly familiar and excrutiatingly boring. The same days and times each week. The same road taken. The same CDs in the car. The same DVDs in the tank. The same tech and secretary. The same scrubs worn. The only variable is whether we’ll be in the right tank or the left one.

It’s easy then to fail to see the changes that are happening. It’s like when someone who hasn’t seen your kid in a long time sees him and exclaims “Look how tall he’s gotten!” Since you see him each day, you tend not to notice the growth. Well, HBOT’s like that.

I’m no longer counting the length of his utterances. I just notice that he is more talkative in general. More verbal. More words strung together. New words in the vocabulary. Still some scripted speech, though used appropriately in real life situations. And some plain normal speech, too. And yes, an occasional profanity…also in context. Not quite conversational yet, but getting closer, with minor back-and-forth exchanges.

The big thing to come of this last group of ten dives would be his teacher’s decision to begin mainstreaming him a bit in school. This is due to Fabio being much less anxious and much more cooperative (less tantruming) at school. The teacher said everyone notices this change in Fabio, including the principal. It’s good to hear that, especially since I think his teacher is resistant to acknowledging that non-educational efforts are effective.

He has been a bit more difficult during the treatments the past 3 times. Gives me a hard time getting in the tank and pushes my buttons when we’re in it too. It’s unfair of me to expect him to be perfect just because he has been for the first 27 dives. Yet it’s hard when he’s not perfect.

Oh, perhaps the coolest thing that happened during the last 10 dives was Fabio giving up those freakin Dora DVDs! Yes, Dance to the Rescue and World Adventure have happily been retired after 8 and 19 viewings, respectively. Any health benefits I may have received from being in the tank with Fabio were surely undone by the extreme stress of having to listen to hours and hours of Swiper. no. freakin. swiping.

We’ve moved on to a slightly more age-appropriate level of entertainment… Disney movies. Specifically, Toy Story. Sure, I bribed him with his latest obsession…Kooky pens…to get him to watch it the first time. But since then, he’s never looked back.

So who knows how much farther HBOT may take him in the dives to come?  We will just continue or journey in to the unknown…

To infinity and beyond.

Mainstreaming Starts Today! February 3, 2009

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So this is one for the record books.

Today, Fabio officially starts mainstreaming in school.

Nothing major, of course. We’ve all agreed that since his behavior and language has improved so dramatically in the past few months (possibly due to HBOT) that we’d try mainstreaming him into a typical gym class first and see how he does. Two days per week for now.

Fabio loves gym. He’s good at it. He loves the teacher too. And she has a soft spot for him. But he is an anxious kid, so I am worried sick all day here wondering how it’s going to go.

There are two girls in his class who do some mainstreaming, so I know to expect the worst for awhile according to them. They mainstreamed in subjects like circle time, recess and lunch, and I think science. Mainstreaming is done by taking the child into a typical class for a period at a time, a few days each week.

I wanted to experiment with mainstreaming before Fabio’s upcoming April annual review, so we could have it on his IEP if it’s working out well.

If anyone has any tips on how mainstreaming can be made less stressful or more successful, or would like to share your own experiences with mainstreaming efforts, please feel free to comment.

I will let you know how it goes. And will post my own tips when I figure it out!

Wish us luck!

The Richie Reader Awards…from Hell, of course January 22, 2009

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Well, we’ve established that birthday parties can suck. Problems when your kid gets invited and problems when he doesn’t. But there’s another area that gives birthday parties a run for their money when it comes to potential for disaster…

Awards ceremonies.

Some background… before the rant: My son’s elementary school has a program that’s been around longer than 25 years called “Richie Reader” program. Starting each September, every kid in the school is encouraged and expected to participate and read more books than could possibly be devoured by the nerdiest of bookworms. (To date, over 59,000 books have been read this year.) Log sheets are filled out of all the books read and are signed off by the parents. Then they’re converted to stamps on giant tally sheets along the hallway walls. Legions of PTA volunteers work countless hours keeping track. Mega-long year end award ceremonies involve trophies and ribbons and pomp and circumstance. Monthly award ceremonies are held where each class sends 2 reps to be called upon to go on stage and shake the hand of the most frightening mascot this side of Tokyo: Richie Reader.

Wanna guess who the rep was in Fabio’s class for today’s monthly ceremony?

This Richie Reader mascot is freakin scary. No two ways about it. I swear there were 5th graders whose knees were quivering at the thought of approaching this thing awaiting them on stage. I don’t know if he is an alligator or a dinosaur or a dragon. He’s green, with sharp white teeth, an alligator-type mouth agape, and terrifying, flaming yellow eyes (where the whites should be).

He looks like what you’d get if you crossed Dorothy the Dinosaur with Godzilla. Then embalmed it.

So we go to this noisy, over-crowded event. Listen to the BS speeches. Marvel at how nicely Fabio is sitting in his seat right up front. Video camera ready. Two proud parents to support him… Enter the dragon.

Fabio’s name is called, thankfully in quick succession with the rest of the 1st grade reps, who dutifully and quickly fill the stage. Where is he?

Still in his seat. That’s where.  Right where I expected him to be. And there was nothing dear enough on the planet that could have been offered as a reward for going up on that stage at that moment. I’m amazed he didn’t flee the scene, frankly.

Yep, that video footage is gonna be lots of fun to watch over the years. Should’ve used the tape from last summer’s end of the year Richie Reader ceremony… where his aide carried him up on the stage with him hiding his face in her boobs (smart kid). Or maybe his pre-school graduation… where he wouldn’t go onstage for his diploma…or wear the doofus cap either.

For a “ham”, he is amazingly anxious and shy at such events. And I don’t blame him one bit. But I just hate these ceremonies. With the tape rolling, I keep thinking  Maybe this will be the time he goes up there.

With that monster waiting in the wings for his approach, I doubt his time will come any time soon. Someone should just slay it and make it into something useful like a pair of shoes and a bag.

That thing is just scary enough to make a kid choose illiteracy.

The Kidnapping of Father Time December 23, 2008

Posted by hopeauthority in Autism, autism diet, Children, humor, school, special needs.
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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?