jump to navigation

Autism and the School Play February 18, 2010

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

“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.

Advertisements

Autism and School Picture Day May 19, 2009

Posted by hopeauthority in Autism, Children, Parenting, school, special needs.
Tags: , , , , , , ,
2 comments

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…

Regression by Strawberry May 2, 2009

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

Gotta love those care-free days of youth and all the fun school projects you do in special ed first grade. You’ve got the non-edible projects with macaroni and glue. And, occasionally, you get the edible ones.

And when your kid is on a totally restrictive special diet from hell , these projects are the ones that make you want to kill somebody. Or kill yourself. Oh, and it’s extra special when you get only one night’s notice about the project…

So the note comes home:

We’re going to be making peanut butter and jelly sandwiches in class tomorrow. Can you send something in so that Fabio can participate?

Unlike the hundred of thousands of kids who’d die from it, it’s not the peanut butter that’s a problem for Fabio.  I have a special organic peanut butter with no additives that he loves.

And it’s not the bread. I make Fabio bread from cashew butter, eggs, baking powder and a pinch of sea salt. 

It’s the freakin jam/jelly that is the challenge.

I’ve been canning jams and jellies for competition for almost 20 years, so thankfully, I have a leg up on most folks in that area. And I can substitute honey for sugar in the recipes. The trouble is the fruit options.

Fabio can eat many fruits, but not the ones that make popular jams. He can’t tolerate berries, grapes, or apples due to their high natural salicylates and/or phenols. And what’s worse is…he loves them. If you put out a bowl of blueberries and a cake, he’d go for the berries every time.

When he eats these fruits, he is in heaven. Until the next day. And the five to ten days thereafter. Yes, you heard me. The effects far outlast how long the food was in his body.

It’s like a Jeckyl and Hyde thing.

He regresses across the board. Total loss of eye contact and any functional language. Very bad behaviors. Repeated tantrums. And it goes on for days! Of course, it’s never worth the moment of pure joy he had while eating the coveted fruit. And yet again…

Still, every 6-12 months a situation will arise when the temptation is too great. When heroic efforts would be needed to avoid the fruit. When just enough time has elapsed since the last time to let me forget how hard those several days of hell are going to be on all of us.

When you think that maybe… just maybe… this time it will be different because maybe… just maybe… he somehow outgrew this allergy.

So I stay up til 2 am making this gorgeous, ruby-red strawberry jam for my little man. And I bake him a fresh loaf of his bread and slice it a bit thicker so he’ll be able to spread on it without ripping. And I packed a little container of his peanut butter. And I crossed my fingers.

Sleepyhead walks in to the kitchen at 7am, sees the jam in his lunchbox, removes the container, and says very nonchalantly: “No thank you.”

Umm… No freakin way!!! I thought. And… with the look of daggers coming from my tired eyes as I replaced the container in the lunchbox… I said through gritted  smiling teeth:

“Mommy made you yummy jelly to make peanut butter and jelly sandwiches today at school.”

“No thanks.”  As he removes it again.

Okay, this is going nowhere. So, I give him a tiny taste. And in one instant a memory awakened inside him. And his green eyes widened. And he smiled. Big.

So he happily went off to school with the promise of more jam in his future. And I met him up there later to give him some enzymes to help him digest the berries. And he came home begging for more PB&J sandwiches…which I gave him… until the small allotted amount of jam was gone. And he was in heaven.

Until the next day when regression set in.

But I’m happy to say that it is less severe than it’s been in the past. He has more language now and has retained it. Eye contact is okay for the most part. The bad behaviors are only evident when demands are placed on him that he doesn’t want to do and even then, not as bad as before.

It gives me hope that my boy will someday be able to enjoy the simple pleasures in life.

Like fresh strawberries in the summer.

And maybe a friend to share them with.

The Kidnapping of Father Time December 23, 2008

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

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

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

There is no freakin time.

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

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

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

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

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

Time.

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

Time.

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

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

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

Autism Birthday Party From Hell December 4, 2008

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

About two weeks ago, my son went to the best birthday party ever. Last night, he went to the worst birthday party ever. Ever. Um, did I happen to mention EVER?

Warning: This post is a rant.

I wasn’t going to let him go because it was so inconvenient to work it out for 4:45 on a weeknight, but I felt guilty since it was a boy from his class.  I don’t know the mom, having only met her once…at open school night. I should add that she has a reputation for being very openly anti-school district and has a lawsuit pending over her son’s placement.

I didn’t want my son to miss a chance to have a social outing with his peers, especially at this cool, new indoor inflatables place I’d heard great things about.  So I moved heaven and earth, called in favors, and got to the party…only to find that only one other boy from the class came. But there were plenty of other special needs kids there who were noticeably older and larger than my son. That’s great, I thought. A nice group of like-minded parents.

Boy was I wrong! I never felt so unwelcome and out of place at a party in my life. And as we all know, there are many parties where we can feel out of place. I was wrong to assume that a special needs party would be a safe haven.

So, imagine a giant inflatable double slide reaching right up to the ceiling…about 20 feet high… and having a narrow “staircase” sandwiched between the two slides, which is actually more like a 24 inch wide path with vinyl-covered, built-in 2×4’s as “steps” and durable straps on each side as “railings” to pull yourself up with.

Now, imagine … cajoling your painfully shy and anxious son to try something… ANYTHING… out of the five different inflatable options… sometime before the freakin party is over…  Then, having to coax him and follow him up said staircase from hell without looking like a total doofus and then sliding down it with his little butt crammed ever so snugly in your crotch. Now repeat. Four times. Finally, courage emerges and he goes solo. Life is good.

Enter, Little JackAss.

Out of nowhere, this huge boy of about 10, lunges up the staircase where my son …just behind his 2 friends… is about halfway up.  Little JackAss reaches ‘C’ and doesn’t push past him as I was expecting. Oh, no. Instead, he proceeds to violently push and shove ‘C’ down the staircase! ‘C’ is telling him “Stop that!”, and is holding on to the straps for dear life and looking down to me.

In an instant that felt like an hour and in what I imagine as one of those slow motion movie scenes, I leapt…yes, I can apparently leap when need be… to his defense and was on Little JackAss in a flash, bellowing for him to “Get your hands off of him!” I remember thinking all the while, Where the hell is this kid’s mother?!  Then, from somewhere down below comes the shrill, loud voice of Mother JackAss “Timothy! Keep going up. Right now. You go up. Go!”

Are you friggin kidding me?! That was all? No “Timothy, don’t do that”? No “Timmy, say you’re sorry to that boy”‘? Not even a Mother Jackass-to-Mother  “I’m sorry”? Nope…not a peep.  He made another kid cry 2 minutes later. Same lack of response from  Mother Jackass.

Then as soon as my heart rate went back to normal and I was able to convince my son that it was safe to try the slide again, Party Hostess Mom (who is one of those moms who puts herself before her kid: painted face, big 80’s hair, gym rat) comes over and her first words EVER of conversation to me are (add major negative attitude to the tone): “So, are you happy with how things are this year?” Ever the diplomat, I say that there’s stuff I like and some stuff I don’t.  She actually scoffed at my answer.  (I thought scoffing went out of style with the colonies…)  She can’t let it rest…she proceeds to interrogate me as to why ‘C’ doesn’t have home hours (“the district lies about it only being for academics”), and “Oh, he can talk?” and “Oh, he has extracurricular activities?” Finally, I had been pushed to the point of saying, “Look you don’t even know my son at all. He’s doing very well and we’re happy with his placement and his social activities.” So she walks off in her skin tight gym suit, clearly unsatisfied.

The last offense comes in the party room. Due to ‘C’s special diet, I made him chicken fingers and watermelon and a bottle of water and 2 special cupcakes to replace the pizza and soda and ice-cream cake being served. I’d give my right arm if he could eat those things, but sadly he can’t.

When I took out his food, all eyes were on us like I’d committed some grievious offense. Like I thought he was too good for pizza or something. It was so uncomfortable. We moved on to the cupcake faster than I’d planned just to keep peace and when I took it out, the Hostess Mom asks if its GF. So…thinking she really cared… I briefly explained that it was and it was also CF, SF and grain free and that ‘C’ had some serious dietary issues and unfortunately can’t eat anything that I don’t make from scratch. Up goes the painted-on eyebrow…

Instead of understanding, she says…again with the attitude…”Oh, I thought about doing the GF diet, but I really don’t think it works. Do you really think it works?” Now, these words…without an attitude… are welcome to me as I am happy to explain the diet and how its helped ‘C’ so much over the almost 4 years he’s been on it to anyone who really wants the info.

But when the query is not a positive and genuine request for information, but rather merely a venomous comment from a selfish and ignorant woman… who just got on my last nerve… my attitude changes…

“Well, SINCE YOU ASKED, yes I KNOW its worked for ‘C’ . He continues to make great strides and is so much healthier than he used to be. He sleeps well at night and can pay attention at school.  The diet is not for every child, of course. But… SINCE YOU ASKED… I am SURE it’d help ‘D’. By the look of his red cheeks and dark eye circles, he most definately has a food allergy.”

ZING!  Now go home and sleep with that guilt.

Sorry, I just had to rant. I can handle anyone who is honestly trying their best to help their child. I never preach to people about the diet or any other therapies we’ve tried with ‘C’, and only give advice when asked. Even when I believe strongly that a child looks or behaves like they may have a food allergy, I bite my tongue. I like to think that we all try to make the best decisions for our children.

My only gripe is with the people who put themselves and their needs before their children…especially the loud mouth ones who always have excuses not to try something that may benefit their child and who always blame everyone and everything else for why their child is not progressing.

And a sad note to close on was near the end of the party, when the birthday boy sat next to me and touched my face (touching people’s faces is a stim of his). I turned to him and said warmly and with a big smile “Hey, ‘D’, are you having fun at your birthday party. ‘C’ had a great time!” He smiled back at me. Then I look up at the woman standing on the other side of him (not his mom) and, looking at me like I am a child molester, she asks meanly right in front of  the birthday boy “Do you really think he even knows who you are? How does he know you ?”

Again amazed, I said “Well, yes, I do think he knows who I am. My son is in his class and I was just at the Thanksgiving feast in the classroom last week. So, yes I do think he remembers me.” And I looked back to ‘D’ with a smile. And he touched my face again.

Sometimes, there’s just too many JackAsses in the world.

Parent Member Perspective October 17, 2008

Posted by hopeauthority in Autism, Children, school, special needs.
Tags: , , , , , ,
1 comment so far

One of the best ways to put your own life in perspective is by being a parent member.

I volunteer about twice a month to be a parent member in the Special Education Dept. of my school district. After being trained for the position, you sit in on the annual CPSE and CSE meetings for other children in the special needs program. Hopefully, you will be able to help the parents…if they want your input… in their decision to either accept or reject the district’s recommendations regarding their children.

The obvious benefit… after helping others, of course… is that you get to know the administrators and become more comfortable in their presence (which will make you less nervous when your own child’s meeting comes along). You get to see what services other children are getting, so you have a better idea of what to expect for your own.

And, in the unspoken world of politics, you hope that on some level…if the situation is a close call…that they will be more inclined to be generous with the services when it comes to your own kid’s meeting.

One of the hardest things about these meetings, though, is reading and hearing about each of these special children’s particular challenges. When a child is “closer to typical” than yours…or is mainstreaming faster… it can be tough not to feel sorry for yourself and your child.  Yet, when the child has even more challenges than your own, it makes you count your blessings. And you can’t cry.

If your situation can accommodate it, consider volunteering to be a parent member in your own district. It’s like community service for our own special needs community.