Pancakes Gone Awry

Saving face (Reprise)

2012-02-14T19:57:00.005-06:00

I originally posted this back in 2010, but when I saw the Spin Cycle topic for this week, I couldn't resist re-posting.

There's a phenomenon in Asian culture called "saving face" which dictates that is enormously impolite to embarrass another person. People will go out of their way to avoid humiliating someone in public in Chinese culture. Typically, in Asia, people try not to laugh at others or make an embarrassing situation any more uncomfortable.

Before I went to Hong Kong to work as a missionary for my church, I received some training; we were taught some basic Cantonese language skills and Chinese culture and etiquette. Our teacher taught us about saving face and warned us to be careful, so we wouldn't offend anyone. "Especially be sure not to laugh at anyone in public, as harmless as the laughter might seem," the teacher warned.

I took this advice to heart and began my 18-month stint in one of the most amazing cities in the world. And I learned to really appreciate the differences and uniqueness of Asian culture.

One obvious difference between Americans and Chinese people is their stature. Typically, Chinese people are smaller framed than us Americans, and this difference was obvious in the bus seating. Bus seats that are supposed to seat three Chinese people leave really only enough room for one and a half American women, especially if those women don't happen to be anorexic fashion models. And the buses in Hong Kong are almost always crowded, so one is forced to squeeze into those seats regardless of how much more comfortable it would be to hog an entire seat yourself.

Riding a bus in Hong Kong was nothing like my experience with public transportation in Chicago. While the Chicago buses and trains were often very crowded, it wasn't too difficult to remain upright since they rarely took any turns. The bus route is a straight shot going from east to west. If you need to go south or north, you disembark and transfer to a different bus.

This is not so in Hong Kong. The bus routes snake all over the city taking wild turns and scaling mountains at breakneck speed. These double decker monstrosities are driven like they are contestants in the Indy 500. Still, the public transportation system there is amazingly efficient and by far, the best mode of transportation in the city. So, I spent a great deal of time on the double decker buses, trains and siu baas, which translated, means "small buses" or mini vans fitted with rows of seats.

One day, as usual, I embarked a bus with some friends. And as usual, the bus was somewhat crowded. I slipped into the seat next to Collette and tried to ignore the fact that an ample part of my rear end was dangling off the seat.

Because if it was one thing Collette and I had in common, it was that neither of us had the hips of a 13-year-old boy.

But, it was a quick ride to where we were going, so it didn't matter.

I chatted amiably with my friends when all of a sudden, the bus took an impossibly sharp turn without slowing down at all. I felt myself slipping off my precarious perch next to Collette. My arms flailed trying to find something solid that I could grab onto, but I only found air.

Collette, brave, loyal friend that she was, attempted to rescue me. She grabbed fruitlessly for my arm, but my sleeve slipped through her grasp.

As if in slow motion, I tumbled from the seat and remained airborne for what felt like several minutes. I finally landed uncermoniously in the aisle of the bus, at the feet of a Chinese businessman who looked down at me stoically.

And who then burst into laughter.

He was joined by just about every other person--both American and Chinese--on the bus.

Apparently, even Chinese people--who are so polite and anxious to help others save face--have their limits.

Can't really say that I blame them.

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This post brought to you by the Spin Cycle. For more embarrassing moments, go visit Second Blooming. You won't be sorry!

Job satisfaction

2012-01-26T20:02:00.006-06:00

For three short, but blissfully fulfilling years of my life, I had a cush job. I was showered with presents on a regular basis. I had foreign men fawning all over me. I ate the finest cuisine and attended soirees held in my honor. It was a life of excitement, romance and danger.

Foreign diplomat, you ask?

Nope, I was an ESL teacher in Chicago.

Not what you were expecting, was it?

This was pretty much the best job of my life.

The presents:

I received tons of gifts for every holiday and at the end of each semester. These were actually students who loved coming to class. And they appreciated my hard work! Sometimes I even received gifts just because: a bunch of flowers here, a plate of tamales there. These students were like the most attentive boyfriend in the world!

You may call me shallow and materialistic, but answer me this: Who among you could resist being showered with gifts? Who out there wouldn't have her heart melted at the gift of an enormous Tweety Bird stuffed animal? A Tweety who was wearing rollerblades and holding a rose? (It was Valentine's Day, after all.)

Foreign Men Fawning All Over Me:

There was Joel, a hot 19 year old who regularly tried to get my attention in class so he could flirt. One day, when I asked for a volunteer to use the word "plenty" in a sentence, Joel said, "Teacher, I have plenty love for you!"

And what red-blooded woman out there doesn't appreciate romantic marriage proposals from handsome, Hispanic men?

Okay, yeah, Marcus may have offered me $3,000 to marry him so he could get his green card, but that doesn't mean his love for me was any less genuine or passionate.

Finest Cuisine

Most of my students were Hispanic or Polish and they were all very generous. When they learned what a ~~pig, glutton, hefty eater~~ gourmand I was, many of my students brought me plates of delicious food. I was afloat in pierogi and tamales, mole and posole.

And when we had our end of the year parties? I was plied with horchata, tostadas, guacamole and three milk cake. I just drooled on my keyboard at the memories.

Danger and intrigue

You don't think teaching ESL is dangerous? Well, let me relate a story, then. My first semester, I taught an advanced ESL class and the final consisted of giving an oral presentation. One student, a dance teacher at his local community center, asked if he could have the children in his class come and perform. I was delighted at the opportunity to learn more about his culture.

The children came to class, adorable in their authentic Mexican garb, and they danced their hearts out.

While swinging machetes around their heads.

Yeah, I got in big trouble when the Dean heard about that one.

Adorable kids in authentic Mexican garb, sans machetes

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For more posts about ideal jobs, stop by the Spin Cycle at Gretchen's Second Blooming.

the power of friendship

2012-01-15T07:32:00.009-06:00

In second grade, after Sister Winifred warned my mother that I was too shy and in danger of becoming a social outcast, my mom staged an intervention. She sat me down and shared with me her experiences as a painfully shy girl. Mom encouraged me to seek out another girl who was quiet and looked in need of a friend and strike up a conversation.

And that's what I did, though it scared me almost speechless. And that's how I became friends with Jane, a wonderful girl who, though quiet, was delightfully funny and kind. Later still, I befriended Michelle and Jennifer and we formed our own little quirky club, sharing books, eating snacks and having our wacky preteen adventures.

If it weren't for my group of friends, I'm not sure how I would have handled the bullying I endured everyday through seventh grade. Most days, I came home crying over the things Sharon and Vicky said to me--the way they mocked my clothes, my hair, my glasses and my lack of makeup, among many things. These experiences solidified in my mind how very ugly and unattractive I was.

But one thing they never convinced me of: that I was undeserving of friends. Because I, I had this terrifically smart, staunchly loyal, and whimsically fun group of friends. Though we weren't in the popular group, I knew we were cool, because we always had a blast.

I believe in the healing power of friendship. I believe each and every child deserves and needs a good, loyal friend who will stand by him through anything. I believe that type of friend can give us courage to stand up against bullies (like I did in seventh grade when Paul Forrest was bullying my twin brother--a post for a different day). I believe those friends can give us hope to endure just about anything.

Which is why I have been so worried about my son. You see, Danny doesn't really have any friends at school. He never comes home talking about his buddies or asking if they could come over for a play date. And his autism makes him stand out so that sometimes other kids avoid him.

This is why I started our LEGO Club. These kids deserve friendship. And they need it.

They really need it: One 6-year-old boy, recently told his parents that all he wanted for his birthday was a friend.

A, also 6, told his mom that everyone at school hates him.

And S, who is 10, says she has no friends at school.

My Danny told me that making friends is really hard.

This? This is something that breaks my heart into tiny fragments of sadness. These kids are terrific: loyal and funny and smart as whips. They are fantastic! And they deserve acceptance and friendship. They may have difficulty connecting with others because of autism or ADHD or shyness or just because they happen to be different (like I was), but that makes them no less wonderful and in need of friendship.

I believe if our kids have good friends, they may be less likely to turn to drugs or alcohol or other self-harming behaviors. I believe it may prevent suicide and help with depression. One good solid friend may give our kids hope when things look bleak. At least that's what I hope for, anyway.

Because you know what? My LEGO Club kids are making friends:

On LEGO Club nights, S begs her mom to let her stay longer and play because "these are my real friends, mom! Don't you WANT me to have friends?!?!"

Danny often gets a touch weepy on the way home, because, "Mom, I'm going to miss my LEGO members! They're my friends!"

A said that she has the "best group ever!" and her group mate, J declared that "LEGO Club is awesome."

Best of all, my son told me that everyone at LEGO Club is his friend.

And that means more to me than a hundred glowing report cards. Because I believe wholeheartedly in the power of friendship.

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Visit the Spin Cycle at Second Blooming for more posts on issues people believe in

Nightmare on Pancake Street

2012-01-12T21:06:00.009-06:00

I writhe in pain as my teeth start breaking off in my mouth. I realize this is happening because I am clamping down on my teeth with such terrible force, but I can't seem to make myself stop. I try to relax my jaws, but nothing works, and I just lie there helplessly as tooth after tooth breaks off. I almost vomit as I run my tongue over the jagged remains of the teeth and I wonder what I can do to save them. Anguish washes over me as I realize all my teeth are gone.

Then, I wake up.

This is the one dream I have that is recurring. I don't have it often, but when I do, I'm shaken for the rest of the day.

Anything with teeth freaks me out. I dread dentist appointments with a fierce passion. I almost have a panic attack when they poke my teeth to find cavities. I have practiced more Lamaze breathing techniques at the dentist's office than during the births of all three of my children.

That scene in Marathon Man where the dentist drills Dustin Hoffman's teeth with no anesthetic horrifies me.

Which is why this particular dream is so nightmarish to me. And why it seems supremely unfair that I have it at least a couple times a year.

So, what could be worse than having a recurring nightmare about your worst fear?

Having that dream actually come true.

Which is exactly what happened to me one fine afternoon in college.

I was sitting in the hallway before Chinese class, chewing some gum when I heard a terrifying crack. When I felt something crunchy in my gum, I nearly lost my lunch.

I rushed to the bathroom to inspect my tooth, but everything appeared normal. I couldn't tell if anything had broken off or not, so I did what I normally do in very unpleasant situations. I pretended everything was hunky dory.

I was violently wrenched out of my comfortable state of denial when I heard another earsplitting crack during class. The gaping hole in molar mocked me as I sat in class swallowing down my sobs.

On the verge of hyperventilating, I tried to clear my thoughts, but I was overcome by panic. All I could think was that my nightmare was coming true. My teeth were cracking off one by one and there was nothing I could do to stop it.

Soon, my mouth would be filled with the jagged, splintered remains of my teeth, that I was sure there was no way to fix.

I didn't eat for days for fear that more of my teeth would crack off, leaving my nerves exposed and pulsing with pain.

My new dentist later informed me that my tooth broke because of a root canal that had been performed a few years back. Apparently, root canals can make the tooth become brittle and easily broken, which is why most dentists put a crown on it. Unfortunately, for whatever reason, my dentist hadn't informed me of this.

Still, even armed with this information, I am living with the unshakable certainty that my teeth are just waiting for the perfect moment to drive me into the pit of despair. Someday, they will revolt and start cracking off, leaving me with jagged, horrifying teeth that will cut my tongue and make strangers gape at me.

Just when I think I have put this incident behind me, I have that terrifying nightmare.

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For more posts on dreams that are surely far less macabre than this one, visit the Spin Cycle at its new home at Second Blooming!

"Little" Things

2012-01-09T09:01:00.002-06:00

Lisa over at Autism Wonderland has come up with the greatest idea. Every Monday, she is encouraging special needs parents to blog about some accomplishment their child has made recently. As special needs parents, we understand that the seemingly "small" accomplishments are not insignificant for our children. A milestone that might seem very mundane to a parent of kids without special needs, is in fact a huge thing for our kids.

I love this idea and am excited to join in Lisa's meme.

This week for us it was that Danny figured out how to ride a bike with no training wheels. And he did this entirely on his own! No pushing his bike and running behind him. No coaching or encouraging or bribing. Nope, my husband just took off the training wheels and all of a sudden, Danny was riding his bike like a pro.

It was a miracle, especially in light of the many motor planning difficulties Danny has struggled with! To put this in perspective for you, Danny was very late in learning how to pedal a Big Wheels bike. It then took him months to be able to steer and pedal at the same time. He finally graduated to a bike with training wheels. Though he is already 8 years old, we assumed it would take many more months and much help and coaching before he could master this skill. After all, so many of Danny's milestones required months of direct instruction from us.

So, what about you? What has your child done recently that has made you grin with pride? Make sure to visit Autism Wonderland, too, to see more posts about these heartwarming accomplishments. Let's celebrate together!

Approval

2012-01-06T08:18:00.000-06:00

I seek the approval of others. In fact, I put waaaaay too much emphasis on others' opinions of what I am doing, at times. I have worked on it a lot, with therapy and lots of self help books, but this drive for approval is still there. Still lurking, at times rearing its ugly head unexpectedly.

I realized this after I recently sent out an email to all my friends and family containing the youtube video about our LEGO Club. Let me preface this by saying that this LEGO Club is my pet project. It means so much to me because it is helping my son develop needed social skills. Every time I think of LEGO Club it gives me warm fuzzies, because I know it's what I am supposed to be working on right now. I know it's helping kids and it feels so good to finally feel like I am actually helping Danny in a productive way, when it comes to social skills. And I feel so empowered because instead of sitting around worrying and complaining, I actually did something about a need in our area. It feels good.

So, we made this video to show Pepsi how their money helped us. I sent it out to people to thank them for all their votes and to let them know it made an enormous impact in our lives.

Many people wrote me, including some I barely know. They expressed their excitement for the program.

Still, it wasn't enough, because there are certain people who are very close to me who never wrote me. At least one of those people actually told me in a phone call that she hasn't even bothered to watch it. She's too busy.

This really hurt my feelings. Mostly, because these particular people do this a lot. They barely seemed to bat an eye when I told them I was being published in two books this year. None of them asked where they could buy a copy. They have also at times actually mocked my blog, so chances are, they probably aren't reading this. But, this is just how they operate. They say mocking things in an attempt to be funny and because I hate conflict, I rarely stand up for myself.

Because I am so close to them, I crave their approval more than anyone else's. And I think because they rarely mete it out, I'm often left feeling bereft.

These people probably have no idea that I feel they don't give me approval. They probably don't think about it much at all. I know they don't do it on purpose at all; they probably think that when they give me advice about a project I am working on that this is sufficient.

I recently read in some self help book that approval is totally unnecessary. Having or not having someone's approval in no way affects the quality of my life. Even if someone couldn't give a crap about my precious LEGO Club, who cares? It doesn't affect the club in any way at all. So, why do I care so much?

This is something I really need to get a grip on. But how? How do I get to the point that I don't care about other people's approval?

Any advice? Because I think this will be my New Year's resolution: stop seeking approval from others, especially those who just seem incapable of giving me what I crave.

My own approval should be enough for me, shouldn't it?

We're in the news!

2011-12-12T11:35:00.004-06:00

More than just a toy

Lego Social Club helps children learn social skills, patience and

conflict resolution

by Samantha Newburn, Effingham Daily News

11-year-old Nate Winnett of Casey, left, and 9-year-old Isaiah Rubin of Effingham work together to find some specific Lego pieces at the Effingham Lego Social Club Friday in Effingham.

Eight-year-old Danny Hooper of Effingham, left, and 5-year-old Alexziah Hagler of St. Elmo work on a Lego set together Friday at the Effingham Lego Social Club, where children can work on social skills in a safe, non-judgmental environment.

EFFINGHAM — With Lego pieces strewn across tables and piled in buckets, children grabbing for reds or blues and digging through piles for coveted wheels, it looks as though it’s absolute chaos in a small church classroom.

But really, children with autism, Sensory Processing Disorder or ADHD are learning how to interact with one another, practice patience and master conflict resolution, all while creating their own Lego masterpieces.

Some children are there just to make friends and learn social skills, not realizing they’re practicing tolerance, only that they’re having fun playing with an endless amount of Lego pieces.

But they’re actually participating in the Effingham Lego Social Club, which began in September by Effingham resident Patty Hooper, whose 8-year-old son, Danny, has high-functioning autism with his biggest weakness being social skills. Patty and her husband, Bil, were traveling to and from Charleston for Danny to participate in a social skills group through The Autism Program of Illinois.......

'Twas the Night Before an SPD Christmas

2011-12-03T16:23:00.003-06:00

This poem was written last December, but I love it so much, I just had to re-post. As Hartley said last year, we hope it becomes an SPD Christmas classic! Thanks again to my husband Bil who took my idea and ran with it and Hartley who helped fill in what was missing. Enjoy.

'Twas the Night Before an SPD Christmas

By Patty, her husband and Hartley

'Twas the night before Christmas, when all through the house

Not a creature was stirring, not even a mouse;

The snack packs, arranged on the counter with care,

In hopes, on our journey we’d be well prepared.

The children were nestled all snug in their beds,

While visions of Chex Mix danced in their heads;

Ma in her hoodie, and I in my sweats,

were to put away pillows and therapy nets.

When in the back room there arose such a clatter,

I ran at full sprint to see what was the matter.

When, what to my wondering eyes should appear,

But a puzzled old man buried up to his ears,

(In scooter boards, swings, and small colored spheres.)

Poor devil had brushed ‘gainst our therapy stash,

When it came down around him it made such a crash!

He recovered with grace, so lively and quick,

That I knew in a moment it must be St. Nick.

"What is all this stuff that you people collect?

Are you Circus performers?”--the old man interjects—

"I came here with toys, for the boys and your girl

But looking around I think ‘what in the world?’

This room that would normally have children’s stuff

Is packed to the gills with equipment enough

To start your own CIA torturing session!

Tell me I’m wrong and you’re not!” (oh good heavens!)

My wife and I snickered and held out our hands,

And reassured Nick we’d had no evil plans.

“Our kids have a condition; they have a hard time—

They yell when it smells and they climb up the blinds.

At first we didn’t know just what to think,

But eventually found an OT who could speak

To their curious quirks and aversion to crowds

And toothpaste and barbers and things that are loud.”

St. Nick answered back, "So, then they misbehave?"

We answered with, "Actually, no, they're really quite brave.

Kids with SPD deal with all kinds of things,

Like big hugs, itchy tags, and loud alarm rings,

Or can't get enough and spend hours on swings.

You see, our children are sensitive to all that life brings.

Yet do very well with a consistent routine.

But it isn't bad behavior you see when they yell,

But rather a problem that is hard to tell.

Our kids work hard, at therapy and play

Spending hours and hours and hours each day

Trying to find ways to control their bodies,

And working hard not to look naughty.

But what they need is understanding, and some help along the way,

Because our kids amaze us, each and every day."

The old man looked surprised, at what we had shared,

Small children with parents who did what we dared.

To seek out help, and look far and wide,

Turning over each rock, letting nothing hide.

Until we found what they needed, what would make them feel whole,

For families like ours St. Nick couldn't leave coal.

So, Nick with the bundle of toys on his back,

Frowned and thought, then sullenly sat,

(And mumbled to himself which took us aback):

“I’m quite at a loss, I don’t know what to give

To children who struggle while trying to live

In a world that is already noisy and bumpy

And twisty and scary and thorny and jumpy—"

Then he rifled again through his sack and reposed

While he tugged at his beard, and scratched at his nose

(And he huffed and he chuffed and he shifted his clothes)

Then with a wink of his eye and a twist of his head,

He drew the sack wide till the seams popped some threads,

Dug in his hand and pulled out a small box

(With very small writing) --but before he could talk

He ungloved his hand to wipe soot from his eye

(Or was it a tear? Or perhaps a sty?)

So he bid us farewell, and went back to his work,

He filled all the stockings; then turned with a jerk,

And laying his finger aside of his nose,

While giving a nod, up the chimney he rose.

I said to Ma, as she turned towards the tree,

"Who knows what St. Nick left us, we'll have to see.

Yet we gave him something great, I say with fairness,

We sent him on his way with a new found Awareness."

Which is a gift to our kids, in a different kind of way,

Because when all understand SPD, that will be a new day!"

Now we looked o’er the copious gifts left behind,

The tiny collages of paper and twine,

The moon-sparkled ribbons, the plastic that shined,

We spied the small box for the children to find.

“The best gifts can be pretty small--” Ma started then said,

“But our best gifts of all are still snuggled in bed.”

This Holiday season, you SPD Fathers and Mothers,

You cousins and nephews and sisters and brothers,

When you wake in the morning and throw off the covers

(And tear into presents while everyone hovers)

Do you think ‘Will I get what I wanted this year?’

Or realize ‘all that you need is right here!’

You might think it’s corny, but surely remember

Your children are better than any gift in December.

And in case you were wondering what Santa had stashed,

It may not surprise you, it might make you laugh,

“What did the children receive?” you may ask?

Well, when the snowy chips are down…

…Even Santa gives cash.

Merry Christmas to all and to all

a SENSATIONAL night!

Behavior Solutions for the Inclusive Classroom

2011-12-01T09:36:00.001-06:00

Behavior Solutions for the Inclusive Classroom by Beth Aune, OTR/L and Beth Burt & Peter Gennaro is fantastic. I cannot say enough great things about this book!

On the cover it says, "See a Behavior....Look it up!" and that is exactly how you use this book. It's almost like an encyclopedia of behaviors one might see in a classroom along with tips on how to deal with them. This book covers everything from "Taking off Shoes" to "Poor Handwriting." The authors explain why the behaviors may be happening and then they offer solutions to the problems.

Let's take a look at one chapter together. "Not Attending/Off Task or Not Following Directions" is my favorite section, perhaps because this is a challenge my own son faces on a daily basis. I like this chapter, because the authors explain that this is not necessarily something a child is doing on purpose. They explain that there are many factors in focusing and being able to pay attention: ADD, sensory overload, auditory processing, etc. I don't think many teachers are aware of this and I find it extremely helpful that the authors point this out to teachers. The authors then offer several possible solutions, such as "provide a quiet space where they can regroup," "Use squeezeballs," etc.

As a former high school teacher, I can tell you that I would have given a lot more than the cost of the books to have this wonderful resource. It's definitely not just for special ed teachers; every single educational professional who works with kids could benefit from these books. This is why I am recommending that parents give these books as Christmas gifts to their kids' teachers.

Rather than bombarding teachers with more apple ornaments, why not give them a tool that will be useful for years to come? Again, as a teacher, I would have preferred this sort of gift over the teacher mugs and even the chocolates.

And, great news for you!

Future Horizons Publishing is offering a special deal to my readers. If you use my code, you will get free shipping--no matter how much you spend--and 15% off your order. You can use this code anytime you shop on Future Horizons and it applies to all supplies, books and even conferences. The code is PH.

So feel free to look around their shop. They have some of the best books on SPD, autism and other special needs out there. Heck, maybe even buy yourself an early Christmas gift. You deserve it!

The Cult of Lego

2011-11-24T10:00:00.001-06:00

"This fascinating look at the world of devoted LEGO fans deserves a place on the bookshelf of anyone who's ever played with LEGO bricks."

Chris Anderson, editor in chief Wired

Yes, this is a recreation of Starry Night in LEGO blocks. How awesome is that? This is just one of the amazing pictures in The Cult of LEGO.

If you've been around my blog for very long, you may have noticed that my oldest son is absolutely obsessed with LEGO blocks. When he's not playing with LEGO sets, he's reading LEGO books or magazines. The rest of the time, he spends playing LEGO Universe online. The kid's nuts for LEGO.

The thing is, his obsession is rubbing off on me.

This summer I started a LEGO social skills club for kids on the spectrum. Spending thousands of dollars on LEGO products made me giddy with delight. I browsed lego.com with Danny, making lists of sets that would be cool to buy. I had the LEGO Club kids vote on which sets to order and then when the packages arrived, I eagerly opened them like a kid on Christmas.

And watching these amazing kids play with LEGO sets and learn social skills has only deepened my loyalty to these terrific toys!

So, of course, I jumped at the chance to review this book, The Cult of LEGO, which covers every LEGO-related topic imaginable.

When the book arrived in the mail, I was anxious to get started reading it. The problem is, so was Danny. He saw the book and immediately absconded with it.

With pictures like this, who can blame him? Here's a recreation of the Dome of the Rock in Jerusalem.

Though the book is really written for adults, it is filled with amazing, color photos of all manner of LEGO creations. Danny and I sat for about 45 minutes poring over the photos of recreations of the Mona Lisa, Easter Island and the Acropolis, all made out of LEGO. The minifigs section made Bil and I laugh as we discovered historical figures, like Gandhi and Mao Zedong in minifig form.

And that doesn't even cover the writing. The writers cover everything from the history of LEGO to Adult Fans of LEGO (or AFOLs). You will learn about LEGO comics and robotics clubs for kids, along with conventions and LEGO clubs for adults. And the history of LEGO was especially fascinating to me. Did you know that one of the first LEGO toys was a wooden duck?

It probably won't surprise you that my favorite chapter of this wonderful book is in the "Serious LEGO" chapter and it is called "Autism Therapy." The authors explain how many groups are using LEGO bricks to help kids with autism learn social skills, just like our little group. The authors even mention the Center for Neurological and Neurodevelopmental Health, where I received my training. The CNNH has been offering this LEGO-based social therapy for 15 years.

This is the best coffee table book around. It's smart and funny and colorful. The book appeals to LEGO fans of all ages. An added bonus is that it is extremely well-written.

I highly recommend The Cult of Lego and cannot say enough good things about the book. I'd lend you my copy, but Danny and I are too busy rereading it. Consider getting your own--you won't regret it!

How to spend thousands on lego.com

2011-11-15T01:07:00.005-06:00

December is the deadline for using the Pepsi Refresh grant that I won back in May. It was frighteningly easy to spend thousands of dollars of someone else's money, but now I have lots of paperwork to fill out regarding the use of the grant money.

One question on the report asks me to "describe the social impact of the project."

To answer that question, Bil made this video. Check it out:

"The History of My Body" review and give away

2011-11-01T19:49:00.005-05:00

The History of My Body by Sharon Heath is the story of Fleur, an 11-year-old girl who is charmingly unusual. Her very literal way of looking at the world and her possibly autistic quirks (hand flapping, pinching, and preoccupation with the "void") make Fleur one of the most unforgettable heroines I've encountered in a long time.

Fleur is a fascinating combination of contradictions; she is a girl who has an imaginary uncle, yet who understands physics. And though she is extremely naive, Fleur seems to understand people at a level most don't ever comprehend. Perceptive, warm-hearted, and courageous, Fleur is infinitely likable.

The History of My Body is actually quite difficult to describe and categorize; the plot is intricate and winding. It is full of relationships and the people who Fleur touches with her charm, honesty and sincerity.

Heath is an amazing writer, who captures Fleur's unusual way of thinking. The book is sometimes surreal and stream of conscious, and always well written. You really feel like you are inside young Fleur's head.

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I happen to have one copy of The History of My Body by Sharon Heath to give away to one reader. If you want to enter the give away, all you have to do is leave a comment for this post. Please make sure you leave your name and email address, so I can contact you.

The give away ends on Friday, November 11th at midnight. Good luck!

baptism, autism-style

2011-10-23T22:36:00.008-05:00

I don't talk about it much on my blog, but I am a member of the Church of Jesus Christ of Latter-day Saints. My religious beliefs mean a lot to me and I try to pass them on to my kids as best as I can.

In my church children are baptized at the age of 8, and I have been looking forward to Danny's baptism since he was a baby.

Of course, when he was a baby, I had no idea that Danny had autism and that this would make many aspects of his life difficult for him.

We have talked about baptism with the kids often, and in the past, Danny always seemed excited at the prospect of his 8th birthday and subsequent baptism. Around January, we discussed it more specifically in reference to him being baptized in July.

His reaction surprised me. Danny broke down crying, which is very atypical of him. When I pressed him for reasons, he just got frustrated with me and spouted some gibberish. I had no idea whatsoever what was causing his angst.

After this episode any time anyone mentioned the word "baptism" Danny would cry and storm out of the room.

I prayed about it and agonized over it. What was causing his tears? Was he not ready for this step? What should I do?

I decided to drop the subject. Obviously, for whatever reason, he wasn't ready. I knew if I kept pursuing the topic I would just be causing more anxiety and frustration for him. So we would give him time and space and just see what happened.

The problem was, my daughter continued to bring up the subject, repeatedly. As soon as the word "baptism" was uttered, I would frantically launch into damage control mode, murmuring reassurances to Danny while focusing my stink eye with laser like precision at Charlotte. I told her to stop talking about it, but that just seemed to make it worse. And no matter how much I reassured Danny that he didn't have to get baptized, he would still break down, crying. After each episode I was even more confused about the source of his angst.

One night when Danny was enjoying a bath, Charlotte yet again mentioned baptism. While I tried not to lose my temper with Charlotte, I noticed that Danny was not crying. I decided to take advantage of this rare calm and ask him cautiously why the mention of baptism bothered him so much. Danny looked me in the eye and said that he was scared to be dunked under the water.

I was flabbergasted. Not about the water, because that seemed like a very reasonable fear. No, what astounded me was that he had so clearly and directly communicated his fears to me. This is not a normal occurrence for Danny. So often his feelings seem to muck up his communication and the more upset/excited/happy/angry he might be, the more difficulty he has retrieving words.

Another surprise was that once Danny told me about his fear of dunking, he continued to play calmly in the bath. No tears, no anger, and no stomping off. He didn't even repeat his catchphrase, "Mom, I just don't want to talk about it!"

I was disappointed that Danny's baptism would have to be postponed indefinitely, and I wondered if he'd ever be ready to take that spiritual step. But I was ecstatic at his ability to communicate his feelings to me. It felt like a major accomplishment, one I cherished and mulled over for weeks to come.

Two months later, after attending the baptism of a friend, Danny approached me and announced, "I should be getting baptized soon. I want to get baptized!"

Excited, but wary, I let the subject drop for the moment, fearing that Danny had just been swept up in his friend's festivities.

But the next day, Danny insisted that he wanted to get baptized too.

So, we started planning.

Typically, people invite most of the church members and all their family members to these functions, which end up being pretty big and lively parties. Bil and I had already decided we would simplify Danny's baptism service and shorten it in keeping with Dan's attention span. When I asked him who he wanted to invite, Danny was surprisingly definite. Aside from his grandparents and aunt, Danny only wanted to invite one family from church.

My vision had been a big party after the baptism, full of all my friends, all the people who have been part of our lives here: the kids' Sunday school teachers, their babysitters, my good friends. But, that was not to be. Instead, I had to inform all those people that they were not invited to the baptism.

Because this is Danny's day and he should have it exactly how he wants it.

I cannot begin to explain how much all of this means to me. I am, of course, thrilled that he has decided to get baptized. I want him to have a relationship with God and would love for him to stay active in our church.

But there's more than that. I am so excited that Danny was able to express his fears to me.

I am also delighted that Danny had such a definite opinion on who he wanted to attend the baptism. He made several comments that told me that he is beginning to understand his limits sensory-wise. He recognized that a small group would be much more enjoyable for him and so he stood his ground. I am really proud of him. And I am excited and hopeful for the future. If Danny was able to express his fears in this incident, who knows what the future will hold?

Baptism is symbolic of a new birth, spiritually speaking, and I can't think of a more apt analogy to what has been happening with Danny in other areas of his life.

For whatever reason, in the last several months, a new Danny has been emerging, a kid who is opening up to me, showing me a side of himself I have rarely been privy to. He has been sharing his feelings and snuggling with me, conversing with his sister and demonstrating unprecedented levels of empathy. For the first time in his life, my son has told me he loves me all on his own!

It feels like I am getting to know a whole other layer of this amazing, fantastic kid, a side I have only seen glimpses of in the past.

And I am loving every minute of it!

Rules are made to be broken

2011-10-16T16:42:00.001-05:00

I have always been one of those goody two-shoes who follows all the rules. It's not so much because I believe in the rules. It's more that I have this fear of getting caught, of rocking the boat, of somehow getting in trouble. I never once ditched school as a teen, because I was so afraid of getting caught.

Now that I am older, I still follow the rules, mostly. I show up when I say I'll be somewhere. I am an upstanding citizen--my speeding tendencies notwithstanding.

I knew when I had kids that my family would have rules. I would teach my kids to follow those rules, just as my parents taught me. In fact, I assumed most of my parents' rules would become mine once I had kids. For example, I always assumed my kids would eat what I made for dinner. No way would I be one of those schmucks who makes several meals, trying to please each of her kids.

No short order cook for me.

Yeah, the laugh's on me.

Now I have kids--kids with SPD--and many of my childhood rules just don't work for my family. I guess you could say my kids have taught me to loosen up and break the rules from time to time.

Check it out:

1) Don't wear pajamas in public.

PJs: they're not just for sleeping anymore!

Danny would live in his pajamas if he could.

2) No more monkeys jumping on the bed.

Jumping on the bed is a family sport. All in the name of getting in that good deep pressure.

3) No playing with your food.

Mmmm....tactile fun with butter!

Get it? Playing with your food? See, he's playing with canned food. Oh, alright, not as funny as I thought.

4) Avoid messes.

Mud. Mother Nature's perfect toy!

5) Sleep in your bed. Truth be told, I don't remember the last time my kids slept in their beds.

Beds are for suckers. Tents = way more fun, especially when chock full of blankets and stuffed animals.

6) No swinging, playing ball, riding a bike or roughhousing in the house. That includes trampoline jumping, of course!

Swings, glorious, swings! Our house is so popular with the neighborhood kids. And ever since we discovered my son has SPD, rough housing has become one of our favorite family pastimes.

7) No covering yourselves from head to toe in shaving cream. (Well, okay, I admit, this rule never occurred to me until after we had already broken it. But I assume most mothers, if given the choice, would outlaw the use of shaving cream in this manner, but what do they know, right?)

Who says Sensory Processing Disorder can't be fun?

How about you? What 'rules' get disregarded in your home for the sake of well-regulated senses?

Firsts

2011-10-12T08:58:00.007-05:00

All moms remember their kids' firsts, right? First word, first step, first day of school. Each of these moments is special to a mother. She marks each milestone in her heart, mentally taking a picture of how her child looks and acts.

My firstborn had great difficulty with many of his firsts. He walked and crawled on schedule, but talking took so much longer. Each word he learned took hours of painstaking instruction and repetition.

Because Danny has Sensory Processing Disorder and Autism, there are many struggles he has that other kids don't. He's not mentally impaired, but has several processing problems which makes things, like formulating sentences, extra hard for him. So many skills that come naturally for most kids take practice and therapy for Danny to learn.

Because of these difficulties, each time Danny reached a milestones it was like a small, precious miracle to me. And this is probably the reason why some of the "firsts" that I cherish are not the typical ones you would find in a baby book.

~~First time he left the public pool without having a meltdown.

The summer when Danny was almost three, we bought a pass to our public pool. Dan absolutely loved the water, but hated when we had to get out for the scheduled life guard breaks. And heaven forbid we actually left the pool to go home. The kid screamed and flailed so much that I was scared I'd be reported for kidnapping. Add to that the fact that I was about 6 months pregnant with Charlotte and I almost decided

to quit going to the pool altogether.

Instead, we made up our very first picture schedule illustrating all the steps we needed to take to get to the pool. We added in pictures representing breaks and leaving, and we showed Danny that if he cooperated when we left, he would be rewarded with a Baby Einstein video.

Within a week, Danny was leaving the pool with nary a complaint, and I was practically weeping with relief. This was not just the first time Danny left the pool without a meltdown. It was also the first time we were able to successfully communicate and correct a behavior problem. I can't tell you how hopeful that made me.

~~First time he told me he was thirsty

Like I said, Danny took a long time to start talking. Even once he did learn some words, it took him a remarkably long time to communicate certain needs. Bil and I looked at each other in astonishment when Danny told me he was thirsty for the first time.

~~First real conversation

When Danny was 4, I went on a field trip with his class. That night, I snuggled in bed with Danny and started talking about the trip to the farm. Before this incident, Danny would just listen to me as I talked; it wasn't ever much of an interaction. If he interjected anything, it was most often off topic.

This night was different, though. Danny actually talked to me about the peacocks and corrected me when I said we saw three of them. Then, he talked a bit about the ducklings, his favorite part of the field trip. I had so much fun on that trip with Danny, but my favorite part was talking to him in his bed. Getting a glimpse into his thoughts and feelings was miraculous. And it left me feeling hopeful that someday I would have a full-fledged conversation with my son.

Other less dramatic, but no less exciting milestones:

~~The first time Danny snuggled with me on his own

~~The first time he told me he loved me

~~The first time he ate a grilled cheese sandwich and a hamburger

~~The first time Danny let us cut his hair with the clippers (last week!)

~~The first time he was able to pedal his tricycle while steering

I hate that Danny has to work and struggle so much in order to master many skills. I wish I could make it all easier for him. But if there is one blessing that comes from these struggles it's that I don't take any of his accomplishments for granted.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

For more posts on "firsts" check out the Spin Cycle, sponsored by the wonderful Jen over at Sprite's Keeper.

It's the Great Pumpkin

2011-10-10T16:30:00.008-05:00

I've been a bit stressed lately. Stressed about Danny's school situation (he's struggling with learning and getting decent grades and focusing), stressed about Tommy (who screams dozens and dozens of times a day. I wonder if this is a behavior problem or something more sinister, like the "A" word), and stressed about money and how to make it stretch just a bit further.

When I realized that we had a four-day weekend coming up for the kids, I decided that we needed to take one day and just have fun as a family. So, we went to this amazing pumpkin patch about an hour from our town. And here is what we did:

Tommy got filthy rolling around in the dirt with his Thomas trains.

Rainbow of gourds

This outing was hugely successful and full of tons of popcorn, lemon shakeups and ice cream. And it was worth every dime we spent to spend some time together that involved no therapy, no homework and no worries about autism or SPD!

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Click here for more posts about family life.

Chalk Line review

2011-10-06T11:21:00.003-05:00

Chalk Line opens with Chief of Detectives, Ben Gallagher picking his younger brother up from prison after a 10-year stay. The same day, the brothers discover the body of Dayton Slaughter, their lifelong family friend and father figure. Before he can be dismissed from the case because of his personal involvement, Ben races to solve the mystery.

As Ben struggles to unravel the mystery of who murdered Dayton, he uncovers more questions than answers--questions that could rock his family to its core. Ben is conflicted between his determination to protect his family and his desire to find the killer of the only father he's ever known.

The investigation takes Ben into his family's past and across state lines, as he searches for information. There are many twists and turns as Ben tries to get those close to him to divulge information pertinent to the case. Ben suspects someone close to him might be responsible for the crime and he struggles with his responsibility as a detective and his duty for his family.

Chalk Line has a distinct film noir feel to it, reminding me of some of the great classic detective movies, like Laura and Bogart's Maltese Falcon, though the book is set in modern times.

LaRocque's debut novel is one that is intelligent and suspenseful. It is also exceptionally well written with complex, interesting, and believable characters.

If you like detective novels with smart and colorful characters and fantastic writing, Chalk Line is the book for you!

I don't like who I'm becoming

2011-10-05T09:08:00.006-05:00

We had a really, really horrible morning today. It started off great; everyone woke up a bit early, so I had plenty of time to make lunches, feed kids breakfast, and even snuggle with the kids.

Then all hell broke loose and Charlotte just lost it. Completely and utterly lost it.

And to be honest, so did I.

She was still crying when I pulled up to her school, and she wouldn't leave the van. She kept saying she would miss me and she wanted to stay home. Charlotte adores school. The only reason for her outburst was that I had yelled at her this morning.

Repeatedly.

Like I said, we had a really bad morning, one where because Charlotte wouldn't get dressed, we were running late. Not that this excuses my yelling, but I've seriously been at my wits' end with Tommy. I have no extra patience left over for anything the other two might throw at me.

So, I left Charlotte at school crying and wailing that she wanted to stay with me.

And I cried the whole way to the gas station.

As I drove, I spotted two women walking together, obviously enjoying the beautiful weather and the chance to socialize while exercising.

A wave of envy washed over me, and it was so powerful it almost morphed into hatred. At that moment, I would have given almost anything to be so unencumbered by kids as these two women. And to see others enjoy a privilege that I so desperately longed for made me very angry at the women, though strangers to me.

My feelings shocked me. I try very hard not to entertain feelings of envy or jealousy. Why allow myself to long for things others have? That just leaves me feeling bitter and angry. And I hate that victim mentality. It does nothing but alienate others and leave you miserable.

Besides, I have plenty of wonderful things in my life, things to be grateful for.

Still, this morning as I drove around, I was overcome with feelings of envy and anger towards so many nameless, faceless people. I hated those who had easy kids, kids who had no problems in school or in socializing, kids who didn't melt down because I made them change clothes into something more appropriate for the weather. I hated people who got time off from their kids every single day. The parents who are wealthy enough to employ a nanny even though the mom stays home? Yeah, I hated them.

People who regularly get breaks because they have family or friends nearby who watch their kids? Yep, angry at them.

Those who have so much money they don't know what to do with it when I am worried about how to pay for important therapy for the kids? So resentful of them.

Families who have never even heard the words "autism" or "Sensory Processing Disorder" uttered except maybe on a public service announcement? Can't stand them.

I know my anger is misplaced. And I really feel uncomfortable with these feelings. Because if the truth be told, I'm not really angry at all those people in the world who supposedly have things easier than me.

No, I'm angry at myself. I hate that I yelled at Charlotte and upset her so much this morning. I hate that I spanked Tommy yesterday because I just couldn't stand the screaming one more minute. I hate that I just can't seem to handle anything anymore.

It frustrates me that I never have anything left over for Bil by the end of the day, and I feel terrible that I have become so resentful of adults who want or need anything from me. I have nothing left to give anyone, not even myself.

I never wanted to become one of those bitter women who spend all their time wishing their lives were different, all the while missing the blessings staring them in the face.

But it looks like I'm starting to become that very woman.

If you give an SPD Kid a Pancake....

2011-10-02T12:21:00.001-05:00

In honor of Sensory Processing Disorder Awareness month.....

If you give an SPD kid a pancake, he'll probably ask you for some syrup to go with it. When you give him the syrup, he might spill some on the table and begin playing with it. When you see the mess he has made all over the table, you'll realize that he needs some tactile input, so you'll pull out your stash of dry rice and beans. You'll have to wash his hands so he doesn't get everything all sticky. He will scream bloody murder when you wipe his mouth and hands.

After covering your floor in beans and rice he might break into your cabinets when you're not looking and pour an entire box of cornstarch on the floor. While dancing in the cornstarch, he will raise up clouds that will impair your vision.

This is when you might decide he needs to play in the sandbox, so you'll have to take him to the park. At the park, he'll accidentally sit in a puddle and will scream until you manage to locate some extra pants for him to wear.

When you change his pants, he might want to run around naked for a while, even though you say he can't. As you try to catch him, you might notice other parents giving you nasty looks. Those nasty looks will be repeated when your kiddo runs into some kids to get some deep pressure. It feels good to him, so he doesn't understand why the kid he ran into is crying.

Next, your SPD kid will decide that he wants to go on the merry-go-round, but as soon as someone pushes it and it starts spinning, he'll fling himself off and bloody his knees. Once you clean him up, he'll probably head to the swings. Swinging for upwards of a half hour should calm him down.

As it's nearing lunchtime, you will warn your SPD kid that it's almost time to head home for lunch. You might give him warnings at 15, 10 and 5 minutes, but he will still probably act surprised when it's time to leave. He may throw a tantrum and refuse to get in the car.

Bribing him with extra computer time might get him to cooperate. Then again, it might not.

By this time, you're probably worn out, so you decide to get lunch from a fast food joint. Once inside McDonald's your SPD kid might freak out and cover his ears when the timer for the French fries goes off. As you proceed to your table, he might accidentally bump into other tables because of his poor body awareness.

Once at your booth, he will probably have to be reminded to sit on his bottom a few dozen times. Instead, he will repeatedly stand on his seat and jump. If you happened to order him the wrong number of chicken nuggets or the wrong drink, you can bet all hell will break loose.

Because it's so loud and distracting at the restaurant, he probably won't eat a whole lot, and most likely you will wonder why you didn't just go through the drive thru.

When you finally get home, exhausted, you will plop him in front of a Thomas the Train video so you can have a minute's rest. When you hear him jumping on the couch, you rouse yourself to turn off the TV. You realize it is almost time for therapy, so you start to get him ready to leave.

Since your SPD kid didn't eat much lunch, he will declare that he is hungry. You offer him every snack you can think of: applesauce through a straw, pretzels, apples and popcorn for crunching, but he insists on a pancake--the only thing your kid has willingly and happily eaten all week long.

And chances are......

If you give your SPD kid a pancake,

he'll probably ask for some syrup to go with it.

How to Lose your Child at a Kindergarten Open House

2011-09-24T07:11:00.001-05:00

The first day of school started out innocently enough. Charlotte was dying of excitement even though it was just a straight forward informational meeting where the kids got to meet their teachers.

Little did I know what was about to enfold.

I finally made it to the school after parking about a quarter of a mile away. We found our way to Mrs. M's class and deposited all the school supplies. We were then herded into the all-purpose room to be instructed on the ins and outs of the school's discipline system. The principal had all the kids sit in the front of the room so the parents could park comfortably on the benches.

As soon as they turned off the lights for the powerpoint presentation (yes, a power point on playground behavior. It was riveting) Tom started yelling, "Hey, turn on the lights! The lights! The lights!" so I had to take him out the back door. Unfortunately, since Charlotte was all the way in the front of the room, I couldn't give her instructions on where to meet me after the presentation, unless I wanted to make an even bigger spectacle of myself than Tommy already had.

Even as I exited the hall, I knew this was not going to end well.

I spent the rest of the presentation standing by the back door of the auditorium trying to keep Tommy from ripping cutesy kindergarten decor off the walls. As soon as the presentation ended, there was a stampede for the doors. I tried to enter against the tide of parents who were desperate to leave, but by the time I got back in, there was no sign at all of my daughter.

I rushed back out and around the hall to Char's classroom, to no avail. Charlotte was nowhere to be found. Frantically, I ran through the school, while carrying a very heavy and wiggly toddler, trying to find my sweet girl.

It didn't help that there were hundreds of kindergarteners in the throngs of people leaving the school; I couldn't spot my child in the huge lingering group no matter how hard I looked. As I tried to stay calm, I couldn't help but note how unwise this setup was. Separating kids from their parents seemed like an obviously bad idea to me.

Panicking, I finally caught sight of Danny's old speech therapist and told her I had lost my kid. The principal heard and made an announcement over the PA system.

Still no sign of my darling girl.

My heart started racing as I recalled every single episode of Law and Order SVU that I have ever watched, thinking that a school open house would be the ideal place for a pedophile to find his latest victim. I was convinced he had snatched Charlotte and was planning on stashing her in his backyard tent making her his love slave for the next 20 years, like JayCee Dugard. I wondered if I had taught Char enough survival skills for her to escape from her captor's evil clutches.

I envisioned my life without my darling daughter, who is so wonderful and fanciful. How in the world would I ever live with myself knowing my carelessness had led to her demise? How would Bil ever forgive me? How would we ever find her?

As I tried to staunch the onslaught of catastrophic thoughts, the likes of which would have made great script material for my favorite crime show, it occurred to me that Charlotte might not have been kidnapped. Instead, perhaps she was wandering the streets about to be run over by a giant SUV. Envisioning her lifeless and bloody body lying in the street almost gave me a panic attack.

A dad who had heard the commotion volunteered to go to my car to see if Charlotte had gone there looking for me. Grateful, I deposited Tommy on the floor as I waited, pacing in the lobby, praying that the dad would find Charlotte and rescue her from her abductor.

When one of Danny's old teachers offered to watch Tommy so I could go to the car, I gratefully I ran the whole way, because by that point, I realized that the dad had volunteered to find Charlotte rather eagerly. What if, instead of the Good Samaritan he appeared to be, the "father" was really a child porn producer who decided to capitalize on the fact that I had lost my kid? What if his plan was really to grab her and run, so he could make millions off my poor girl?

Gasping for air, I finally arrived at the van, where the wonderful, kind, saintly dad was standing with the van door open. He had found Charlotte but decided to just wait for me at the car, so as not to scare Charlotte.

And my darling girl? She was sitting calmly in her booster seat, waiting for me. She munched some scavenged, stale crackers as she scolded me for getting lost.

Back at the school, a few teachers and therapists were gathered around my screaming toddler, who thankfully quieted down when he saw me. I explained to everyone that Charlotte had gone to the car to wait for me.

Ms. Jenni glanced at us and said, "Wow, she's so calm. She doesn't seem upset at all. I am impressed!"

And I thought, She's right. I did handle this all rather well. I didn't scream or have a breakdown or curl up in the fetal position and bawl, and I didn't yell at Charlotte when I found her. I'm a superstar. I handled this beautifully. And I am so grateful for Ms. Jenni for noticing. That was so sweet of her to validate me like that. I should treat myself to an ice cream cone for this. I really deserve it.

Ms. Jenni, breaking into my reverie again marvelled at my calm demeanor.

I thought, You know, I have never considered myself as particularly good at crises, but maybe all along I've been wrong. Look at how well I handled this! I have nerves of STEEL, man, STEEL. I was as calm as Detective Benson on SVU--hey, maybe I should become a detective.... I would be so good at that. I notice details and am obviously good in scary, traumatic situations.

Which is when I noticed that Ms. Jenni was looking at Charlotte, not me.

Oh.

Well, yeah, I guess Charlotte was pretty calm.

Of course, Charlotte had never seen Law and Order, so she had no idea of the danger she had been in. It's no surprise that she stayed calm. She knew where she was that whole time. I was the one who should have been panicking.

Whatever. Obviously, Ms. Jenni wasn't nearly as validating as I had thought.

I promptly ushered the kids out the door and headed straight to the ice cream place.

Homework: Teaching Organizational Skills to Individuals with ASD

2011-09-23T14:34:00.004-05:00

Danny's been having some difficulties with homework and organization, so I was excited when Autism Digest gave me permission to post the following article on my blog. The tips here are ones that I think could help any kid who struggles with organization issues.

As Appeared in the July/August 2007 issue.
www.autismdigest.com
Reprinted with permission of publisher.

Homework: Teaching Organizational Skills to Individuals with ASD
By Michelle Garcia Winner, CCC-SLP
www.autismdigest.com

Our daily lives are made up of an endless stream of thoughts, decisions, actions and reactions
to the people and environment in which we live. The internal and external actions fit together, sometimes seamlessly sometimes not, largely dependent upon a set of invisible yet highly important skills we call Executive Functioning (EF). These skills, which involve planning, organizing, sequencing, prioritizing, shifting attention, and time management can be well-developed in some people (think traffic controllers, wedding planners, business CEOs, etc.) and less developed in others. They are vital in all parts of life, from making coffee to running a profitable business. The skills develop naturally, without specific, formal training, and we all have
them to some degree – or at least, we all assume we all have them.

Things are never quite as simple as they seem, and these EF skills are no exception. They require a multitiered hierarchy of decisions and actions, all coming together within the
framework of time, knowledge and resources.

Imagine trying to navigate life when EF skills are impaired or nonexistent, as they are with individuals on the autism spectrum. For most of us, our imagination won’t stretch that far. Therefore, we assume all these kids – especially those who are “bright” - have EF skills
and we act and react to our spectrum children or students as if they did.

Nowhere does this EF skill deficit cause more turmoil than in the area of homework, producing monstrous levels of anxiety and dread in students, parents and teachers alike. The myriad
of details that need to be accomplished in a student’s class, school day or week can overwhelm even the healthiest student; it can shut down our ASD kids.

I am regularly asked: if tasks are so overwhelming to their EF systems, should we just avoid having students deal with them? The answer is an unequivocal emphatic “NO!” Organizational skills are life skills, not just school skills, and even though they are “mandatory prerequisites” for succeeding at school, like social skills they are rarely directly taught. Few states include explicit teaching of EF skills in their “standards of education.”

So where do we start? First, by understanding how complex organizational systems become by the time students reach middle school. We can only be good teachers if we appreciate the
demands the skills we teach place on our students.

Second, by understanding organization as a skill set, which involves static and dynamic systems.
Static organizational systems and skills are structured: same thing, same time, same place, same way. Static organizational tasks are introduced in kindergarten, first and second grade. We
break down tasks and ask students to explicitly complete very defined units of information, at a certain time and place. Write your name at the top of the page, read the instructions, complete
the work, when done turn the paper over and sit quietly until time is up.

Dynamic organizational systems and skills involve constant adjustments to priorities, workloads, timeframes, tasks and places. They are less teacher directed and more student-directed.
By 4th grade, teachers are introducing dynamic assignments to students with moderate levels of support. Soon after that we expect students to be able to manage increasingly dynamic workloads with little extra support or direct teaching. By high school, almost all school and homework has dynamic components requiring students to use EF skills to allocate time, resources, places to work, etc.

Here’s the good news: most of us understand that to tackle a dynamic task we have to break it down into its static elements. The dynamic part of the task requires thinking; the static part
of the task requires doing. A dynamic assignment such as writing an essay requires a significant portion of the task be spent thinking about the topic before the static tasks of actually writing
the paper at a table, at a specified hour, etc. One of the great challenges for our spectrum students is learning to break down dynamic tasks into more concrete, static chunks of work.
Fostering organizational skills in students with ASD requires an evolutionary approach towards teaching students, one that is ideally started at an early age. Students hone organizational
skills starting in preschool, when we first ask them to clean up their toys.

Teachers can accurately identify organized versus disorganized students as early as kindergarten. By 4th grade teachers expect students to be proficient with EF skills.
However, the reality is that the majority of our ASD students of all ages desperately need help with homework, specifically, and EF skills in general.

Help is available. The following 10 steps illuminate specific aspects of EF skills that increase students’ static and dynamic organizational coping mechanisms. While these steps are interrelated and synergistic, avoid trying to teach them all at the same time. Each may be difficult to grasp and master for the student with ASD; allow learning to take its own pace. Keep expectations realistic, talk things through regularly, and probe for misunderstandings or
miscommunication. Learning EF skills is a dynamic system of its own, with its static components.

Make sure your child or student experiences success and feels competent at each stage of
the process.

10 Steps to Foster
Organization Skills

1. Clearly define what needs to be done
Too often, parents and schools view organization goals too simply: “the student must write the assignment in his planner.” Clearly this is not nearly enough detail for most tasks and may
not even be the best starting goal for a particular student. Adults must be organized in their own thinking if they are to effectively teach students with EF deficits this skill. Go beyond giving out
assignments; help the student understand how to also approach the task from an organizational standpoint.

Adults must be organized in their own thinking if they are to effectively teach students
with EF deficits this skill.

2. Move it with motivation
Almost all students with weak organizational skills also struggle with motivation to accomplish homework tasks. Parents and teachers often don’t realize this lack of motivation can stem
from feeling overwhelmed by the task demands. Students with the greatest motivational challenges are often our most intelligent students (e.g. those with high IQ scores). We often assume “smart” means “organized” and say things like “come on, I know you can do this, I know you are smart.” Yet, they may have the hardest time motivating themselves when overwhelmed
because they have never had to work at learning. Learning just happened if they stayed attentive.

By adolescence, students need to appreciate that completing work - even work that seems somewhat ridiculous to them – has its rewards. It establishes them as hard working in the eyes of others, improves their grades and increases feelings of self-worth through meeting their grade level academic expectations. However, as obvious as this sounds, this level of cause-effect
can still be too overwhelming to some spectrum students because it requires delayed gratification. Many students need to start at a much more concrete level of motivation, with very small work steps combined with reward early in the task completion process.

For example, if a student cannot easily work for an hour, have him work successfully on a single part of the task for just 10 minutes before he gets to pause and congratulate himself. Self motivation increases when students feel confident in understanding and accomplishing the task before them.

It doesn’t matter how “well” you teach students these EF skills; if they are unmotivated, they will not implement the ideas. Work directly on helping students tackle and overcome motivation
challenges.

3. Prepare the environment
Most adults familiar with helping students “get organized” understand this point. Establish a dedicated workspace for homework that includes the essential tools: pen, pencil, paper, etc. Color
coding tasks, making sure the student has an organized binder, possibly access to a time-timer (www.timetimer.com) create structures that promote success during homework time.

4. Chunk and time it
Assignments that sound coherent and structured to teachers can still overwhelm a student with EF challenges.

For example: “write a report focusing on the economy, culture, weather and climate of a specific country.”

Clear enough, you think? Maybe to us, but not to them. Make sure the student understands how to “chunk” an assignment (break it down into smaller pieces) and how the individual parts
create the larger whole. For example, not all students will know their report needs four sections, essentially “miniessays” worked on separately and then joined together.

Furthermore, once they “chunk” the project students also need to predict how long each chunk will take to complete. The majority of our students with poor organizational skill have a
resounding inability to predict how long projects will take across time. In fact, they tend to be weak in all aspects of interpreting and predicting time.

Consider this: Is there anything you do without first predicting how long it will take? We “time map” everything, gauging how the task will or will not fit into what we’re doing now, an hour
from now, later in the day or later in the week.

Homework functions in much the same way. Students are more willing to tackle homework when they can reliably predict how long they will have to work on the task. For example, a student will usually calmly do math if it should only take 5-10 minutes. However, for those spectrum students who can’t predict time, the nebulous nature of the activity incites anxiety such that they may cry 45 minutes over doing a 10-minute math assignment.

When the student does not – or cannot - consider time prediction as part of his organizational skill set, he is likely to waste a lot of time rather than use time to his advantage.

5. Use visual structures
As the school years progress, homework shifts from mostly static tasks doled out by one teacher to mostly dynamic tasks assigned by many different individuals. We expect students to
self-organize and know how to juggle the many pieces of learning that make up each class, grade and level of education. Yet, this valuable skill is never directly taught!

Visual long-term mapping charts, such as a Gantt Chart, (www.ganttchart.com) can help students plan and monitor multiple activities. These bar type graphs allow a student to visually track multiple projects across time, determine when they are due and how much time is
available to work on each. For example, a history paper may be assigned in February and due in late March; a line would run from early February to late March to indicate the time allocated to
the project. A math project assigned in early March is also due in late March; another line would represent this project.

Visually the student can see that two big projects are due at about the same time, and both are worth significant grade points. This then helps the student understand why he should not
wait until the last minute to start one or both assignments. Gantt charts are frequently used in business, but have yet to make it into student software for school/homework planning. However,
they are easy to create and use at home or in the classroom. For students with ASD, they are invaluable tools for organization.

Visual structures can represent entire projects and then also be used for individual chunks, creating the visual organizational framework students with EF deficits need. Once assignments are understood as needing to be worked on across time, we can encourage students to chunks tasks to be worked on during specific weeks, then make related lists of things to do on specific days.

6. Prioritize and plan daily
Learning to prioritize is a valuable skill and helps the student get things done. Keep in mind that many of us make daily lists but don’t always complete all tasks on our list, and that priority
is largely based on the value we place on the assignment. Within the school setting, “value” is often dictated by the teacher. Priority is a factor of the task’s value overall, its deadline
and the time to complete it. However, just because a task is due does not mean a student needs to make a decision to complete it, especially if it is a low priority or low value task to the
student or the teacher. For example, during her sophomore year in high school my daughter was looking at her math grades online. I looked over her shoulder and saw she had mostly
A’s and B’s but noticed she had two F’s. I exclaimed, “Robyn, you have two F’s”, to which she replied, “Mom, they were each worth one point. They were hardly worth doing.” Robyn realized
that in light of the many assignments she had to juggle for all her classes, projects with the least point value were not worth doing; she’d rather save her time and effort for the larger, more important projects.

With a prioritized plan in hand, many students will still struggle with actually working on the tasks. Even students with high intelligence may have difficulty getting themselves to
work on projects not of their liking. Their baseline attention span may be no more than 7-10 minutes. (Test one of your student’s baseline attention span by observing how long he can
attend to mundane projects without self-distracting. You may be surprised by how short it is!)

Help students succeed with their daily schedule by teaching them to take frequent small breaks at the end of their baseline attention span. For example, a graduate student in theology
found he could only push himself through 10-minute work cycles before feeling overwhelmed or internally distracted.

He used a visual time-timer and gave himself a short stretch break every 10 minutes. Once he completed a number of these short work cycles he gave himself a larger reward. The
key to using self-reward is to make sure the small reward isn’t likely to be distracting or absorbing (computer games, TV, reading a book). Instead make these small breaks quick and
refreshing, just to refocus attention: sensory based activities (stretching or movement), a small snack, a quick trip to the bathroom or pencil sharpener.

7. Hunt and gather
Simply put: students need to plan time into their schedule to locate different resources to complete a task. For example, research at the library might be a “chunk” they plan for
on their homework list (don’t forget travel time!).

Keep in mind that many of us make daily lists but don’t always complete all tasks on our list.

8. Consider perspective
Homework is more effectively completed when students start by considering the teacher’s perspective before diving into the assignment. An assignment done well is one that meets the
teacher’s expectations and follows the teacher’s instructions. A high school student went to great lengths to develop a computer program for his computer programming class. His teacher came to me exasperated, explaining that while well done, the project was totally unrelated to the class assignment.

Parent perspectives enter into the homework plan also. Many parents expect children to finish homework before watching TV. Even though children may have accomplished a great deal
of homework (in their mind “enough”), trouble can still erupt because it wasn’t “finished” in the parent’s mind.

Perspective taking can be quite overwhelming to many students with social learning and organizational problems. A strategy called “social behavior mapping” (Winner, 2007) can help students understand how expectations, actions and reactions affect not only how we are viewed by others, but how their responses ultimately impact the way we view ourselves.

9. Communicate and then communicate some more
Homework assignments often result in students needing help from others. Knowing when and how to ask for help can be challenging for students with social learning and organizational
weaknesses. Avoid assuming students – especially “bright” students - should intuitively know how to ask for help, clarification or even how to collaborate with others on assignments. These
skills are not nearly as simple as they seem and may need to be explicitly taught by the special education teacher or speech language pathologist at your school. Tip: as students age into middle
school and beyond, most are turning to their peer group rather than their teacher for help. This fosters peer support networks desperately needed for success in college and later life.

10. Completion and Reward

Having a clearly defined “end” to a task is important for the concrete thinking minds of students with ASD. Be sure the child knows what “finished” means, both at school and at home. For
instance, a homework assignment is not truly “done” until it is turned in to the teacher at school. While homework turn-in boxes (static) are commonly found in elementary school, they all
but vanish during middle and high school years when even the act of turning in homework becomes dynamic.

Make sure your students know where to turn in homework. Also, parents should save big celebrations for completed projects until the assignments are actually turned in. Some students
may need reminder systems set up to make sure work is turned in on time. Visual notes, PDA messages or watch timers can be used to help.

At home, “finished” homework yields its own rewards when students can engage in more personally pleasing activities, such as a computer game, watching TV, reading for pleasure, etc.
Even our favorite activities have a finite time frame attached to them before it is time to go to bed. Many of these organizational strategies can be used to help a student learn to shut down a
favorite activity and get his brain ready for bed.

“Planning takes time!” This is a message we need to constantly reinforce with our spectrum students. “Teaching organizational skills takes time, across months and even years!” This is a
message we need to reinforce to parents and teachers. Whether students are using organizational skills for homework, doing chores, preparing for a weekend activity or something
as simple as getting a snack, as children grow and develop, tasks become increasingly complex and dynamic with each passing year. Teachers and parents need to work together, while
children are still in elementary school, to identify and teach any or all of the 10 steps mentioned in this article that are problematic for the spectrum child.

In doing so, we give children the tools not just to handle homework, but to be successful in all areas of life.

Michelle Garcia Winner is internationally
recognized as an innovative clinician,
enthusiastic workshop presenter and prolific
author in the field of social thinking
and social cognitive functioning. Visit
www.socialthinking.com for additional
information.
References
Allen, D. (2001). Getting Things Done. The art of
stress free productivity. Penguin Books: New York.
(recommended by an adult with AS)
Dawson, P. and Guare. R. (2004). Executive Skills in
Children and Adolescents: A Practical Guide to
Assessment and Intervention. The Guilford Press:
New York.
Giles-Brown, C. (1993). Practical Time, Language and
Living Series. Imaginart. www.proedinc.com
Hyerle, D. (1996). Visual Tools for Constructing
Knowledge. Association for Supervision and Curriculum
Development: Virginia.
Myles, B. & Adreon, D. (2001). Asperger Syndrome
and Adolescence: Practical Solutions for School Success.
AAPC: Kansas. www.asperger.net
Soper, M. (1993). Crash Course for Study Skills.
Linguisystems: Illinois. www.linguisystems.com
(highly recommended for building a curriculum!)
Winner, M. (2005). “Strategies for Organization:
Preparing for Homework and the Real World.”
The Gray Center: Grand Rapids, Michigan. (www.
socialthinking.com)
Winner, M. (2007). Social Behavior Mapping. Think
Social Publishing, Inc.: San Jose, California.

Shameless Plug

2011-09-19T15:52:00.007-05:00

This year has been an incredible year of opportunity. I am featured in two books and am so excited about it. I never thought I would ever be published and now because of these wonderful bloggers, I have been given an incredible opportunity!

First up is Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder by Hartley Steiner. Hartley has compiled stories from dozens of families, and what an amazing collection this is!

If you are interested in buying this book, Future Horizons Publishing has a great deal. They have given me a code that I can share with you. This code will give you 15% off anything you buy there, including conferences, and you get free shipping. Unlike Amazon, there is no minimum. The code is PH. Pretty easy, huh?

The next book is called Wit and Wisdom from the Parents of Special Needs Kids. According to Amazon, it "brings together dozens of the best writers in the blogosphere, sharing their stories of both the challenges and rewards of raising children with autism and other cognitive disabilities."

Don't ask me how I managed to get invited to contribute to this book! I am so honored to be included in it, though. Check it out at Amazon.

Lego Therapy?

2011-08-12T07:31:00.012-05:00

Kids with autism typically have difficulty in one or more of these three areas: communication, response to sensory information, and social interaction.

I don't know about you, but of all these areas, I find social skills to be the most worrisome. This is mostly because teaching these skills is so daunting to me. Helping a child communicate better? Now, that I can handle. And dealing with sensory issues? Yep, I'm pretty comfortable with that as well. Though neither of those areas are a piece of cake, they do seem a bit more clear cut than social development.

But teaching my kid how to make friends, how to ask to join a game, how to use a tone of voice appropriate to a particular situation? So difficult. There are so many nuances to social interaction that seem intuitive to me. And that makes it difficult to teach. Worse yet is trying to teach him how to be patient and control his anger.

When our developmental pediatrician recommend ed a social skills group, I agreed immediately. Of course, I would drive over 60 miles round trip once a week. If someone could help my kid learn to make friends, I would walk if I had to!

Problem is, the social skills group only went so far. He learned about facial expressions and emotions, but still didn't seem to have any practical skills that would come in handy on the play ground.

So, I did research. I read a few social skills books and websites, desperately looking for a program that could really help Danny. What I discovered, though, was that many social skills programs are based on role playing; there does n't seem to be much opportunity for actual practice of the skills, which is exactly what my son needs. He has no problem answering the questions right, but extrapolating that information onto a social interaction has proven enormously difficult for him.

On top of that, Danny wasn't all that interested in the social skills group. The only reason he looked forward to it every week was because the Center had Legos, which he could play with when the group was done.

For months, I worried and agonized over how to teach my son, Danny, social skills. One day, as I wrote a post about my Danny's obsession wit h Legos, the thought occurred to me that if I could combine legos with social skills, we would have the winning ticket.

So, when Tiffani Lawton from Our Journey Thru Autism sent me the link to the Center for Neurological and Neurodevelopmental Health's website, I couldn't believe my luck. They had developed a Lego Social Skills protocol based on research. Finally, a program that was inherently motivating. I knew my son would beg to participate, solely because it would have Legos.

The CNNH calls this program "social development therapy" which I initially thought peculiar. Social therapy? Why therapy? Isn't it just a bunch of kids playing?

Now that I have read the manual, I know that it is so much more than that. This is a serious, very structured and amazingly well thought out set-up. Every aspect of the program is designed to teach kids not only how to work cooperatively, but how to resolve conflict, compromise with others and become good role models.

Let me give you an example. The kids are put into groups of 2 and 3. Every session, the groups each have the opportunity to choose which set they want to work on. So, every single session, the kids have to discuss and negotiate. If they take too long arguing about what to build, they lose precious Lego time. So, without bribery or threats, the kids learn not to argue, but how to compromise.

The club is very child-driven. The kids are trained to confront others who are disobeying rules. They are expected to work together on sets and on freestyle projects. They are given chances to be leaders of the group. They even decide when a child needs a time out because of behavior.

Of course, all this happens with adult supervision, so the kids are learning these skills in a safe environment with guidance.

The more I read about this program, the more excited I get. This is not the kids role playing what to do when someone steals their toys. No, this is real life practice. They don't sit around talking about how it might make them feel if they were left out. Instead, they are encouraged to broach these subjects with each other as they play. So, not only are they learning how to work with others, they learn to be their own advocates, to make their needs known.

We officially start our group in about 2 weeks, and I am frantically working to get everything done in time. But all the hard work is worth it. My son will finally have the opportunity to learn social skills in a way that he loves.

And I cannot tell you how amazing it makes me feel that I get to be the one to help him.

sensory therapy

2011-08-10T08:17:00.001-05:00

My son, Danny, was diagnosed with Sensory Processing Disorder over 5 years ago by a very competent therapist. I love Danny's OT, Linda; she is practically psychic, a kind of SPD whisperer, if you will. The only drawback to taking Danny to Linda for therapy is that she is located about 45 minutes south of Chicago, which is 2.5 hours north of where we live.

Because of the distance, after Danny was diagnosed, I searched high and low for a therapist who was closer. After trying just about every pediatric OT within a 70 mile radius (which really isn't that many; apparently southern Illinois has a serious shortage of OTs) we have decided to stick with Linda. She is the only therapist we have worked with who really understands SPD.

I have been amazed at how many OTs and other professionals out there who really don't understand the nature of SPD and how to treat it. Many of the supposed experts seem to think that sensory activties (or a sensory diet) is the same thing as Sensory Integration therapy.

If you have a kid with SPD, I am sure you know that a sensory diet refers to activities you can do at home to engage a kid's senses. Some popular activities include playing with clay, dried beans, playing in a ball pit, working with fine motor activities like Legos, lots of jumping and other deep pressure activities, among many, many other things. These activities are most efficacious when done consistently every day. They are vital in keeping a kid regulated and able to focus and deal with life and sensory stimulation, in general.

But they do not constitute SI therapy.

I'm not an expert or an OT, but from what I understand,

Sensory Integration therapy has some important distinctions from sensory diet. SI therapy has a lot more to do with training the brain and the nervous system to work together, while engaging various parts of the body. (Check out Sensory Integration and the Child by Jane Ayers for a good idea of what SI therapy looks like.)

And I have Lucy Jane Miller to back me up on this. A few years ago I attended a conference at which she was the keynote speaker. At the time, we were seeing an OT who just had Danny cut with scissors, play with some Theraputty and sometimes swing in a net swing. When he was in the swing, all he did was swing. These were all very basic, sensory diet activities, and despite the fact th

at we had been seeing her for months, it had never advanced beyond them.

I happened to run into Dr. Miller during a break, and though I hated to bother her, I asked her about my concerns. I described the activities the therapist was doing with Danny and asked if this were really proper SI therapy.

I will never forget her answer. As she looked me straight in the eyes, Dr. Miller said, "You already know the answer to that."

She said that my instincts were right on, and she encouraged me to find a therapist who knew the difference between sensory diet activities and SI therapy.

And then, once the conference reconvened, Dr. Miller took a minute to explain to all the Occupational Therapists in the audience the difference between SI therapy and sensory diet. She said, "If you are just swinging kids in swings, you arenot doing SI therapy."

This is why I now regularly drive 6+ hours round trip to take the kids to Linda. Though the drive is a major burden on us, it is worth it, because I am confident my kids are receiving good, solid SI therapy. As they gets older, the exercises become more advanced, and they are always in response to a very specific need, like building core muscles, learning better motor planning, self

-regulation, among many other things.

Linda NEVER has Danny just sit in a swing. When he is swinging, he is doing all kinds of activities, like throwing a ball through a hoop or aiming at a target, etc. Also, she has him change positions. Sometimes he swings sitting up, other times, he is on his stomach and still others, he is on his back. This change of position is really important because exercising in each different position affects the vestibular system in a different way.

Don't believe me? Just try swinging on your back compared t

o on your stomach. It's pretty trippy!

Both sensory diet and SI therapy are vital for kids with SPD. Neither can replace the other.

So, if you have an OT who is merely doing sensory diet activities with your child, I suggest you question her.

Do some research and ask your OT why she is doing a particular activity and how it will help your child. Make sure that the therapy goes beyond just simple sensory diet activities.

After all, you can and should do sensory diet activities at home.

The OT should be concentrating on actual therapy. That's why she charges over $100 an hour!

Check out S-O-S Research blog for more posts about therapy and special needs.

"EyeGames" Review

2011-08-07T15:58:00.002-05:00

Winner of a Creative Child Magazine's 2011 Top Choice of the Year Award, EyeGames: Easy and Fun Visual Exercises by Lois Hickman and Rebecca E. Hutchins is a treasure trove of information about visual problems that often face kids.

You might wonder what the point of this book is. After all, if you suspect your child has a vision problem, you would just take him to the eye doctor. But here's the thing: being able to read a vision chart is just one aspect of your child's vision. He could have perfect 20/20 vision and yet have other challenges with visual perception. Challenges that greatly affects your child's ability to read and learn.

Apparently, problems with visual perception are not uncommon among individuals with autism. They can include issues in any one of the following areas: following, fixation, focus, fusion, flexibility, field, and fatigue.

I have recently suspected that Danny has problems keeping his eyes on the book (fixation) and moving them along the words on the page (following). After seeing his Occupational Therapist, I discovered he might have difficulties with other areas, as well.

What I like most about this book is all the explanation and background of vision problems. These authors explain the issues in an easy to read way. They also explain the roles of Behavioral Optometrists and Occupational Therapists in helping kids with vision problems.

The rest of the book is dedicated to the Eye Games or activities to help a child improve his visual processing. The games are clearly marked as to whether they are meant for children or adults. Also, the authors indicate what setting the games are designed for.

As I said, this book is a treasure trove of information. It is replete with great ideas for activities, information on how computers affect vision, how light can affect sleep, and how visualization is the "crown jewel of vision." And these activities can benefit anyone, even if you don't suspect a vision issue.

I learned a tremendous amount reading this book and am glad I own it, as it is a valuable resource. This book will assist us as we try to get to the bottom of Danny's vision issues.

Brains, Trains, and Video Games Review

2011-08-04T08:14:00.007-05:00

If you're looking for a book about autism that is infinitely validating, honest and hopeful, look no further. Brains, Trains, and Video Games by Alicia Hart has all that and more. This book chronicles the sometimes heartbreaking, often triumphant journey of one family with autism. Alicia Hart, the mother of three, details the diagnosis, treatment and life of her son Ewan.

Now, I need to tell you that I happen to know this author. Alicia started a group in my town for kids with autism. Adventure Club was an answer to my prayers. It was a club which taught kids science while also teaching them social skills. More than that, it was a club whose sole goal was to provide our kids with fun.

Adventure Club is also where I met some autism moms in my area. And I got to know Alicia, this amazing mom and advocate for special needs kids. On top of motherhood, Alicia has also worked with kids with autism professionally.

I know I shouldn't get personal with book reviews. I should be totally objective and all that, but here's the thing: Alicia gets kids with autism. She understands them more than any professional I have ever met. She knows how far to push them and when to back off.

Best of all, she accepts them for who they are. She loves them, quirks and all.

Immediately, I felt that she cared for Danny. A lot! They bonded over their mutual love for pajamas and from then on, I couldn't keep Danny away from Adventure Club. Alicia is also who inspired me to start the LEGO Club.

The reason I write all this is to show that Alicia knows autism. She knows what it's like to struggle to get services for her child. She understands the grief that accompanies hearing your child be diagnosed with autism. She has felt how utterly overwhelming it when a child needs several different therapies and services. She knows the guilt a mother feels when her neurotypical child feels a bit neglected.

And best of all, Alicia is not afraid to share all these feelings in this very open-hearted, sincere and authentic book. Reading Brains, Trains and Video Games feels like you're sitting down to coffee with the most knowledgeable autism advocate, wrapped up in a mom who is sometimes self-deprecating and who never takes herself too seriously. Throw in a person who is genuine and has a passion for helping our kids and you have Alicia. And this is why you should read her book.

It's the next best thing to sitting down face to face over Diet Coke and pie!

So, do yourself a favor and go order Brains, Trains, and Video Games. You'll thank me. I know you will!

Thank you!

2011-07-31T23:38:00.002-05:00

In case you didn't know, we won the Pepsi grant! I have started our little Lego Club and we already have over a dozen kids signed up. Officially, we start in September, after I receive training from the CNNH. Thanks to all you who voted, spread the word, offered expressions of good luck, and prayed for us. As you can see, the kids really appreciate it!

And so do I!

Learn to Have Fun with your Senses

2011-07-30T05:32:00.000-05:00

Learn to Have Fun with Your Senses, The Sensory Avoider's Guide by John Taylor, PhD is a fantastic book actually written for children with sensory issues. This guide teaches kids how to manage their sensory regulation and have fun at the same time.

Since it is written for children, it is easy to understand and follow for parents, as well as for kids. Each chapter is dedicated to a different sense, and includes a quiz designed to determine whether the reader overreacts to that particular sense. This is pure genius, in my opinion. It not only helps the reader understand what overreacting to sound, for example, is like, but it teaches kids to be aware of their sensory responses. Most kids may not realize that their reactions are unusual, but taking these quizzes can help them see that being bothered by an elevator could be a sign of sensory problems.

After the quiz comes a "Take Charge" section which includes all kinds of useful tips on how to plan around your particular sensory challenge. For example, in the "Learn to Have Fun with Touch" chapter, the "Take Charge" section includes tips on planning ahead for outdoor fun, ("Be prepared for any weather, so it doesn't bother you too much") avoiding surprises ("Ask those who are going to touch you to approach you from the front, so you can be ready to receive their touch"), keeping your skin healthy so it will be less sensitive, and so on.

I love that this book teaches kids to take charge of their sensory sensitivities. This is a skill I am trying to teach my son. It has been a challenge, so this book comes at the perfect time for us.

The next section in each chapter is called "Train your Brain" and is full of fun activities kids can do to help train themselves to handle sensory stimuli better.

It doesn't stop with just sensory games, though. There are chapters on eating well, getting good sleep and taking care of yourself so that the brain can function more optimally.

This book is great, especially for teaching your kid to understand his SPD and how to manage it. I can't wait to start reading it with Danny and Charlotte. I know they will get a big kick out of the fun activities!

validation

2011-07-26T15:58:00.002-05:00

image from askaboutValidation.com

In the Spring, I happened to have my annual gynecologist appointment. As he worked, Dr. B asked me what I had been up to in the last 2 years. (I always put this appointment off, usually with the intention that I will make the appointment after I lose weight, which never seems to happen, so the appointment is less annual, more biennial.)

I relayed what I'd been doing to keep busy, and I mentioned that Danny had been diagnosed with autism.

Dr. B responded, "I'm sorry to hear that."

I murmured my thanks as I lay there, legs splayed, and I considered what he said. I didn't know exactly how his reaction made me feel. Somehow, it didn't feel like the right response to my news, but I had no idea what would have been a better one. I knew Dr. B meant well and was being kind. Still, I thought there had to be a better way to answer such a revelation.

Over the last year and a half, there have been many responses to the news of Danny's autism, but mostly, they fall into three categories: expressions of sympathy, objections to the diagnosis ("Danny's fine! There's nothing wrong with him! My kid does the same thing!"), or offers of advice.

Of the three, I would prefer the offers of sympathy, hands down. Frankly, the reassurances that Danny is fine and the advice people offer just leave me feeling very defensive, alone and misunderstood, no matter how well-meaning.

Fast forward to my family reunion this past weekend.

On the drive to Chicago, I wondered if anyone would broach the subject of Danny's diagnosis. The last time I saw many of these family members was 2 years ago at the last reunion. Danny had not been diagnosed, but I think it was obvious to most of my family that he was having major difficulties.

My family, as a whole, typically avoids discussing uncomfortable topics like these. I don't think many know what to say, so they avoid the subject altogether, at least with the person directly involved. I understand this and have been known to do it myself. After all, it can feel awkward even trying to raise the topic, especially when you haven't seen the person in years. What do you say?

"Please pass the potato salad. Sooooo....I hear Danny's autistic"?

Still, it sometimes leaves me feeling a bit isolated.

When we arrived at the reunion, Danny and Charlotte joined their cousins on the playground, leaving me to relax on the sidelines. As I watched to make sure Danny wasn't getting over stimulated, my cousin Ann approached me.

Only a year apart in age, Ann and I were very close growing up. Over the years, though, we haven't seen a lot of each other. She lives in a different state, and we both got married and had kids, all of which made keeping in touch difficult.

I was glad to see her and prepared for the small talk I was sure was coming. Instead, we somehow got on the subject of autism. And this is when I had probably the most validating autism discussion with someone not directly affected by the disorder. Ann asked me the most thoughtful questions about what Danny was like, how autism affects him and what that means for his social and school life. She inquired about challenges I face with parenting and disciplining. And she listened as I explained that though Danny appears to not care about others, he is actually quite empathetic.

Thankfully, Ann never offered me a piece of advice. She didn't express pity and she never tried to downplay my challenges in an attempt to make me feel better. Instead she offered me the best gift of all: validation.

Ann's final question almost brought me to tears.

She asked me if I ever wondered, "Why me?" If I ever just got angry that I had to deal with this, angry that my kid was saddled with such difficulties.

I choked on the word "Yes!" as I tried to keep from crying. Ann had tapped into the very issue I had been struggling with for months. After Danny's diagnosis, I wasn't surprised by my anger; it seemed appropriate. Eventually it subsided, replaced by a feeling of determination to get Dan all the services he needed.

Recently, though, the anger has resurfaced, surprising me by both its intensity and my inability to move past it. Why now am I feeling so angry and hopeless? Shouldn't I be past that at this stage? What's wrong with me that I'm so sad and angry? I have been feeling guilty and weak and wondering if the anger will ever go away.

But when Ann asked me that question, somehow I felt peace. She validated me, confirming that, yes, dealing with autism is difficult. Sure, everyone has problems, some much more heartbreaking than mine. But, that fact in no way diminishes my pain. It was almost like she had given me permission to continue grieving, as long as it takes.

And apparently, that is exactly what I needed.

"Special Diets for Special Kids" review

2011-07-22T20:20:00.003-05:00

Special Diets for Special Kids by Lisa Lewis is a must-have book for anyone interested in starting a gluten-free/casein-free diet. This book is teeming with recipes designed with kids in mind.

I have never read a cookbook that had quite so much information about nutrition and science. This book is for those whose kids are on a gluten-free/casein-free diet, and there is a whole section dedicated to why this sort of diet might be desirable for your child. It goes into how diet can help kids with autism and other special needs, and it details why cleaning up our kids' diets is so important.

What I liked about this book is it had some unusual sections, ones I think especially good for kids. There is a drinks section, as well as one on holiday food. Also included is a section of ethnic food, condiments, and dairy substitutes. I had no idea that you could make substitutions for evaporated milk, whipping cream, and sweetened condensed milk!

My kids are not on a GFCF diet, mostly because the prospect seemed so daunting to me. How could I eliminate both dairy AND gluten, when they are in just about everything? The author points that out, too. It's amazing how you can find these ingredients in things like spices and soup mixes--foods you would think are safe.

With over 200 recipes, this book has shown me that there are plenty of foods my kids can still eat and it has encouraged me to try out some changes to our diet. While I will in no way go cold turkey on casein and gluten (I just don't think I could handle that at this time), I am definitely going to make some small, sustainable changes and see how that goes.

If you are interested in learning more about GFCF diets and autism, or if you are just looking for some more recipes to sustain your GFCF diet, I recommend checking out this book! It includes a free CD of printable recipes.

Food, Hong Kong style!

2011-07-19T18:05:00.008-05:00

My birthday cake in Hong Kong. My friends covered it with all kinds of prawn crackers. Yum.

I have always been a food lover. I'm not very picky and have moderately adventurous tastes. I think the credit for that goes to the year and a half I lived in Hong Kong when I was in my 20s. Hong Kong is a melting pot of cultures; all manner of exotic cuisines can be found there. I ate Sri Lankan, Indonesian, Thai, Japanese, and Korean food, and what a gustatory adventure I had!

Before living in Asia, however, the my most exotic meal came from Wayne Moy's takeout place on 63rd Street. Chop suey and pork fried rice were about as foreign as my family got, food-wise. Mostly, we ate lots and lots of meat and potatoes--roasts, pork chops and chicken, with a couple of hot dishes or a side of Minute Rice thrown in once in a while to spice things up.

When I was informed that I would be serving in Hong Kong, I thought, "No sweat. I LOVE Chinese food! And I LOVE fortune cookies! I will have no problem adapting to the food." At the time, I thought I was relatively well-rounded and cosmopolitan. After all, I grew up in Chicago, how sheltered could I be?

Oh, how very naive I was!

Here are some lessons I learned about food while I was serving in Hong Kong.

~~~~Minute rice is an abomination. It should never be consumed in any form. Ever.

I really mean this.

~~~~Fortune cookies are not Chinese. I never saw a single fortune cookie the entire 16 months I lived in Hong Kong. They are purely an American invention. Instead, dessert was typically fresh exotic fruit.

~~~~Mangoes are the food of the gods. I am convinced that the forbidden fruit was a mango rather than an apple. I mean, seriously, who in their right mind would give up paradise for an APPLE?

A mango, on the other hand? Yeah, I'd be tempted, alright.

~~~~Before taking an enormous bite of a food, make absolutely certain you know what the ingredients are. You may think you know what is in that fruit salad, but you could be seriously wrong. Just because fruit salad in America is typically made with whipped cream doesn't mean the same can be said for Hong Kong. In fact, you'll have a heckuva time finding Cool Whip anywhere in the city.

The same, unfortunately, cannot be said for Miracle Whip.

And if anything can make you gag, it's a mouthful of fruit salad dripping with Miracle Whip. Trust me on this one.

~~~~If you happen to be enjoying a particular food, do yourself a favor. Don't ask what's in it. You can't handle the truth.

~~~~With food, as with so many aspects of life, it's all relative. You may think those fish balls are revolting, but after being served chicken's feet and cow's intestines, they suddenly become downright delicious.

Me with a chicken's foot. I have to admit, I never did actually eat them. This is the one food I could never force myself eat. They just seemed way too much like baby skeleton feet. You tell me, could YOU eat them?

~~~~You can't make instant pudding with soy milk. It just doesn't work.

~~~~Those tiny red Thai chili peppers are like 100 times hotter than jalapenos. When you decide to make salsa using the peppers, only use one. And for the love of everything that is holy, DO NOT rub your eyes after touching one. You will go temporarily blind.

~~~~Oyster sauce--much like ketchup in the States--can make almost anything palatable.

~~~~If you know an old woman who routinely fishes vegetables out of the garbage and then sells them to people on the street, do NOT let her cook for you. No matter how good the food smells or how normal it tastes, don't eat it. You will regret it for the next 15 months.

And so will your bowels. They will never be the same again.

We're pretty sure this granny fed us garbage. To this day, I still am nauseated by the taste of tofu and cashews.

~~~They say that necessity is the mother of invention; I say desperation is. When you cannot go another day without a piece of cake, you will learn that it can be made without an oven. Steamed banana bread is delicious!

~~~~As in other aspects of life, taking risks can bring great rewards. Some of the best food I have ever eaten, I ate in Hong Kong. My mouth still waters when I think of a particular shrimp dish I ate and the steamed pork buns at dim sum. And I still crave the pumpkin curry I from the Sri Lankan buffet in Central.

Because I was willing to try new things, I learned about all kinds of tastes and cuisines. I learned that ginger is a root, not a powder, and garlic is not used only in Italian food.

Most of all, though, I bonded with people over the food they served me. I learned that when someone makes food for you in Asia, it is their way of showing you love and hospitality. And when you graciously eat the proffered food, you show your appreciation for their sacrifice.

And I learned there are people so generous that they will serve you a feast even when they can scarcely afford it. And to turn your nose up at the offerings is insulting.

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For more posts on food, visit Jen at Sprite's Keeper.

"The Book on Writing" Review

2011-07-18T07:00:00.005-05:00

I have to admit when I was approached to read and write a review of The Book of Writing by Paula LaRocque, I was a touch apprehensive. I was eager to read the book and hopefully learn tips to improve my writing. But I wasn't sure I'd have the motivation to actually finish it and write a review. After all, most writing books tend to be a bit boring.

Between college, grad school and teaching both college and high school writing courses, I have read my fair share of writing books. Most of them tend to stick to purely grammatical issues, and it seems like they all cover basically the same problems.

This is why I was pleasantly surprised by LaRocque's book. First off, her writing style is so easy and enjoyable to read. Her examples are surprisingly fun; she gives wonderfully overwritten and verbose examples of what not to do and then follows them with a cleaned up version.

Secondly, I love LaRocque's take on good writing, which is to be as clear and concise as possible. The fewer words you can use to get your point across, the better. She proves that using fewer words can often be much more powerful than flowery descriptions, but she also admits that different situations call for different styles, an admission not all writing experts make. For example, though an advocate of the active voice, LaRocque admits that the passive voice is preferable in some cases.

Another great thing about this book is it is not dedicated to grammar, and while mechanics are discussed, they do not monopolize the text. Instead she focuses on more advanced writing issues, like avoiding wordiness, using metaphors well, and building suspense.

As I read this book, I found myself analyzing what I was reading and writing and looking for ways to make it tighter and more vivid. I know I have a long way to go, but I'm excited to have a book that is so easily accessible to guide the way.

If you are looking for a book that can help you improve your writing, check out The Book on Writing: The Ultimate Guide to Writing Well. When I go back to teaching, if I am given the opportunity to choose the course text, I will definitely opt for The Book on Writing.

Farts and Giggles

2011-07-13T17:08:00.001-05:00

Lately, it's all about farts in the Pancake home, with a little bit of belching and poop thrown in for good measure. Danny talks about farting almost as much as he does about LEGOs, and that's saying a lot, believe me.

It's like he has suddenly morphed into a.....well, a....I guess it would be a prepubescent boy, which is exactly what he is.

Danny isn't content to be the only one delighting in flatulence, though. He has recruited both of his siblings--his sweet, delicate little sister and his innocent, toddler brother. He's a bad influence, that one.

Hardly a morning goes by where I don't hear Charlotte or Danny yelling, "Get your butt out of my face!" or recommending to the other, "Smell my butt!" and once after farting, Danny ordered me to do so. He was flabbergasted when I declined his invitation to smell his nether regions.

They also recently taught Tommy how to fake burp. My little two-year-old cherub will imitate a belch and proudly proclaim, "Tommy burpted! Tommy burpted!" His siblings reward him with peals of laughter, which of course only encourages him to continue.

Along with that, Danny has channeled my twin brother. He routinely sits next to me, lifting a butt cheek in my direction and letting loose a series of disgusting farts. I swear, I'm asking for a gas mask for Christmas.

If I ever want to cheer Dan up or distract him, all I have to do is talk about how much his flatulence reeks. Danny lights up, as he agrees proudly that he does indeed have stinky farts.

Most of this I can handle. After all, I'm no prude. I love some low-class bathroom humor as much as the next girl. Growing up, my siblings and I would routinely bring my mother to near-puking with our dinner table conversations.

Still, after a while, it can get a little crude. Especially when Danny calls someone a "farthead." I try to get him to cool it, to put a lid on it. And I forbid him from calling other people "farthead."

I don't think I'm making much headway, though.

Recently, Danny spent a couple hours with his 9-year-old cousin. They laughed and joked endlessly, rolling on the floor and wrestling. It was a delight to see them getting along so well. They each have a tendency towards getting a bit out of hand when they are together. Dan and T tend to rile each other up, often ending up in some trouble.

This time was different, though. We only had to redirect them a couple of times, and the boys were having a ball. Their topic of conversation was troubling to me, however. They talked of nothing but farts and poop and belches the entire afternoon.

My sister, sensing my annoyance, leaned over and said, "Patty, this is all totally age-appropriate. This is what boys do."

And I realized she was right. 8 and 9-year-old boys like to talk about farts. They are devoted to all things potty humor, as disgusting as that might be to a refined adult, such as myself. (I'm totally kidding here. I'm just as vile as Danny. Just ask Bil about all the times I gave him a dutch oven.) And that means Danny is just being a regular boy!

So, for once in Danny's life, an annoyance has popped up that has nothing to do with autism. It has nothing to do with his IEPs or whether he will ever learn those blasted word problems in math. It's not about coaxing him to cooperate with his numerous therapies, and it has nothing to do with his inability to make friends. In fact, just the opposite. Danny's love for fart jokes seems to have helped him bond with kids his age.

And that? Well, THAT makes me smile.

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For more lighthearted posts, go to Sprite's Keeper's Spin Cycle. I'm willing to bet the other posts will be much more refined than mine, so rest easy. After all, there's only so much fart humor one can take in a day.

Taking the train to Winky-ville

2011-07-12T08:09:00.013-05:00

When the kids were babies, Bil came up with the term, "taking the choo-choo train to Winky-ville" when referring to sleep. We aren't typically super cutesy with names for things, but that one stuck. It's a cute term that belies the stress and frustration that was on the horizon for us.

As a baby, Danny was a phenomenal sleeper. He slept through the night at 2 months of age, and continued to do so the rest of his life.

With a few notable exceptions.

Before being diagnosed with SPD at around age 2, he began waking in the night screaming. Absolutely nothing we did would calm him down. Drinks of water, rubbing his back, administering gas drops, and singing all seemed to make these episodes much, much worse.

Danny would arch his back and scream and cry for about an hour before his sobs slowed.

With time, we discovered two calming techniques that worked for him: taking him for a drive and letting him watch Baby Einstein videos.

Thankfully, these episodes were rare; they only occurred every couple of months. The severity, however, was such that I was tempted to take him to the ER a couple of times. It seemed like the kid was in excruciating pain. I remember frantically running around the house trying to think of what we could do to help him calm down.

I can think of few times as a mother when I felt more helpless, watching Danny scream and not being able to help him. My extreme fatigue only heightened my frustration.

Thankfully, once we got him occupational therapy and started treating his Sensory Processing Disorder these night episodes gradually disappeared.

Interestingly, it wasn't until years later that I even connected these episodes to his SPD. We had so many other things going on at the time, I never really thought much of those wakings. I just felt lucky that they stopped.

Charlotte (who is 5) has been an entirely different ball of wax, sleeping-wise. As early as infancy, we discovered the dangers of allowing her to become over tired. If Charlotte missed a nap, her sleep would be disrupted for days.

When she began waking in the night screaming, I didn't know what to do. If I thought Danny's night episodes were severe, I hadn't seen anything yet. Charlotte screamed for well over an hour.

In her case, Baby Einstein didn't work. Neither did rides in the car.

In fact, nothing we tried succeeded in calming her frazzled nerves.

And Charlotte's episodes happened with an alarmingly increasing frequency. By the time Tommy was born, Char was waking at least once or twice a week, sometimes even more often. It was rough. Between night feedings for Tommy and night screamings with Charlotte, I thought I would lose my mind from exhaustion.

At first, I thought perhaps she was having night terrors, so I did extensive research on how to treat them. Didn't help.

Then, I wondered if because we were giving her so much attention when she woke, we were inadvertently encouraging her. So, we tried, very unsuccessfully, to let her cry it out. (You know, the old Super Nanny approach to sleep problems, which by the way, does NOT work with special needs kids.)

Later, I just cried with her, holding her very tight and rocking, while rubbing her bare arms.

None of our techniques really helped, though the last one seemed to assuage Charlotte slightly. The only thing I really understood about the night wakings was she was more likely to have them when she was over tired. Although I tried valiantly to get her to nap, Charlotte was at the age where she resisted mightily.

Finally, when I took Charlotte last year to be tested for SPD, I mentioned the night wakings to the occupational therapist. By that point, I had connected Danny's wakings to Charlotte's. I put two and two together and finally wondered if SPD could be causing these wakings. (The only explanation I have for my denseness in this case is that I was experiencing EXTREME sleep deprivation. Remember, I also had a newborn at the time.)

The therapist informed me that the sleep disruptions were almost definitely because of her SPD. It was like her poor little over stimulated brain couldn't calm down, even in sleep.

Thankfully, after we started OT with Charlotte, the night wakings tapered off. As of this writing, Charlotte has not had an episode in almost a year. If she wakes up at night because of an accident, she goes immediately back to sleep once we've cleaned her up. No crying, no screaming for hours.

And that alone is worth the thousands of dollars we have paid for Occupational Therapy, equipment, and an iLS program!

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Check out the SOS Research blog for more posts on sleep and kids with special needs.

Hope Harris and her "Cousins Jamboree"

2011-07-11T20:05:00.012-05:00

When we got our copy of Hope Harris' "Cousins Jamboree", I have to admit that the record really took me by surprise.

Before we get into it, though, this needs to be said-- if you're a parent like me, you've probably been overly saturated with an enormous amount of Kids' music, mostly from videos. As a result, you've probably committed a great deal of it to memory. Against your will, even.

My guess is (stop me if I'm wrong here) when you see reviews for kid's music you probably get a little bit, er, I don't know-- let's say "apprehensive". Reading "It's got really catchy songs" may bring to mind times you were doing menial labor (the dishes) and humming "The Transformers" cartoon theme to yourself, and couldn't get it out of your head. all. day. long.

I'm no different. Even though I like some kids' music, the "old wounds" make me instantly skeptical when I'm presented with new choices in kid's music. Honestly, I used to give very little thought to whether my kids would actually like a certain type of music, because, let's face it-- I've fooled them. I've fooled them into liking all of "my music" so I can tolerate long car trips listening to "Grizzly Bear" and "Radiohead" without enduring any heckling from the peanut gallery.

Enter-- Hope Harris.

And suddenly, as I listen, I'm thinking a lot less about what preoccupies my musical tastes today, and thinking a lot more about what initially attracted me to music as a kid-- the energy.

At age 10, my first cassette purchase was the "Footloose" soundtrack. Granted, it was mostly a reactionary move--I really needed to listen to something other than the Kingston Trio and Henry Mancini, so I dug deep into my vacation allowance and reached for a tape from the Kmart clearance shelf-- one that I knew would provide a lot of energy and spirit to liven up the next 8 hours in the back seat of the station wagon. When I listen to the title track to Hope's "Cousins Jamboree", it takes me back to when I first fell in love with the "Blues Brothers" soundtrack. Big gospel organ sounds, big choruses, big rhythms-- all of it so huge and alien and exciting compared to the soft ballads that were usually coming out of the radio. Hope's music is like that-- big, friendly, and full of sound and energy, everything a growing child needs. Enjoy the video.

Other favorite tracks: "I Love Apples", "Hang on Friend", "I am an Alien", "Holcomb Rock Road".

Autism Book Reviews

2011-07-07T08:08:00.001-05:00

The Child with Autism at Home & in the Community by Kathy Labosh is a handy reference for parents ofkids with autism. Labosh gives tips on everything from how to avoid getting poop on yourself when your child has decided to play with the contents of his diaper (go up to him from behind and hook your hands under his armpits and carry him to the bathtub. I know, brilliant, right?) to ideas on how to help your child handle a movie theater.

Labosh, herself a mother of two sons with autism, has compiled a list of over 600 tips for making life with autism easier. I cannot tell you how many times, while reading this book, I wished fervently it had been published years ago. So many of these tips would have made an enormous difference in my life as a parent of a young kid with autism. Just the bathroom section alone could have saved me much in the way of misery with regards to potty training, baths and hair washing!

Still, there are more than enough tips for older kids that will assist me in our daily lives!

The Child with Autism Learns About Faith, also by Labosh, is a unique book filled

with scripture lessons. I have never seen a book like this for kids with special needs. Labosh gives us lessons for Cain and Abel, Noah, Abraham, and many other great Bible stories.

There are 15 lessons in all, and each provides a very detailed list of materials needed. The lesson plans are very easy to follow and outline a variety of activities. They include scripture reading, group activity time, and videos/songs.

Reading through the plans, it is obvious Labosh has a solid understanding of how kids with autism learn. Each lesson flows from one activity to the next quickly enough to keep kids interested and focused. Also, they all include fun visual aids (like stuffed animals for Noah's Ark) and activities.

Though the book seems to be geared specifically for Church leaders and/or Sunday School teachers, the lessons can also easily be used at home. I can't wait to use these lessons for our family scripture study!

Letter to Myself as a Newish Mom

2011-07-03T15:29:00.002-05:00

The other day, I was giving a mom some advice. This mom is very new to the world of SPD, autism, IEPs and all the other abbreviations that come with special needs kids. She was understandably confused and scared, and more than anything, she needed reassurance.

As I wrote my friend a message, I realized that I happened to have quite a lot of reassurance to give. Somewhat amazed, I recognized that I feel so infinitely different now than I did 6 years ago when I was just entering the world of SPD, autism, and special needs. I found myself wishing someone had given me some of this advice before Danny was diagnosed. I thought, I wish I could go back in time 7 years. I would have a heart-to-heart with myself back when I was just learning about SPD. There is just so much I wish I could say to that younger version of me, that woman who was struggling so mightily to hold everything together.

So, here’s what I would say to my Pre-SPD/Autism Self:

Dear My 32-Year-Old Self,

I know things are really, really rough for you right now. You’re consumed with worry about Danny. You wonder if he’ll ever speak and if he’ll ever grow out of those horrible meltdowns. You wonder if you’ll ever get to the point where you can enjoy normal outings to places like the park and the pool or if you’ll always have to wrestle a screaming, flailing, frenzied toddler into the car when it’s time to leave.
You worry that someday someone will report you to DCFS because Danny freaks out so badly when you leave the library it definitely sounds as if you are hurting him. Or kidnapping him.

You wonder if you’ll ever have fun at a family function again.

I know you’re exhausted and so, so discouraged.

You blame yourself. Of course, you do–that’s so typical of you, but you’re wrong. It is NOT your fault that Danny isn’t talking yet. It is not your fault that he has Sensory Processing Disorder, and it’s definitely not your fault that he throws tantrums loud enough to wake the dead.

Things are tough now, Patty, but here are some things I would like you to remember. Things that will make life much easier for you, if you can just muster enough faith to believe that they are true.

1–It’s going to be ok. As unbelievable as that sounds, it really does get better. So, so much better that it will take your breath away when you realize how far Danny has come! You will be able to take him to places you never imagined possible, like crowded museums and birthday parties. Danny will amaze you everyday with the strides he is making.

This will not happen magically; it will take hundreds of hours of research, and patience and accommodations, tons of trial and error and many, many tears (yours and Danny’s), but know this: your hard work WILL pay off. You will see results.

2–That said, you need to remember that there is no cure for Sensory Processing Disorder (or autism, but let’s not get ahead of ourselves. You won’t get that diagnosis for some years to come, so forget I said anything). Don’t waste too much of your time trying to find a cure or a quick fix or wishing Danny were “normal.” Danny will most probably always have sensory issues, but he will learn how to regulate himself and how to deal with his emotions. He will overcome some of his challenges, while others, he will learn to live with (much like how you have learned to live with YOUR sensory issues).

3–Get on the same page with Bil. He’s a wonderful husband and father, but he’s not a mind reader. He’s just dying to help you and Danny, but he needs your guidance. After all, he’s at work all day long; he’s not around to see all that goes into a typical day with Danny. And try to remember that, hard as it is to admit, yours is not the only way to do things. Bil may have different parenting methods than you, but you need that other perspective. And so do your kids!

4–Trust your instincts. They really don’t lead you astray. No matter what everyone else tells you, you are the expert on your kids and your instincts are spot on. (Well, usually. That instinct you get to throttle your kids when you’re PMSing? Yeah, that’s so not appropriate.)

5–It’s okay to be sad, even furious that you have to deal with SPD and autism. It’s okay to be angry that the universe saw fit to give these challenges to your son. Just find a way to channel that energy; you will feel infinitely better once you have a plan.

6–Don’t worry so much about what other people think and say. This is so important, but seeing as how I still struggle with this issue, I don’t know how much advice I can offer. Still, forget about the people who are critical. They have absolutely NO idea what it’s like to live a day in your life. And they just do not matter. Really! They don’t.

7–Give yourself a break. You’re doing the best you can, and you need to take care of yourself if you can ever hope to help your kids. Take time for yourself and don’t forget about your passions, like writing. Also, when your weight fluctuates as a result of stress, forgive yourself. After all, you are under tremendous pressure; criticizing yourself is only going to exacerbate your stress.

8–And now for potty training. Just let it go, it will come. It really will. It won’t come when you want it to, and Danny most definitely will not be potty trained as early as everyone says he should be, but it will happen.

Eventually.

Just have patience, make sure you always have plenty of bleach on hand, and remember that this difficulty is not his fault. Or yours, for that matter.

9–Be honest with your family and friends. Don’t downplay your struggles just to avoid being pitied. People want to help. And they can only do so if you tell them what you need. Pretending everything is fine when you’re barely hanging on doesn’t do anyone any favors.

On the other hand, be very careful who you turn to for help or acceptance. Just because people call you a “friend” doesn’t mean they are kind or validating, so quit looking to them for something they can’t give you. There are people in your life who are toxic and selfish, people who will suck the life out of you if you let them. Get rid of them. You don’t need “friends” like that, especially now!

10–Enjoy your children. Take time out from all the worrying to just have fun with your kids. Believe me, in the next 7 years, you are going to have LOADS of fun. While you may have to adjust your expectations, you will still be able to do so many great things with your kids. Sure, Disney World may not ever happen, but let’s be honest here: you HATE amusement parks as much as your kids would. Face it, your kids inherited many of their sensory problems from you. That’s ok! Use that knowledge to empower yourself.

11–You can handle this. You really, really can. It’s going to be so hard. You’ll cry oceans of tears in the years to come. You’ll rail against God and be snippy with your mother. But you are strong enough to handle this. You really are.

And so are your kids.

Love,
Future Patty,
the SPD mom who is not just surviving, but thriving. Honest!

If wishes were horses, beggars would ride

2011-06-30T14:34:00.008-05:00

I wish my toddler would never scream again unless in mortal danger. This kid's shrieks are so piercing, someday they will make my ears bleed. And he screeches for the most insignificant reasons: Charlotte's humming is bugging him or someone looks at him the wrong way.

I wish I looked like Kate Winslet.

I wish my kids enjoyed vegetables as much as they adore popsicles.

I wish I enjoyed vegetables as much as I love chocolate.

When Tommy is running wild through church (screaming, of course) and I am most obviously harried, I wish people would refrain from saying, "Someday when your kids are all grown up, you're going to miss this!" While they might actually be right, their proclamations are not helpful at all. (And really, I doubt the veracity of their claims. I will certainly miss my kids and their youthful antics. The screaming or tantrums? Definitely not.) You know what would be helpful? Insisting on babysitting my three feral monkeys for a few hours so I can have a break. And my ears can heal.

I wish I had a more extensive vocabulary. The longer I stay home with the kids, the more I say things like "dude" and "awesome" and "cool," rather than other more descriptive words I could use. And the longer I stumble over the most common word, like "shirt" or "swimming pool" and I of course keep forgetting the names of my kids.

I wish LEGOs were cheaper and came with a little man whose sole responsibility it is to clean all those multicolored blocks up and keep them organized by color in a handy, stylish storage system.

I wish instead of giving me loads of advice, as so many people feel compelled to do, they would tell me how admirable, saintlike, brilliant, and capable I am.

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Check out Sprite's Keeper for more posts about wishes. I'm sure at least some of them will be far less frivolous than mine.

Give Away Winners!

2011-06-29T08:45:00.003-05:00

I have two lucky winners to the Anti-Romantic Child give away!

And the winners are:

Spectrummy Mummy

AND

Licosa92

Congratulations!

If you would both please email me your addresses, I will send those on to the publishers who will mail you the books. Here's my email address: patty.porch@juno.com

"The Anti-Romantic Child" Review and Give Away

2011-06-20T14:13:00.002-05:00

Note: Information about the give away is at the bottom of the post!

When I first heard about the book "The Anti-Romantic Child: A Story of Unexpected Joy" by Priscilla Gilman, I was intrigued. As an English major in my undergrad studies, I had especially enjoyed my Romantic Literature course. Unfortunately, I haven't spent much time reading poetry in recent years. It seems I've been too immersed in autism and special needs books, magazines and websites. So imagine my delight in finding a book that combines those two worlds in one hard-to-put-down tome!

Gilman, a Literature professor details her unrealistic expectations of having a child. She anticipated a childhood that mirrored Wordsworth's ideals and her own youth: romantic, imaginative, spontaneous and free, full of exploration, running, jumping and frolicking.

The title refers to Gilman's son, the quintessential anti-romantic child. Unlike the definition of the word: "Imbued with or dominated by idealism, a desire for adventure," Benj was hardly adventurous. He did not quite fit his mother's expectations: he didn't romp and play, and he was most certainly not spontaneous. His speech was delayed, and he experienced many other developmental delays.

Though not formally diagnosed with autism, Benjamin definitely exhibited many autistic traits, including being inflexible and needing a stringent schedule and a lot of direct instruction.

Along with the stress of parenting a special needs child while working as a Literature professor, Gilman experienced a great deal of tension in her marriage. She chronicles the difficulties she faced, dealing with a man who was very much liker her son: inflexible, isolated and withdrawn.

Of all the autism and special needs books I have read, I have never related so closely with an author and mother. Perhaps it is the shared love of literature or the romantic, if somewhat unrealistic, expectations we both seemed to have of motherhood. At almost every page, I found myself nodding in agreement, especially at the passages which describe Gilman's disillusionment. Though she fiercely loves her son and motherhood, she readily admits that it turned out to be vastly different than she expected, a sentiment that I think most special needs parents can understand.

The Anti-Romantic Child is beautifully written, lyrical, realistic, and hopeful. I would have to say this is the most beautifully written book about special needs children that I have ever read. It is the story of one mother's love for her children and her journey towards letting go of those unrealistic expectations. It is the story of her total acceptance of her child as he is, rather than as she hoped he would be.

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And now for the great news: I have copies of this book to give away to two lucky readers. Here's how to enter to win!

1) Follow my blog and leave a comment on this post.

2) To get additional entries, post about this give away on your blog. Please be sure to send me the link, so I will know to enter your name in for a second time.

The give away ends at midnight on Sunday, June 26th. Good luck!

Another Plea for Help

2011-06-18T13:55:00.004-05:00

My wonderful son, Danny, was diagnosed with Sensory Processing Disorder over 5 years ago. Charlotte, my spunky, sweet 5-year-old was diagnosed with the disorder less than a year ago, and I am 99% sure that Tommy also has SPD.

This is a dysfunction that affects my family on a very real and daily basis, and we are definitely not alone. SPD is estimated to affect one in 20 kids, but many experts agree that number is actually quite low.

There is so much more research that needs to be done about SPD, research that can unravel the mysteries of this disorder which affects a kid's ability to learn and function in the real world. Families like mine need more research, more advances in the therapies and treatments for SPD.

And you can help us get that research! This month the SPD Foundation is in the running for a $250,000 grant. This money will go so far in doing the kind of research necessary to help families and kids with SPD.

Kids like my wonderful Danny, Charlotte and Tommy.

All you have to do is click on this link and vote! You can vote every single day. In fact, I plead with you to do so! And please, please, please spread the word!

http://www.vivint.com/givesbackproject/charity/1022

Thanks!

Waiting for Godot

2011-06-01T07:46:00.006-05:00

They say patience is a virtue. I know it's one I've been desperately trying to teach my kids and learn myself. I tell them that patience is so important, that if they can learn to wait patiently, so many good things will happen.

But, you know what? That's not the whole truth, is it?

Many of you already know that I applied for a Pepsi Refresh grant in May. I need funding to start a LEGO social skills group for Danny and other kids on the autism spectrum in my town.

Although this project has been very positive--I've had tremendous support from so many, many people--it has also been a serious test of my patience and my ability to wait.

I applied for the grant in April and then had to wait to see if my project was randomly accepted to be voted on. I had to wait what felt like weeks.

And then, once the voting started, I waited all month to see what would happen.

Now that the voting is over, I have to wait until Pepsi audits all the projects to make sure no one cheated. In about three weeks, I should find out for sure whether I won the grant or not.

So, more waiting. More patience.

In these instances, waiting patiently IS a virtue, one that I must strive for or I might just lose my mind.

On the other hand, if I really excelled at waiting, I might never have applied for this grant in the first place. One of the reasons I started this whole project was because I was tired of waiting.

Since Danny was a toddler and diagnosed with Sensory Processing Disorder (and later with autism), I feel like all I have been doing is waiting. Waiting for months to get an appointment with whichever expert I needed to see.

Waiting for those experts to hand down a diagnosis and a treatment plan.

Waiting for therapists to fit me in their already overbooked schedules. Waiting for school staff to evaluate whether Danny needed a social skills group or occupational therapy. Waiting for the therapy to start working and waiting for new therapy equipment to arrive so we could change it up.

You could say the last 6.5 years have been a study in waiting.

But, I've run out of patience.

I'm tired of waiting, which is why I jumped at the chance to start this social skills group. Imagine, I finally have the chance to make something happen without waiting for help from some expert or therapist. Once I have received the training, I will be the expert. I will be the one who helps my son. No more waiting.

I still believe in patience being a virtue and I will continue to cultivate this trait in my kids, but I will also try to focus their impatience in ways that are productive.

Because you know, I think there is a time for patience and a time for action.

And for me, the time for waiting has ended. Now, I'm ready to do something.

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For more posts on waiting, visit the wonderful, generous Jen at Sprite's Keeper, because yes, you guessed it: The Spin Cycle has returned!

I've been waiting for this day for months!

learning to ask for help

2011-05-27T09:20:00.011-05:00

I suck at asking for help. I'm not all that good at speaking up when someone hurts my feelings, either. I have been known to let people take advantage of me and help them out to the detriment of my sanity. Instead of standing up for myself, I'll mutter passive aggressive comments under my breath, eventually exploding from resentment when it gets to be too much.

These are terrible traits for a mother to have, I know. And parenting my son with autism has only highlighted my deficiencies. Ironically, I am the one charged with teaching my son how to express his emotions appropriately, how to ask for help rather than getting angry, how to say “no” when something makes him uncomfortable. Yes, me, the person who is quite likely the worst role model of these traits he could find.

I’ve been working on it, going to counseling, reading books, and stretching my assertive muscles, so that I can better teach my kids not to be a doormat, like their mom.

Still, even after therapy, the best lesson I have had was recently when I decided to start a LEGO social skills club in my town. The training for such a program is very expensive, so I applied for a Pepsi Refresh grant, which requires that people vote for your project. In the $5K category, to win the grant, your project needs to be in the top 20 out of more than 130 applicants.

I want to get this funding and start this group so much I can practically taste it. My son is obsessed with all things LEGO and is in desperate need of a decent social skills group in our town. When I found out I could combine teaching social skills with LEGOs, I knew I had found the perfect combination for my son.

In order to make this vision come true, though, I needed help. Lots of it. I have had to solicit everyone I know and everyone they know and ask them to vote for my project. I have had to send reminders to family members, old classmates, former sorority sisters, church members, acquaintances, and past coworkers, asking them to take a minute and help me out.

I absolutely hate imposing on other people; I feel unworthy of that help and hate to bother people, even if it is just to ask them to take a couple minutes and click their mouse a few times. It doesn't matter that many of these people are my friends and family--I still hate asking for things. I suppose there is a part of me that fears possible rejection. What if they say no to my plea? What would that say about me and what they think of me?

But I did it. I asked everyone I knew and even went further than that. I asked friends and family to post fliers at their workplaces and I asked them to spread the word to their Facebook friends. Occasionally, I apologized for bothering people and I worried that I was being annoying, but I soldiered on, knowing that I had to help my son no matter what it took.

Through it all, I have made some amazing discoveries about myself and others.

I learned how generous some people are; family, friends and strangers alike have flooded me with support and help. My cousin sent out an amazingly heartfelt email to all her friends and family. In it, she detailed how I babysat her newborn daughter full-time for about 6 months while I was in college, how my caring for her baby eased her mind and made it possible for her to return to work without having a nervous breakdown.

Other people sent out similar pleas, making me realize that these people really care about me and appreciate times when I have helped them. Friends like my BFF from high school and another from college who want to donate money and supplies to the group. And there are friends, like my husband's good buddy from Vegas (who I have only met in person once, I might add) who has done everything humanly possible to get his friends to vote for my project. (Thanks, Dan and Heather!)

Then, there are the strangers who have helped me, like the man in my town who donated some LEGOs when he heard about the group. Or Lisa from AutismWonderland who let me guest post and write about my project on her blog.

I can't even begin to list all the people who have graciously helped me. All the people who have somehow been affected by autism and who have tweeted, voted and facebooked for me. All the blog friends who have helped. It's been wonderful to see the power of a community that roots for each other and helps when possible.

And then there were the people who were less than helpful, people who I assumed would be onboard, but who, for whatever reason, weren’t all that supportive. People who refused to vote or spread the word on Facebook, and those who just ignored my pleas for help. Friends who I thought I could count on, but who let me down. People who rejected me. My biggest fear: rejection!

Though the rejection has stung, it didn't hurt nearly as much as I thought it would. I was able to see that their unwillingness to help wasn't a reflection of who I am or whether I'm worthy of help. It's merely a reflection of how far they are willing to go for their friend: me. And that's ok.

So, though my worst fear came true--some people did in fact say no--my wildest dream was also exceeded. So many people have made big sacrifices to help my project, people who know and love me, people in my community who want to make a difference here, and people who are complete strangers and who will in no way be benefited, but who know that helping one cause and group inevitably helps all of us.

I think it's natural to want to protect ourselves from rejection; we want to avoid being vulnerable so no one has the power to hurt us. But what I have learned from this experience is that when we open ourselves up to rejection, we are also opening ourselves up to acceptance and love, the likes of which will most certainly amaze us.

And when we break down and ask for help, we may just learn that there are fleets of people who've been waiting for a chance to assist us all along.

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If you are interested in voting for my Pepsi Refresh project, there are a few days left. The grant money will pay for my training and supplies to start a LEGO social skills group in my area. Thanks for your support! Just click here or click the image below.

Signs you may be stressed

2011-05-14T18:32:00.005-05:00

~~~For the life of you, despite being a relatively well-read, articulate woman, you cannot seem to spit out the appropriate words for the most banal situations. Can't remember the word for that wonderful device that cooks and reheats food in a manner of minutes?

Yeah, you're probably a touch on the stressed side.

That, or you're coming down with Alzheimer's.

Sorry, that probably doesn't help your stress levels much, huh?

~~~Your kids have to remind you to use your inside voice because your volume default for stressful situations is scream.

~~~You are consuming so much chocolate you have forgotten what vegetables taste like.

~~~When you try to exercise--because you know what a stress reliever it is--you have to stop every five minutes to complete some task that has come to mind and that can't wait. For the life of you, focusing on exercising is next to impossible.

~~~Your poor husband doesn't remember the last pleasant exchange you have had, but he vaguely remembers your honeymoon being nice.

~~~You're super sensitive to people's comments, especially if they are anything about your kids. Even comments that normally might make you smile, you find suspect, like when the acquaintance says, after meeting your child on the spectrum, "Wow, I would have never even suspected he had autism!" with a broad smile. You think, "What's THAT supposed to mean?" and get all paranoid.

~~~You run around your house trying to do about 74 things at once and just end up spilling apple juice and half cooked spaghetti all over your freshly washed floor.

~~~You forget your friend's birthday and actually feel irritated at HER. Why did her birthday have to come when you are so stressed out? Couldn't she have been just a touch more perceptive and pushed it back a week or two? I mean, seriously, the nerve!

~~~When the Red Cross calls to schedule your regular donation appointment, you feel giddy with excitement at the prospect of 30 whole minutes during which no kid could possibly interrupt you or talk to you or demand anything of you. You only wish the staff at the Red Cross would be less efficient and would keep you waiting at least 20 minutes. You'd relish the time to read outdated issues of Redbook and Good Housekeeping just because of the silence.

~~~At least once a month, you proclaim that you are quitting everything. You are DONE with the PTO, church, babysitting for friends, helping at school and will never, ever, ever, ever do another thing for someone else again, while your husband wisely nods and keeps his mouth shut. He knows it's PMS, but also knows he'd be taking his life into his own hands if he were to mention that fact.

~~~Did I mention you're probably eating enough chocolate to feed a small Third World village? And when you run out, you dsperately scrounge through 6-month-old Halloween candy, almost breaking a tooth on a stale Tootsie Roll, and you hate Tootsie Rolls.

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Check out the SOS Research Blog for more posts on stress. And if you missed it, I also wrote a post entitled "Signs Your Kid Might Be Stressed." Go read it and then reassure me that you understand where I'm coming from. Please, I beg you!

Signs your kid might be stressed

2011-05-14T14:53:00.001-05:00

~~~When your uncle benignly asks your kid about his recent, wondrous trip to Legoland, your sweet son screams, "Quit talking to me, you crazy guy!" and runs away.

~~~He's so scattered and frustrated that he cannot even complete the most mundane task like pulling down his pants, a task that he typically does with no problem at all--especially at times most likely to embarrass you.

~~~He spouts off gibberish that no one can understand OR he quotes movies without stopping and if you interrupt, he has to start all over again until he finally calms himself down which can often takes upwards of an hour.

~~~Eating is out of the question. Totally. It doesn't matter what you try to entice him with--cake, cookies, ice cream; suggesting these delicacies will only piss him off more when he's over stimulated and stressed.

~~~No matter what you ask him to do, he screams, "NO!" at the top of his lungs. You could be offering your kid an all-expense week-long trip to Legoland--the one in California, the mecca of LEGOs, the place he wishes we could move to--and he'd still refuse adamantly.

~~~The most minor incident can move him to tears. A kid who is normally immune to most pain, he will bawl after bumping his arm and won't stop crying until you administer all manner of antibiotic creams and band-aids.

How about you? Tell me your kids do some of these things too.... Please!

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This post is part of the BoB series on stress and anxiety.

Courage

2011-05-12T12:33:00.001-05:00

The wonderful Lisa from Autism Wonderland has allowed me to guest post today. Check out my post here.

And before you do, please let me take a minute to thank you from the bottom of my heart for all your support with my LEGO social skills idea. We've been in number 2 for over a week now, and I have you to thank for it! Keep voting!

Pickles

2011-05-09T07:12:00.002-05:00

I'm over at The Thinking Person's Guide to Autism today, sharing the story of when a Subway worker was kind to Danny on the day of his autism diagnosis. Check me out, if you have the time!

And thank you so much for all your support of my Pepsi Refresh project to start a LEGO social skills group. Please keep voting here!

Ain't too proud to beg!

2011-05-04T23:06:00.007-05:00

Look at this kid.

Is this not the face of a child who NEEDS a LEGO Club?

Please help us by voting on Pepsi Refresh for our LEGO social skills group idea. We need your votes, so Danny can start building with LEGOs and making friends!

Click here to learn more about voting. And consider voting for my partners (They are listed on the page that will pop up when you click on the link: http://vote.torefresh.me/lyc (--dead link now--))!

And if you're so inclined, I would be eternally grateful if got all your friends, neighbors, acquaintances, servants, and dogwalkers to vote as well! Do whatever it takes: bribery, extortion, threats, flattery, blackmail. Whatever it takes, but nothing illegal, ok?

No longer in denial

2011-05-01T14:03:00.002-05:00

Since Danny was diagnosed with high functioning autism over a year ago, I have wrestled with denial.

On good days, days where Danny is superbly cooperative and pleasant and easygoing, I wonder, could Dr. M have made a mistake? Did I maybe answer some questions incorrectly? Could Danny actually just have severe SPD which looks like autism? Is there a chance he's been misdiagnosed?

Most days, our regular days, you know, the days where even the most mundane aspects of our day (eating, dressing, using the toilet) are a struggle?

Those days I have less difficulty believing that Danny does indeed have autism.

Still, the doubt has lingered and I vacillate between wondering about the accuracy of his diagnosis and being mostly convinced of its validity.

Until Tuesday.

While at our local ice cream stand, we ran into a classmate of Danny's from last year. Claire greeted Danny excitedly, but until I prompted him, Danny said nothing. He was excited to see her, however, and launched into a one-sided conversation from several yards away. He could tell she wasn't listening, but it was obvious he had no idea wh

at to do about it.

It didn't occur to Danny to come closer to Claire so she could actually hear him. He didn't say her name so she would realize he was talking to her, nor did he realize that asking her a question could ensure she was part of the conversation. And never in a million years would he recognize that the topic of LEGOs is not necessarily everyone's idea of a scintillating conversation subject.

The result? A very one-sided, unsuccessful interaction. In fact, "interaction" isn't even a valid definition of what took place, as no interacting happened at all.

It almost broke my heart, mostly because it was obvious how much he wanted to connect with Claire. He made attempt after attempt to engage her, but until I guided them both a bit, his attempts fell completely flat.

As I sat there and watched Danny try to interact, it hit me like those huge anvils in a Roadrunner cartoon. Danny does have autism. There's really no denying it.

The certainty took my breath away.

My son, my wonderful, loving, funny boy has autism.

No more denial to buffer me from reality; autism is now our reality.

And I think I'm ok with that.

More or less.

But that doesn't mean I've given up. I'm still going to do whatever it takes to help my son as he navigates this treacherous world we live in.

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Please take a minute of your time and vote for my Lego Social Club project on Pepsi Refresh. I'm applying for a grant to fund my training and supplies to start this awesome social skills group in our town for kids on the spectrum or those who have any social developmental delays.

Danny can't wait to get started and neither can I!

And we need your help!

Click here to vote!

http://www.refresheverything.com/legoclub

Thanks!

public enemy number 1

2011-04-28T22:59:00.002-05:00

Tonight I decided that Charlotte should try sleeping without a diaper on. She is completely potty trained, but we have been too lazy to bother trying to get her to stay dry through the night. In preparation for sleep, I asked her to sit on the toilet and try to pee.

Charlotte had a fit. Apparently, this was the dumbest idea ever.

She screamed that she wanted her father, that she didn't want to pee.

I finally convinced her (after many threats) to sit on the toilet and she shut the door behind her. She wanted nothing to do with me.

Unbeknownst to her, I stood outside the bathroom door to ascertain whether she actually voided her bladder.

This is what I heard:

"Mommy is so mean. I don't want to pee. I don't like mommy. I want daddy."

Then came crying:

"I didn't pee! No pee is coming out of my butt!" Sob, sob, sob.

I'm thinking maybe if she has an anatomy lesson, this potty training thing might go smoother. Something to consider.

"The Family Garden" Record Review

2011-04-27T10:00:00.001-05:00

Guest post by Bil, my loyal lackey and husband and phonolog-head. (He's big into music, folks, so you can trust his review!)

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Billy Kelly is a household name around these parts...ask anyone who remembers seeing the St. Louis Cardinals play in 1910. Oh wait, dangit, that's the wrong Billy Kelly. Ahem. Billy Kelly was actually an Irish Boxer from Derry in Northern Ireland who won the British Featherweight title in 1955, and passed away in his native home of Derry... oo gosh, can I just start over here?

The Billy Kelly that I want to tell you about is a really great musician who recorded a really great album called "the Family Garden".

Nowadays people call this stuff "kindie rock", but in the intelligent assessment of Seymour Stein, there are only two types of music: Bad and Good... and Billy Kelly? Definitely Good.

Why will kids and parents like it? Because they will agree, that it's funny, and fun.

Admittedly, I'm the type of listener that can be very forgiving of even the most amateur, sloppy, or juvenile of efforts, provided it carries that which is most precious, the most precious of all musical ingredients: Sincerity. The Shaggs, Daniel Johnston... Like a stereogram, it's arbitrary noise to the casual listener -- unless you make the effort to perceive the hidden truth of it.

So when a record like "The Family Garden" comes along and is BOTH sincere AND is totally enjoyable to listen to? I'm sold.
It starts off not with a four-count, or even a song, but a couple goofy non-sequiters ("Hey, get this man a Stromboli") and then the magic begins: a stew of family fun, childlike wonder, patriotism, friendship, revisionist history, false song endings, the 80's, and of course, a generous helping of doot-doot-doodly-doots.

Some of my favorite moments:
"It's Close Enough", a hilarious retelling of why some of the great monuments are imperfect (see song title.)
"We Could Be Pen Pals", I mean come on, where Molly Ledford is involved, you know it's going to be good.
"The Invention of the Straw/Revenge of Straw", I'm afraid I'll ruin it if I say anything about this gem of a song, so I will say nothing at all.
"That Old American Flag", a great patriotic ode to Betsy Ross' fine needlepoint work.
and "Rock Lobster", a faithful, spunky rendition of the B-52s' hit song.

Oh yeah, and an added goody for those of us who have a refrigerator covered in kids doodles, who remember days of sitting mesmerized at the edge of the bed staring deeply into the jacket and the liner notes... the CD is completely bathed in tiny little doodles and hand drawn notes to be discovered and enjoyed.

Billy Kelly, thanks for "The Family Garden" and the labor of love that it is.

Review of Joanie Leeds' "What a Zoo!"

2011-04-26T20:26:00.003-05:00

What can I say about Joanie Leeds' new kids' cd "What a Zoo?" besides, it's got a good beat and you can dance to it? In fact, if you happen to have a kid like Charlotte, it's pretty much guaranteed that you will dance to this cd if it is playing within earshot. My one complaint is that whenever we play this album in the house, I never get any work done, because my daughter insists on dancing with me for every. single. song.

So, if you are interested in a kids' cd that is rocking and that will get your heart rate up, you've come to the right place!

The cd is sporting a zoo theme, obviously, so all the songs are about animals. Not necessarily an original theme when it comes to kids' cd's, but Leeds puts a decidedly original spin on the songs. This cd is not full of mundane songs about dogs and cats, but boasts ditties about tofurky, mosquitoes and manatees.

My favorite song in the whole album is "Tofurky Song" that is yes, about tofu turkey. That someone would include tofurky on an animal cd wins immediate points in my book. Can you get any funnier? I mean, how can you not smile at these lyrics: "Tofurky's not a turkey. It doesn't run or fly. Looks a little mushy, doesn't have a turkey tushy, but I'll give it a try."

Bil's been singing this tofurky song to Charlotte so often that she has all the lyrics memorized, and it never ceases to crack me up when I hear her singing this song to herself.

"Froggie Went a Courtin'" takes an old favorite and jazzes it up with a hip hop/rap bridge from guest artist Secret Agent 23 Skidoo, which totally freshens up the song and makes it memorable.

"Happy as a clam" includes all kinds of fun animal metaphors or as Leeds calls them, "animal-isms." The entire song consists of different animal colloquialisms that we use in our everyday speech, like "puppy love," "busy bee," "silly goose," and "has the cat got your tongue." And that's just the beginning; in the entire song, she never repeats an animal-ism.

I thoroughly enjoy listening to this cd. The songs are catchy and you never feel like you are listening to a kids' cd, which is a major selling point for me. The lyrics are clever and the songs catchy and fun. But the real test of the cd is that Charlotte just lights up when I put this it in the stereo. She loves the funny and silly imagery and she can't help but dance to the songs.

Come to think of it, neither can I!

LEGO Social Club

2011-04-24T20:04:00.006-05:00

If you've been reading my blog for very long, it's likely that you know how worried I am about Danny's social skills. There is one social skills group in our area, but it is over 30 miles away, which cost a lot in gas money and got us home very late on a school night. Also, I felt like Danny needed more in-depth help with social skills.

Over the last several months, I have thought and prayed and worried about this subject. Danny's biggest difficulty is in interacting with other kids and making friends, a difficulty that is only getting tougher the older he gets.

After writing a post for Hartley's Life with 3 Boys about LEGOs, I started thinking about how cool it would be for Danny if I started a LEGO social skills club. He is absolutely obsessed with those blocks, so why not use that to our advantage?

Shortly after this thought occurred to me, a friend forwarded me a website for the Center for Neurological and Neurodevelopmental Health, a center that just so happens to have started a LEGO social skills group, based on lots of research.

After contacting them, I discovered that though they are in New Jersey, they could provide me with training and certification through DVDs and the internet. The only catch? It would cost me close to $1,000.

I decided to forget the training and set up my own club, but my husband came up with an even better idea. He knew that through the Pepsi Refresh program, I could apply for a grant. I had only 24 hours before the application deadline, and we made it.

So, now starting on May 1st, I just need to convince every person I know and every person they know to vote for my project throughout the month of May.

Here's where you can help! I set up a facebook page for my LEGO club and would so appreciate it if you would like it. I will be sending out reminders and instructions on how to vote through that page. And if you're not on FB, never fear, I'll be posting information on my blog.

I don't want to inundate you, but I would be forever grateful for your help in this matter. I feel very strongly that this club will help not just Danny, but the other kids who will be involved, in ways that could potentially change their lives!

a quota

2011-04-22T08:00:00.003-05:00

Since becoming an adult, I've had this sort of subconscious philosophy that there should be a quota of bad things that can happen to one person or family. Deep down, I guess I believe that the universe should be fair in its distribution of tragedies. If one family is suffering with a terminally ill child, for example, the parents should not become sick themselves. Or they shouldn't have severe money troubles that lead to bankruptcy. The illness of a child is more than enough for one family to deal with. Why not pass the money problems on to a family that seems to have no real problems?

About 5 years ago, I had a lot hit me at once. My parents separated not long after my grandmother died. We were gearing up for a meeting with a pediatrician who we were sure was going to diagnose Danny with autism. Then, my mom was told she had cancer.

It was devastating. Those months were the very hardest of my life. I was completely shaken; my confidence in the world was broken. If all these things could happen at once, I realized, I was no longer safe. Anything bad could happen and I would be powerless to stop it.

Before this, I think I thought that if one bad thing happened, I would probably be safe from another one for a while. Like, if my mom was diagnosed with cancer, I shouldn't also have to deal with autism or my parents' separation.

I still believe this should be true, though I know it's not.

This week, I found out that a bloggy friend's young autistic son was diagnosed with cancer.

Cancer.

The kid is three. And he has autism.

See, in my mind, the fact that he has autism should have protected that family from this sort of terrible, nightmarish tragedy. The autism should have filled that family's quota for mind-numbing, stress-filled, terrifying crises. At least for a while. I know autism isn't necessarily a tragedy to many people, but it does cause much in the way of stress and difficulty.

I know life is not fair, but sometimes it seems so cruel it takes my breath away.

And I just don't think it should be this way.

Reasons I have not yet typed up last week's PTO minutes

2011-04-20T19:31:00.011-05:00

~~I've been too busy catching up on two weeks' worth of "Dancing with the Stars." Who knew that my first love, Ralph Macchio, was so smooth on his feet? I guess they weren't lying in all those Tiger Beat magazines when they cited slow dancing and walks on the beach as his turn-ons.

Sadly, I think I have aged much more than Ralph has in the last 25 years. The man looks almost exactly the same as he did when he first stole my heart in the movie "The Outsiders." Oh, Johnny Cakes, you're just as cute as ever.

Except for the hair. That's a touch on the weird side. I'm thinking toupee. What do you think?

~~I'm passive aggressively procrastinating because I am resentful of the passive aggressive manner in which I was recruited to be the PTO secretary. Real mature, huh?

~~Danny came home sick Monday and I let him stay home Tuesday as well, partly because I was afraid he'd puke again at school and the teacher would think I was a bad mom and partly because I am a bad mom and didn't want to get up early to take him to school. I also didn't feel like dealing with his homework, so I figured letting him skip one day would be the ticket to freedom.

~~I spent the better part of an hour today helping Danny with all the math homework he missed while he was out sick. Apparently, now that he's a first grader, he's expected to make up missed work. Wish I had known that before I spent yesterday letting him play hooky. Stupid. Stupid. Stupid.

~~Why haven't I typed up the dratted minutes? I just don't want to do it.

~~Nobody reads them anyway.

~~Every time I have one second to myself, my toddler comes up to me begging for yogurt. Shoot. Did I say that aloud? Oh, great, here he comes again. If he hears the word mentioned, he goes into overdrive, demanding that I drop everything and serve him the nasty stuff. The kid's a yogurt fiend. He's going to have Yoplait running through his veins if he keeps this up.

~~I'm thinking if I procrastinate long enough, the end of school will be here and everyone will have forgotten all about the meeting.

~~I've been spending all my extra free time concocting good excuses to get me out of this responsibility.

~~There have been an inordinate number of messes and loads of laundry to clean up this week. For some inexplicable reason, Charlotte has had many accidents the last few days. I don't know if it's because we are putting her to bed without a diaper on; obviously that accounts for the night-time accidents, like the times that she has woken up, pulled her pants off, peed on her blanket, redressed and went back to sleep. Seriously, talk about the ultimate in laziness.

What it doesn't account for is the midday accidents. Apparently, she is forgetting to stop and use the bathroom. What's even crazier, though, is tonight's accident. Before bed, I instructed her to go to the bathroom. When I walked in on her, she was sitting on the toilet on top of the toilet lid in a pool of pee. She explained that she "forgot to put the lid up."

I will never, ever, ever have it easy in the potty training department, will I? *sob*

~~I've been eavesdropping on my kids' conversations and alternately laughing and cringing to myself. Here's one snippet:

Charlotte: Hey, get your butt out of my face!
Danny: Get your face out of my butt!

Cue maniacal laughter.

Many thanks, Jerry Bruckheimer, for that gem of a movie, "G-Force" and all it is teaching my kids.

Think the PTO president will think any of these excuses are legitimate reasons for shirking my responsibility?

Water Safety

2011-04-18T15:14:00.001-05:00

Compliments of Autism Asperger’s Digest

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Water Safety: The Ultimate Life Skill
By James Ball, BCBA-D
Excerpt reprinted with permission from Autism Asperger’s Digest, July/August 2010 issue. www.AutismDigest.com

According to the National Autism Association, drowning is the #1 cause of injury-related deaths in children with an autism spectrum disorder. In 2005, 14 children with ASD died from drowning, when these children wandered off and were attracted to the water. Children with ASD do not fear “death” the way we do. At early ages, they do not understand the finality of death nor are they afraid of those things that could cause death, like water.

We know:
- Kids drown without a sound.
- It takes approximately one inch of water to drown in – a frightening statistic.
- 90% of drowning deaths occur while the child is being supervised.

Therefore, it is critical that, right from the very beginning when our kids are young, we teach them water safety and how to swim. Learning this lesson too late can be tragic and heartbreaking.

Teaching Water Safety and Swimming

Sensory Issues
A significant proportion of kids with an ASD have sensory issues, which complicates how we teach them to swim. The old-fashioned way our parents did it (throw you in and see what happens) just doesn’t float. (Yup, that’s what my father did, and I’m lucky I made it!) Kids with an ASD may need to ease into the pool and get used to the water before they are able to enjoy the experience enough for concrete lessons to start. Others may love the pressure they get from the water and just jump right in, not cognizant of drowning as a danger. It’s important we make the experience enjoyable from the start. From there you can teach them what they need to do once in the water.

Teach Swimming
The same teaching strategies that make kids with an ASD successful in the classroom will also make the child a successful swimmer.
- Minimal Distractions
Make every attempt to minimize distraction while the child is in the water. If there are a lot of people in the pool turn the child around, so she can’t see what is going on at the other end of the pool. Also, pool areas echo, so be prepared if the child has any vocal “stims” and try to redirect the child back to the swimming. Or schedule lessons on off times, when less people are present, or, if needed, do private lessons.
- Use of Visuals
Use pictures to show the child the steps involved in swimming. Combing the visual with your explanation will give him multiple ways of understanding the sequence of steps and your expectations. Laminate the pictures and bring them in the pool. You may also want to show the child a video of swimming prior to getting in the pool. Video modeling is a great way to teach new skills. If you can’t find a pre-packaged teaching video, create one of your own using a neurotypical sibling or friend as the “actor.”
- Consistency
Whatever approach you decide to use (there are tons of examples on the web) make sure you use it consistently every time. Spectrum children learn through repetition, and lots of it!
- Task Analyze
Break down the steps to swimming and teach each one until the child can do the skill with little or no guidance. Do not overwhelm the child with too much information all at one time. Just putting his face in the water may be a huge accomplishment in and of itself!

Teach Water Safety
Swimming and water safety are not synonymous. They are different skills and should be addressed differently. All children, whether or not they ever want to put their little toe in the water, should be taught water safety skills. And the #1 rule is this: unless an adult is present, the child should never go into any body of water, be it a kiddie or adult pool, a fountain, a stream, a pond or lake, or the ocean. They need to be taught this very specifically and concretely.

The more able child: Many children on the autism spectrum are highly rule driven (sometimes to a fault). In this instance it is a great thing! Make specific rules around water.

- You do not go near water without an adult with you. You may even make it more specific, adding distance to the water, how near the adult should be (i.e., an arm’s length away, in visual sight, holding your hand, etc.) and/or citing specific people, like Mommy/Daddy/Grandpa).

After the rule is established, practice it. Don’t assume the rule on paper makes complete sense to the child in a real life situation. Take the child around water and see what happens. You want to know if there are loopholes in your thinking and make necessary adjustments in your teaching. Each time the child follows the rule, heap on the praise and reinforcement.

The less able child: We still use rules for the less able child, but we may break them down more concretely and use more visuals to teach them. For instance, the rule might be something like this: “You do not go into the water without a familiar adult holding your hand.” Have the child take your hand, walk to the pool and jump in with you. Every other time the child is around a stream, pool of any sort, lake or ocean, have her take your hand, walk to the water and go in together. Again, reinforce the child when he follows the rule and does what is expected.

Water is an awesome sensory experience for children with an ASD. It can foster language, social skills, and fine/gross motor development. It can also be a place where tragedy can strike at any moment. Remember, enjoy the water, but also respect it. Teach your child what to do around water and how to be safe. Then go out and have a wonderful summer!

Find more information about swim instruction at one of these websites.
American Red Cross. www.redcross.org
NCPAD Swimming Resource. www.ncpad.org/videos/fact_sheet.php?sheet=315&view=all
Swim Lessons.com. www.swimlessons.com
YMCA. www.ymca.net/programs

BIO
A Board Certified Behavior Analyst, Jim has been working in the field of autism for 20+ years helping children, teens and adults with ASD. An author and requested national speaker, Jim runs JB Autism Consulting Services, working with schools to find success in designing programs for students with autism/Asperger’s. Learn more at www.jbautismconsulting.com.

Copyright © Autism Asperger’s Digest. All Rights Reserved. www.AutismDigest.com

sometimes stranger anxiety is just stranger anxiety

2011-04-15T09:27:00.007-05:00

Ever since the long-winded and incredibly expensive developmental pediatrician told me that my youngest child has a 1 in 20 chance of being diagnosed with autism (because his older brother has it), I have been hyper vigilant for any possible symptoms in my baby. I have worried that somewhere along the line, Tommy would start showing signs of developmental delay.

This anxiety has colored every milestone in his life for me. When Tommy started walking on time, I celebrated, but worried that he wouldn't talk when he was supposed to. When Tommy did start talking, I was concerned that he seemed to be echoing everything he heard. Could he have echolalia? Once he started speaking in sentences and I became convinced he does not, in fact, have echolalia, I prayed that his obsession with Thomas the Train was not a sign of Asperger's Syndrome.

If there is a symptom of autism spectrum disorder, you can be guaranteed I have been watching for it in my poor baby, zeroing in on any aberrant behavior like a heat-seeking missile.

I am pretty sure he is fine developmentally and I do not believe he has autism. Still, I worry.

And because this is on my mind all the time, and because I worry in a way I never would have had I not already had a child on the spectrum, and because I am slightly neurotic, I have a tendency to maybe be a touch on the sensitive side if someone even remotely suggests that my 2 youngest kids might not be 100% developmentally perfect.

Yesterday, I took Charlotte in for her kindergarten screening. When we got to the site, the school social worker (who knows my family because of her work with Danny) suggested I take Tommy in to the Early Intervention screening while I waited for Charlotte. She informed me that children as young as birth can be screened just to make sure they are on track developmentally. She must have forgotten how intimately familiar I am with the EI system.

So, there I was, being strong-armed into taking Tommy into a room with some early education lady to see if he's on track. Just for grins. You know, in case I wasn't already worn raw from the dozens and dozens of evaluations, screenings, and tests I have had to subject Danny to in his 7 short years of life.

I didn't want to do it. I just didn't. It's not that I was afraid they'd find something wrong with Tommy, though I would be lying if I said that this irrational idea hadn't crossed my mind. I just didn't feel up to the examination, the scrutiny, and the indirect, if unintended analysis of my parenting and teaching ability. Because I don't care what anyone says, there is an unspoken implication that the parents are either to blame or responsible for what her kid can and cannot do.

It's true.

I have spoken with so many parents who proudly bragged about how well their kid did on some evaluation, believing in their hearts that it was a reflection of how well they prepared their child.

And I have heard other parents abashedly explain that little Jimmy can't button buttons because he has no darn buttons on any of his clothes. And Susie doesn't know where her knuckles are because her mother was too busy keeping her fed and reading her books to even think about teaching her such an obscure body part. These parents come away feeling inadequate, like they somehow have failed their kids. And that just sucks.

On top of that, I just knew, I KNEW that my delightful 2-year-old was not going to go along with what this smiling scary stranger wanted him to do.

The kid may not be developmentally delayed, but he IS stubborn.

Against my wishes, I allowed myself to be ushered into a classroom where I poured myself into a child-sized chair while holding a crying toddler on my lap. Right from the start, alarm bells went off in Miss Early Intervention's mind about my child. The first question out of her mouth was, "Do you stay home with Tommy?"

I couldn't help feeling like she blamed Tommy's crying on my decision to stay home. Especially after she asked the question again not 10 minutes later.

Tommy, as predicted, wanted nothing to do with Miss EI and her reindeer games. He wasn't interested in her boring two-piece puzzle. That kind of thing was old hat for Tom. He wasn't about to give in to her interrogation and answer her questions. He kept his lips glued together, not deigning to answer any of her questions.

Miss EI looked at me with concern and started grilling me. Does Tommy spend time with other people? When there are other kids around, does he play with them? If there are other people around, does Tommy go off in a corner by himself?

I mentally rolled my eyes when despite my every effort to reassure her that Tommy was actually quite a social little boy, she encouraged me to call her in three months if I had any concerns. Even after she conceded that Tommy's speech was advanced (he did finally start talking, but still refused to answer her questions, instead choosing to speak about his own topics of choice), she persisted in voicing concerns over his stranger anxiety.

Which is when I informed her that my oldest has autism, that I was well aware of the warning signs and I had been watching for symptoms for the last 2 years.

I know in my heart that Tom is fine. I know he most likely has Sensory Processing Disorder, but I am also convinced that autism is not a diagnosis he will ever receive. I am convinced he is right on track developmentally.

Still, sitting in that room, being grilled by a stranger who knew nothing about my son, made me doubt myself, made me worry I was wrong. Never mind that I am the kid's mother. Never mind that I have a Master's degree in education. Never mind that I am probably much better informed about autism than Miss EI is. And never mind that I know she was only doing her job. She wasn't necessarily saying Tommy was autistic. She was just bringing up issues that she felt should be raised.

It doesn't matter. I still doubted myself.

And this is why I detest these stupid screenings, though I know they are important and serve a purpose: because I allow them to make me doubt my judgment, which is no one's fault but my own.

NOTE: I don't intend to criticize the Early Intervention worker. She was just doing her job, and was doing it right. I think it's important to ask those questions, to make parents aware of autism, so they can get their kids diagnosed early. I am completely supportive of that. It's just that the whole process is less than pleasant for me. Because I'm cranky and PMS-ing and super, super sensitive.

Review of Asperger's in Pink and Giveaway!

2011-04-14T08:57:00.003-05:00

In honor of Autism Awareness Month, April's Best of the Best is a Book Review and Giveaway Bonanza. Check out S-O-S Research to see a list of all the many bloggers who are posting reviews of books dealing with special needs, like autism, SPD, ADHD, etc. Plus, many of these bloggers are hosting giveaways, so be sure to check them out!

I decided to post a review of Asperger's in Pink that I wrote for OUR Journey THRU Autism, who hosts an amazing book club every month, which you should really check out!

Don't forget to read to the bottom of the post to see how to enter this giveaway and have a chance to win your very own copy of Asperger's in Pink by Julie Clark!

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If you happen to have a child with Asperger's Syndrome, chances are it is a boy. According to statistics, there are 4 boys with Asperger's to every 1 girl who has the disorder. It's no wonder that parents like Julie Clark experience doubt and resistance when others find out she has a daughter, Kristina, who has Asperger's Syndrome.

Time and again, people have questioned Kristina's diagnosis. Even teachers and other professionals have expressed doubt and disbelief and have even pushed her to get another opinion. Clark is sure, however; Kristina definitely has Asperger's Syndrome.

It's not just that more boys are diagnosed with the syndrome, though. Boys and girls often have different symptoms and react differently to the world, which just adds to the confusion.

This is why Clark decided to write a book about her family's experience with Asperger's. Her goal is to share her experience in the hopes of possibly educating other people about Asperger's in girls. Asperger's in Pink, this month's OJTA book club selection, chronicles Clark's family's journey into the world of Asperger's Syndrome.

Asperger's in Pink is labeled as a must read for "raising (or being!) a girl with Aspeger's." But I wouldn't stop there. As a mother of a son with high-functioning autism, I learned quite a bit from this book. Clark includes lots of information and insight on how to work with school officials and teachers to get your child the services she needs.

She also discusses many daily challenges facing those on the autism spectrum, including difficulties with transitions, challenges with being flexible, and of course, the problems many face with social skills. Intermingled with the advice is a great big helping of personal stories--many of which will make you smile as you relate to Clark and her challenges raising her daughter.

If you'd like to read an interview I did with author Julie Clark, click here.

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OK, so here's the easy part. In order to enter the giveaway, you just need to leave a comment here on my blog. For a chance for a second entry you can follow my blog as well. The giveaway will run through Monday, April 25th.

Here are some more reviews of amazing books about autism and SPD. I highly recommend each of these books!

Building Sensory Friendly Classrooms

Asperger's on the Job

Coloring Outside Autism's Lines

Author Interview

Now I See the Moon by Elaine Hall

Creative? Who, Me?

2011-04-08T08:14:00.001-05:00

Last month’s issue of O Magazine is dedicated to developing your creativity. My first instinct was to cast aside the magazine and finish reading the SPD book I’m reviewing. After all, I’ve known for years that I’m not the creative type. I can barely draw a stick figure, and my flute playing has always been mediocre at best. I’m not much into decorating my house and my scrapbook layouts often look like they were designed by my children.

I read magazines to entertain myself, not to feel like a failure, which is why I always skip the fashion sections. I was not in the mood for a lesson in creativity. I had a to do list a mile long; adding oil painting to it was not going to happen.

Still, my curiosity got the better of me one morning. The kids were playing nicely together and I actually got to eat my breakfast in peace. Not knowing what to do with myself, I opened the cast aside magazine.

I turned to an article entitled “The Creation Myth” and–though I’m loathe to admit this–I would have to say I had an “Aha moment.”

I'm over at the SPD Blogger Network today, so click here to read more.....

Punishment gone awry

2011-04-06T14:50:00.005-05:00

This morning I uttered a phrase that I now regret even more than I regret eating all those cinnamon rolls at lunchtime. And believe me, the stomachache and lethargy that come from major carb gorging ain't nothing to sneeze at.

We were, as per usual, running late this morning. And as always, the more I snapped at the kids, the more they slowed down. I told Danny and Charlotte to get dressed and I foolishly continued doing whatever chore I was busy with.

When I heard the sound of Legos bashing against each other, I decided I should investigate, because unless Danny was somehow able to construct pants out of tiny, colored blocks, (and considering his major tactile aversion to anything but sweats) it was obvious he was not getting dressed.

Sure enough, neither of my kids had made any progress in dressing themselves, which is when I decided to issue an ultimatum.

"If you do not get dressed in 3 minutes, you will be in big trouble. No Lego.com for Danny and no videos all day long for Charlotte."

Almost the minute those words were uttered, I knew I had made an enormous mistake. It all happened in slow motion; I could almost see the words in a conversation bubble over my head. I tried to take them back, but to no avail. I was going to have to see this one through.

Thankfully, Danny, from experience, knew I wasn't bluffing, so he quickly got dressed and brushed his teeth in the most angelic and cooperative manner imaginable. He wasn't prepared to go through Lego.com withdrawals this afternoon. Smart kid.

Charlotte, on the other hand, looked me right in the eye with a defiant glare and said, "I don't want videos."

My first thought was, "Crud, what am I going to use for punishments now if videos no longer hold their sway? She must have lost her appetite for mindless entertainment. What will I do to get some peace and quiet around here?"

I should not have wasted a moment worrying.

Within minutes of returning from taking Danny to school, Charlotte started nagging me for a video. I gently reminded her of the punishment that had been issued, seriously, maybe 15 minutes before, but it did nothing to calm her down.

She ramped up from nagging and started begging. When that didn't work, wailing and gnashing her teeth ensued. I showered with Charlotte knocking on the bathroom door, shrieking, "I want a MOOOOOOOOOOOOVIE!!!! Mommy! Gimme a MOOOOOOOOOOOOOVIE!"

Then, my clever little girl, who appears so sweet and cherubic, but who at times I swear must be possessed by an evil spirit, upped the ante yet again, and spent the next 30 minutes mercilessly torturing her little brother, knowing full well that mommy has a very low tolerance for the screaming of toddlers and babies.

She's nothing if not smart and determined.

Luckily, she was distracted by the arrival of her friend, so I got about 2 hours of peace, but immediately after lunch, she started in again.

And hasn't let up since.

I think at this point she doesn't even care about the movie. No, now it's a big game to her to see how miserable she can make me. To prove to me that issuing this kind of punishment is a big mistake.

And believe me, I have learned my lesson.

There's about 3 and a half hours to bedtime. Think I'll make it?

open mouth, insert foot

2011-04-03T21:42:00.004-05:00

You know the really insensitive or thoughtless remarks that come out of people's mouths about any number of personal issues? You know, like stupid comments about an acquaintance's announcement that she's pregnant? Or the dumb things some people say when they hear someone close to you has died? Or the extremely inappropriate questions that sometimes get asked when you're thinking of adopting?

Well, I have made them all.

Seriously, I have.

I once stupidly referred to my sister's adopted children's birth parents as their "real parents." (I didn't mean it like that. Really, I didn't, and I feel terrible!)

I accidentally used the word "retard" in front of an acquaintance whose sister I later found out has Down's Syndrome. (In my defense, this happened like 15 years ago, but I still cringe at the memory.)

And one time, when an acquaintance told me she was pregnant, I asked if they had been trying. (I know. I KNOW! I have no idea why that question left my lips. There is no defense besides I am really, really stupid, especially in social situations.)

And frankly, these are not even the worst of my experiences, but I am too ashamed to share any others.

Despite these mortifying examples to the contrary, I am a relatively sensitive person. I try really hard not to hurt people's feelings and I feel like I am moderately successful at reading people and anticipating comments that might offend them. And most days, I can make it until bedtime without uttering any of them.

Still, I have made more than my fair share of social faux pas.

I have also been on the receiving end of more insensitive remarks than I can even remember, especially with regards to Danny and his autism.

Like people who insinuated that perhaps it wasn't autism, but just a discipline issue, and who then proceeded to list the many parenting errors I make regularly.

Or the people who tried to comfort me by saying, "It could be so much worse. You're lucky he doesn't have cancer/cystic fibrosis/more severe autism, etc."

Then, there were the people who said, "Yeah, I'm not surprised. I've known he had autism for years now."

People have said any number of crazy, upsetting things that have alternately hurt me deeply, embarrassed me, and angered me. How could people say such things to me? How could they be so insensitive?

Now that the wounds are not so raw, however, and now that I have had time to rationally think about them, I see these experiences in a different light. What if those people in my life who made less than supportive comments regarding Danny's autism, what if they were really trying to be helpful, but just didn't know how? What if they were acting the same way I have in so many regrettable instances in my life?

Haven't we all been the idiot making a thoughtless remark? Surely, I am not the only imbecile out there whose mouth is not always connected to her brain. Most people try so hard to be helpful, but let's face it, not many of us are completely gracious at hearing bad news. Most of us have no idea what we should say, right?

Sometimes we are so afraid of saying the wrong thing that we say nothing at all. Other times, we frantically try to fix the problem and we don't realize that we are either insulting someone or disregarding their need for validation. Still other times, nervousness takes over and we listen in horror as our mouths take over with no help at all from our brains.

Since April is Autism Awareness Month, these topics have been on the mind of many of my friends and acquaintances. I have read posts on Facebook and blogs and have talked with friends who angrily report comments that others have made about their child's autism. As I listen to these remarks, I am reminded of the numerous moronic things that have come out of my mouth.

And I realize that had I not had a kid with autism myself, I could have so, so easily been the person who said any of these remarks, most probably completely oblivious to the damage I may have caused.

Because I am human, and because I wouldn't have a clue. And maybe also because I would be nervous and when I'm nervous, oh, wow, the crap that comes out of my mouth!

This little epiphany of mine has made me realize that those comments people made? Well, maybe I should rethink them. Maybe, just maybe I was a touch sensitive at the time. Perhaps people were trying their best to make me feel better. Can I really blame them that they didn't succeed, since at the time the only thing that would have made me happy would have been a call from the doctor saying they made a mistake?

As I think about Autism Awareness Month, I think of all the things I'd like people to understand about this disorder. I think about how I want people to give Danny the benefit of the doubt. I want them to take the time to get to know him, not just his quirks, but who he really is. I want them to understand how hard he is trying and to throw him a bone now and then. I hope that they will remember who he is, that he is a kind, loyal boy, and when he says something insensitive, I hope that they will forgive him and remember that he means well.

And if that's how I want people to treat my son, shouldn't I also be treating others that way?

Signs that you may have a kid with eating issues

2011-03-30T09:39:00.004-05:00

***You celebrate when your kid decides he likes a food, even a seriously unhealthy one, like corn dogs or chicken nuggets. At least it's protein, you think, I'll worry about his arteries later. Right now, you're more focused on getting calories into the kid than on how healthy those calories are. And you just pray those multi-vitamins are doing their job.

***You hope that there are enough nutrients in ketchup to make up for the fact that he won't touch a vegetable with a 10-foot pole.

***You have taken bribery and negotiation to a whole new level of artistry and expertise.

***When you have to go to a party, you always, always feed your kid ahead of time and don't even bother trying to get him to eat at the gathering. And yes, you cringe and bite your tongue when Aunt Bertha makes snide comments about how spoiled your kid must be, and that in her day, kids weren't given a choice, they ate what was put in front of them, because if the kid is really hungry, he'll eat, all the while reminding yourself that Aunt Bertha never had a kid with autism or SPD, and she has no idea what she's talking about.

***You look forward to summer with great anticipation, because fresh corn-on-the cob is actually in season, and it is the only vegetable your kid will eat willingly. For whatever reason, canned corn and even frozen corn-on-the-cob are not appropriate substitutes during the off-season.

***Reading nutritional labels has become a way of life for you, not so much because you are dieting, but because you're desperate to find versions of the foods your kid will eat that have more nutrients and fiber and less sugar, preservatives and colors.

***The thought of feeding your child another meal is sometimes so daunting, you can barely face the ordeal.

***Though your child loves toast and cheese, he adamantly refuses to even take one nibble of a grilled cheese sandwich.

***Food that most kids adore, like mac and cheese, pudding, and spaghetti are not allowed on the table near your child.

***Illogic reigns in your house. Your child does strange things with his food, like eats all the cheese and pepperoni off the pizza, but will only eat the parts of the crust that do not have any sauce on them. When you buy cheesy bread sticks, however, he will dip them in sauce.

***You are so desperate to get your kid to try new food, you actually encourage him to dip it in chocolate sauce. In fact, condiments are practically the main course at many a meal. You regularly thank the culinary gods for blessings like Parmesan cheese, Green Goddess dressing, dijon mustard, and barbeque sauce.

***You envy those parents whose children will eat mundane foods (like soup and pasta) with a vehemence that is surprising. You also have trouble not rolling your eyes at those parents who whine because their "picky" children won't eat onions or green peppers.

***Parenting magazines make you laugh when they give suggestions for helping picky eaters. The issues these authors address are so minor league, you can't help but sigh in exasperation. If all it took to get your kid to try a new food was cutting it in fun shapes, you'd have had this figured out years ago!

***Although you promised yourself before having kids that you would not become a short-order cook, you now regularly prepare at least 2-4 different foods at each mealtime, all the while grumbling and cursing under your breath.

Anything you want to add?