Thursday, June 23, 2011

Thankful for Friends

The more I learn about kids on the autism spectrum, the more thankful I am for the life we lead. Jack goes to a great charter school, where kids are taught from an early age to be respectful of each other and to always do the right thing, "even when nobody can see you." Not that things are always perfect, but he has some good friends there and for the most part, he's loved and accepted for the special person he is.

At the end of the school year, I went through his yearbook to see what his classmates had to say about him. I saw comment after comment that mentioned what a great "drawer" he is. He thinks signing yearbooks is a big waste of time and so not interesting, but for me it's a little window into his school life. Nice to know he's a contributing part of his community.

We're very blessed to have some great friends. Now that he's out of school for the summer, I have to make an extra effort to make play dates for him. He'd be happy to spend all day every day on the computer or playing video games, but I've been able to set up times for friends to come to our house or for him to go to theirs. We've seen a couple of movies, too. Sitting in a cool, dark theater on a hot day is really a treat!

Sometimes it's tough prying him away from the technology. The past couple of weeks he's discovered that he can "friend" people online with the PS3 (Sony Playstation) and they can play a video game online together for hours. He has a microphone, so they can talk to each other. He knows not to give out any personal information, cause there are "bad guys" out there, but so far it's been pretty innocuous. I'm right here in the same room with him most of the time, and I can hear them talking to each other. I feel like he has "friends" to play with even when he's home alone.

He doesn't have buddies in our neighborhood, but I'm so grateful for the good friends he has from school and his youth group at church. Without them, the world would be a lonely place indeed. It's good to have friends.

Sunday, June 19, 2011

Remembering Dad

The earliest memory I have of my dad is sitting in his lap, feeling his chest move up and down with each breath. I felt safe and loved there with his big, strong arms around me.

Later I remember sitting on my tricycle at the corner of our street, wearing overalls and red cap-toe Keds, waiting for Daddy to come around the bend in our black and white '57 DeSoto station wagon. As soon as he would see me, I'd peel out, pedaling as fast as my chubby three-year-old legs would go. He'd slow the car and pretend to let me win, pulling into the driveway just after me, laughing, "You're too fast for me!"

My dad traveled for his job with the State of California. Sometimes we'd go with him during the summer, just to keep him company. He loved having a family to come home to at night, instead of an empty motel room. One night in Ukiah, we bought ice cream cones and took them out to the small town airport to watch the planes come and go (I know, sometimes families have to find entertainment within a limited budget). I wasn't paying attention, dropped my ice cream in the gravel and started to wail. Without a thought, Daddy immediately handed me his ice cream. At the time I thought it was just because he loved me so much, but later I realized he probably just couldn't bear to hear me cry.

The hardest thing I ever had to do was to see my dad lying in a hospital bed when he was dying of cancer. He'd always been the strong one who took care of us all, the man who could do anything, fix anything, who didn't cry when he'd nick a finger tinkering with the engine of our car. Suddenly he looked so frail and small in that bed. But even then, he kept his cheery attitude. He knew he was dying, but he was the one comforting everyone who came to see him. "I'm going to a better place," he'd say, "where I won't ever be sick again. And I'll see all my loved ones again!"

Daddy died twelve years before Jack was born, so Jack never knew his Grandpa. I know my dad would have been proud of him, would have tried to understand his challenges and would have loved Jack with all his heart, as the rest of us do. I just can't help thinking about him today, Father's Day, and wishing he were here.

Wednesday, June 15, 2011

Hyper Focused

Had a lovely play date yesterday with a school friend. The boys entertained each other for nearly five hours (stopped at noon for pizza), and I was able to have a really good visit with the my dear friend, his mom. No arguments, no fights. It was great!

The key to a successful play date with Jack is to invite someone who shares his interests. His little buddy was excited to see the latest installment of the computer game Jack's been making. They also spent time playing video games and finished out the afternoon working very intensely on Legos. Really nice day.

Today we don't have any plans, so he's back on the computer. He can spend hours and hours on the computer, looking at YouTube, creating videos to post to his YouTube page and working on his own animations and video games. The things he can do on the computer really amaze me.

Jack has an incredible ability to focus for long periods of time. When he was just 6 years old, his Obsession du Jour was Star Wars. For Christmas, he begged us for a Lego set of the Imperial Star Destroyer, a kit of nearly 1400 small pieces targeted at 9 to 14 year olds. He put it together in two days. Worked on it all alone for nine hours on Christmas Day (only needed assistance snapping together some of the harder pieces). We only managed to pull him away for meals and bathroom breaks. Finished it mid-afternoon the day after Christmas. Yikes! Our little engineer!

Last summer we'd had issues with the neighborhood kids being mean to him, so we all decided it was best for him to stay inside and avoid the drama. We tried to arrange as many play dates and activities as we could, but he's really happiest when he's at the computer. He has a lot of followers, subscribers and friends on YouTube. He prefers to use the messaging function to communicate with his buddies, rather than using traditional email. (All messages routed to his YouTube channel come through my email account, so I monitor everything and have been known to delete messages and block people, much to Jack's dismay! He says, "I don't care if they say bad things. Comments are good. It doesn't hurt my feelings!" Maybe not, but it hurts his mother's.)

Thursday, June 9, 2011

Meltdowns: Wanna See Something Reeeeeally Scary?

Children with autism do not like surprises. They do not like anything that is unexpected or a change to the routine. Unfortunately we didn't know this until fairly recently. We've had some pretty hair-raising meltdowns over the past few years. And we're still learning.

A Little Backstory

When Jack was about four, he and Charlie had a daily ritual. When Daddy got home from work, he'd ring the doorbell. Jack would run gleefully to the door, screaming, "Daddeeeee!!!" and fling it open. One day Daddy came home tired and opened the front door with his key, forgetting to ring the doorbell. Jack was inconsolable. He cried for about 45 minutes, all the while sobbing, "Go back to work, Daddy! You have to do it again!"

Anything unexpected would set him off, to varying degrees. He was very easily frustrated. We felt like we were living with a tiny rageaholic, walking around the house on egg shells, never knowing what might set him off. We just thought we had a very sensitive child, but what we now know as "low frustration tolerance" was a major clue that something was different about our boy.

At about 4 or 5, Jack started getting really angry and frustrated with me whenever I would make him do something he didn't want to do (ie. leave the park when it was time to go home). He would say, "I hate you!" Ouch. It stung, but I realized he was mad at me and was just trying to say the meanest thing he could think of at the moment to hurt me. When I casually mentioned this behavior to other moms, they would look at me like I was crazy. Don't other children tell their moms they hate them when they're mad? Isn't this normal? Maybe not.

When he was in 2nd grade, he developed the habit of saying, "I'm so stupid!" when he'd get frustrated. He'd also say, "You should hit me! Get a knife and stab me! I deserve to die!" Of course, we were very alarmed by this. Nobody wants to hear their child of any age say these things, but a seven year old? We talked to his pediatrician and his teacher at school. His doctor ran some blood tests, but didn't find anything wrong. And again a big clue was missed.

Learning to Avoid the Meltdowns

I've learned not to do anything too suddenly, to remember that if he doesn't seem to be responding to me, it helps to walk right up next to him and calmly repeat what I've asked him to do. Sometimes a timer helps by giving him a set amount of time to finish whatever he's working on and move on to what I've asked him to do (take a shower, get dressed, take your medicine, etc.). We've learned to give lots of warnings that a transition is coming up soon. Telling him he's got to do something "Right Now!" is a really bad idea.

Children with autism are unable to filter out individual sensory input the way most of us can. With so many sounds and smells creating a chaotic world, they tend to retreat and superfocus on one thing at a time. It's calming to tune everything out and only focus on the computer or the video game you're playing or the picture you're drawing. I've learned the hard way that if I shatter his focus too suddenly, it can short circuit his whole system and send us down the road of no return.

It's hard to have a child who has outbursts that make other parents look at you like you're doing something wrong. People who don't know any better tend to blame a child's behavior on poor parenting skills. We've had some really ugly incidents that have left both of us in tears. Afterwards he's always loving and contrite, but in the moment it can be really scary. Especially as he gets bigger and stronger, he's harder to control. This morning I read a fabulous column on Managing Autism Meltdowns. At the end of the article is a link to a two-page PDF file that can be printed out and shared with your child's teachers and caregivers. Really good advice!

Does your autistic child have terrible meltdowns? What has worked for you? Please feel free to share your experiences in the comments section.

Tuesday, June 7, 2011

Dear PediaSure: Your Commercial is Offensive!

I saw this commercial on TV last night. Boy, did it strike a nerve! A very painful, raw nerve! The mom in the commercial--the one all smug cause she gives her kid PediaSure, and now little PediaDrinker's the star of the soccer field--is a smug, self-righteous bitch. What a snotty thing to say to her friend who's concerned about her child being a little slow on the field (might have something to do with that giant Box-of-Fast-Food-Fries costume her kid is wearing), "Well, they are what they eat!" Judgmental much? Who says something like that to another mom?!

Some of us have children with Sensory Processing Disorders (very common among children with Autism Spectrum Disorder), which limits their food choices. Some children, like my son, have brains that mix up the signals their senses are sending them. To him, many foods the rest of us with normal-functioning brains find delicious and tantalizing, smell like vomit. Or garbage. Or poop. How could you eat something that smelled as nasty as that?

Food is a big issue in our house. To his credit, Jack won't touch anything made of potatoes (my favorite vegetable!). He abhors french fries, mashed potatoes, baked or fried potatoes, as well as potato chips (Lays Original are my crack cocaine). I made this discovery when he was about a year old, and we were in a public restaurant. I gave him a small spoonful of mashed potatoes and gravy (Yum! What kid doesn't love mashed potates and gravy, right?). He gagged and threw up, right there in the crowded restaurant. So sorry, other diners!

His main food choices consist of plain white rice (no butter!), cheese pizza, Ritz crackers, and grilled cheese. He also likes Chinese chow mein noodles, as long as I pick out every tiny bit of vegetable matter. Spaghetti is a favorite, but only with Ragu Original sauce (no chunks of tomatoes, please). His only palatable vegetables are corn and raw carrots (as long as ranch dressing is provided). He's also allergic to cow's milk, so will only drink vanilla soy milk.

I've actually thought about looking into PediaSure, but doubt he would drink it unless it tastes like the soy milk he's used to. But I have to say, their marketing people are clueless, as well as really insensitive. I've been trying to educate other moms, like the one in this commercial, for years. I get so tired of people offering suggestions like, "Just make him eat it. I made my little Susie sit there until she ate everything on her plate. If she doesn't eat it, I give it to her for breakfast the next morning!" Or, "He'd starve to death at my house, cause I wouldn't fix him anything special." Well, yes he would. If he doesn't like something, he will say he's full and shove it aside, even if he's hungry. He'll tell you he's not hungry, but it really just means he can't (not won't, can't) eat it. His brain is telling him it tastes and/or smells nasty. It's that disordered signals thing. Not his fault.

Children with ASD very often have food issues. And the "no thank you bite" doesn't work for us either. Even if I can get him to unclench his jaws long enough to taste something new, he'll usually just run to the garbage can and spit it out. We're hoping that as he gets older and observes other people eating and enjoying various gastronomical delights, he might learn to be a little more adventurous. But for the time being, we just have to feed him what he'll eat and accept him the way he is. He was born this way. Different, not less. Not defective, just different.

"Be kind, for everyone you meet is fighting a hard battle." -- Plato

Am I the only one offended by the rudeness of this commercial? Please feel free to share your feelings in the comments section below.

Friday, June 3, 2011

Autism Awareness

Just something I had to share: the spellchecker in my phone doesn't recognize the word "Autism." How sad is that?! (It does now. I saved it to my personal dictionary!)

Wednesday, June 1, 2011

Love Letter for my Autistic Child

I am your child, love me with an open heart.
My perceptions are distorted.
Tastes, textures, smells, sounds overwhelm me.
Help me to make sense of chaos.
At times I can focus on nothing and bounce like a ball,
Whirl like a top,
Up and down, round and round.
Sometimes I am so focused you can’t reach me:
When I am in my own world, I never want to leave it.
My temper is short, but my heart is tender.
I am always sorry.
I am unlike most children,
Yet some are like me:
More, not less.
Teach me to grow, but accept me as the child I am meant to be.
Sometimes “I won’t” only means “I can’t.”
God made me this way:
I am perfect.
I am your own precious, wonderful child,
The gift you always wanted.
Love me with all your heart.