Tuesday, November 24, 2009

What color is autism?

“Isn’t the sky the most beautiful shade of cerulean blue today?”

I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.

She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.

She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.

Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.

Every day, I see that’s true.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom Orange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

Wednesday, November 18, 2009

Supermom vs. Autism

I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate
grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put
groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.

My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:

"Did you see the Indiana Jones movie? I did, it was
good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."

Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.

When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!

The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.

He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.

I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.

I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.

Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my then-six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.

I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder two years ago.

So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.

T, who just does what she can do some days

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
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Thursday, November 12, 2009

Informative Booklet for Parents of Newly Diagnosed Children with Autism

When my husband I walked out of the doctor's office with a diagnosis of "autism" for our middle child, I wish the doctor had handed me something like Same Child, Different Day, a booklet I've recently learned about.  The author Jon R. Gilbert writes on the back cover,  "This booklet was written by the family of a child with autism. It is meant to provide a little insight into what you could expect during the first year after the diagnosis, based on our own experiences. Your results will vary."
My husband and I were driving past past the mailbox on our way to "date night." I made him stop to see if the envelop I'd been waiting for had arrived. I opened it eagerly and read through the table of contents as my husband drove to the restaurant. I laughed out loud and had to start reading the chapter titles to my husband to let him in on the joke. Even though we'd been living with the diagnosis of autism in the family for six years, just the titles brought back memories. 
Gilbert starts each chapter with practical information and ends each chapter with a story from their own family. The first chapter states his purpose. "Over the course of the year following Nolan's diagnosis we encountered many situations where we could have benefited from some simple, fluff-free, honest direction. Circumstances arose (and are still arising) where we could have used some insider information, a simple heads-up or a fair warning." Then he dives right in with Nolan's first haircut. My husband and I laughed until we cried because we could have written the same story. And yes, it would've been great to have some insider information or a heads up BEFORE we entered that situation.
Same Child, Different Day is a great source for information when you are first walking out the doctor's office in shock and don't know where to turn first. Gilbert has a few pages defining soon to be familiar terms and concepts. I even learned some new ones after six years of my own reading and research into autism. He provides some well-respected and acknowledged resources by way of websites, books and mailing addresses. He also gives some insight into the lifestyle changes, the attitudes you'll face in public, the meltdowns the child will have and hints at the toll it starts to take on the family.
I like the booklet because it is factual, neutral and still upbeat. The growing awareness of autism being diagnosed in one out of 150 children has made the subject emotional, political, and sometimes, controversial. I respect the fact Gilbert touches on these areas without making you aware of his own opinions. Because of this, I believe this booklet would be beneficial to have in all medical practices, educational settings and organizations dealing with autism, especially for those families first entering into this new and scary world.
The book is reasonably priced and available for bulk rates. For more information contact Jon Gilbert at his website by the same name Same Child, Different Day.
I'm a mother of three children ranging from 7 to 17 years old. I have two neuro-typical children and one with Asperger's Syndrome. I write daily about the "joys in the challenges of Asperger's Syndrome" over at Just Because My Pickle Talks Doesn't Make Me An Idiot.

Tuesday, November 10, 2009

Calling All Siblings

So much time is spent trying to understand and help our autistic children.  And rightfully so.  They're road is not an easy one.  But, for Just one moment, I'd like to step away from needs of my autistic child and focus on the needs of his brother and sister.  Today, I would love -- and need -- the perspective of siblings. 

I have four equality beautiful, yet uniquely different children.  Two have special needs.  Part of me hates that description because to be honest -- all children have special needs.  But back to my point -- I have one child with Asperger's Syndrome/Bipolar and another with Bipolar/ADHD.

To say our home life is chaotic would be an understatement.  Much time and attention is devoted to keeping the two calm and on an even keel.  This leaves the other two, especially my oldest, feeling the void.

Now, we try out best to take time out to spend individual time with each child.  We've explained the differences in our family, and the fact that fair is not always equal.  But still, I see so much anger, so much resentment building in my teenager.  And this affects not only her interactions at home, but all aspects of her life.  She can be extremely kind and compassionate, but turn around and let loose her anger on anyone in her path.  Yes, I know some of this comes with her age, but there is so much more behind the normal teenage angst.

So I am calling out to siblings -- young, grown, etc.  I would love your perspective.  In your own experience, what worked, what didn't?  Are there things your parents did that helped you better understand your sibling/s? Did you resent the time spent with your sibling and if so, did you grow out of this?

While there is not nearly enough awareness and interventions available for those with autism, the same can be said for their brothers and sisters. I would like to think that growing up with a sister or brother with special needs can create an awareness, an understanding not found in others.  It can give people a greater level of compassion and empathy.  But this does not happen on its own.  So today, I would like to start the process of purposefully molding not just my complicated children, but all of them

I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids, that chronicles our experience with our not-so-average family.

Saturday, November 7, 2009

Bet you didn't know you were a writer!

It's been a bit since we have posted, but we are still around. If you have experience with autism, consider writing here. All you need is your story. Email sendchocolatenow AT gmail DOT com Together, we can get through life with autism. Tina