Anything But Typical (Book Review)

 

“How do you show appreciation? Appreciation is an emotion. It’s a feeling. You can’t draw a picture of it. Why do people want everyone to act just like they do. Act like they do.

And if you don’t — If you don’t, people make the assumption that you do not feel what they feel.

And then they make the assumption– That you must not feel anything at all.”

 Anything But Typical by Nora Raleigh Baskin, a Schneider Family Book Award winner, is wonderful in a confusing sort of way. It’s a story for adolescents written from the perspective of a 12-year-old on the autism spectrum.  It addresses friendship, outbursts, sensory issues, family dynamics and a boy’s first crush.

It deals with bullying.

“…He is laughing more. Louder.

‘You want to know what her name is?’ he is saying.

…My hair hurts. My chest is tight.

‘I bet her name is Retardo Girl,’ the boy says.

No, I am thinking. Her name can’t be Retardo Girl.

Can it?

‘And I bet she rides the little bus to school’

And then I figure it out. He is just being mean. When a dog gets mean and bites a person, it’s the law that they have to put that dog to sleep. This boy is being mean. He is lying. He doesn’t really know PhoenixBird. I have nothing to worry about. For some reason my head is still shaking.

But I can breathe.”

 This isn’t a pity party or some veiled attempt to explain to neurotypicals (NTs) what it’s like to have autism– although I think it does.

“My head exploded.

There was no way to stop all the molecules that started penetrating my skin.

My hands flew off my body.

My body flew into a million little pieces.

I could smell the fresh coffee that Aunt Carol and my mother had put up for desert as we hurried out the front door. I could smell the pastries she would have put out, and I wanted one.”

Anything But Typical is a story in its own right whose main character is an individual with his own history, his own likes and dislikes, his own wants, tastes and fears. 

It’s given me some insight into my 10-year-old and cautioned me about making emotional demands. I wouldn’t say that Anything But Typical is a must-read– but, it’s a good read that made me think.

Wearing Blue for World Autism Awareness Day

Yesterday was World Autism Awareness Day (WAAD) as declared by the United Nations.

While watching the evening news, I noticed that MSNBC’s Chris Mathews was wearing an Autism Speaks puzzle piece so, I started bouncing around to see if any of the other networks were honoring this day… CNN’s John King was wearing blue but, his guest, Governor Strickland of Ohio was in red… On Fox Sheppard was in pink.

My family all wore blue, my Facebook friends wore blue and  the sky was even blue… but, the press (with the notable exception of Chris Mathews) didn’t acknowledge WAAD. And, I couldn’t find a single special on the topic.

It’s sad that this epidemic is a footnote– or rare news story– when 1 in 70 boys born today– 1 in 110 children– have autism. Surely they don’t think it’ll just go away if they ignore it…

Remember Swine Flu? Bird Flu? Just plain old regular flu? The numbers weren’t anywhere as high as autism’s and they led the news… funding for research and development of vaccines was astronomical but, the Epidemic that is Autism is relegated to a single line in the news casts if mentioned at all.

Don’t get me wrong– I appreciate any positive mention of accomplishment or discovery but, I wish that the attention given to comparatively minor outbreaks would be given to this disorder– and the boy who has autism that is dancing in my kitchen as I write.

When the 1 in 110 is enters the workforce or applies for government assistance they will notice… it will be the lead story… I hope it’s not too late for this generation of children with autism.

I challenge you to write a letter to the editor of your local paper, post a blog, write your elected officials and/or tell your Facebook friends what autism is, how it impacts those you love. Let’s talk about autism– let’s demand the attention this epidemic deserves!

The inclusion of behavioral health services and ending of  “pre-existing conditions” in the new Healthcare law are a really good start– and very appreciated by my family.

 As our Country moves on to Education reform let us advocate for increased and improved education for children with autism. Let’s insist that colleges  provide supports needed for those with autism to succeed. We, the people, the grassroots advocates for our children–can make a difference.

“I Must Go To The Hospital”

My mother had surgery today to replace her second hip so I left home before my son woke up to sit with my Dad at the hospital. J knew I was doing this. We’d talked about it a couple of times and my Mom told him when she was at our house a couple of days ago. He was prepared as best we could for the change in routine.  All went well for her so I was home in time to meet J’s bus.

The second he got off the bus he hollered “I must go to the hospital!” The mama bear kicked in and I asked if he was ok, where does it hurt, what’s the matter? He kept saying that he had to go to the hospital his leg was hurt and he limped up the driveway.  For about 2 minutes I thought here we go again… I’ll take him to the emergency room and hope there really is something wrong– sounds terrible but, J doesn’t react to pain like the normal temper-tantrum throwing kid so, I never know. (In another story, for another day, I’ll tell you about the broken elbow incident.)

By the time we got to the front door he wasn’t limping and was starting to quote the movie Du jour– Veggie Tales Sumo of the Opera.  He seemed to be ok for a little while and then it started up again. “I must go to the hospital!”  Like a ton of bricks it hit me– he was talking about going to see his grandmother (who he calls Vova– Portuguese for Grandma).

The last time she was in the hospital– late September– he HAD to go see her to read her stories. It was great.  He reads really well and, in typical grandmotherly fashion, she humors him.

Although we had talked to him and he knew that I wouldn’t be home to get him off to school, he was thrown off by the change.  The note from J’s teacher said that he had been ok but a little off today.  We do our best to let the school know when things are a little different so they can deal with changes. Preparation and familiarity are key to good behavior.  For instance– J takes the same tote with toys every time we go to Church or friend’s homes. The toys may vary but the bag is the same.  He’s high functioning autistic– speech is pretty good, eye contact is pretty good etc. but, he comes across as very young and rather eccentric.

We didn’t go to the hospital and he’s ok with that.

J lost a tooth yesterday

J is amazing– he surprises me all the time.

He got off the bus yesterday with a tooth in his hand. He was so excited! “Mom! Look my tooth!” We went inside and put it in an envelope on which he wrote “tooth fairy” and he ran it to his room and put it under his pillow.

My dilema– what’s the tooth fairy going to put under his pillow? He doesn’t understand cash. Everything is a “million dollars.” He hates brushing his teeth so maybe I could use this as an opportunity to get him to do it without the physical fight. A new toothbrush with the character du jour might work… but, I’ve already tried that a “million” times…

He needs a new backpack but, what’s the fun of that? He loves DVDs– especially special features which he watches over and over and over…  but, if I give him a DVD we’ll have issues getting him out the door for school. He loves to read… but, I think he’s moved on from the Fraggles and that’s all I’ve got on hand.

I could go out and buy another but, there’s nobody close by to watch him and trips to the store are not fun… I never know what to expect with his behavior and how the people around us will react to him. Sometimes you wish you could carry around a sign that says– Don’t stare at my kid. He can’t help it!… He’s not a bad kid! He’s autistic!

I finally settled on raiding the Christmas stash… He got a book, didn’t care about it. He got toothpaste that he gave his Dad. He got a backpack that he actually seemed to like– Buzz Lightyear… He surprises me.

I learn from J all the time.

I underestimate him all the time.

I am ashamed that I don’t give him enough credit. I make excuses for him a lot and it’s not fair– to either of us.

Autism isn’t fair.