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.

A Kleenex for Dry Eyes

Our dog died. As my husband and I cried for our loss, our son studied our faces… he worked to imitate us and even took a kleenex to wipe his dry eyes. 

J’s speech therapist and teacher are working with him on acting skills. He has to learn to function in a “typical” world so learning social cues, facial expressions, spoken expressive language will help him. He’s going to have to function in sensory difficult situations… he’s going to have to learn appropriate responses to words and emotional cues.

We’ve all heard people say that if you’ve met one child with autism– you’ve met ONE child with autism, and it’s true. Autism is so intertwined in social expression that it would be easy to think that the emotion or thought behind the outward expression is part of autism– but, it’s not. The responses may be colored by sensory issues or lack of language fluency– but the underlying sentiment, the interest or emotion is all theirs…  individual.

There are several publicly outspoken adults on the autism spectrum who refer to the world as “yours”… They understand what is expected but it doesn’t come naturally– or without difficulty.

I know that J loves our dog and feels the loss. I know that he needs to learn socially expected emotional responses in order to fit into this “typical” world. I just wish he could be accepted and understood for who he is– the underlying emotional, thoughtful, spiritual part of him– without having to work so hard to appear “typical”…  I wish Berlitz could teach me to understand him.

Olbermann

Keith Olbermann was suspended today for making a donation to a Democratic candidate. In 2006, Joe Scarborough was forgiven for the same “infraction” because he isn’t a newscaster… he’s a commentator– or so said MSNBC’s spokesperson.

I miss the days when journalism had integrity and you actually had to treat news as appointment television. Those days are long gone– unless you’re my mother and McNeill Lehrer is on… We are inundated by opinion that is portrayed as fact. We are lied to regularly by the media– who cite each other as the source of their information.  (By the way… the President’s trip to India isn’t costing more than the Afghanistan war… )

MSNBC needs to be consistent. If they had suspended Scarborough for donating to a Republican it would be fair to suspend Olbermann for donating to a Democrat– since they didn’t– they shouldn’t have. This action against Keith reeks of partisanship.

Please sign this petition to get Olbermann back on the air… I don’t think I can take Anderson Cooper’s perfect hair for very long… http://act.boldprogressives.org/sign/petition_olbermann/?source=typ-fb&referring_akid=2630.279311.HsNjil

Yet Another Follow-Up on Daytrana

J has been on the Daytrana patch for about 3 years now… we put it on before he wakes up and take it off as soon as homework is done in the evening. We’ve gone up on the dosage and gone back down and generally speaking it’s been good.

Lately, however, we’ve noticed that there is a bell curve on the effectiveness of Daytrana during the day.

• 6:30 Patch goes on
• 7:15 Rise and Shine!
• 8:15 bus comes– pretty smooth ride to school
• 9:00 all hell breaks loose
• noon– zombie time to 2:30 ish
• 2:30 very productive time of day– good conversations, descent focus
• 4:00 home from school and homework– very smooth
• 5:00 patch off– play time (usually computer, editing)
• 7:00 my son comes back to life (hungry, funny kid!)
• 10:00 bedtime

Not sure if there is a moral to this story but, I talked to his teacher and this is an accurate portrait of his day… so, I’m going to talk to J’s doctor and see about switching meds at Christmas Break so that if it doesn’t go well, we can go back to the tried and true-ish when school starts back up.

By the way– we have recently figured out that Band Aid brand blue no hurt antiseptic wash works great on the red-sore icky spot the patch’s adhesive leaves behind… Just thought you’d want to know.

Open Letter to Asbury University

Asbury University (formerly Asbury College) is playing Fox News in the campus gym and cafeteria. When did Asbury start teaching propaganda instead of truth? When did it lose its compassion?

Shortly after college I married a fellow Asburian who declared his homosexuality a year later. He was told by an Asbury faculty member that if he got married he would be “cured” of his homosexuality. I was the victim of this declaration and yet I was able to forgive the College for its naiveté.  

Now, the views espoused are attacks against my son (who is the child of my straight second husband). And that I cannot forgive so easily.

My son is on the autism spectrum. The Republican Party and its mouthpiece, Fox News, have mocked those with autism specifically and those with pre-existing conditions more generally. Leaders in the Republican Party think my son is a wrecked car with “autism”.  I cannot—and will not—support a political party who values money over people.  I cannot—and will not—support an institution that condones ridiculing “the least of these”.

As a result of Asbury’s shift from a conservative Christian institution to an extension of the political party whose leaders call my son—who is a gift from God, perfect and created in God’s own image—unworthy of equality;  I am changing my Will so that it no longer includes your institution.

The Jesus I know doesn’t think little kids with pre-existing conditions should be discriminated against in favor of profits. The Jesus I know doesn’t hate or ridicule people who disagree with him. The Jesus I know teaches compassion and charity.

“I like your Christ. I do not like your Christians. They are not much like your Christ.” –Gandhi

Please call Asbury and tell them to turn off Fox. 1-859-858-3511 (X 2105 alumni office)

Mr. Boccieri is a Winner

Last night John Boccieri lost an election– but he is a winner!

Over the course of two years, John Boccieri worked for the people he represents in Ohio’s 16th Congressional District. His courage of conviction, his prioritizing of policy over politics and his careful, thoughtful, prayerful votes have made my son’s life better. Because of Mr. Boccieri’s vote in favor of healthcare reform, it is now illegal for insurance companies to discriminate against the 1 in 70 boys diagnosed with autism.

John Boccieri is a winner.

Why Vote For John Boccieri?

John Boccieri can tell you eloquently why you should vote for him in Ohio’s 16th District so, let me tell you why I voted for him.

Boccieri gets it. He’s a fiscal conservative who voted against healthcare reform’s first version because it was financially irresponsible. He voted for the second version because it had been revised/improved so that it will save tax payers money and assures that abortions will not be Federally funded. His vote FOR healthcare reform gave my son insurance. He has autism (a previously deniable pre-existing condition) and was on Medicaid. Now, you aren’t footing the bill for my son’s healthcare– I am. In a tiny little way, my family is proof of savings to taxpayers.

I’ve met him and know him to be genuine– not some slick politician. He looks you in the eye while he’s listening to what you have to say and is sincere with what he can or can’t do– what he’ll try to do– what goes against his grain…

John Boccieri is a dad. He understands parents who want what’s best for our kids– better for our kids…  He wants the same for his kids that we want for ours… and, he’s willing to do politically unpopular things to get that done.

I don’t agree with every vote he’s cast– any more than I agree with everything my husband does– but, I’m not going to ditch either. I voted for Boccieri because I really believe that he represents me– and, he’s able to do so because he listens to what I have to say…

Vote today. We are responsible for electing people who represent us– not people who we tolerate because we’re mad at the other guy. Vote today. Vote for the best person, the most genuine, the one like you. I believe that’s John Boccieri and he has my vote.