Bens

On Saturday Ben and I walked down to the Central Library, he’s doing a project on the War of 1812.  It was a nice walk.  We talked about his upcoming 12th birthday.  As we walked passed The Art Gallery, we saw signs that read “Autism is not a Crime” and “Give Ben a Chance at Life”.  I looked at Ben.
We were drawn to the tent made of white tarp, large photos of a boy named Ben lined the walls,  “Free Ben” handwritten on poster board.  And then I remembered, I had heard on the news about a family pushed to the edge.  A family battered by injustice, but not broken.  Not broken because of a Mother’s unwavering voice of love, and her strong, clear stand against an appalling lack of basic care and dignity from a Psychiatric System, who’s mandate it is to improve and monitor the mental well-being of those in its CARE.  This family feels their only hope now is to appeal to the public to unite with them, because their voices have become hoarse from shouting into the wind of apathy and bureaucracy.  Literally, this mother was losing her voice while speaking to us.  She was living in a self made structure in a desperate attempt to raise awareness of her son’s plight, and unfortunately there are others like him, with unique profiles of strengths and challenges who are mislabeled and unjustly confined.   As her sign read, “Autism is not a crime," nor should people with autism be treated as criminals.  Right now, her son, Ben, is not being given access to care compatible with his current needs as a person with Aspergers.
He deserves access to mental health agencies and housing accommodation specifically addressing his needs as a person with autism, by a team of professionals specializing in autism, with consultation from his family.  People with autism are highly capable of contributing generously to society and living independent, happy lives - like everyone else.  To be honest, it feels a little on the ridiculous side that this situation is even possible in a world as capable of compassion and educated choices as we live in today.
She asked me, “How would you feel if your son were kept in solitary confinement, overly medicated without meaningful and appropriate access to professionals in our city who have offered their expertise  and are willing to help him transition into independent living?"
How would you feel if that were your son?  I know how I would feel.
There is plenty of hope, because with action we can ensure that all children with autism are enfolded with respect and understanding to the benefit of all.
Go to their website http://silentnomorebc.com/

Gross but encouraging

Davis had a cold, which shifted into viral induced asthma.  So, he looks and sounds quite awful.  Which is a step up from frightfully congested and coughing up a lung.  On the mend, he went to school yesterday after being away for more than a week.  I picked him up at noon and we went out for sushi.  We talked about Minecraft, or rather he told me all about his house in the hill and how many diamond and gold blocks it would take to make a wedding ring for a potential wife if he ever wanted to get the mod? that would afford him interaction with villagers, but he finds them too scary looking so he is content on his own.  And did you know that it is quite hard to be a vegetarian in Minecraft?  Anyway, I learned that and many other weird and wonderful facts about his new life's passion.  The most interesting part of our conversation came when I asked him about how his morning went.

"We'll, the SSW (Student Support Worker) had super terrible breath today!"

"Oh," I said.  I've heard plenty of feedback about my and everyone else's body odor from my two olfacorily enhanced boys.  They are very sensitive to smell.  (Ben told me in the school lobby the other day that he knew I had entered the building before he turned around because he could smell me- because of the same perfume I've been wearing since he was born, he says.  Makes me sound on par with a teenager in love with his Axe Body Spray.)

"We were sitting at the same table doing math, but I had to get up and walk around, to get a break from the awful smell," he said.  "I hope she didn't know why I got up."

"But I can still smell her in my nostrils."

"Interesting," I said.

"It smells bad, like a foreign Chinese food restaurant where somebody was murdered."

He blew his nose.  He stared, looked at his Kleenex, blew his nose again.

"It's me," he said.  "It's my snot."

"Pardon?"

"It wasn't even her, it was in my nose the whole time," he said musingly.

"We'll, as disturbing as that is, I am really impressed that you didn't say anything to her about what you thought was her intense and disgusting smell.  That may have hurt her feelings."

"I know... I didn't want to make her feel bad, so I just got up and moved away until I could stand it again... But then it stayed with me..."

"That is pretty funny," I said, smiling.

"Well, it's informative anyway," he said, nodding.

"You handled that very well," I said.

"Thanks," he said. "I still smell stink everywhere I go."

---------------
I am proud of him for trying to be sensitive to her feelings by not accusing her of smelling like death and bad Chinese food.

Lemonade

Ever had a really long day, and you are so tired and you just want to go to bed, and there is still so much to do, and it's midnight which makes it technically tomorrow, and time is running out on the deadline for the inspiring new initiatives your new boss has stipulated you propose to him or you will lose your job, one of your children has a double ear infection, the other two are coughing and calling for you, your wife is crying while updating you on all the rotten things that happened this week that you can do nothing about, including that your son accidentally broke her computer while trying to do something nice for her by updating her system and she is expecting you to be a miracle worker and fix it before her 9:00 am meeting, and you haven't eaten since lunch, and you saw a picture of yourself today that made obvious to you that you are losing your hair...
Anyway, this is a sampling of my husband's day last week, which put him in the state of mind to heavily sit and slump, and say to me:
"They say when life gives you lemons, make lemonade.
But you can't make lemonade out of urine."
We both laughed, and felt better.

Reminder to me

We've all had times in our lives we would like to forget.  Some memories are super embarrassing or painful.  Some just remind us how dumb we can be.  We need to give ourselves and each other a break.  We all make mistakes.
Something I say to myself that applies to everyone, especially kids with exceptional strengths sometimes hidden to the untrained eye:
"Just because you've seen me at my worst, doesn't mean I don't have a best."
One of the boy's teachers forgot this and it made for a very hard year.
Cheers, to all the teachers and student support teams who see the golden nugget in every kid.  And here's to the resilience in all of us.

Butt Mom

I finally got to do something I've been wanting to do for years.  It was as funny as I had hoped, to me anyway.

Years ago I saw the movie Jack Frost;  it was Christmas and I was feeling brain dead/cheerful enough to watch the TV holiday movie on at the moment.  Now, the context is hazy (I've forgotten the entire movie except for one part), but there's a scene where the young son is complaining to his Mom about having to do something he doesn't want to do.  You know, we've all done it as kids, but it so annoying as a parent to be on the other side of immature manipulative techniques (or sophisticated, depending on the level of charming).  The boy says, in a whiny voice, "... but Mom..."  and her response was great.  I laughed so hard.  And I resolved right then and there that I would tether this comeback in the back of my mind, and let it loose at the perfect moment.

Ben was a toddler at the time, but yesterday, almost 10 years later, my opportunity came, unexpected, like magic.  Un-magically, I was unloading the dishwasher.  I asked Ben to help.  He came in the kitchen, head to the side, shuffling slowly.  "But, Mooommm...." he started, and I perfectly timed,
"Did you just call me butt Mom?"
He stared.  The wheels turned.  "Nooo..." and while he back-pedalled, I laughed, and then we both burst into laughter.  He has a great sense of humour.  I even slapped my knee.

Part of the reason why I found this funny, was because it was a hard-earned joke.  Ben is, almost always, highly effected by language.  Where a coma is verbally placed, tone of voice, order of words, logical context requests(?)...  can bring a smooth response and easy compliance, or a long drawn out argument,  integrally linked to his mood and level of sensory overload.   Oh, the stubborn stare that could have been avoided recently if I had just said "Yesterday you helpfully pointed out that we are low on toothpaste and batteries.  I would love your help to make sure we get the right kind of batteries, and at the best price, so how about we go to London Drugs right now which is right beside the Rec Centre where Kate will be for a birthday party from 12:30 to 2:00.  This will give us plenty of time to also compare the Canon and Nikon cameras you have been wanting to show me,"  instead of saying, "We need to leave now to take Kate to the birthday party," in a directional, distracted tone.

And if you just had the thought that kids should just listen to and obey their parents regardless of how they stipulate that the chores get done, I used to agree with you, but then I didn't have a son with Aspergers.  And believe me, how you say it matters.

But, sometimes we can breezily shake off words, they make a soft sound, like plink plink of keys on pavement, like I can imagine they might in one of my favourite books, The Phantom Tollbooth.  Who needs words when conversational nods communicate the restful delight in sharing an amazing cinnamon bun.  Those connections are awesome. 
Ben's laughter is infectious and his smile changes how I perceive time;  a moment can feel like the best kind of forever.

(Ben just read this post, and said "It was funnier than that, but I can't think of any advice for you.")

Book Strike

In Grade 1, Davis went on strike.
"I won't read any more books!"  he said.
On library day at school he refused to even look at the book racks, instead hunching over with arms folded on the big fading couch in the corner by the plants.
Week after week the librarian encouraged him to at least wander with his classmates in the picture book section.
Dark scowl.
The teacher was concerned.  "He's a very good reader," she said.  "This is usually a student's favourite time of the week."
She tried picking a book for him and sending it in his backpack.  We tried sticker charts and rewards.  He would have none of it.  And for some reason it became a bit of an issue, because he seemed angry and disconnected from a previous joy of reading.
Finally it came out in one big spill.  "I hate reading kids books!"  he said one night.  "They lie.  They say it's good to be different, it's good to be yourself,"  he looked down, "And then my class sits in desks all in a row and they make everyone be the same and write the same way and do art the same way, and forget all the smiles in those books!"

The huge moth fluttered and spun along the ceiling, down the wall, toward the bed.  Five-year old Kate dug under the duvet to tunnel away from its bulbous brown furry body.  I sat beside her.  We both called, "Dad!"  We needed rescuing.  Sort of, I just didn't want to touch it.
Ian hopped around the bedroom, stepping everywhere except on Kate's head, still buried under cover, her mewling peeps urging him to hurry... and not hurt it, but get it out, and put it outside, but not hurt it...
Davis came running in to see why all the commotion?  Ian grabbed at the moth, and for the tenth time it flitted just out of reach.  Davis ran to get the dog.  "Go get the moth!"  Davis told her, swishing his hands in its direction.  Our little white puppy stared, head bobbing back and forth, watching the flying creature move closer.  Davis picked her up, facing the moth, dangling her in mid-air.  Our attention then went to encouraging him to put the dog down.  He ignored us, running with her toward the erratic flying wings.  The puppy wiggled and wiggled, Davis was losing his grasp, paws everywhere.
"Get the moth!  Eat it!  Eat it!"  Davis yelled.
Kate cried, "Is the moth gone?"
"No!" Davis punched the air with the dog.
"Get it!  Eat it!"  The puppy squirmed, Davis held her above his head, to reach the moth.
Ian got the puppy, then the moth.  He questioned the frustrated chaos of Davis' attempts to feed the dog.
Kate came out from under the covers, red and sweaty, wiping tears, and relieved.
Davis was angry.  He wanted to make sure the moth went outside, that it wasn't crushed in Ian's hand.  He was angry at us for not letting him force the puppy to eat the moth. The puppy curled up and went to sleep.

Later that night he told me and the dog that there was only one okay way to get rid of a moth, besides putting it outside, but that's not good either because moths might struggle to live through the cold of the night.

"If Dad killed the moth, that would be murder.  If I killed the moth, that would be murder.  But, if the dog killed the moth, that would be part of the cycle of nature. So, you see, I was trying to help Kate by giving the moth a natural death."