How many bees

Ben and I walked along the path of a massive and beautiful flower garden last summer.  I commented on how calm he was compared to how he may have reacted the summer before to a bee hopping from flower to flower.  He nodded.  He said he felt a bit sad about that.  Why, I asked. He told me that when he was younger he had an incredible ability to instantly zoom in on exactly how many bees were in a space.  It was powerful and scary and overwhelming to be so focused on one detail of a situation.

But also amazing, and he missed that.  He didn't miss the anxiety that came with the fears of being stung, but there is something about that ability to focus so exclusively and quickly on one aspect that he wanted to acknowledge.  He remarked that even though he felt his focal points had broadened to include an enjoyment of the flower garden, he recognized a loss as well; the intense and extreme levels of focus his mind could go to.  He felt like he had lost, and gained.
I personally, have never thought of his ability to stay calm in public and tolerate bees as anything but positive.

When he was young he used to say that numbers had colours associated with them. I will never forget this because the numbers that were attractive colours he could write in answer to math questions no problem, but the number 2 was such a vomity camouflage green that he hated to write it, refusing.  Everything had a "feeling", including knives and forks.  He would gravitate to random things for reasons we never understood, but he found comfort in them because he saw them in a way, hidden to us.  Holding a CD was way more comforting than a hug.  Words of praise meant nothing to him, but acknowledging success with instruction manuals or allowing him to take apart the DVD player really made him happy.

The constant sensory bombardment was exhausting and led to screaming and crying and hiding and hitting and kicking and throwing.  We are all glad those days are mostly gone; he is glad to learn impulse control and calming techniques that work for him, and we are learning to stop trying to convince him the things that help us stay calm will help him too.  Granted, taking deep breaths works for everybody, but counting to ten includes the number 2.  Just skip that number, we suggested to Ben, which caused a whole new stress-ball about how illogical and impossible that would be.  Finding stress relieving activities is an on-going process, but at least now he is more in the drivers seat and is getting to really know himself better.  Which only started happening when we stopped saying, "take a deep breath and count to 10."  And when we stopped singing our helpful jingle:  "Just take a deep breath and say it's okay."  - Only made him more upset, because it was a "lie" that things were okay!!  They were not okay!!!
Ok, Ok.
But they will be.

Adjustments

I've read a lot about Aspergers.  We've talked with countless professionals, gone to conferences, classes and workshops.  There are so many insightful people out there!  We have two sons diagnosed with Aspergers, or Autism Spectrum Disorder.  The thing is, I just do not see it as a Disorder, without making a recognition that most of the focus goes to how people with Aspergers are different and need to adjust to every day situations, yet most of us rarely take any responsibility to doing some adjusting too.  I am always amazed at how much change in behaviour and emotional states for the boys comes when we do some common sense adjustments to the environment.  There is a possibility that kids with "special needs" may be barometers in a faulty system that always defaults to accomodate for the majority - like in school classrooms, but we can evolve with initiatives to include everyone, and embrace difference as contributory.  There are exciting currents in these directions everywhere.

Ben and Davis' perception indexes are different, and although differently ordered than the more general population, not disordered.  The negative connotation that comes with the word "disorder" causes me concern.  They struggle partially because most of us want them to see the world "our way" - the "neurotypical" way.  A great thing is, there is a huge concentration on helping kids with Aspergers learn how to self regulate, become more flexible, understand the perceptions of others etc.  I would like to add that making an equal effort to understand and respect their points of view, and making changes in ourselves and common environments is equally important.  We can ask questions.  We can listen.

Goggles

My sister and I took my two boys and her twelve-year-old son swimming last week.  It was fun... watching from the side, because I got to see the kids enjoying themselves, and doing interesting things. 

Ben lost his goggles.  As he was leaving the pool, I mimed a reminder to him, making glasses shapes with my fingers circling my eyes.  He walked back along the side of the pool, slowling, thinking.  He got back into the family hot tub and and sat down.  I watched as he started pulling his hair out, one at a time.  I remarked to my sister about him just sitting there not looking for the goggles.  And why was he trying to pull out individual hairs?  Was he ignoring me completely and just goofing off?

I watched him for a few more minutes until he proved he had forgotten all about the goggles by floating on his side. I began to dismiss them as lost, and focused my attention on reminding the other two boys it was time to leave.  A few minutes later Ben came walking up, dangling his goggles, I gave him a thumbs up and the boys went to get changed.

Later that night I asked Ben how he found the goggles.
"Well," he said, "I thought about where I had seen them last.  In the hot tub.  So, I went back and sat down where I had been sitting.  I wondered where they would have gone if I had dropped them in that spot.  I noticed there is a current in the water from the air jets on the sides.  Goggles float for a while and then will either sink or stay afloat depending on the current trajectory and pulling force of the undercurrent."

"Why were you pulling out the hairs on your head?" I asked.

"Each hair is light enough to stay afloat, so my thinking was if I watched the pathway of the hair it would lead me to a more probable and logical destination of the goggles.  But, the hair was too light and fast and difficult to track.  So, I made my arm as limp as possible and allowed it to float, watching its direction, and tried to follow it.  This led me to a different part of the hot tub.  I then found a water toy with a similar weight and boyouncy to goggles; I let them go, which actually worked and led me straight to the goggles."

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My assumptions of his intentions contradicted the reality that his behavior of sitting and playing with his hair and trying to float in the hot tub were actually clever ways to fulfill my request that he find the goggles.  And it worked:)

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/