When It Is Time To Bow Out

Groups are difficult for Sam.  This is one of our most recent experiences in a group activity...

"You can't tell me what to do!"   I am sitting a few feet away and my ears tune in.

"Don't look at me!"  Still sitting, my full attention is on Sam while he is shouting at some boys.  I sit with the woman who is taking my money for camping and she says nothing.

"Stop looking at me!"  Now everyone's ears are tuned in.

"It isn't funny!"  I look and nobody is laughing

"I can't stand this!"  I get up to intervene.

The first thing I did was sit in Sam's line of sight to block out the stimuli.  The most wonderful woman in the world is sitting next to me and she said to me, "Wow, why didn't I think of that."

The kids go to the front of the very big room and all Sam wanted to do was to go home.  We couldn't leave until the ending ceremony.  The leader of the group, who recently took over leadership, came up to me and said, "I am worried about camp because it is 16 campers to 5 adults."  Instantly I knew that he was implying, "We don't know what to do with Sam."

The stimulus was too much and other people's knowledge of Sam's disability was too little.  I sat there and knew that I had to pull Sam out of this group.

Just like the principal makes the school, the teacher makes the class and the leader makes the group.  It is nobody fault that the leader of the group, that recently resigned, was more aware of disabilities.  This is the thing,  the leadership went  from superb to good.  Again, nobody's fault.  In a matter of a few weeks Sam was voicing that he didn't want to attend.  He knew he wasn't accepted.  He told me that people didn't like him.

Memories crash in.  Because of my mental heath, I wasn't accepted when I was young and I certainly didn't fit in.  I remember as a little girl, a group of kids decided that in order to join the group you had to jump out of the tree.  Maybe that truly was the initiation or they knew I would be too afraid to jump out of the tree.  I had to go home.

Where do my memories and Sam's experience make any sense?   How do I know what really is reality?  All of these experiences, his and mine, are thrown into a whirlpool where thoughts, memories, experiences are all jumbled together in a chaotic mess.

My job is to protect Sam.  My job is also to allow him to experience life.  Sam was slamming his feet and covering his ears with this look on his face that clearly communicated to me that he was in physical pain.  Sensory integration is real and it hurts.  Anyone can read any autobiography from any person with Autism and they will tell their story of their sensory integration disorder.  I reiterate, it is a reality for our loved ones with Autism.

I sit with Sam and I continue to experience the crashing of thoughts and feel the pain of hurtful memories.  "You need to beat that child!"  and "If that was my child he would know who was boss!"  I can't shake the most hurtful memory, "You need to leave the store, you can't stay here."  Yes, my child was running frantically up and down the isles.  Yes, my child didn't have any shoes on.  All I wanted was for someone to help me grab my groceries so I could scoop up my child.   All I got was stares.  This all happened in one of leading grocery chains in the country.  While stroking Sam's arm to comfort him, I wonder if this is what people are thinking.

The end result was that I did pull my child from the group.  I also got a refund for the camp.  I will probably tell Sam that this group doesn't meet during the summer and it is a school year activity.  There is another group that Sam participates in that ends for the summer.  I am not entirely sure but he might not ask at all.  Sam is a "what are we doing right here and right now" kind of kid.  Sam lives in the moment.

I think of the positive.  I met the most wonderful woman that was a co-leader of the group.  I am thankful that I met her.  She adored Sam and Sam adored her.  Sam felt accepted.

So I leave with this thought.  Was it my responsibility to stay in this group to try to educate them about Autism?  I personally don't think so.  Was it my responsibility to keep Sam in the group to teach him about living while feeling extremely uncomfortable?  Maybe some would argue that I am not doing him any favors.  I really don't know the answers to these questions.  Sam is wired differently because of his Autism.  I am am doing my best to teach him that he is "different not less".

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.