Leaving an exclusive “special needs” support group

I am the mother of an autistic son and the wife of an autistic husband. They are two sides of the same coin: one side is youth, and the other adulthood. But the currency is autism and there is no exchange window in any hospital, school, institution that will change who they are. My husband is a passionate advocate for autism and disability while he navigates through sensory, social and other challenges posed by his disability. Professionally he is a wildly successful savant; but if you see him walk the halls of Dripping Springs Elementary School, you will see a man hunched over, eyes downcast, unable to stop or slow down because his stimming is pacing. At least the hair pulling is in control. Each school trip produces more adrenaline than BASE jumping, and takes more energy than running a marathon. I know, because I get to pick up the pieces once he gets home. 
He goes because its important to his 3rd grade son to have Daddy at leadership day, awards day, etc. He goes because he wants to make the school a better experience for kids with “special needs.”
The internet is his communication window to the world and he posts publicly about his experiences because he wants to create an environment that will be more accepting of his sons. His posts expose his thoughts, soul and feelings. Reading each one is like ripping a bandage off a wound and exposing raw flesh, muscle and bone for everyone to see. They are usually uncomfortable for all audiences because there is nothing “mainstream” about him or his words.
The moderator has blocked him from this group because his words made her uncomfortable, and I was told to leave this group if I have a problem with her decision. So I am leaving this group because you can not have a special needs group which excludes autistic individuals or parents of autistic individuals. If this group can not tolerate an autistic’s personal point of view on their disability (even when it’s outside your experience), then it’s not as supportive as I thought.  
I wish you all the best of luck as you love, support and raise your children to be great individuals. I hope Ryan Boren’s post help you all out even if they no longer appear on this board.

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3 Comments

  1. Patricia

     /  January 11, 2017

    Inna, all your family always has been welcome to my family and we are so greatful having you as friend! We have learned from all of you how to appreciate the friendship, life and keep our kids as great friends! We look forward to get together! !

    Reply
  2. Emily

     /  January 11, 2017

    This is absolutely terrible. How can she make that decision. This is what it’s all about. This should be a learning experience for her to try and understand it more. Wow! what a shame.

    Reply
  1. Self-advocate, silenced – Ryan Boren

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