One of the more significant discussions that we had with our family in the beginning, was when you get a diagnosis like Asperger's or ADD, who exactly needs to know? Is it something we should hide? Pretend it's not happening? Do we tell the kids? How do the kids feel about what is shared? How do they feel when it is not shared? Everyone has a different opinion on this depending on their map of the world, their own experiences.
What I can share, with my children's permission is what we decided and what impact that has had on our family.
Anyone who has lived without a diagnosis, with either of these conditions, knows that it is like having an elephant in your living room. Whether or not you are out there sharing it with the world, you are kidding yourself if you think people don't know. We have all experienced the hurtful whispers, the knowing stares, the shaking of heads. Our kids feel it too. They feel it from adults critical of their behaviours, and they especially feel the sting of it with their own peers. I will forever remember the first time in bed when my son whispered to me " why don't kids like me? What's wrong with me? " I wept.
I read early on, before we had decided, in one of Michelled Garcia Winner's books on "Theory of Mind", that human beings pick up differences in people's ability to communicate very quickly. She states that when a person asks another person a question, if they don't respond appropriately within 3-5 seconds, their brain picks up that there might be something wrong. They begin to unconciously judge the person standing before them. With our kids, it takes a lot longer than 3-5 seconds for them to take in a situation. How can you read another person if you have lost them within 3-5 seconds? Already the wall has gone up because they have read you as "different", as "not like me". A gulf opens between you. A gaping chasm.
Human beings are interesting creatures. Michelle also talked about a strategy that she employed with one of her Asperger students. He was feeling very isolated and frustrated with his attempts at connecting to other people. She suggested that he change one dynamic. When he was standing in front of the person he was wanting to communicate with, the moment there was any hesitation, she asked him to immediately stop, and explain to the person that he had Asperger's syndrome, and that sometimes he needs a bit more time when asked a question to think about his answer. The results were amazing. People instantly smiled, and often related knowing a friend or a relative with Autism or Asperger's. They threw out a rope bridge over that chasm, that gulf. And with every understanding comment and smile they pulled the edges together until there was not any gap at all. They built connections and " alikeness" statements instead of "different" and "not like me". There was generosity of spirit and kindness that showed up. That boy's feeling about communication was astoundingly different. That statement of vulnerability made the listener feel protective and trusted and that, seemed to make all the difference.
I am sure there are some who feel I am going against what they perceive to be right in sharing my families journey. Bless you. Bless you all. My children have experienced a radical shift in their world when we opened up and shared what was happening for them. Our extended family, who have always been so amazingly supportive have become even greater cheerleaders. Teachers have become brilliant mentors and role models of patience and kindness. Friend have helped in eductating others about the things people with Asperger's and ADD face. Vulnerability has been transformed into strength.
I honour everyone's personal choices. I honour everyone's right to privacy. I honour my children's right to be celebrated for every beautiful thing about them. And I am eternally thankful for all of the acceptance they have found in the world in having the courage to stand up and declare who they are. They are truly remarkable human beings. They are my heros.
In love and light,
Kathryn
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