Tuesday, January 31, 2012

Dear Susan

Dear Susan,
I just read your latest blog post, Disability: It Really Is Okay and I sat a long time thinking how completely different our lives as Moms of sons who are profoundly on the spectrum are. I'll come back to that thought in a bit. What I wanted to say was I hope you discuss things with Nat again at some point, check with those running the ASAN meetings about what is available to support Nat at the meeting location (I have an adult daughter with a library addiction, and she has a great rapport with the staff. So we know that most libraries have a-v rooms and study areas where we can take my son to listen to his favorite tunes on his iPod or just stimm out until he feels he can return to the activity) , choose an event where Nat can have snacks (or stop by someplace prior to or after the meeting) and try to take him to another meeting. I know I have no place giving you advice. You are Nat's mother. You know him. I do not. And everyone likes to give advice. But I believe Nat will appreciate it. Let me tell you why I think so. I think so because you said you saw yourself being a bridge between the parents of children like your son and mine and the Autistic Adult Disability advocate community. So I know you will try again.

I don't expect to know what my son Mustafa will understand about being around grown ups who are like him but are able to speak or communicate with supports. What I expect for him to do is abide with them. They are neurodiverse. They are his people. I'll use the example of Black children adopted by White parents. I often wonder what Sandra Bullock plans to do about teaching her Black son what discrimination is. How will she impart the organic aspects of what the Black experience is? She is not a person of color, she does not have that history. I cannot teach Mustafa what the experience of being Autistic is, or that it is a beautiful thing to know that there are others like him in the world who understand him. He can only learn that in the company of others like him who will give him that confidence and self respect. He needs role models. I have seen him at KKI (the Kennedy Krieger Institute Center for Development and Learning) when he sees others like himself. He is happy. Relaxed. He approaches them. He engages. Even if they speak, and are only slightly stimming. He appears to know that they are on the spectrum. Perhaps some ASAN members can assist in creating a clear social story Nat can grasp about the meetings. I let my son know when we go out for an appointment that is not a community outing, that we are going out for a different event through sequences of photos or videos if I can find them. I carry mints, gum, dried beef, anything he might need to satisfy his need for sensorial input and snacking. If he's loud in a quiet environment I excuse us and let him be loud for a few minutes somewhere acceptable and when he's good we go back to business, whatever that is. I may have misread, but I felt you were very anxious for him. If I'm relaxed, my son is relaxed. So I know when you try again, you will both be more relaxed because you've tried one meeting, and it will continue to improve for Nat.

As I said we are coming from different worlds but have the common ground of having sons who are both on the profound end of the autism spectrum. I would say my son is a bit more profound that Nat. Apparently Nat does speak a bit. I surmise from reading your posts and articles that Nat had a good educational experience. My son attended a public school, was secluded, restrained, beaten, deprived of food, and one day they lost him. He was found by a complete stranger and returned to us. We've been homeschooling him for almost 3 years. With the exception of when he attended school my son has never had a care provider who was not a family member. That may change in the near future, as my health is demanding I accept extra help on occasion. So I have the advantage of having been in more of these meeting type situations with my son than you have been with yours. I quit my federal contractor job to be able to assist my son. You are a working Mom, a public figure, and author, trying to give Nat access to as many supports and services as you can fight for. I realize that we both speak from our own experiences. So advice from me may not be a good fit for you or Nat.

As the neurotypical mother of an autistic son, I want him to be at peace with each element that makes him different. My extended family taught me to understand what is different about me and why those differences make many in whatever community I live in uncomfortable. I want my son to be comfortable in his autistic identity and understand to whatever degree possible, that his autism is not a problem for those like him and for us, his family.

Probably one of the most moving of your articles I read was "Nat's Blessing" . As I understood it you stood up to everyone, even doubtful family members, for your son to have that understanding of his religious roots, and take his place in his religious community. Everyone should read that article. The same is true for his neurodiversity. He is an exceptional adult and will with time understand and embrace his place in his community.


Kerima Cevik

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