We are so very fortunate to have Amy Sequenzia as a member of our Think Tank. Amy’s writing is eloquent, thought provoking, and shatters many of the myths that accompany society’s preconceived notions about disability. Amy is a poet and autistic self-advocate. Her writing is as beautiful and powerful as she is. She is an extraordinary voice in the disability rights community .
My name is Amy Sequenzia and I am an autistic self-advocate. I also have epilepsy and cerebral palsy.
I write poetry – I published three small books – and not too long ago I also discover the power of prose. I began writing articles on autism, disabilities, being autistic and advocacy.
I type to communicate. I began typing when I was eight years old but for many years I did not type much because of seizures that made me very tired all the time and because of lack of support. Today I cannot imagine being silenced again.
In 2012 I was a presenter at the Conference “Reclaiming our Bodies and Minds” at Ryerson University in Toronto. I have essays published by The Autism Women’s Network, The Shift Journal, Think Inclusive, Autism Now Center, The Thinking Person’s Guide to Autism and The Autistic Self Advocacy Network (ASAN).
Also in 2012 I began serving on the board of directors at Florida Alliance for Assistive Services and Technology (FAAST).
I hope to be a good advocate for my community and a friend to parents and allies. And I love blogging for Ollibean.
I also read an interview with Temple Grandin, the most famous autistic with a “highly functional” label, where it is very disparagingly about people like me. In this interview, she mentioned that we should make every effort to include the community and to provide equal opportunity “highly functional” autistic. What about all the others, those who do not fit into her favorite category?
where is it?
, “well you know, your son is autistic”. (Certainly not the best way to be told) but, at the time it was such a rileef to finally know why my child was different. I now had an explanation for why he had enormous meltdowns, or did strange things with his hands. Why he stopped napping before his older brother did, or was so rigid, or had such problems with telling us what he wanted. It helped explain so many things. Our son was 10 at the time. We had been seeking an answer for over 6 years! He is now 21.My son is so very special in so many ways and I know that we are blessed. He is probably the happiest person I know. He is smart, has an incredible memory, and is an accomplished rider. He has given me back the joy of plants. I think he is an inspiration and gives hope to many of my friends. This man-child is an enigma: even to me. It amazes me that he is about to earn his AA, and start working on his BS in the fall. I never ever would have dreamed this possible. Did I say ever? I would have said never 10 years ago. He is so smart, yet, I still have to remind him to eat, or dress appropriately. He doesn’t drive, or really understand money or long term cause and effect. He just doesn’t get that everyday stuff to be able to live independently of us. I often struggle with the social expectations for our children He has never gone to a dance, never been on a date and his friendships are limited. It makes me so incredibly sad. His entire social life revolves around ours. Quite frankly, I think that he would be and is genuinely content to just do his own thing. He doesn’t seem unhappy. In fact he is one of the most laid back people I know. All events seem to be singular, short-lived and are forgotten almost as quickly as they happened. The other day it occurred to me that maybe it wasn’t such a bad thing to go thru life not carrying the weight of the world on your shoulders. I often wonder if it is better to have a child that is somewhat self-aware or is it better to have a child that is in their own world all the time and hasn’t a clue? (or one like ours that at times is somewhere in between?) So, I ask, whose need is it for all this social stuff anyway? Mine or everyone elses????I separate people into two groups.. those that “get” it and those that don’t. I think every parent of an autistic child understands this. It is almost a given that when my friends come over, my son will be there. And, many times when we go out, the same. It is almost as if we are a package deal. They seem to take it in stride. I consider myself lucky to have such good friends. (but wonder, if and when they will tire of this..)I think my biggest fear in life is what will happen to my son after I am gone. I think we all worry about this. It literally keeps me awake at night. Those that know me, know I do not sleep!I have always thought that a person shouldn’t be (or wouldn’t want to be) defined by a diagnosis or a disability. But, I think that autism by its’ very nature has defined my son and my family. Somehow along the way, without even realizing it, I have become who I am, because of who my son is; a grown child with autism. If I were to reflect on each day, my thoughts and actions always seem to be guided by this child. He is always on my mind and in my heart.