It is so confusing to say, "Please look at my child's strengths." when I am looking for evaluations to find his deficits. There is a quote by Laura Tisoncik "The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored." I personally don't believe in the distinction between high-functioning vs low-functioning on the Autism Spectrum because I find it insulting to those who are nonverbal or have that awful R-Word diagnosis. I would find it appalling if someone said that my son was low-functioning. Oh wait a minute, Sam is thought of as low-functioning in the educational setting. It is the same educational setting where both his deficits and his assets are ignored.
What has got me so hyped up is that one of the members of Sam's team, that is supposed to be on our side, voiced their concern that I was causing Sam to dislike school. What they were saying was that when I talk in front of Sam about the restraints, taking away sensory items, ect., that I was causing more distress that Sam can't handle. Sam is aware that these are happening because it is happening to him. So this leaves me with the question of whether or not I should teach Sam how to advocate for what he needs to be successful. It also leaves me with the reality that those who have fought the system for their own children or are on the spectrum themselves make better advocates.
I don't hide my frustration with the school from my growing boy. I do my best to explain to him that I have to work within the system to make change. The actual words are, "Sam, I am making phone calls everyday and at meetings I am doing everything I can to help you get what you need." Sam usually climbs into my arms and cries. Crying is good, right?
Through all of my writings, advocacy and outreach I have found amazing people on the spectrum with amazing strengths. I found a wonderful young woman who sent me to the facebook page Stand Against Restraints, Seclusion, and Bullying by Teachers https://www.facebook.com/endabuseinschool?fref=ts. At that page I found another wonderful young woman who I talked with on the phone. I often message a fellow blogger at http://www.tinygracenotes.com. These people are self advocating for themselves and advocating for others through written work, attending rallies and being successful at reaching out to us who need help. These self advocating individuals are gifts given to me by my son's diagnosis of Autism. I want to extend that gift to my son.
I know I am going to make mistakes and I hope I cause more good than harm. I love my child like nobody else can. I am going to be there for whatever Sam needs at any given time and Sam knows I am working hard for him. Sam will be thirteen in May. Isn't thirteen a time in life where one should start to stand up for oneself? Or should I ask if age 15 would be the year that he should stand up for himself because they say he is developmentally two years behind? I recently found the Autistic Self Advocacy Network's mantra "Nothing about us without us" with the quote by Tony Coelho, "Self advocacy begins with the understanding that rights are never granted from above. They are grasped from below by those with courage and determination to seize that to which they are entitled." I wonder how these folks got to the point of advocating for themselves. The only thing I know is that I see a boy who is growing up and needs to know that his voice is an important voice that should be listened to.
I know Sam's team member didn't mean to cause me distress as I sat there taking deep breaths to keep the tears from falling. Maybe I am being unfair by saying that they lost a seat at Sam's educational table. Life isn't fair. The words hurt.
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.
*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk
