Thinking back on this experience I realize that I have a responsibility to not slam these caregivers but to also share our story. It is a combination that can anger some and evoke responses from many. Everybody has their story. Our story begins the day we are born and it ends the day that we die. Of course it all depends on what story I want to tell whether it is domestic violence, mental health difficulties or Autism and the list goes on and on.
Today my story is the continual saga of Sam's experience with school.
Walking onto the unit I noticed that the patients were non verbal. To many this environment would imply that the population would be low functioning, kids of all ages, who are diagnosed with Autism. I am not a fan of the two word phrase, low functioning. I am not a fan of the two word phrase, high functioning either. I don't believe that it is a fair use of language. But our use of this particular language continues and it will fairly describe the feelings that this environment evoked in me.
I toured the facility and I continued to ask myself, "Why am I here?" and fully knowing the answer, "I am trying to find some people to listen to us and to hear my cry, "Can you please help me by writing some professional reports to adequately describe my child so people will listen." My focus was to find support so the school environment would give my child an adequate education.
I had received a call from intake asking me if I was able to make the 6 hour drive and it just so happened that she called a few hours after a disturbing phone call. The speech pathologist had called a few hours before explaining to me that she is recommending that services be stopped due to non compliance from my child. Tears streaming down my face I volunteered to the intake coordinator that yes, I was a mess. I meant that I was a mess at that particular hour of day. I am not a mess all the way around, 24 hours a day. Again, it was my misuse of language. You would think I would learn. One more lesson that my use of language which makes it apparently clear to me if I, a non autistic adult, missuses language, that my child, diagnosed with severe expressive, receptive and pragmatic language, does indeed need the services.
They asked me, "Can you see your son here?" and I thought, "No." It had nothing to do with the clientele. It had to do with my conversation with the caregivers. I know they are educated and I know they think that they are correct in their learning of how to handle scientific situations but it all comes down to this, "nobody knows how to take better care of my son than me." No parent should feel less than or wrong for placing their child into the care of others if they feel it is the right choice for their child. Nobody, and I mean nobody, is allowed to make me feel that I am a "less than parent."
It all boiled down to one thing. I knew that the emphasis would be about me. She said one thing to me that sealed the deal. It is this moment, when I think back, on where the red flags started waving in the hospital breeze of ambiance that made me want to run out the door. It was the intake coordinator saying these few words, "Well you said you were a mess." Experience has showed me that the focus would of been on me not the school.
And of course if this had not been the case, I wouldn't of been able to provide my child with this opportunity because of the all mighty dollar.
My conclusion is easy for me to understand. Never talk about myself and never assume that people are out there who will stand up against an institution governed by people that are making rules where I, and my child, don't have a voice.
It is sad and controversial. It is also a conversation that I am willing to have with others. I am not afraid. My child is amazing, talented, kind and extremely intelligent. It is my job to get him to a place of self sufficiency. Sam and I will conquer this world together.
I leave you with this. It is a message from a talented photographer:
Everyone communicates differently. The main thing for Sam is communicating in alternative ways than what some people might traditionally expect. Everyone has a purpose in this world. Sam is here to create art and teach others with his condition that anything can be achieved. Some of the most successful people like Einstein, Steve Jobs, Leonardo Di Caprio and John Lennon didn't even finish high school but found their way.
I couldn't of said it better myself. And again, no parent should feel less than for making agonizing decisions on what is best for their child. It doesn't matter what the decision is. It just doesn't matter.
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.
No comments:
Post a Comment