Traveling down the road I hear from the radio, "I used to ride the short bus and now I tell people what to do." The message came from a radio show "Rover's Morning Glory" and with a "GRRR" coming from me I changed the station. I ingest these types of comments and they sit at the bottom of my gut and mull around. I hate words that bring images of my struggles with raising a child with Autism.
I ask Mina, "Hey, do your friends make fun of people who ride the short bus?" She doesn't have much to say. I am sure she feels bad that her brother has to ride the little orange mobile.
I have been to countless conferences and gatherings where the keynote speaker gives their presentation and the underlying message whispers to me, "Your kid is disabled, we all know that he is disabled and life is not fair." I often walk away not wanting Sam to be that adult that says, "If only they had listened." Sam and my situation often breaks my heart.
This blog is my special place where I can say what I feel and right now my internal thoughts are, "This stinks." I have to pull every thing apart and concentrate on what is good. Right now the bus situation is not even a little bit good.
I think of the bus as that orange looking bug with the yellow flashing lights that turn to red that seem to make fun of me shouting, "Once these doors are shut your kid is mine and I am going to eat him and spit him out!" I will never really know what happens in that all consuming monster.
OK, I am not being fair. The drivers and monitor are not paid much and they are trying to get through their day. Also, a lot of these folks grew up in a time where Autism wasn't really known and kids were taught to obey their elders. In today's world there is a shift in thinking that people need to conform to the needs of Autism and there doesn't seem to be any middle ground of understanding. I live with their message of "Your kid is a bad kid." The bus reports cut through me as I fear what life will be like when Sam is bigger and stronger. Sam needs to learn how to regulate his emotions and I am hopeful that we will find the people to teach him the tools so he can survive in society.
I am often met with remarks from others when it comes to Sam and his outbursts, "That is not the Sam that we know." I often nod in agreement as I try to imagine the sensory overload that puts Sam in a flight or fight mode as the kid whispers to him on the bus, "Shut the #@&* up." Sam tries to speak up about his perceptions of unfairness to the adult only to be met with, "That's not true." Sam turns to the adult that is supposed to protect him and screams, "Shut the #@&* up!" This makes sense to me because the adult doesn't want to be bothered with, in their words, (yes, I heard it myself) "Those kids with problems" and Sam throws caution to the wind.
I have to chuckle as the bus monitor calls me at her breaking point not knowing what to do. I hear Sam screaming with language that is not welcoming with the monitor yelling trying to gain control. It really is not funny and it is clearly a situation where nobody has control.
As I reread my words I wonder if I feel better getting my thoughts out there to whomever wants to read them. The fact is that I am traumatized along side of Sam as I try to navigate the system. The Educational Advocate sits with me in bus meetings telepathically sending messages with our nonverbal communication, "Well, that meeting was fruitless." For now, I am picking up Sam from school until we figure things out.
I know in my heart that Sam will learn the tools that he needs to gain control of himself. I think of where we started and he has made great strides. Success is, after all, a journey and not a destination. Without the difficult times I would not truly feel the joy when life is good.
Now that I have had time to process the comments from Rover, I now say, "Good for him. He overcame all that comes along with riding the short bus. I just hope he is polite when he tells people what to do."
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.
