I was excited to listen to him, to learn from his wisdom and experience, and to be inspired. I brought a notebook and several pens to jot down the important points I wanted to remember. He had a PowerPoint presentation, and while many cringe at them, I have a bit of glee when they are used because I am a serious, detailed note-taker, and they help me in my endeavor to ensure I get every single point recorded.
Early in the talk, a slide listed "symptoms" of autism. I could not focus on anything else on the slide beyond the word "symptoms." Symptoms. I could not stop staring at it! The word made my stomach hurt. Its implication is nothing but negative.
Look it up online; this is what comes up (I bolded a few words for emphasis.).:
- a physical or mental feature that is regarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.
- a sign of the existence of something, especially of an undesirable situation.
I was hurt. I was offended. I was even a tad bit angry.
My sons are not sick! They do not have a disease! And while we have challenges every single day, I do not think of their diagnoses as an undesirable situation. Truly, I do not! They are who they were designed to be, and I adore them!
This does not mean that I don't do everything I can to give them tools to be successful in this society. This does not mean that I don't have days of frustration or sadness. I do. I am human.
BUT-I love the way their brains work and the way they view the world. I love their spirits, their perspectives, their humor, their insights, their absolute uniqueness.
I stewed as I stared at the slide. All these thoughts and more went through my mind as I stared at the word, and then, I had a thought of clarity and became instantly calm.
'He is here to help, Brandie! He had no intention of upsetting anyone, and instead of vilifying him over the use of one carelessly used word, do something!'
Obviously, I wasn't going to interrupt the presentation, so I jotted down a note to myself and then decided to give him my full, open-minded attention.
Well, later in his presentation, he showed a clip from Autism Speaks and also referred to them as a great resource to the families in the room.
Again, I was disappointed, but I talked to myself. Like so many others, he was probably unaware of the dissatisfaction so many have for the organization. After all, I have only been educated and convinced about the negative impact AS has on the ASD community in the last year.
I made another note for myself.
I listened to the rest of the presentation and concentrated on being a positive and supportive face in the crowd for him. Reminding myself that he was here as a positive resource for the audience members and that he meant no harm by the things that had offended me helped me do so.
Still, I knew that if I was truly wanting to affect change, I would have to, somehow, share my concerns with him.
When he finished, I looked for an opportunity. I saw none. I was not looking for a confrontation or to have anyone else hear what I said, feeling like that would be incredibly rude. I saw no way to speak to him privately, so I left.
I found myself thinking about my concerns all night long and immediately when I woke up the next morning. At work, it was gnawing on me. I considered letting it go, not wanting to be confrontational.
Then, I thought of my boys. Fear of confrontation should never keep me from speaking up on their behalf!
I decided to e-mail him.
I knew that I wanted to be helpful, not hurtful. I knew that I wanted my message to be welcomed, not shunned. I knew that I needed to offer solutions, not complaints.
I expressed my feelings and gave him some alternative words and resources to consider in the future. I explained that I did not want to offend and was coming from a place of genuine desire to help. I also thanked him for his work with kids like mine.
I hit send. I hoped it would be received well, but whether it was or not, I knew I had done what I felt was right. I had advocated for my children and all children and adults like them.
Ninety minutes later, he responded. He was gracious, apologetic, and open to my information and suggestions. He thanked me for my kind words. In short, he was wonderful, and I was grateful.
I am so glad that I did what my children deserve. I spoke up for them when they couldn't.
Please, remember that advocating often goes beyond the classroom or the IEP meeting room walls. Please, also remember that very often, the people you want to educate are coming from a place of good intentions. Treat them as such. You may be pleasantly surprised how willing they are to listen.