|Posted by Christa Milner on September 5, 2010 at 1:04 PM|
From where I sit, and have been sit-ting for 13 years, the battle is not with the autism itself. The battle is with almost every other aspect of our lives: work, school districts, medical offices, insurance companies, and family members; even people in the store that don't know us at all, but want to stop and stare. Jake is now at an age where we need to think about driving, living on his own some day, working; scary stuff. Jake is 16 years old.
The battle today is a different one than we started fighting in 1994 when we knew something was up. Our doctor said, "let's wait until his three year physical." We said, "thanks, but if you won’t write a referral to send us to Children's Hospital for an evaluation, we'll go on our own". Jake's first year of kindergarten was his first year of "inclusion". I fought it because I wanted to feel like he was protected. I would have preferred he attend a school specifically for kids with special needs like they did when I was in elementary school. The school district we lived in was not ready for inclusion. They tried from day one to fight his being there. They fought having a one-on-one aide. They fought giving him a "safe place". They fought him being intolerant of the bus ride. They fought modifying his schoolwork. They tried bullying me into withdrawing him. I studied the law and whenever I got the chance, would professionally recite it to them. Daily, it worried me to send him to school. My life revolved around the constant battle with the school. I begged for communication. I needed to know what happened throughout his school day. He couldn’t tell me, and I needed them to understand that. Eventually, we got a fantastic one-on-one aide. Jake got one teacher who had figured out how to handle Jake. She figured out how to modify his work so that he could actually understand it. The truth is, we ended up with our aide and the teacher battling the school with me. Of course, they had to be more careful than I did because it was their job. Peggy and Rhonda, I will forever be grateful to you.
I could tell you horror stories about our experiences, but that would take a book. It frustrates me to think about it now. I withdrew Jake from the previous district because he ran away from the Junior High School, and the principal tried to cover it up. That battle went to the Teacher's Union and the principal is gone. I'm so glad to be where we are today. The school district we are in now actually seems interested in working with my son who has autism. We now have teachers who are coming up with ideas on their own. I really can't say enough good things about the school Jake is in. God has blessed us with them.
The "big picture" the Battle of Autism is moving to a higher level. We are moving forward with legislation that will, hopefully, force insurance companies to recognize and provide coverage for those with autism. More people seem to have some understanding of autism, or at least realize that it's out there. There are programs like My Place To Be with other people fighting our same battle. Its crazy how being in a building with four or five different noisy activities going on at once can actually be relaxing and fun. It's the people around us that understand. If you don't have them, find them. People that are fighting the same battles, that makes all the difference in the world.