"Great Austin... We always saw the great possibilities you had...even when those closest to you did not. Keep up the good work." This was a comment written after my last post. At first, I got angry, as I may or may not have taken it in exactly the way it was written. You see "those closest" to Austin, in my mind would be his family (his father, his siblings, and of course me, his warrior mom). I intentionally avoided my Facebook page for fear of a "knee-jerk" response. I'm glad I waited. This post is instead my much more thought out response to this hopefully well-meaning praise of Austin, not a dig at his people "closest to him". I am using this opportunity to educate a bit, although, there are not many of my peers (other parents dealing with Autism and IEP's, and school districts, and insurance companies) that won't understand what I am about to share. I hope I don't bore you too much with what you already know. You see, ever since Austin was diagnosed almost 8 years ago, I have been doing battle, so to speak. IEP's consisted of me begging and pleading for Augmentative Communication, ABA, and many other things. Pushing to have the school system admit that YES, Austin was in there. I was constantly denied the Augmentative Communication, because "he wouldn't understand it" according to their testing. 7 long years of me shouting and screaming that he was in there, and he was counting on us to get him out. 50 hours of preparation before every IEP. Charting data, trying to find correlations, trying to find the key to help him to be able to move on. His behavior kept escalating, and his progress was slow at best. At the very beginning, I had a friend also with a child with Autism. She fought for full inclusion for her son. She did everything she could. Her son started Kindergarten in a Regular Ed class. The proper supports weren't in place. He didn't have an aide to redirect him. He didn't have a reliable way to communicate. He didn't have the full-time attention of a Behavior Therapist at his school. His behavior escalated. He started affecting the learning of the children around him. He would even occasionally hurt those around him. This child, and his parents were VILIFIED in the newspapers by the other parents for exposing their children to his behavior, RUN out of the school. I hope she is doing well, you see, they don't try to fit in anymore. I swore that would never happen to my son, or my family. IF Austin was ever to be with Regular Ed children, he WOULD have every support he needed to protect him and those around him. And YES, as implied in this "lovely, encouraging" note from a school employee, I REFUSED to move Austin before he had a Dynavox. I REFUSED to move him before he had a 1:1 aide to redirect him. I REFUSED to move him before he had a complete Sensory Diet integrated into his schedule. I REFUSED to move him until I met this beautiful, sweet Angel who was to be his new teacher. WE as an IEP team put our heads together and came up with options. We brought in his outside Behavior Analyst, Miss Lauren, who had done more with his behavior in two months than the "experts" at his Center School did in 7 years. Don't get me wrong he was safe and happy with his lovely amazing teacher at the Center School. SHE never doubted his possibilities, although she knew his behavior would be a hurdle. SHE listened to what I as his mother felt he needed. However, this placement was not able to meet his academic needs. I was looking at the big picture and was forced to choose safety over academics. The moral of all of this, basically to me is two-fold: 1. PRESUME INTELLECT, and provide the supports and services to effectively integrate our children into the Regular Ed world. In case you haven't heard, the numbers have changed yet again, and with 1 in 91 children, 1 in 58 boys being diagnosed with Autism, you are running out of places to hide them away. Without the proper supports and services in place, the nasty little secret of how little "we" as a society support and protect these kids so that they can become productive, wonderful members of our society will be out there for the whole world to see. 2. "Experts", unless you live our lives, and make these incredibly hard, heart wrenching decisions for your own children, DON'T JUDGE THOSE OF US WHO DO IT DAILY! You can't possibly understand until you force your very bright son to glue glitter on the letter G for 7 long years, just to keep him safe from ignorant people, and to keep others safe from the behaviors he has learned because the proper supports and services just weren't provided! I held up my end of the bargain. I participated in ALL of his IEP's, unfortunately, the rulebook kept changing! Let me leave you with one of my favorite quotes. It is from many people, including Hubert Humphrey, so I am paraphrasing: "...the true test of a society is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.” Hmmm, tell me, how do we score on this test? The schools and Legislators are laser focused on the results of the FCAT, maybe this test should be included in No Child Left Behind too!
1 comment:
Sharon, you ROCK!
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