Jess is my beautiful young adult daughter with Autism.
Jess has multiple disabilities stemming from brain damage that occurred in utero from hydrocephalus. Her primary disability is Autism, complicated by cortical blindness. She also has minor fine motor and gross motor deficits.
Jess was in the public school special education system from the age of 4 through her 21st year. Over the years, IEP’s were a way of life. I figure that I attended a minimum of 40. Very early on, our family had a strong support system that led to good information about being an advocate and our ‘Parental Rights’. We knew how to go into an IEP empowered and prepared and it was always to our benefit. That doesn’t mean we always got everything we wanted, but we got a lot of services.
The biggest obstacle we faced was an ongoing lack of belief in Jess’ abilities, most specifically, her ability to learn read, and to learn to read Braille. I fought that fight (and they fought back) until the bitter end.
Somewhat unfortunately for Jess, she was on the cutting edge of the development of many special education services. When she was two, her primary diagnosis was cortical blindness. We informed the school system that she would be attending public school in two years.
At that time, school systems had not been required to provide special education services for pre-schoolers. The response we were given was that usually families send their blind children to the state school for the blind (3 hours away from our home.) We promptly responded back that she would be staying here and going to school in our local system. We began advocating by having meetings with local and state groups, State Representatives, wrote letters to the Governor, got involved with existing campaigns for early preschool education such as “Five’s Too Late.”
THE SERIES OF FIRSTS
First VI teacher
From that point on, it was firsts. Her first year, she had the first teacher for the visually impaired that the school had ever hired. When the school year started, so did the teachers’ own education to become a certified VI teacher. That teacher lasted one year, then they started over training a new the next year, and ditto the next year.
First special ed preschool class
The second year of school for Jess, our system had it’s first ever special ed preschool. But she didn’t start off in that classroom. Apparently, it wasn’t the right placement. The students in that class had greater needs. So for part of the year, she wasn’t in a classroom. She was just at a school. Not in a classroom.
First regular-ed class
When she was the appropriate age for kindergarten, she didn’t fit in regular ed kindergarten either. Her needs were too great. Honestly, she didn’t fit in. She never did. Ever. Anywhere. Early on, we questioned autism, but were told by some education professionals, as well as medical professionals, that her odd behaviors were “just because she’s blind.” It was a ridiculous statement. We had been around other blind children. For those other blind children, surely this was a huge insult. She did not fit in with other blind children. They avoided her as much as typical children did.
First extremely offensive remark
Established programs for Autism did not exist within the school system back then. Autism Spectrum Disorder was not something people really understood. The way most people even knew it existed was because of the movie Rain Man (1988). So the next year, Jess was in a classroom for the Moderate to Severely Intellectually Disabled, including one student that was psychotic and had to be restrained most of the day. Needless to say, she didn’t really fit in this classroom either. The teacher was a man in his last year before retirement. Burned out and ‘old school’ I would say. One day without any reservation, or even any inkling of comprehension of how offensive he was about to be, he said to me, “I don’t know why they try to teach these kids anything, they’re just retarded.” ——— Yeah, he said that ——— I was floored.
I complained to the Principal, and then to the Superintendent, and nothing was done. He was too close to retirement. There was no other classroom for Jess to be in, and I refused to have her spend her days in that classroom. So she spent her days floating around the school, here and there, doing different things with different people.
First time someone said, “She will never”
Next year, new teacher, same classroom. I felt I was getting the hang of IEP’s, so I went alone (without a support system) for the first time ever. Bad idea. This teacher promptly announced to me in the IEP that Jess would never learn to read. Jess was 7 years old.
It was the first time (and maybe only time) I ever cried in an IEP. The teacher was so wrong! However, it had been decided, which meant they were’t going to try. Being without my support system, I felt alone and ganged up on. I politely but openly disagreed with them, but apparently they knew better than me, I just needed to accept it. My heart was broken. I never quit fighting to prove them wrong. They hadn’t even given her a chance. In the three previous years, she had three different uncertified teachers for the visually impaired (i.e. they didn’t know how to teach Braille), and a teacher that thought his students didn’t need to learn anything because they were “just retarded”.
Finally, at the age of 7, we got our official diagnosis of Autism as her primary disability. That change redefined LRE and placement for her. Reading as many books about Autism Spectrum Disorder that we could get our hands on became our hobby. Research, workshops, and a National Autism Conference filled our calendar. We even went and saw Temple Grandin give a speech at a conference. It changed our approach to things at home and at school and gave us a new perspective on everything.
Purpose of Blog
The purpose of this blog is to share our special education experiences leading up to transition planning, aging out of public school, and life beyond. What I hope to accomplish with my blog is to share an awareness of everyday life with my adult with Autism Spectrum Disorder. Naturally, there are frequent challenges and frustrations, but there is even more joy, entertainment, laughs and good times.
Over the years, there was some success, many frustrations, and failures. And, delusions. I can say that now. It’s okay, because it is what helps us reach for more. Holding steadfast to my belief in her abilities, even when many others in the educational setting did not, helped maintain a focus on a positive outcome and an expectation of success.
I was a devoted advocate and believed that there was a place for her in the world where she could be a productive citizen. I believed that the world (or workplace) could be taught to understand her abilities and some wonderful things she has to contribute.
However, expecting it and counting on it is two different things.
The truth about transition planning from high school to the ‘real world’ is that it is a harsh reality. I believe the world is not ready for the huge population of autistic adults that are coming. I have come to believe that before the world can be ready, parents have to be ready. Facing the harsh reality kind of ready. Parents need to accept that their adult may never ‘fit in’ to mainstream, may never be able to have a job, and in our case, not even find an appropriate placement at an adult day center.
Families need to plan ahead for that scenario. That is what I consider worse case scenario for us and that is where we have found ourselves. This worse case scenario will not be what all families have to deal with. My point is that we all need to be prepared for that. Then, anything else is a bonus, a success!
What I write in my blog is just my opinion based on my experiences.