AUTISM AFTER SCHOOL
I am the parent of a young adult with Autism (Jess). She has multiple disabilities stemming from brain damage that occurred in utero from hydrocephalus. Her primary disability is Autism Spectrum Disorder complicated by cortical blindness. She also has some minor fine motor and gross motor deficits. I am also the parent of a 2nd year med student as well as an undecided 22-year-old college junior who is being a nanny and a caregiver while trying to figure it all out.
We were in the public school special education system from the time Jess was 4 years old through her 21st year. Over the years, IEPs (Individualized Education Programs) were a way of life, and I attended a minimum of 40. Very early on, our family had strong support system that led to good information about advocacy and our Parents’ Rights. We knew how to go into an IEP empowered and prepared. It was always to our benefit, though we didn’t always get everything we wanted.
The biggest obstacle we faced was an ongoing lack of belief in Jess’ abilities, most specifically her ability to learn to read and to learn to read Braille. I fought that fight until the bitter end. I will delve into that story more within my posts.
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 starting having meetings with local and state groups, State Representatives, wrote letters to the Governor, and got involved with existing early preschool educational initiatives such as “Five’s Too Late.”
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 teacher of the visually impaired. That teacher lasted one year, then they started over training a new one the next year, and ditto the next year.
In Jessica’s second year of school, our system got its first ever special ed preschool class. 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.
When Jessica was the appropriate age for kindergarten, she didn’t fit in regular ed kindergarten either. Her needs were too great. And honestly, she didn’t fit in. She never did. Ever. Anywhere. Early on we questioned autism, but we 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. Surely this was a huge insult to other blind children. Jessica did not fit in with other blind children, and they avoided her as much as regular ed children did.
Keep in mind that back then, for the most part, established programs for Autism did not exist within the school system. Autism was not something people understood. If people knew it existed it 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 who was psychotic and had to be restrained most of the day. She didn’t fit in this classroom either. The teacher was a man in his last year before retirement. Burned out and old school. One day, without reservation or any inkling of how offensive he was about to be, he said directly 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. 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. Instead, she was forced to spend her days floating around the school, here and there, doing different things with different people.
Next year, new teacher, same classroom. I felt I was getting the hang of IEPs, 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 the only time) I ever cried in an IEP. The teacher was so wrong, but 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. Apparently they knew better than me and I just needed to accept it. My heart was broken, but I never quit fighting to prove them wrong. They hadn’t given her a chance. In the previous three 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. We were able to change her primary disability to Autism. This had major implications for Jessica’s educational placement because it redefined her LRE (Least Restrictive Environment) in the context of the IDEA (Individuals with Disabilities Education Act). We read as many books about Autism Spectrum Disorder that we could, did research, attended workshops, and went to a National Autism Conference. We even saw Temple Grandin give a speech at a conference. Jessica’s new diagnosis changed our approach to things at home and at school, and gave us new perspective.
Eventually one of the elementary schools in our county had a class for children with Autism Spectrum Disorder, but we were told Jess was too old to be in that classroom, even though she was still in elementary school. Yeah, that again. Too young, too old, too normal, not normal enough. The county middle schools didn’t have an autism class in place until the year after she finished middle school. When she started high school, there was not an autism class, but she was able to get into a blended classroom that worked well for her.
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. There are frequent challenges and frustrations, but there is even more joy, entertainment, laughs and good times. And since autism is a family affair, there will be digressions into tales of my other children’s lives (as they will tolerate).
Over the years, there were some successes, many frustrations, and failures. And delusions. I can say that now. It’s okay because it helps us reach for more. We must always expect the best outcome and we must not stop believing. We have to be fierce advocates. This is what I did with Jess. I always believed in her abilities when many others in the educational setting did not. I was a devoted advocate for her. I always 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 depending 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’ with the 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 the 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 the worst. Then, anything else is a bonus, a success!