Advocacy and Agency: On Being a Highly Literate Parent

Allow me to say from the outset that, in this piece, I run the risk of being too forthcoming with regard to my personal life, but it comes from a desire to make sense of my own experiences and to relate them to important lessons for my field. We have just begun the process of having our son, Aodan, evaluated for an Autism Spectrum Disorder. This comes after having seen red flags since the time he was a year and a half or two years old (though we would also probably give anecdotal evidence that he was weird even in utero).  We also don't yet know exactly what we're looking at--if it is in fact as ASD, which all of us who are dealing with him suspect, or possibly something else, like ADHD or even OCD. But Aodan is a bright and sociable child (at least with the many people he knows), so I have little doubt that with proper interventions he can be successful both as a student and in his social life.

Nevertheless, along the road, we have already had incidents in which we have had to deal with behavioral issues. I should note here that Aodan also has epilepsy, for which he takes medication. His first medication was a real problem for him as it made his behavior, whether good or bad, a bit more extreme that it otherwise would have been. This, along with the issues that have led us to these evaluations, have led to at least two incidents where we have had to actively advocate on behalf of our son to keep him in his school.

The first was in his day care last year. This particular daycare is a K3 program, which means that they see themselves as a legitimate school with a full curriculum. As such, they encourage parents not to keep children out of school unnecessarily, as doing so will deprive them of learning. This is one of the reasons we had our children in this day care. But last year, as Aodan began having problems in class, the school began calling us to pick him up because he had been removed from class. Charissa would have to take off to go get him or my father-in-law would pick him up and keep him for the rest of the day. Obviously, this did not sit well with me, especially since the logic of the place was that students were learning and needed to be there. So, for me, his removal from the classroom amounted to a willingness to rob my child of his educational opportunities simply because he was hard to deal with. So, on a day that Charissa had gone to pick him up and taken him to her school where I later picked him up, I went to the school and asked to meet with the director and his teacher's supervisor (surprisingly for a school that size, these were two different people).

I explained to them that I felt that in a school that makes it a point to remind parents that their students shouldn't miss because they would be missing curriculum, the assumption seems to be that this is real and important education. Since this was the case, it was a major problem that my child was missing out on his opportunities. For me, if they were going to sell themselves and organize themselves as a K3 school, they must also have in place the mechanisms that other schools would have, namely, the training and resources to deal with children with learning differences. They needed interventional strategies. They admitted that they did not have this kind of training but that it is something that they agree they should have. The conversation ended with their assurances that they would try to find ways to keep him in school. It was the last time he was sent home from daycare.

This year, the incidents which have led to his finally being evaluated, also landed us in an administrator's office as we had to discuss the possibility that Aodan could be removed from the Open Door program. This is a voluntary program that allows kids to stay in the school building for daycare before and after Pre-K instead of being transported to a different site. Since it is a voluntary program, he doesn't have to be allowed to remain in the program if they deem him to be a problem. After a write up on the very first week of school, my wife and I found ourselves in a meeting once again having to advocate for our son.

This meeting was much more cordial than the one I had had with the daycare the year before. For one thing, these were professional educators in a public school. They knew what they were looking at. So, this meeting mostly focused on how to intervene, how the teacher could see the signs that Aodan was over-stimulated or escalating, and what to do when those things happened. For another thing, these were both people who my wife had worked with in the past. For this reason, these administrators knew that we were educated and involved parents, which protected him from the tendency to write our child off as the bad son of bad parents. Thus, instead of these meetings being situations in which the school was explaining to us that and why they were kicking my son out, we were instead working on solutions to keep him there and help him be successful.

As a literacy scholar interested in access, I have wondered how this experience might be different for a family with less agency. My wife and I make a formidable pair, sitting across the table from school administrators. I'm an experienced college instructor and PhD students in literacy. I also happen to be physically imposing. My wife is an innovative and experienced teacher, a former teacher of the year with an interest in curriculum development for children with special needs, who is currently working on universal design schemes for her music classroom. We out-credential most of the administrators and teachers we come into contact with. This gives us a great deal of agency when advocating for our son, agency not often available to parents who are "less literate."

James Paul Gee, in his book The Anti-Education Era, points out that, "formal schooling is often like this. People are placed in hierarchies where small differences often translate eventually into big ones" (80). This is due to phenomenon noted by Gee known as "kick theory." The way this operates is that small differences early in the educational process eventually translate into large advantages later on. This is because a person who shows an early advantage, even a small one, in a certain area receives a "kick" in a particular direction that will lead to greater advantage. As this process continues and repeats, the person who showed an advantage gets kicked further and further up the ladder. Inversely, I suspect, the person who did not hold the initial advantage initially will get kicked down the ladder.

In his psuedo-scholarly memoir Lives on the Boundary, UCLA professor and literacy expert Mike Rose points out that, "judgements about [students'] ability are made at a very young age, and those judgements, accurate or not, affect the curriculum they receive, their place in the school, they way they're defined institutionally" (128). So, as early as Pre-K in Aodan's case, schools are making decisions about where he will be placed. This necessarily effects the kind of education he will receive. Of course, education has come a long way in understanding and learning how to handle learning differences and disabilities. Far more often than when I was a child, students are mainstreamed into regular classrooms where they are exposed to the same material as every other student. But there remains the risk that a child may be removed to a severe to profound program, special classes, and so on.

Temple Grandin, the renowned Colorado State University animal scientist and agricultural engineer, who also happens to have autism, speaks often about the importance of careful intervention by way of language tutoring, social training and so on in helping children with autism succeed. For me, there are important access issues at stake in these conversations. Grandin attributes her success to the important interventions provided by involved parents of means and quality teachers. Her parents (her mother in particular) were able to provide her with very intensive language therapy and tutoring early on, and they were intentional about filling her life with the kinds of extra-curricular activities that gave her purpose and a sense of belonging. Children who have not had access to such interventions may have far fewer opportunities to overcome their "disabilities."

With our level of education and our connections to the people who run the educational systems in which our children are being taught, Charissa and I have a great deal of agency and ability to provide the things Grandin mentions--things that will help our boys to be "kicked" in the right direction. We will be able to provide interventional strategies that make it much more likely that Aodan will have just as much opportunity to succeed as Beckett, up to and including educating him ourselves.

Less literate, less well-connected, or less priviledged parents are in a much different situation. They may not have the agency to successfully fight with schools who may find it easier just to hide their children in order to keep test scores up. They may not have the resources to pose a serious legal threat to schools who fail to provide equal opportunities for their children. As literacy workers, we need to be aware of these access issues and look for ways to provide agency through advocacy and training for those that need it if they are to advocate for their own children in the ways I'm able to advocate for mine. We have a responsibility to make our public schools as egalitarian as possible, and this is not possible unless all students have equal access to resources that allow them to succeed.