Tag Archives: genetics

A Word or Two About Parent Advocacy

20 May

I have new videos posted on TeacherTube! On one, I began a rant on the onerous IEP process that parents never see, which is all the work that goes into preparing these things. It turned out to be more of a rant on goals and objectives, though. I’m also playing around with Movie Maker effects to make it slightly more interesting.

From the autism walk, you can see CJ singing the National Anthem! I don’t know him that well, but I’ve always looked at CJ as being pretty severe as I’ve never heard him say anything! But seeing is believing, and there he is singing just as well as ever, and pretty much stayed on-key the whole time with no music to help him. Is it true the national anthem is one of the hardest songs to sing? CJ made it look pretty easy! Plus there is a presentation by Kimberly Rockers where she talked about genetic links to autism. Yeah, that’s my oldest running around and standing in front!

But I want to do more than just post updates, as I have some actual thoughts to blog about. And this time it is about parent advocacy. I ended up on the other side of it recently, and it was more traumatic and harrowing than I would ever have anticipated. Part of the reason was that it was very much unanticipated.

If you want to raise the blood pressure of the teacher, waiting until the IEP to spring all sorts of concerns and complaints is one way to do it. But you’re going to pay a price for that tactic, which is some resentment from someone who could be advocating with you. Is it worth it? Sometimes it is, and sometimes it isn’t.

When going through the IEP Process, I advocate the teacher and parent working together hand-in-hand and step-by-step, collaborating on providing the best services for the student. “Best” in a public school is a relative thing. The first, greatest and best teacher for your child is YOU. Not the teacher, the SLP the OT or PT. It is YOU, the parent. No one else has the time that you do with your child. No one else cares as much. No one else has the motivation that you have. No one else has the knowledge you do. No one else has the intimate relationship and attachment that you do. And more often than not, many of these other people you rely on to provide services have their own children to care for and feed. During school time, you want these other people to be effective in helping your child to meet their potential. Meeting potential in the school system nowadays means accessing the regular education curriculum. Math, English, social studies and science are what we’re supposed to be teaching. Communication, mobility and other skills must fit into that general education context. Folding laundry and washing dishes are not part of the general education curriculum. Those days are disappearing. Write your congressperson if you feel differently. I have.

One area of contention I had to endure was Extended School Year or ESY. In my view, given what I said above about the parent being teacher #1, ESY makes less sense when you consider that the person that is going to be delivering services is not necessarily the child’s teacher/therapist. It is also probably not going to be in the same location and it is not going to be following the same schedule as the regular school year. Different setting + different teacher + different schedule + different bus + autism = …..progress?!??!

Think again. A child would do much better to have services done in the home or staying with family for the summer. As it is, it is a recipe for behavior problems all the way around and NOT a recipe for progress. Some people are wild about providing social skills instruction during the summer. I can say from reading the research that the efficacy of even the best social skills programs is suspect, at best. But I see more and more parents advocating for it. So let’s plug in a novel peer group into the equation I just outlined above. You have a sudden, severe series of transitions that will be repeated at the end of the summer when they go back to school. Are you really doing your kids any good? I don’t know. You decide.

When I see this sort of “advocacy” it begins to look more and more like the parent simply wants the school to raise their child for them. It is also the failure to see the reality that school services might be able to make progress but school services are not a cure!

As parents, we didn’t ask to have children with disabilities. We’re sending the best children that we have. I just want to make sure that my children have the same access that other students have to an education. However, I do not rely on the schools to teach my children everything. His mother has really done most of the real grunt work when it comes to his education. And she has done a stellar job of it. I’m realistic enough to understand the limitations of public schools in that they do not have the resources to do everything demanded of them. I believe that parents need to step up and take the responsibility for educating their children. The school system is there, but it is not the main education agent nor should it be. We, as parents, need to step up. And if you are a parent of a child with disabilities, you’re going to have to be twice as diligent. Does that mean being more diligent in getting your child services? No. It means learning how to do the things service providers do, and do them yourself. The best therapy my son ever got was after we were able to watch what the therapist did. We have video of his OT, SLP and PT therapists working with him, and we were able to replicate what PT, OT and speech were doing at the private therapy clinic. The light bulb came on in my mind when I saw my son participate a Georgia State study with Mary Ann Romski, and I saw exactly what the SLPs were doing. In fact, much of her research revolves around training parents how to implement interventions.

I’m a big believer that if parents are given the knowledge and tools, they can be the ones who are making the real and significant contributions to a child’s development. Fighting with the school system simply saps your own resources and energy that you could devote to more meaningful activities.

The experience of being rolled over was an exercise in humility. I’m not as good as I thought I was. I am not a special ed. wizard. I’m one person, trying to do the best I can within my own limitations and I have a lot of those. I’m not able to cure anyone, and I’m sorry if I gave the impression that I could. I’ve come to realize that the best I can do is to extend the hard work parents have already put into raising their kids, not the other way around. Nowadays, people often talk of parents needing to support their schools and teachers, which I think is backwards. The parents are the primary educational agents in the lives of their children, and the school plays a supportive and augmentative role. I’ve been around enough to see what happens when family support at home breaks down. Performance at school also slips and behaviors worsen and little learning takes place. So teachers and parents need to be supportive of each other.

So when you are advocating, just what exactly is your expected outcome? If it’s a cure, you’re going to be frustrated pretty much all the time. If it’s for everything you want, you’re going to be frustrated all the time because even when you think you’ve gotten it all, there’s going to be a missing piece. Perhaps you get the para support but the para is untrained and lazy. Or perhaps you get an untrained teacher. Training these folks takes time. Are they going to spend school time getting the training? That’s less time with your child. Is it over the summer? Oh wait…you want them to do ESY! You’re going to have to break in and break countless teachers, paras, therapists and administrators as you fight and battle your way through your child’s school years. Because I have seen more than one teacher move on to another setting rather than continue battling a contentious parent, especially with the prospect of having to be locked in battle for years in the self-contained setting. Let’s face it, I am not up to the task of fighting with the parent of a 16 year-old until that child is 22. Quite frankly, some of you are bent on being angry and frustrated and seem to be conditioned to making everyone else scared, angry and frustrated.

As a parent I have had skirmishes with teachers on a few occasions, usually when the teacher wants to put the child in an overly restrictive environment when they have no data to substantiate such a placement. Basically, if the school starts making noises about putting my child in a self-contained setting, they need to show me something more than just an opinion. Sometimes a parent wants to try a less restrictive setting, and I admit I get nervous about that with my students whose functioning is measured in months. There’s the whole fear that they’ll be victimized by some of the street-wise kids. But you want to try, go ahead and try. Perhaps it will work. I’ve seen good things happen when severe kids are around those less severe. But transitions can be rough.

I’m interested in hearing/reading stories from parents whose advocacy has helped turn a situation around. Perhaps you managed to turn a bad teacher into a good one? Or maybe you’ve battled for years and finally got everything you wanted and it turned out the way you wanted. I have heard of parents who battled until they eventually got a teacher they wanted. I’ve been on both sides of that one, as a parent getting good teachers and as THE teacher some parents wanted.

But I am not all that, as either a parent or teacher. No super teacher/parent here. I can write about it better than I can actually do it! In fact, this is not as much me choosing this life as it is the life that has chosen me!