I’m not sure where to begin. I’ve spent a lot of time on this blog discussing IEPs. I don’t know if the people who visit, read, or subscribe to this blog care about IEPs, but if you have a child with any kind of disability, then you’ll become familiar with those three letters very quickly. I…E…P. The individualized education plan. Tomes have been written about them. Laws, lawsuits, and letters to people in power have been dedicated to those three letters and what they stand for. I wish we didn’t need them, but we do.
I have spent the better part of six hours on the phone with Milly’s case manager discussing IEPs, the “system”, and generalized education. Maggie, Milly’s case manager, should be cloned. She’s a gem. We spoke at length about what it means to educate children with special needs. She was raised in a household with a sibling with profound needs so, to hear her describe it, she assumed everyone would understand that there is no true definition of “normal”. Everyone’s got something. It is the rare brain that functions at 100% in a body that functions at 100%. At some point in life, someone will need mental health services, occupational therapy, speech therapy, or physical therapy. If that person requires any of those interventions while they are in preschool or K-12, then they will most likely require an IEP or a 504 plan. A 504 plan can even follow someone through college. As I’ve stated before, however, an IEP is only as good as its implementation in the classroom. If case managers don’t convey the meaning of an IEP to a child’s general education teacher and teachers don’t want to comply with a child’s IEP, then what’s the point of said IEP? They are then meaningless pieces of paper written solely to make parents happy and meet the Child Find Mandate set forth by IDEA 2004.
What does this mean in practical terms? I’ll give you an example. Let’s use an autism spectrum disorder just because they are so damn common.
What do you think a general education teacher thinks about autism? Firstly, they usually think about boys. Secondly, they might either imagine an overly quiet boy who refuses to talk or interact with his peers, or they conjure up an image of an awkward but loud and strangely driven child who doesn’t understand social cues and acts out a lot. They might think of a savant like in the film “Rain Man”. Or, they will bring forth an image of a child with Kanner’s Syndrome ritualistically banging their head against something, avoiding eye contact, and repeating the same word over and over again. If you were to ask why an ASD child would display any of the aforementioned behaviors, why he would flap, why he might not like to be touched, or why, on the contrary, he might be clingy and touch others too much, would they be able to explain the behaviors? I have yet to meet a general education teacher who can. This is not their fault. This is due, in large part, to a school district’s lack of investment in staff development. Districts are spending so much time and energy emphasizing preparation for the annual standardized testing legally required by NCLB that there is little time for extensive teacher training on something like autism spectrum disorders in the classroom even though ASD diagnosis rates have risen drastically in the last decade.
Why should teachers receive training on something like, say, autism spectrum disorders? There has been a huge national movement towards mainstreaming all students regardless of disability so more and more students with special needs will be in general education classrooms. Insurance companies are still arguing about whether ASDs are a medical problem or an educational problem. Not all states have an autism mandate meaning that insurance companies are required to pay for ASD related medical bills so, when this is the case, insurance companies leave it to the school districts to handle problems arising associated with autism. This puts an enormous burden on school districts, social workers, special education teachers, district occupational therapists, district speech pathologists, and, of course, classroom teachers. The classroom teachers bear the brunt of the behaviors exhibited by these ASD children and act almost like proxy parents because insurance companies refuse to pay for vital services that might diagnose, aid, and better support these children. What happens then? Because many teachers are not properly trained on ASDs in children and because most classrooms are overloaded with children many of whom have special needs including ADHD, ODD, juvenile diabetes, and other conditions, teachers are overwhelmed and poorly supported. It is tremendously difficult to meet the needs of 25 neurotypical students, 2 ASD students, 1 potentially gifted child with juvenile diabetes, 2 ADHD students, and 1 ODD student. That was, in fact, Milly’s classroom demographic last semester.
When I met with Milly’s teacher last fall, she was ill-prepared for an ASD student. She did not know what the term “neurotypical” meant. She had never heard of “theory of mind”, and she did not understand what “executive function” meant nor did she understand the importance of executive planning and working memory as it related to learning theory in child development. She openly complained about Milly’s neediness and felt that perhaps Milly needed therapy. She seemed to understand that Milly had an IEP, but I don’t know if she understood what it meant. She didn’t like that Milly needed to check in with her case manager so often even though her IEP allowed and even required it. It was, at this point, that I attempted to direct her to Simon Baron-Cohen’s research on theory of mind, the idea of social blindness, and Milly’s deficits in executive planning. She smiled and nodded, but she was not willing to collaborate with me. She was the teacher. I am just a parent. What do I know? This was the attitude of Milly’s second grade teacher. This was the attitude of her first grade teacher, too. And, this is the attitude of Milly’s current teacher. There is a strong unwillingness to collaborate with me, her parent.
This is what must change if anything in our educational system is ever going to be different. We can’t anticipate that extra resources are ever going to fall upon us like some unexpected inheritance from a long-lost great aunt. In fact, it would be better if we assumed that circumstances surrounding our educational system are going to continue to erode. Parents and educators are going to have to cross the picket line and begin looking at one another as resources. We will both have to give something up to do this. Teachers have to sacrifice a bit of that elitist “I have the Master’s Degree and training, therefore, I know better about educational theory. Stop questioning me now, Parent. Go home.” I’ve read all about cognitive and social constructivism. I know my Jean Piaget, and I know all about the Responsive Classroom. I may not have a Master’s Degree in education, but I’m not a moron either. I’m an educated woman. I’m building a career centered around ASDs, and I own a corporation that is an ASD think tank. I look at teachers and say, “I can help you! I have resources. I have connections. Tell me what you need, and I’ll hook you up! My company, in part, exists for you! Talk to me!” Alas, it is the rare teacher who will let me help. On the other hand, parents must, must, must give up their Special Snowflake Syndrome (SSS). SSS is part of the reason teachers don’t want to talk to parents. How can a teacher endeavor to educate a classroom full of kids when Special Snowflake’s parent is always in the room complaining about how Special Snowflake needs this or that? Special Snowflake is gifted and requires more than everyone else. Special Snowflake needs, needs, needs, needs….! For the record, the truly gifted child is a rare thing, and every child is a unique and special snowflake. Just like the kid next to them.
SSS is also part of the reason forced mainstreaming exists today–“MY little Festus needs to feel like he’s just like everyone else! He’s going to grow up knowing that he’s not different. He’s just like everyone! He IS! You put him in that classroom with all those other kids. Treat him just the same, you hear me?!”….”But, ma’am, Festus is deaf, dumb, and blind. He would really benefit from…”…”Shut up! He gets mainstreamed! MAINSTREAMED!!!!” There must be a willingness to see what is true on both sides. Teachers can teach parents, and parents can teach teachers. Why? Because parents are the experts on their kids; if they are not, then they can be taught to become so. That’s what equipping is all about. By the same token, teachers have the potential to become the experts on the educational options–even the general education teachers. It all starts with changing our focus from what doesn’t work to what CAN work. It’s all about possibilities and potential. What is within our control?
The system is broken. It’s not going to be fixed anytime soon. NCLB is a plague on everyone across the land, and the insistence on mainstreaming has actually cut down on the kinds of services that children can receive. Politicians are continually looking to slash education funding, and classrooms sizes are only growing larger every year. I know social workers who pay for their own training because school districts refuse. Milly’s case manager paid for her own ASD enrichment training because she had five ASD boys in her care during her tenure at Milly’s primary school; she had no idea how to help them. The school district wouldn’t train her so she sought out training on her own. What would happen if the parents in the schools who were already trained in DIR Floortime, the Nurtured Heart approach, and RDI, for example, could pass on their knowledge to school staff? What if parents actually had credibility again? What if there were a pool of knowledge that both teachers and parents could contribute to in order to increase the well-being of the whole in a community of students?
You might say that this isn’t possible, but I collaborate with Grace’s social worker and psychiatrist all the time. You would think that these people would never listen to a parent, but they do. I am the expert on Grace, and I observe her daily. I also have an unusual job wherein I do research around theory of mind and cognitive development. I am able to brainstorm about treatment plans, possible medication changes, and potential outcomes with Dr. Awesome and Tammy, and it’s a very successful collaboration. Everyone benefits particularly Grace. This is what I am suggesting for teachers and parents. I am not waiting for our healthcare system to suddenly change. It won’t, but we can change. We can change how we communicate, how we think, how we interact, and how we approach problems so that the relationship between parents and teachers is no longer adversarial but is instead one based in a partnership. Why would we even try to accomplish this?
For our kids, their present, their future, and for the generations following them. Change is possible, but it really does start with us. Not with the government. With us and how we show up and choose to do relationships. With our kids and with their teachers. What’s the starting point? You must rid yourself of cynicism. Why? Let me tell you a little something about cynicism. I’ve been ruthlessly mocked by a few people I know for not being a cynic–“Oh, Jules,” they say, “you’re so innocent and naive. You don’t understand anything. Maybe we’re just cynical, but we think we understand the world a little better than you do.” I just smirk and observe them while they marinate in bitterness. I know something that perhaps they do not. This is what cynicism actually does to your brain:
“Cynicism distracts the brain from solution-building and rewires it to problem-blaming instead. It can also increase hormones that produce dangerous levels of stress. It rewires the brain for damaging practices such as distrust, doubt and scorn. The parts of the brain that are engaged in cynicism differ from those involved in more positive behaviors such as compassion for others or building meaningful solutions to problems. Eventually the brain moves cynical behavior from its working memory over into the basal ganglia where your mind stores habitual behaviors. At that point… choices for positive behaviors are harder to make” Dr. Ellen Weber
So, if you want to begin changing your focus when it comes to collaborating with those associated with educating your child, then you’ve got to get rid of your cynicism so that you can begin learning to problem-solve. By the way, if you’re wondering what in the world a cynic is, then here it is:
Dictionary.com defines a cynic as a “person who believes that only selfishness motivates human actions and who disbelieves in or minimizes selfless acts or disinterested points of view.” Other definitions include words like bitter, contemptuous and pessimistic.
Cynicism is not an emotion. It is an internal state that’s made up of our thoughts, feelings and behaviors. It colors our perception of what we see – what we feel and how we act in the world. While cynicism itself in not an emotion, it can trigger and reinforce many life-sucking emotions – hostility, anger, frustration, impatience, bitterness, resentment, hatred, rage, annoyance, doubt, anxiety and fear are all emotions associated with cynicism.
Cynicism is a psychological self-protection against – hurt, disappointment, sadness and most important – fear.
Cynicism is often fueled by anger – whether it’s the big noisy kind or the seething slow-burn types of anger. It can also be a distraction. A cynical response is sometimes easier to handle than taking action to make changes in our lives and in the world. (The Intentional Workplace)
I didn’t say that changing the world would be easy, but I said that it would be possible. What’s more, I’m not talking about planet Earth. I’m talking about your world and the world of your child or a child you love. And, if I’ve learned anything on this winding road, I’ve learned that cynicism and collaboration don’t cooperate. They sabotage each other because cynics are critics, and collaborators are willing to compromise for the greater good. Cynics don’t believe in a greater good anymore.
I still believe in the greater good and even the lesser good if there is such a thing. So, I’ll continue onward, attempting to collaborate, and I’ll let you know how it goes. I’m sure it will be interesting.