Let’s get ready to rumble

The week before last was bullying prevention week. A lot of effort was put into bringing awareness to the issues around bullying specifically in our schools today. It breaks my heart hearing the stories about kids who are emotionally, physically and verbally abused by their peers.
I attended a number of events hoping to learn more about the specific triggers and techniques used to control the incidents, hoping that neither of my boys are ever involved in a bullying situation. While I sat back and listened to some of the presentations as they were going on, and as experts described the ways that children were often intimidated and left feeling scared and anxious and unable to fight back or speak up and be heard I couldn’t help but notice the similarities between those children and what happens to special-needs parents.
We aren’t subjected to any physical abuse, but the emotional toll can be significant, and the verbal abuse can be harsh.
I listened to these educators lecture on how to prevent bullying, and how to deal with children who bully or are being bullied, and yet everyday I hear about another parent fighting the school system and getting bullied by the very school board and school administration that is conducting the seminars.
When you become a special-needs parent almost immediately you adopt a fight or flight mentality. Some parents come out of the gate fighting, frothing at the mouth, ready to engage in battle. Other parents completely overwhelmed by their situation feel that they can’t handle everything and they retreat back as their best means for survival. In all honesty I don’t think either one can be overly effective, I think we all need to find a balance between the two.
But what makes finding this balance so difficult is that from the moment our children are born, or diagnosed, we encounter bullying in a lot of different ways as we try to get our kids what they need. And even those parents who are up for a constant fight, cannot withstand the never ending flow of bullies that they come up against.
I know that the word bully may seem extreme, but truly when you look at the way that they treat these parents, I really can’t think of any other way to describe it.

How many of us have been intimidated by the medical staff that we interact with when our children are initially diagnosed? Doctors who won’t listen when we say this is not normal, doesn’t look right. Doctors who tell us either there’s nothing wrong with out child, and that we are just being an overly nervous mother, or those physicians who have us believing that our kids will never amount to anything, will never walk or talk, and will never be productive members of society. Doctors who tried to bully our family into believing that Maclain did not have kernicterus, who would rather try to blame me for what happened. Doctors who talk down to us, intimidate us, and make us doubt ourselves. Who leave us feeling scared, anxious, picked on.
I have heard recently of two separate situations where parents of a special-needs child have given birth to their second child and have had concern with their baby having possible jaundice. But when they tried to ask about it, they are dismissed or they tell their them to go and put their baby under the window. Really? A window? Is this 1950? Let’s remember that jaundice can lead to brain damage, resulting in a condition known as kernicterus which is 100% preventable. These two mothers are now aware of the dangers of jaundice because they have met families like ours who have a child who has been affected by untreated jaundice. And so on with that knowledge they bring their concerns forward to the doctors and the hospital staff, but nobody wants to listen. And so these parents persevere even though this is an emotional time for them and these mothers are exhausted after having gone through labor but they know that something isn’t right. And guess what? Those babies required reading hospitalization so they could go under the lights to treat her jaundice. Why does this happen? And if these two mothers did not know any better, they would have been too intimidated by the reactions of the medical staff to push this issue any further. It all comes down to the fact that those staff believe that they know more and that these mothers have no idea what they are talking about and they often time make them feel stupid for asking the question. Sounds like classic bullying to me.

There have been therapists, caseworkers, nurses, secretaries, CCAC workers, government employees, who have all felt the need to be rude and pushy and mean to one or all of us at some point. And I wish that I was exaggerating, but I can pretty much guarantee that if you were to poll a hundred special-need parents the majority of us would feel the same way that I do. These people telling us that our children were not deserving, did not need, would never amount to. That we didn’t know what we were talking about, that we didn’t do the paperwork properly, that we’re not the only ones who needed help so why should we think we’re any different than the hundreds of other parents that they talk to. They tell us they have been seeing kids like ours since before Christ was born and they can tell us with certainty the things that they will never do, but if we want to go ahead and keep on fooling ourselves well that’s for us to decide. Sometimes they were brash about it, sometimes they were passing aggressive about it, but every single time they were bullies about it.

Parents who have children in the school system who can’t get what they need for their children. Who know what their rights are, but they have to fight for them? Those school staff and administrators know exactly what the law says, and yet act like a big bully and intimidate the parents constantly. They create unnecessary problems for these families who are only trying to make sure that their children get the same education as every other child. The school boards have policies and regulations specifics to special education, and yet nobody wants to adhere to those when it doesn’t work for them. And they make these parents spend endless hours and precious energy finding the documentation to support their fight, when the school board already knows that the documentation exists. They argue with parents about the children and tell them that their kids are not smart enough to participate in a regular class, or there aren’t enough resources to support their needs. They puff up their chests, and crowd the round table with their peeps and push us into lockers. The attitude is very much like “what are you going to do about it”.
Why does it happen? Is it that there are just professionals out in this world that need a boost of your ego? Where they picked on his kids and they feel the need to get back at people? On a power trip? Do they get a kick out of making people cry? How can you just standby knowing that children are not being toileted, are not having the opportunity to get their daily physical exercise as required by law, are not being included with their peers out on the school ground. How do you sit in your office and ignore the phone calls and emails until we are forced to go and get legal representation or threaten media exposure. Why does it always have to come to that? It’s because you think that if you intimidate us enough that we will back down, that’s what you’re betting on it. How about dear principal, teacher, superintendent, or trustee, that I go and yank your kid out of class and not let them go to the bathroom, not let them have their lunch on time, not let them play with the other kids, not let them learn the curriculum and basically not give them the educational experience that they have every right to have. Would that make you feel differently about the way you treated our kids and our families?
A lot of the time these individuals show the classic signs and traits of someone who is a bully in the schoolyard. I would bet every dollar I had that the people who act like that in the adult life were either bullied as a child or were bullies themselves and for whatever reason they feel the need to continue that trend.
Well I’m here to tell you, that it is not going to continue to happen. Remember that saying the meek shall inherit the earth? Parents are getting more and more confident and knowledgeable and they are connecting with other parents were going to help them fight those fights. We are refusing to continue to be intimidated by people who should be helping our children and our families and not making life more difficult. If you want to be that kind of individual there are other careers out there that you would be better suited for so I suggest that you go-ahead and pursue one of those because your reign is coming to an end.
You may feel now that you have the upper hand, but that is not going to be the way it is in the future. It may not happen today it may not happen this week but we will get what we need for our children and you are going to wish that you had been on our side from the very beginning.
I can’t wait to see who the tough guy will be when all of this is said and done.

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