Thursday 31 October 2013

Something No One is Talking About, But We Need To

There is no delicate way to write this. There is no flowing prose to soften this blow, to make everyone feel better about this not talked about subject. Yet, this is what has been flowing around my raw and messed up head lately.

We go to a lot of doctors appointments. We have a lot of blood draws done. Two of my children have bad teeth so they end up having painful things done at the dentist. These experiences are what brought me to these thoughts.

I also have to state that the folks (with the exception of the evil horrible no good dentist) are all good people who are not trying to hurt my children, they are trying to help. No. What I am going to talk about is the system we all consider normal, necessary, and the way things are done. I am proposing that we change that, but honestly I have no idea where to even start.

I began this series of thought when discussing birth trauma with a friend, many things about the way birth is handled in modern hospitals is traumatic to women, they feel powerless, and are even abused physically though it is for the safety and health of both them and the baby. Many women are outright violated by strangers and it is accepted because that's how OB medicine works. Many birth activists are creating change in this area, both in process and in empowering women with information.

Great! Yay! Cool. Progress.

I was holding down Isaac for his yearly blood draw, he was telling me that he is a brave boy, like a bear! and I was cooing that it would be over soon, he is a good boy, I know it hurts, but it will let us know if he is still healthy, I love him, and his sisters held his hand and sang to him while he was restrained by us and in pain.

What are we doing to special needs and medical needs children? I know what I described sounds like a loving mother, helping her son through a routine and necessary procedure so let me keep going.

What about this? My 8 year old had to have a tooth extracted and the dentist decided to pull three instead, without telling us, and knowing that the pain meds were not working. He said to her, be still, be a good girl, it will hurt you if you are not still. She said that she would bite him, and she did. He withheld the prize at the end, said a few nasty things to her. It was awful. Yes, I filed a report. Let's look at the situation though, without jackass dentist being a jackass. Young child held down, in pain, pain being inflicted, being bribed with  toys and rewards, told be a good girl.

Are we grooming our special needs children to be victims? Trust me, I am not victim blaming here, I do no believe that victims are at all at fault to the evils inflicted on them, NOT EVEN A LITTLE BIT. However, we also as a culture acknowledge that predators of a certain kind will condition and court their child victims. What I am asking is, are we doing that? Are we setting our children up to submit to pain and terror by people in medical authority because it is medically necessary and does the way that we do that set them up, condition their personalities to more easily submit to others in authority who might abuse them?

Abuse of special needs adults is something we talk about as a culture, and physical abuse of special needs children has made the news too with the "quiet rooms" and deadly restraint incidences.... but that's not what I am thinking of this time.

Here's what is going to be hard to talk about and hard to wrap our minds around- I am talking about sexual exploitation and abuse. Too often, when I am holding my children for medical procedures, the verbal comfort from nurses and even me sounds exactly like what rapists say to their victims. It will be over soon. I know it hurts, but it is for your own good. You want to be healthy, right? I love you.

When the baby grows into a toddler and young child, when they know enough about what is happening to be afraid? The nurses at one visit were upset that I told my daughter that the shots would hurt and that I was sorry. They told me it is better not to let her know and just go and do it. We tried that once and she had nightmares for weeks. A sneak attack is wrong, so wrong, but completely excepted!

Young children have the intelligence to know and fear pain, but not to process the whole it will be over soon, for the greater good internal argument. We are violating their bodies with exams, shots, blood draws, tooth extraction, and a lot of other things. Medically necessary is a concept that adults understand and children do not, so we victimise them over and over again, holding their hands and cooing at them that it will be ok, that we love them.

I don't know how to change this. I read about a drug some doctors give children called Versed that will eliminate their memory of the event. Immediately I thought it was like a date rape drug and was shaken by the idea, but the more I consider it, I certainly would prefer this to the nightmares and anxiety, if the drug works like they think it does.

Lily has asked me to never take her to a male dentist again. I don't know where she got the idea that a female dentist would be better, but that was her gut reaction. She fights back. She can tell me her concerns and fears and I help her make choices and feel empowered. Isaac is non-verbal. Many special needs children have communication issues. What about them? What are they feeling? How can we empower them through painful and invasive exams and make sure they fully understand good touch and bad touch? Will someone evil take advantage of their vulnerability and inability to communicate?

The painful answer is that we can't. Not for all of them. Our words and actions and methods for how these procedures, routine or major, has to change. We have to consider the whole person that they are or we'll be fixing their bodies but breaking them on the inside. PSTD and anxiety is already a major issue with special needs children. If we do not consider the full ramification of this, it will eventually be just another headline we don't talk about.

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