Tuesday, October 14, 2008

Being told was difficult...

It's been nearly two weeks since our last visit with Dr Joe and it's been a little hard for Makala. After more than 4 years of monthly (and sometimes twice a month) visits at our last appointment Dr. Joe let Makala know exactly whats going on...

I have often wondered why so many social workers and therapists seem to think there is some reason a child--person, shouldn't be told "What" the issues or problems are? As if not telling someone they have "something" to overcome would help.

I know that at some point I would want to know why I was being given medications, and had appointments every time I turned around. I don't see how it's possible to process and deal with a situation if the specifics aren't known.

Recently, someone who claimed to be a social worker left an anonymous comment on this blog... Something to the effect of how damaging "Labels" are for a child... I didn't publish the comment because clearly this person doesn't get it. Fatal Alcohol Spectrum Disorders FASD, isn't a Label and it won't just go away no matter how much Social Working anyone wants to try and do.

For Makala FASD is just a part of her life story and as hard as it was to hear this information Dr. Joe was able to let Makala know her Label is one she can manage and overcome. His way of informing her was done in as positive a manner as could possibly be done when you need to tell someone they have a difficulty caused by the fact they were exposed to alcohol before birth.

Makala had some difficulty for a few days after being told the facts of the matter. Mainly, an increase in some of the behaviors that cause her the most trouble. We have talked about how she feels about what she has learned. She has Anger that something she didn't do has caused her this extra problem in life.

Our talks have made it possible for a new thread of trust to be formed between us. Confronting those things that are difficult for her is something she is willing to work on and interested in understanding. Her "Label" is more then a word--it is her reality.

I have often wondered why so many parents and therapists think leaving the child in the dark about the facts is a healthy course? Most problems are not managed until someone accepts the actual truth. I'm not sure what benefit there is when a child isn't given the truth.

It hurts to hear and would hurt no matter when. Knowing at this point in life only means that she has her parents and doctor to help her during the years ahead. I appreciate the input from the social workers and county mental health people... I know they have their reasons and methods but the fact is that Brain Damage isn't a label it's a reality--a big reality for a little girl for my daughter...

Our lives are waaaaaaay more then the "Case Studies" or standard protocol would have the educated professional pattern their methods. Parents are not outside educated providers--they are the Best Advocate for their child. We don't follow your rule books because we love our children and know their needs better then the text books would ever impart to the over eager do-gooders.

Makala is not hidden in a room upstairs and walking in a life unaware of the content of this blog. She lives her life and is well known in the neighborhood, community and just about anyplace she goes. Her name and picture have been published in the news paper for her Remarkable and wonderful moments of talent... People can't help but, remember Makala when they meet her!

It just cracks me up when anonymous, so called social workers suggest that life on the Internet is any different then the life we live each and everyday. People peep all the time and we are all who we are no matter where we are. I would much rather teach my children that there are people peeping--good people and bad people... That Life is NOT invisible--and we all have problems and labels.

It's always better to know what your problem is and give it a label rather then troll around the Internet thinking there is actually someplace anonymous where life is somehow different. Thanks for suggesting that the Internet is something different the Every Day of life in general. I choose however to teach my children that we are who we are and the world is not a place we can just wonder around incognito.

I suppose the next comment from a well meaning person will suggest that we just put a paper bag over our faces when we go out the front door? After all every time we do people see us and we don't know who might be looking...

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