Wednesday, 20 February 2013

Abusive Ignorance!

My daughter has been a source of inspiration to both my husband and I, although I can't say the same for her 13 year old brother.

At the ripe old age of 5 years old we knew she was suffering from some type of emotional, mental and/or behavioural issues. We brought her to a child psychiatrist hoping that he could help us with some advice and/or a diagnosis. After answering the doctor's looong list of questions and his close observation of her, she was diagnosed with Tourette syndrome.(TS)

My first cousin and her daughter along with our cousin's son also have TS.(Not to mention the many other relatives we have who suffer from depression and debilitating anxiety). Needless to say, my daughter's diagnosis, although sad to hear, was no shock.

Through the years my daughter's TS symptoms have waxed and waned over and over again. At 8 years old her anxiety was so extreme, she didn't want to live anymore. My mother-in-law and I drove her to the IWK childrens' hospital (three hours away) in search of some reprieve.  We spent two days in the mental health ward before returning home, but this time we were armed with a few more coping skills and much more understanding of her situation. (We were asked to stay in our room in  the hospital as some patients were witnessed cutting themselves in public.)

My husband and I have had to change my daughter to a new school as the principal at her first accused her of lying about her anxiety and even refused to believe that she had anything wrong at all. (This was around the time she was admitted to the IWK!!!)

My daughter has had these homemade fidget toys made from paper that she has held in each hand since she was 2-3 years old. One "fishy", as she calls them, is rolled between the fingers of one hand, and flipped about in the other. We've encouraged her to put them down, but her anxiety sky rockets every time. These "fishies", I've  learned, are not only fidgets but forms of consolement. My hope is that she will adopt new forms of consoling herself in the future.

Through the years,  my daughter has also been diagnosed with ADD and OCD, which I learned, is very common among those with TS. In fact, the new term for this is called Tourette syndrome+.

Her new school has a ways to go yet, but there commitment to her right to education has been commendable. They have bent over backwards and used all available resources to keep my daughter engaged and better understood by the staff.

I live in rural Nova Scotia, in the middle of nowhere you could say, so mental illness is neither understood nor spoken about publicly.(This is probably the norm for most places.) For this reason many of our young people are being misunderstood by our educational systems, although not  purposely, still mistreated. I've seen, at my daughter's previous school,  one student locked outside of the school, causing him to bang endlessly on the front doors to be let in. Apparently they didn't know how to cope with him. Another student was locked in a closet time and time again.(I did not witness this but was told by fellow students from his class.) This same student was later diagnosed with Aspergers syndrome. Imagine the abuse these children endured, and the permanent damage it may have caused them.

My daughter has persevered through each storm, and will continue to do so, God willing. She is on two different meds which have helped her quality of life tremendously.

As my daughter's mom and advocate, I have written a book entitled "Brynn's Bizarre Behaviour" as an homage to her childhood and  all children suffering, not only with mental illness, but of the ignorance of the world around them.

Many people have advised me to contact TS foundations and such as a market to sell my book, which I've done, but I feel that selling solely to this market is the same as selling ice to an Eskimo. Most people with TS love the book but agree that it should be shared with the public as an educative resource.

Last night I received an email informing me that I am a finalist for "Favourite New Special-Needs Children's Book" in the About.com Readers' Choice Awards. WOW!

My aim is to  write many more books informing the world of the plethora of mental illnesses plagued by our children. ( I have three more coming.)

For now I will begin with that of my courageous daughter.

Vote for "Brynn's Bizarre Behaviour" once a day until March 19th. Thank you.


http://specialchildren.about.com/b/2013/02/19/vote-for-favorite-new-special-needs-childrens-book-2.htm

 http://www.specialneedsbookreview.com/2012/12/14/brynns-bizarre-behavior-life-with-tourette-syndrome-by-danica-surette/

Meet the Finalists: Brynn's Bizarre Behavior

Readers' Choice Awards Logo
Title: Brynn's Bizarre Behavior
Subtitle: A Look at 8 Year Old Brynn's Life with Tourette's Syndrome
Author: Danica L. Surette
Length: 46 pages
Website: talesttttt.wix.com/danicasurette
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