Thursday, 31 August 2017

Blog 97 - Meeting Dr Bob Jackson, Inclusive Education

Today I went to a seminar titled, 'Attending the Local School - Inclusion that's good for everyone'. It was put on by CRU - Community Resource Unit.

At Community Resource Unit Ltd. (CRU) it is our mission to engage a broad range of people in a movement for change so that people with disability will be welcomed and appreciated as they take their place in their communities.

I knew I was going to enjoy the day as, first of all, I was going to meet Dr. Bob Jackson from Curtin University in Western Australia. That is us in the photo.

Now, you may or may not have heard of this wonderful man. To me, and many others in a similar position to myself, Dr. Bob Jackson has given us the knowledge and the determination to keep our children with disabilities, in mainstream school.

I heard about Dr. Bob Jackson three or four years ago, through friends who were already fans of his. I went along to a CRU workshop to hear about his research on inclusive practices in schools. At that time Jessica (my daughter who has Down syndrome) was in mainstream school. The first facts I learned were the laws stating, children are entitled to go to their local mainstream school. If you didn't know about them, as I didn't, here they are:  UN Rights of the Disabled Person Article 24,  the 1992 Disability Discrimination Act, and the 2005 Disability Education Standards. Because many mainstream schools have gatekeepers who prevent parents from enrolling their children with disabilities, if parents do not know their rights, it is easy to get discouraged and go to the nearest special school. The statistics state that the majority of children with disabilities go to a special school.

Special schools segregate children away from the rest of society. They reflect society's attitudes - put them away so we can't see them.

I didn't realise that my wants for Jessica were considered 'progressive', and I had been choosing an inclusive life for her which wasn't typical. My husband and I didn't think twice about enrolling our daughter in the local C&K Kindy where her siblings had attended. We took her to two different playgroups - one was for 'special needs' children which included therapies, and the other was a regular church playgroup. We put Jessica in regular swimming classes as a baby and she still swims with other ordinary children. We didn't know that these things were atypical and that we were paving the way for other children. Our belief was: 'We did it for our other two, we'll do it for Jessica.'

When deciding on formal education, we were hit with the decision of where to send Jessica - special school or mainstream. At that time we didn't know Dr Bob Jackson's research and the other research in the field. We just wanted what Jessica wanted. And she told us pretty quickly. She wanted to be in the mainstream school. She was adamant even at the age of four, that she wanted to be at the same school as her brother and sister, and some of the other children she had gone to kindy with.

Treading the inclusive path in mainstream schooling has not always been easy. We've had our fair share of roadblocks and hiccups - mainly within the classroom with teachers' perceptions and a lack of willingness to go on this journey with us. But because my husband and I, truly believe in our hearts that this is the best route for our daughter to take, we will continue step at a time.

So why inclusion? I hear you ask. Below are seven reasons which are stated in simple terms. These benefits are taken from Dr. Bob Jackson's booklet, Planning & Making Choices - A Handbook for families:

1) Long term outcomes for the child - higher soical skills, higher likelihood of employment and independence, and more community inclusion later in life
2) It's the right thing to do - it's a moral issue
3) The teaching of values -  to the other children
4) It's good for the child with an impairment - academic and social skills improve
5) It's good for the other children - they develop social skills and learn about diversity
6) It's good for teachers and schools - breaking tasks down and classroom management skills, lead to better practice in the classroom.
7) It's the law - as stated above

For more informtion visit Bob's website:
Include: Inclusion through skills development (Dr. Bob Jackson)

Wednesday, 23 August 2017

Blog 96 - Charlotte Fien's Speech to NIPT Ethics Committee

As a parent of a child with Down syndrome, I am angry and upset with the NIPT blood test and the fact that 90% of babies who are prenatally diagnosed are terminated. Doctors are giving out the wrong information on these people and putting a lot of pressure on parents.

Many parents who have children with Down syndrome are raising their voices in objection to what doctors are doing with the test results.

I came across one adult with Down syndrome who is speaking up. I am sure there are others. This lady, Charlie Fien has made a presentation to the NIPT Ethics Committee. In her speech, Charlie says how she feels in a heartfelt and raw way. I feel her pain and I have wondered how this is affecting people with Down syndrome who are old enough to understand what is happening in our society. I worry about how my daughter will feel when one day she learns that society is trying to eradicate people like her just because they were born with an extra chromosome.

Please read the following:

This is the speech I wrote for my Public Speaking and Presentation class at the Goldsmiths University of London. Hope you all like it. I'm hoping the NIPT ethics committee listens.

Good afternoon. My name is Charlotte Helene Fien.
I want to thank Philip Dunne and the NIPT Ethics Committee for allowing me a voice.

I want to start with a quote from a man I admire, Martin Luther King
"Always feel that you count. Always feel that you have worth and ALWAYS feel that your life has meaning"

I want all of you to imagine what it would feel like to KNOW that 90% percent of the world wants you to disappear to no longer exist. People with Downs Syndrome have ALWAYS existed. There are paintings from the 13th century showing children with Down's syndrome. We are depicted in Pre-Colombian Art. Throughout history, DS has been feared and considered something shameful.
We have been hidden from society. In the 1940's it was done with gas chambers killing thousands.
In the 1950's we were silenced by being hidden away in hospitals and forgot about.
Today, you have become more clever at getting rid of us. You do it by hiding behind the word choice. It's not a real choice as parents are told lies. They are given info about DS from 30 years ago. It's all done with the goal of eradicating DS and saving millions in benefits and health care.
The truth is we aren't that different to you.
Well, apart from the fact WE don't start wars, hate, rape, and murder.
We are a nicer more accepting version of what you call "normal". The NIPT isn't an ethical test. It's a test being used to search for DS and destroy it. You can't use the NIPT to choose the sex of your baby
Because that's unethical. So, how is it ethical to search and destroy for Down's syndrome?
If you're going to allow the NIPT then be honest about it. Say the truth about why you want DS eradicated. We cost a lot in benefits and medical care. Give parents real accurate info about DS
I believe no matter how much you try to eradicate us we will survive. We are here for a reason.
Whether you like it or not we will be here in future. The ONLY difference is WE won't be quiet anymore. You won't be able to silence us. I won't ever stop fighting for our right to exist.
I will leave you with the words of a man who gives me courage and strength every day,
Malcolm X
"We declare our right on this earth to be a human being, to be respected as a human being,
to be given the rights of a human being in this society, on this earth, in this day, which we intend
to bring into existence by any means necessary."

Wednesday, 16 August 2017

Blog 95 - The Starfish Story

I love this because EVERY human being is VALUABLE and SPECIAL.

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Blog 94 - 60 Minutes Story on Blood Test for Down Syndrome

Last Sunday night I sat in front of the television, a nervous knot in my stomach. All week I had been watching the advertieements for a story that would be airing that night. With my past experience with the media, I was apprehensive about what spin they would be taking on the topic. The topic you ask? The topic being the NIPT screening blood test which at the moment is offered for a fee, to women at their 12 week scan. The chromosomal test looks for Trisomy 21, the most common form of Down syndrome. It also tests for other anomalies. There are a variety of practitioners advocating for the test to be funded by Medicare.

Why was I nervous about this story? Well as people know, I have a ten-year-old daughter who has Down syndrome. I undertook a blood test at my twelve week appointment, and I had the nuchel transluency check on the scan. Apparently I had a 1 in 5 chance of having a child with Down syndrome based on these results combined with my age, but the obstretrician failed to tell me. The scan had not picked up any other signs of Down syndrome, and he knew my stance on invasive testing, such as the amniocentesis. I personally am pro-life and would never terminate a pregnancy. I also had a genetic craniofacial syndrome which appeared in a similar fashion on the scans.

Before the birth, we were under the belief that our daughter Jessica, would be born with a mild version of my syndrome, or 'normal', just with slighty wider set eyes than usual. There was no mention whatsoever of Down syndrome.

My husband and I both thought she had DS at her birth, but nothing was mentioned to us in hospital. Once we got home, Jessica slept all the time and wouldn't feed so we took her back to the hospital for help. Nothing again was mentioned. At four weeks we took Jessica to see our geneticist. The geneticist took one look at her and bluntly diagnosed her straight away.

This was a huge shock for me. I didn't know why I reacted in such a way. The only reason I can give is that through all the tests when Down syndrome was spoken about in a negative way, and society's prejudices I'd subconsciously picked up, had gotten under my skin. I knew no one with Down syndrome and I didn't like what I was hearing.

In hindsight I wished the doctor had told me I had a 1 in 5 chance. I could have researched and found out about the syndrome. I could have met others who had children with Down syndrome. I could have found out that having a child with Down syndrome would require extra work, but that my child could go on to lead an ordinary life. I already had two children with high needs so having another one with high needs was not the issue - it was fear of the unknown.

I have friends who live in Brisbane, who were offered terminations up into their thirty weeks. We are saving babies at this stage, but killing our babies with Down syndrome.

So I was scared that the 60 minutes story wasn't going to view Down syndrome in a positive manner. To my surprise, and happiness, they did show that children with DS can grow up to lead independent lives, and these people are more than their chromosomes. Sixty Minutes gave a balanced view on the issue.

While watching the story, I shed tears for the 9 out of 10 babies who are currently terminated. It reminds me so much of Hitler's extermination of people who he saw as inferior. I also cringed at some of the misinformed language that was used, and the obstetrician's hard-nosed attitude. But I also have become aware lately that I see life in a very different way to the way some people do. I believe all humans are valuable and people born with disabilities are just as valued as people who aren't. If a human survives the pregnancy and the birthing process, then they have the right to life, and to be cared for. They are entitled to the International Rights that every person is entitled to.

In conclusion, I couldn't imagine my life now without my daughter. She offers a new view on the world and she has taught me to stop and smell the roses. I wish I hadn't reacted the way I had when I was told the news that she had Down syndrome. And I am now determined that other people will know that the diagnosis of Down syndrome is not a 'death sentence'; it is just a different route to be travelled.

The following links are a great overview of the story.

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