Blog 102 - I am not a Wonder Adult but I do have a Craniofacial syndrome

There is a lot of talk around at the moment about the movie, Wonder, based on the book of the same name, written by RJ Palacio.

I will not call myself a Wonder adult, or my two children, Wonder kids. Myself and my two children do have craniofacial syndromes. We have experienced some similar situations to Auggie in the book and movie. We have all experienced teasing and bullying about the way we look. We've all had multiple operations. But we are real flesh and blood, not a fictitious character.

So I thought I'd give a brief slideshow of my face from birth to nineteen years of age. Most people do not know I was born with a different face, thanks to extraordinary pioneer facial surgery. But during those precious young years when you form your self-identity and society tells you what it thinks of you, and it rates you as being valuable or not, I was different. To many I wasn't worthy, but fortunately to my family and to others who saw beyond my face, I was loved and valued. The rejection by some, particularly boys, left its psychological and emotional scars on me. I struggled internally, but wore a smile on my face and enjoyed life as much as I could. Inside of me I bore an intense determination to show the world that I was more than how I looked. This ambition would stand me in good stead for the rest of my life. I would never let adversities turn me into a negative or spiteful person.

This is me as a baby. My skull is fully fused and not growing. I was eleven months old when I had my first and second surgeries to expand my skull so my brain could grow.

Toddler

This photo was taken at a puppet show. The photographer refused to take my picture, then with my mother's insistence he did, but he did not arrange the three of us like he did with the other children who were there.

 Kindy

Eight or Nine

At the age of nine - I turned ten in hospital, I had my first major full facial reconstruction. This picture is soon afterwards as I am still wearing my wig.

Twelve

As my face continued to grow and change it regressed. My lower jaw became quite protruded and my eyes grew bulgier. This caused me a great deal of distress.


About fifteen

Eighteen (my debutante ball)

A couple of months after my eighteenth birthday I had my final surgery. This was me recovering from it:

This photo was taken on my nineteenth birthday when I was at university studying to be a teacher:

I went on with my life, trying to completely forget that I was born with Crouzon syndrome. It was only when I gave birth to my first child, who also had Crouzons, that it all hit me in the face... but that is another story.

Blog 101 - National Symposium on Inclusive Education 13 November 2017

Earlier this year I was privileged to speak at the Down Syndome Association of Queensland Education Conference on inclusive education, explaining what it is and why it is the best way to educate children with Down syndrome.

Yesterday I was fortunate to be sponsored by CRU (Community Resource Unit) to attend the National Symposium on Inclusive Education in Sydney. I also went as a member of the Queensland Collective of Inclusive Education. It was a very exciting event, full of international and Australian politicians, academics, teachers, advocates, parents and people with disabilities. We all came together with the same vision - to make mainstream Australian schools available for all students - no matter their disability.

The event was put on by Family Advocacy NSW.

So, why was there a need for the symposium?

* Other countries around the world have led change to create fully inclusive education systems backed up by legislation, policy and change management protocol. The symposium provided the opportunity to have these examples of implementation showcased, which highlighted the vision and commitment required for successful implementation. The event provided Australian stakeholders in education insight into the necessary steps to move towards a fully inclusive education system.

The speakers at the National Symposium on Inclusive Education were:
* Cecile Sullivan-Elder - Family Advocacy Executive Officer

* Rob Stokes, MP - NSW Minister for Education
https://www.robstokes.com.au/

* Alastair McEwin - Disability Discrimination Commissioner
https://www.facebook.com/Alastair-McEwin-Australian-Disability-Discrimination-Commissioner

* Roger Slee - Professor, School of Education, South Australia
http://people.unisa.edu.au/Roger.Slee

* Jihad Dib, MP - NSW Shadow Minister for Education
https://www.parliament.nsw.gov.au/members/

* Jody Carr - MLA/depute Oromocto-Lincoln-Fredericton, Canada
https://www.facebook.com/jody.r.carr

* Emma Husar, MP - Federal MP and Parent Advocate
 https://www.emmahusar.com.au/

* Carol Quirk - Co-Founder Maryland Coalition for Inclusive Education
http://www.mcie.org/mod/staff

* Leanne Woodley - Senior Education Consultant, Association of Independent Schools, NSW
https://www.aisnsw.edu.au/diverseneeds/

* Yolande Cailly - Parent and Advocate
 https://twitter.com/ycailly/

* Loren Swancutt - Current Acting Deputy Principal & Substantive Head of Special Education, Townsville, QLD,


I will be writing more about the conference but the main messages were:

* All children belong together.
* Research has proven inclusive education benefits the child with disability, the children without disability, and the pedagogy (the way of teaching) of the teacher.
* Segregation takes the form of special schools, special education centres and support units, and within classrooms where children are away from their peers.
* An inclusive education is one where students are in the regular classroom as much time as their peers. Their work is modified where necessary and supports put in place so they can access all school activities and curriculum. They go on school excursions, camps, swimming lessons etc.
* Inclusive education leads to an ordinary life after school - employment, inclusion in society, friendships etc.
* It is against the law and human rights to refuse entry of a child with disability to a mainstream school.
* We need systemic change within the Australian education system. We particularly need to stop building special schools and put that money into mainstream schools for resources, teacher training etc.

Why am I an advocate for inclusive education?

I have a child with an intellectual impairment who is enrolled at her local mainstream school, and is being fully included. I have personally seen the benefits to my daughter, the other children in the school and the teachers (who have embraced it).

Carol Quirk from the Marylands Coalition for Inclusive Education, summed up reasons for advocacy at the National Symposium on Inclusive Education with the following diagram.

 

1) Equity - Every child has the right to a high quality education.
2) Opportunity - Every child deserves the opportunity for learning, friends, and the rhythms and routines of school life.
3) Society - Every child deserves to live in a society where mutual respect, empathy and acceptance of disability exists.

If children are hidden away in segregated settings, and not seen as an integral and ordinary part of school, society and their local community, then the above will not be achieved. When children with disability are fully included in mainstream schools, the other children  accept that disability is just another way people can be. All fear of disability is gone. This flows on to making the world a better place to live in.

Blog 100 - Brockwell the Brave and Land of Britannica

Double Book Launch of 

Brockwell the Brave and Land of Britannica

Last Saturday, the 16th of September, 2017, I was excited to have about fifty people join me to celebrate the publication of two books. The first, Brockwell the Brave, was published at the end of last year, but due to my husband being very ill, I delayed the launch. Land of Britannica is my latest book.

So what are these books about?

Well, I can tell you that they are both written for children aged 9 to 12.

They both feature dragons. 

They both are about family relationships and in both the main character becomes a hero.

Now how are they different? In a nutshell, they are both very different stories.  

Brockwell the Brave is set in Scandinavia in the Viking Era. The story revolves around a boy, Brockwell, who lives on a dragon farm. He is a gentle boy who loves spending time at the healing hut in the village. Brockwell is scared of the adult dragons he is expected to care for. This causes a lot of conflict with his father who sees Brockwell as a major disappointment. Later in the story, Brockwell's father does not return from rescuing an injured wild dragon and Brockwell must decide what he's going to do. You will have to read the rest of the story to find out what happens. But there's a magical tooth involved, the village bully, the support of a female best friend, and bravery.

In Land of Britannica, Brittney's parents have split up and she's not coping. She wants them to get back together. By way of a glowing green heart under her bed, Brittney is plunged into a magical world, the Land of Britannica, where she quickly finds out that she is the Chosen One as stated in the Book of the Kingdom. It is her destiny to save the cracked green heart that hangs in the sky. Again, I am not going to tell you what happens, except to say that this story is a tale of good versus evil. And I'll also tell you that Brittney journeys through a land where animals talk, the food is strange, there are dragons and a royal family, and she receives special clothing and powers.

So what inspired me to write these stories?

I wanted to write a book for each of my children. Last year's novel, Ride High Pineapple was dediated to my eldest daughter, Melissa. The second book I wrote I wanted to dedicate to my son, Nick. I could have written an adventure or fantasy story and he would have been happy but because I write about difference and diversity. I decided to focus on boys who do not fit the typical male stereotype, like Nick. My Nick has always ben gentle and walked to his own beat. He's never cared what others thought of him, and we have always been proud of him for this. Now I must emphasise that Nick is not a disappointment to his father like in the story. When I was writing the story, Nick was really into dragons and How to Train Your Dragon, so that gave me the idea for the setting.

Land of Britannica came in a different way. I was at Ladies Camp last year and a fellow camper asked me if I'd written a book that could help her grandchildren. They weren't coping with the parents' marriage breakup. This welled in my heart and I knew I had to write the book. I already had a story, Land of Tahlia, which I thought might work. The story ended up being torn apart, the characters names were changed, as well as the plot. The final version being Land of Britannica.

My third child's story is well underway and will be published next year You'll have to wait to see what that one is about. 

A couple of extra things about the stories:

Brockwell the Brave is a fantasy but I researched the Viking Era so the setting, food, utensils, housing, clothing etc. are all accurate. I also put in some of the Icelandic language which is the closest modern-day language to Old Norse that the Vikings spoke. The Land of Britannca is an allergory, like the Wizard of Oz, where the main character solves a real-world problem in a fantasy world. Each of the characters that Brittney rescues in the Land of Britannica are representative of the phases in the grief cycle that children go through when readjusting to their new family situation. 

***

In my speech I thanked my family, my friends who helped me set up and with the catering, my friend Raelene Purtill https://www.facebook.com/PurtillWriter who was my MC, my fellow writers at Write Links http://www.brisbanewritelinks.com/, my editor Sally Odgers at Affordable Manuscript Assessments http://www.affordablemanuscriptassessments.com/ , and the team at Book Cover Cafe http://www.bookcovercafe.com/. 

The novels are available at many online stores, as a paperback and an ebook. See my website for more details. 

www.jennywoolsey.com

 

Blog 99 - Your Invitation to my Double Book Launch!

I am very excited to be holding a double book launch for my children's novels, Brockwell the Brave and Land of Britannica on Saturday 16 September.

It will be a fun afternoon of playing in the park, dressing up, craft activities, afternoon tea and book signings.


Both books will be available on many online stores and as an ebook from Amazon.

To rsvp via my Facebook event please go to the following link:

Jenny Woolsey - Author; Book Launch Facebook Event

www.jennywoolsey.com

Blog 98 - Happy Father's Day!

Wishing all fathers a very happy day. May you be spoilt and feel the love and appreciation for you.

My father passed away in 2003. The older I get and the more I learn about society's biases and beliefs towards people with disabilities and who are different, the more I realise that both my parents were trail blazers in many ways. They didn't hide me away. They wanted me to have a regular life like my siblings. They loved me, believed in me and they were proud of my achievements. And for that I am truly thankful.

Today I took the annual Father's Day picture of my husband and our three children. My husband too adores his children, has the belief that our children can do anything, and is proud of their achievements no matter how big or small. He fights the prejudices that still remain in the world.

This is my daughter singing 'Happy Father's Day.'

Here are two great men I have been blessed to know, who have gone against society's prejudices and forged ahead to make the best life they can for their children.

Do you know a man like them?

www.jennywoolsey.com

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 on...one 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)

www.jennywoolsey.com

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."
BY ANY MEANS NECESSARY

 www.jennywoolsey.com