Thursday, 7 December 2017

Blog 104 - My Interview on Channel Nine

I was contacted by Julie Cross, a journalist living in Sydney, who asked could she interview me and my daughter Melissa, about living with a craniofacial syndrome. This was related to the movie Wonder which is out in cinemas and creating a lot of interest in people living with facial differences. One of my friends, Olivia, had just done an interview with Channel Seven and it was tasteful and respectful, so I agreed, though with caution. Why was I cautious? Because I've had bad experiences with the media in the past. Now I must say that the awful experiences were ten years ago and were magazines, who wanted to exploit us for their own publicity. I have been in the local newspaper on numerous occasions since, and on Channel Nine, and all was fine.

I did tell Julie my concerns and asked that she be respectful, which she was. She stated the facts and what myself and Melissa said.

Click on this link to go to the article:

I have outlined some experiences from my past, and my children's operations in the early days of this blog, so I won't go back over them now. But I must say we are fortunate to be living in Australia where surgeons are expert at helping people born with craniofacial syndromes. And we have a free public health system so all children are able to access the health services they need.

I am conscious that this is not so in many countries around the world.

Even though adults and kids are often mean to people living with facial differences, as my daughter has alluded to in the Channel Nine interview, I believe that today's society is more compassionate and respectful. My children have generally been more accepted than I was and have not suffered the same degree of bullying that I did. There is obviously still more to be done, but there always needs to be more done for people living with disabilities or any type of difference.

When I was growing up Graham Kennedy, a renowned Australian comedian and entertainer, was my role model; the only person I knew who had my syndrome, and I would watch him every night on Blankety Blanks so I could see someone else a little like me.  I was also told that Marty Feldman, an English comedian, had Crouzons as well.

It wasn't until the movie Mask came out in 1985 starring Cher, that there seemed to be something with substance to watch. This movie created awareness and Cher became the patron of the Dallas Craniofacial Unit. and is currently the national spokesperson for the Children's Craniofacial Association.The movie Wonder will also make a chink in the wall of the current barriers and ignorance.

If you liked Wonder, then I have an Australian version aimed at teenagers. I would love support for my book. See below for the Kids Book Review review.

Ride High Pineapple is available from me, my website and from many online bookstores.
See my website for more details:

Monday, 27 November 2017

Blog 103 - My Thoughts on Wonder the Movie

My Thoughts on Wonder the Movie

Last Wednesday night, November 22, my friends took me to see the movie Wonder. I had read the book Wonder by RJ Palacio that the movie was based on, so was interested to see the screen adaptation. I must admit to being nervous and I'd bitten off all my fingernails waiting for five o'clock to arrive, when my friend Tracey picked me up.

Earlier in the day I'd posted on Facebook my nervousness about going to see the film. Another friend who knows myself and what my two children have been through, told me he thought it would be okay for me, except maybe for the bullying. After seeing the movie I was thankful for his warning as he was right.

What exactly was giving me anxiety? Was it a fear that there would be a poor or disrespectful representation of people with craniofacial syndromes? Was it that I wouldn't like the film as I had concerns with some of the parts of the book?/ Was it that it would trigger flashbacks to my childhood? Maybe all of these combined. I am unsure.

At the end of the movie, I sat and reflected on what I had seen. My overall immediate opinion being that it was  tasteful and respectful. There were many elements of truth throughout the movie, and I thought the movie would go a long way in creating awareness of craniofacial syndromes.

Many people in the craniofacial world, including myself have commented on Jacob Tremblay being cast as the child actor to play Auggie, and the fact that he didn't have Treacher Collins (the craniofacial syndrome that Auggie had). Many people, myself included, thought the actor should have been born with Treacher Collins, until I found out that the agency did try to find a child with TC but it didn't work out. And when I thought about the movie. It would have been very difficult emotionally for a child with TC to play Auggie, particularly if the child himself had experienced bullying in school.

So let me tell you my other thoughts in no particular order: (spoiler alert if you haven't seen the movie)

* Jacob Tremblay's portrayal of Auggie was very good. He was sensitive to the role, and brought character and a wholeness to Auggie. The film showed that a child isn't just a face. In the film Auggie has a Star Wars obsession, he has a dream to be an astronaut, he is intelligent and the best kid in Science, and he is funny (he has spunk). Jacob also portrayed well Auggie's roller coaster psychological and emotional states which being different creates,

(This link explains Jacob's transformation for the role, and how he prepared for it. It also has the 20/20 interview, with Nathaniel who has Treacher Collins and remarkably has many traits in common with Auggie. Nathaniel was considered for the role but it didn't work out, and his family had an input into the filming. Jacob Tremblay Interview + Wonderboy: a story of transformation)

* The film gave a glimpse into the world of operations and hospitalizations that can happen. Auggie had 27 armbands stuck on a pinboard. Now I always threw our armbands away and when I asked my children about whether they would display their bands like that, their responses were a resounding, 'No!' But having the visible display in the movie emphasised what a child may go through.

*Auggie talked about the stares he endured everywhere he went. For eighteen years, until my final operation, I was stared at every day. My children have also been stared at from the moment we took them home from the hospital. Every time we were out and about adults and children would stare at them and make comments. They are now in high school and although they've had many operations and do not look as severe as they did when they were little, they are still being stared at. My eldest daughter told me tonight when we were discussing this, 'You'd think I was an alien the way I'm treated. I am stared at and ignored.'
Being stared at for looking different is tiresome. You just want to blend in and be like everyone else.

* I loved the little girl Summer who sought out a friendship with Auggie. She  saw past his face and wanted to know the boy. That made me smile as it reminded me of my son who throughout his life has had girls seek him out to be friends with.

* I liked Jack. Jack received a scholarship to go to the school and I suspect was on the outer at times. He went against his friendship with Auggie and said cruel things to the popular group (with Julian the bully) when he didn't think Auggie was around. He obviously did this to fit in. I have seen this happen as a teacher. Though not nice, it happens. I also liked that Jack saw the error of his ways and made amends. If anything I thought Auggie was very quick to forgive and forget Jack's cruelty but maybe he understood why Jack did it, and he liked Jack. Again as a teacher, I have seen children be worst enemies one day, and best mates the next.

* Julian and his mates did a great job at being bullies. The bullying was the only thing that triggered a gut reaction in me. I didn't cry at all throughout the film as I had lived it in so many ways three times over. But the bullying, the verbal and physical, which I experienced growing up, triggered memories for me. That was good because that meant the movie was authentic.
Mr Tushman the principal in the movie did not tolerate the bullying which I liked. In my day no one stopped the bullying, even though they knew it was happening. Even though my mother was a teacher at my school, the bullying was daily. My children's teachers were pretty good at dealing with bullying in primary school. Maybe because I was a teacher at the school as well - I very closely monitored any incidents and the children in the school knew Melissa and Nick belonged to me. I talked to the children in my classes openly about them.

In the movie, as was in the book, there is a situation where Julian displayed their class photo with Auggie photoshopped out of it. It turned out that the mother did the photoshopping and she wasn't happy about having Auggie at the school. Now when I first read the book, I thought this was a bit far fetched, as I couldn't see any of the parents I knew doing that, but upon asking the craniofacial community in the USA, I was told it was highly likely to happen. I liked in the movie that the principal backed Auggie, and stood up to the bully parents. This is what all principals need to do for any type of bullying.

*Via, Auggie's older sister who often felt left out and that her parents' attention was always on Auggie also hit a nerve with me. In the movie, Via also didn't always want to be connected to her brother because the attention it created. My older brothers have been deeply affected by having me as their sister. I am positive they felt the exact way as Via. One of my brothers does not talk to me anymore, and the other has told me matter-of-factly how he hated spending time in waiting rooms and all my father's attention being on me. I'm sure they got sick of having to stick up for me and being associated with the girl with the freakish face. They did not have a normal childhood like their friends did. Shame that I couldn't help it and I was the one dealing with everything. And yes my parents were extremely proud of all my achievements, but I know they were also proud of my brothers' as well. They were definitely supported. Something my brothers didn't need to do as they were born with normal faces, was fight to show the world they could achieve as I had to do; and my parents had to fight the world to show I was worthy of being involved in the community and leading an inclusive ordinary life.

*There was a fight scene where Auggie was being bullied and Jack punched Julian. There was also a physical fight on the Field Trip which I won't comment on because I am unsure whether a bully (Julian's best friend) would actually stand up for the victim (Auggie) he'd been terrorising. But the fighting between Jack and Julian, was realistic for me. My brothers were often in physical fights over kids calling me names, and I too was physically pushed over in primary school. I remember my best friend Diane in high school standing up for me often. Auggie stepped in and fought his bullies in the end - that is something I never did. I always turned and walked away. I found boys were the worst at bullying when I went through school. For my daughter, it's been the girls.

*  The film showed how a family unit pulls together when life gets tough. It showed parents' unwavering love for their child. It showed that parents often put on hold things they want so they can be there for their child. In the movie Julia Roberts' character, Mrs Pullman, put on hold her Masters thesis while home schooling Auggie. I went back to work full-time when Melissa was three months old and Nick was seven months old, and worked around my children's operations. I really don't know how I did it. My three children have had 25 operations between them. When Melissa and Nick were little, my principal was not at all supportive and would go mad at me because I was having time off. Some parents as well were not supportive of me having time off to be with my child. These people had absolutely no clue the amount of stress each of those cranial and facial reconstructions caused on a parent, and that I was firstly a mother, and no way was I going to miss being by my children's sides.
I have a vivid memory of having just gone through one of Nick's major skull expansion surgeries, and on our way out the ward, the surgeon stopped us and said Melissa would be operated on the next day as there had been a cancellation (there was to have been a two week break between them, and Melissa's would have been in the school holidays). You don't say no to the surgeon when told this. I rang my principal and he went off his brain at me and I was inconsolable. Nick had been isolated with suspected meningitis and he hadn't been sleeping well. I was a complete mess from the stress, lack of sleep and no outside support (it was just my husband and myself). I told the kids' neurosurgeon and his reply about my principal was, 'He needs to come and see what you are dealing with.'

In the early days we had very few visitors. The people I thought were our friends were nowhere to be seen, and my mother who couldn't cope with anything Crouzon related, stayed away or babysat. (My father passed away after Melissa's first surgery. He was my rock during that time.) It was so upsetting to us - it made us feel like we were insignificant. It was only when we joined a church that finally people supported us. Maybe  people just didn't understand - we were living in an alternate dimension I guess.

* Owen Wilson played Mr Pullman, Auggie's father. He hid the astronaut helmet Auggie wore often to hide his face. Mr Pullman said he did it because he missed Auggie's face. My daughter tonight told me that I keep telling her that there is nothing wrong with her face, that because I see her all the time I don't see her big eyes or her flat face... but that she sees it every day in the mirror. And I guess she is right. I see my beautiful daughter, not how much her face has changed since her RED halo surgery.
The only commonality between Auggie wearing a helmet and our life would be the wearing of sunglasses to hide our eyes, or putting a blanket over the pram when they were babies. Never did the kids wear masks.

* I would have to say the thing that bothered me the most was the ending. Auggie won a medal for being a strong person, a good person. It was the final award for the night. Why didn't he receive an academic award for Science when he was always the one with the answers and built the best Science project? It seemed to me that the token disabled person had to be rewarded. In my world that didn't happen. My daughter in particular would go for leadership positions with the regular children and be knocked back. She tried and tried to show people she was more than how she looked and could perform the duties, and she would end up in tears and disappointed, despondent with life and people. It always seemed to be the popular out-there kids who got the positions over and over again. Both my children did receive Children of Courage awards outside of school, presented by the Lions Club, which I don't think they really liked or wanted, but at the time I think I wanted it for them, as recognition of the tough journey they'd been enduring. Maybe this is what the movie was trying to aim for.


So overall I have to say I would encourage people to go and see the movie. My children are not going to see it as it doesn't interest them, but I know many children who have craniofacial syndromes have gone to see it.

Please remember that every child with a craniofacial syndrome has a different journey and different experiences, though many have endured surgeries, stares and comments (if not bullying).

The movie promoted being kind to people who are different, not judging a person by how they look and the importance of getting to know the whole person. This of course extends way past facial differences, to race, weight, identity, sexuality and disability.

Friday, 17 November 2017

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.


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.


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.


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.

Monday, 13 November 2017

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

* Alastair McEwin - Disability Discrimination Commissioner

* Roger Slee - Professor, School of Education, South Australia

* Jihad Dib, MP - NSW Shadow Minister for Education

* Jody Carr - MLA/depute Oromocto-Lincoln-Fredericton, Canada

* Emma Husar, MP - Federal MP and Parent Advocate

* Carol Quirk - Co-Founder Maryland Coalition for Inclusive Education

* Leanne Woodley - Senior Education Consultant, Association of Independent Schools, NSW

* Yolande Cailly - Parent and Advocate

* 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.

Monday, 18 September 2017

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 who was my MC, my fellow writers at Write Links, my editor Sally Odgers at Affordable Manuscript Assessments , and the team at Book Cover Cafe

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


Monday, 4 September 2017

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

Sunday, 3 September 2017

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?

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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Thursday, 13 July 2017

Blog 92 - Is Your Life All About Your Facial Disfigurement?

I read this post on my Facebook page and it resonated with me.

To my friends with Apert Syndrome. Its just an observation made with love, care & thought. I noticed that some of you are burrowing deeper into that singular identity. You are more than someone with Apert Syndrome. You are a human & there IS more to you than AS & you don't have to focus on that every time. You are a beautiful child of God that can get through the seas of human life. It's ok to make mistakes, it's ok to have some negative little things in life, heck, I don't think people realize that when they hate Mormons or immigrants, that means they hate me & that's ok. I don't expect everyone to love me or agree with me on a lot of things, that's part of life for everyone. Go ahead & critique me for being Mormon or an immigrant, it's apparently a thing. Apert Syndrome doesn't have to be the conversation topic every time & I can attest that it doesn't have to be a life crisis either. Honestly, Apert Syndrome is one of the best things that happened to me. It's not a disease, it's not a curse & it's definitely not an excuse to not explore every beautiful aspect of life. We all have setbacks, we all have baggage, we all have haters, we all have taxes, we all have bad days some days, we all have sad days & heartbreaks. We're human. And please, please learn about African American History & the plights, stories & sacrifices of other cultures. I'm surprised at the fact that some people with Apert Syndrome have yet to learn that they're not the only ones suffering from discrimination, stares & other unfairness or weird public moments. It's not always all about you, or me. We're all important. I'm happy, I'm okay, I just want to raise awareness that there is diversity even within the craniofacial community in the US. 

I like that the person writing this post realises that her craniofacial syndrome does not define her. It is just a part of her. She experiences the same ups and downs in life that many people experience who do not have something wrong with their face. There is discrimination in all quarters. I see it every day on the news. It is the same with my daughter who has Down syndroem. Down syndrome is just a part of her - it does not define her. 

Advocate and spread awareness but do not be bitter about the hand that has been dealt to you.

I think a positive attitude about having a facial difference goes a long way to having a happy and successful life. People who know you, will not care about how your face looks. And those that make comments mean nothing in the scheme of life. Yes the comments hurt, but you need to try and shake them off and keep on going.Yes it's annoying that you have to spend time at the hospital and undergo painful surgeries, but there are many people with other genetic conditions who also have surgeries and spend a lot of time at the hospital - I see them every time we're sitting in a clinic.

My advice is, get out there and live your life. You only have one, so enjoy it and leave your positive mark on the world!


Tuesday, 11 July 2017

Blog 91 - Anniversary of Book Launch of Ride High Pineapple

A year ago I held my book launch of Ride High Pineapple. The story had been in my heart for a long time but it wasn't until I left teaching that I was able to put pen to paper and write the book. I wrote a few different versions of the story, finally being happy with the final draft that was published. I am rereading Ride High Pineapple now which is great because I'm viewing it with fresh eyes.

The story does show what it's like to be born with a facial disfigurement, but it also looks at many typical teenage issues, how mental illness affects a person physically and mentally, how important a mentor can be; and of course I love the analogy of the pineapple that Issy the main character uses to deal with her lack of self-confidence.

What I think is great about this book is, that anyone who feels different will get something from it. Anyone who suffers from anxiety will understand how Issy feels. The book isn't just about her face. Though Issy's face leads the story because it influences Issy's whole personality, her self-confidence, her possessiveness of her best friend and why she is bullied.

So why did I write the book?

Because I was born with a facial disfigurement, called Crouzon syndrome. Most people who meet me do not know this, because of the surgeries I've had. They do not know that the bones in my face have been rearranged and I have pieces of my ribs and hip bones in my face. For example, my brows are made from hip bone. Under my eyesockets are pieces of ribs.

Growing up was tough but I was a happy child and had friends. I tried to live a normal life but it was difficult because other kids and adults told me that I different. I was bullied, I was stared at, I was shunned. The surgeries I underwent were horrific. But I was a determined soul and that kept me going. I did suffer from anxiety and shyness in new situations.

There were no books around about someone who was different like me. I Can Jump Puddles is the only one I remember where a child was disabled. When my children were born there were still no stories around. It wasn't until Wonder by RJ Palacio came out in 2012 that finally there was a book. I didn't want to write a book the same, so went with a teenage girl and broadened the book so it wasn't just focussed on the face.

If you haven't read Ride High Pineapple, it is available as a paperback and an ebook, from my website, Amazon, Barnes & Noble, Acebooks, Kobo, Book Depository, Fishpond, Booktopia.


Wednesday, 5 July 2017

Blog 90 - Teaching Jessica Front and Back

What did I teach Jessica today? What is the front of a store and what is the back of a store. I told her Nick was at the back of the store in EB Games which is a little shop. Jess was in the middle. She turned and walked to the front, out the door, then proceeded to walk down the mall calling out, 'Nick where are you?' I had to run after her and take her back to the store, showing her where Nick was, explaining to her where the back of the store was. Just another thing kids normally pick up but I've had to teach it to Jess. Oh and this was after she picked up a Just Dance game for a XBox One and wanted to buy it. I had to keep telling her we didn't have an XBox One. I physically had to take it from her and put it back. She wasn't happy with me. It's times like these it hits me that she is intellectually disabled.

Friday, 30 June 2017

Blog 89 - Down Syndrome Blog on The Mighty

Today I read a blog post on The Mighty website. The author, 21 reasons why it's okay to have a child with Down syndrome. The blog post emphasised the positives.

Here are the first four facts:

1. You may be feeling shocked, scared and alone. It’s OK, so did we. It will pass. What you may be feeling now is transient. Your life has changed for the better, you just don’t know it yet.
2. Your baby may be more like you than different.
3. There is no “one size fits all” with Down syndrome. Your baby will be unique, beautiful and very much their own person, just like you.
4. Your doctor may present a negative view about Down syndrome and paint a bleak picture. I promise you that life with a child with Down syndrome is not bleak. Far from it. It’s bright. Very, very bright.

My daughter, Jessica was diagnosed at four weeks, due to a variety of reasons. When we received the label, I totally freaked out. The only things I had been told about Down syndrome, were all negative. I thought my world had collapsed. I thought having a child with Down syndrome was going to be excruciatingly difficult and a burden. Post-natal depression immediately consumed me.

But you know what? We're now ten years down the track, and I must say it hasn't always been easy, but it's been an awesome ride. My daughter has talents and spunk. She is loving and kind. She is reading and writing, doing math and participating in regular school. Jessica is in the school choir and will be in the school musical at the end of the year. She's achieving in some subjects at and above her age group.

Having a child with Down syndrome has definitely not been a negative experience. In fact, it's been  pretty good actually.

When my daughter's out and about, I miss her. I just couldn't imagine my life without her being in it. There are no regrets or 'I wish' concerning her. The only 'I wish' I have extends back to the lack of positivity about the syndrome. I wish that there had been encouraging information and blogs back in 2007. I wish the obstetrician had said, 'Congratulations', not 'I'm sorry'. Everything I read after Jessica's diagnosis was negative, negative, negative. What the doctors told me was negative, negative, negative. Blogs like this one, shine a light into the dark world of prejudice towards people who have an intellectual disability.

Please read.

Friday, 26 May 2017

Blog 88 - Face Equality Day

Facc Equality Day - the UK

The 26th of May is Face Equality Day in the UK. It is a day to raise awareness of what people with a facial difference or disfigurement have to deal with on a daily basis. I was fortunate that after my last surgery at 18, I didn't endure too many stares or teasing. I only really endured 18 years of daily stares, pointing, and comments. Some people endure a lifetime. Tulsi's story highlights this. The lady who is filmed has a facial disfigurement and the film shows what happens to her each day as she moves around her community. This is what I experienced as a child and teenager. I am thankful that I do not experience it now, but I am fully aware that there are many people in the world, like Tulsi, who will never escape it. 
On this day, please take a minute to think about how you react to other people's differences. Are you choosing to be kind? 


Sunday, 21 May 2017

Blog 87 - In this house...

For all my friends who have children with medical needs. I understand because this is my life too.

Saturday, 20 May 2017

Blog 86 - I See You

*I See You*

I see you running your child to therapy when your friends are running their kids to Little League or ballet

I see you slipping out of the conversation when your friends are all chiming in about milestones and test grades.

I see you constantly juggling appointments and meetings.

I see you sitting at your computer for hours researching what your child needs.

I see you cringe when people whine about what feels like petty things.

I see you spread thin but still going the extra mile for your family.

I see you digging for depths of strength you never dreamed you had.

I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.

I see you rising early in the morning to do it all again after another chaotic night.

I see you when you’re hanging on to the end of your rope for dear life.

I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor.

What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you.

Whichever day today is, you’re worthy, you’re good and I see you.

~Alethea Mshar