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

Sunday, 23 April 2017

Blog 85 - Be Kind

We should always be kind. Kind to animals, kind to the environment, kind to each other. The world needs more hope, more peace, more love and much more tolerance of each other's differences.

Tuesday, 21 March 2017

Blog 84 - Ed Sheeran's Video on Being Weird

I like Ed Sheeran's music but wouldn't call myself a massive fan. I find it hard to identify with singers as I believe most don't  live in a world of disabilities or difference. And don't get me started on the women who strut about half naked on stage. Their music seems to play second fiddle to their soft porn.

But today I have a new appreciation of Ed. Why? Because the following video was posted on my Facebook page today. My friends all know my passion for advocacy and spreading awareness of difference and diversity, so I knew it must have something in it that would fit within my agenda. I wondered what. I was definitely curious.

What I heard Ed say surprised me. In particular there were things about Ed that I had never heard reported in the media before that he talked about: 1) He was born with a port-wine stain birthmark on his face and 2) He had a stutter.

By Ed telling his story, he will touch many more hearts in the world, not just because of his music. It is awesome to see people who are looked at as being influences in the world, saying it's cool to be quirky and not to lose your individuality.

I urge you to watch the video too.

Go Ed! Keep telling the world that it's okay to be different!

Monday, 20 March 2017

Blog 83 - World Down Syndrome Day 2017

This blog has been sitting dormant, as my day-to-day life has gone on by...writing, studying, speaking engagements, being a wife and mother. You know how it is. Even though I've been writing an awful lot, I must admit I didn't think this blog needed updating. My children are growing up, I'm not having the same struggles as I was when they were younger, so my other blog has received my sole attention, But in fact that's wrong. In actual fact I do have many things I need to say - they've been accumulating into a giant heap of wriggling issues in my brain. So today being World Down Syndrome Day, I am going to start.

I wrote an article for Down Syndrome Australia for WDSD. It was featured today on their website and Facebook page.

This was the final article out of 21 which have been shared to the world from families and individuals. These articles are all worth reading, and I think they show extremely well that people who are born with Down syndrome, are leading ordinary lives which are fulfilling and exciting. Being born with Down syndrome, is not a negative thing, as doctors and the medical fraternity make it out to be. My blinded ignorant eyes were opened when I ventured into this world - a world I was terrified of - a world that society had told me was going to be awful and why would I want to go into it?
I am here now to stand tall and firm, and tell society off, for making judgements about the value of a human life. My daughter is a joy and IS valuable. She is just like any other child I know - she sings and plays and reads and writes and tells jokes and swims... My daughter has dreams, and hopes and plans for her future. She wants to get a job, get married and drive a car. All normal things. Am I going to stop her because she may be a bit slower than the average child? No way! I am going to support her and help her to achieve to her full potential, just like I do for her sister and brother.

So for today I will end here with my article, the media release from Down Syndrome Australia and a video created for World Down Syndrome Day #notspecialneeds:

Down Syndrome Doesn’t Define You

“I think your baby has Down syndrome. Why haven’t you been told already?” said the frank geneticist when we took our one-month-old daughter for diagnosis. Shock, like a cattle prod slammed to my forehead, shot through me. The vision of her slanted eyes I had noticed when she was born, zoomed around my brain. I felt numb. I had known there was something not quite right with Jessica – she slept way too much and had feeding problems – but no one we had seen for help had mentioned Down syndrome.
The paediatrician at her birth had directed us to the geneticist who we were seeing due to another family genetic syndrome. The wait to hear what the blood test revealed was excruciating. My reaction to the ‘positive to Trisomy 21’ news was horrific. I didn’t want to look at my baby or touch my baby. I spiralled down into post-natal depression and I was filled with fear. I couldn’t see a bright future for my daughter, and the “I’m sorry” from well-meaning friends didn’t help the situation.
My strong feelings made no sense to me. I knew absolutely no one with Down syndrome. Somehow, somewhere during my life, I had picked up that Down syndrome was a really terrible thing for my child to be born with, and for my family to have to deal with.
Now, nine years on, I wish I could go back in time and talk to the terrified mummy I was. I would softly tell myself – it is going to be okay. There is nothing to be scared of. Your daughter will develop her milestones, she will talk and sing, she will have friends, she will love swimming, she will go to mainstream school and be involved in extra-curricular activities, she will have her own personality and talents, she will have a vivid imagination, she will learn independent life skills, and she will bring much joy to your family and others around you. You will love her, cry over her achievements, advocate for her fiercely and she will be a light in the world. It will not always be easy, but that is a typical life. Your beautiful daughter will show the world that having Down syndrome is just one part of her, it does not define her.

#World Down Syndrome Day 2017 – World Down Syndrome Day 2017

21 March 2017
World Down Syndrome Day, the 21st of March, is an international awareness day to promote a better understanding of Down syndrome, the vital and active role that people with Down syndrome play in our communities and the actions needed to be taken to ensure that people with Down syndrome are able to realise their fundamental human rights. Down Syndrome Australia welcomes the opportunity to be part of this global celebration of people with Down syndrome and effort to combat stigma and misunderstanding about Down syndrome.
This year the theme for World Down Syndrome Day is “My Voice, My Community.”  As part of our celebrations for this day, Down Syndrome Australia with the support of the Parliamentary Friends of Down Syndrome are hosting a World Down Syndrome Day morning tea at Parliament House on 22 March.  This annual event is an opportunity to bring together politicians, key stakeholders and people with Down syndrome and their families  to celebrate this important day.
This year, we are pleased that we have two people with Down syndrome, our South Australian Member Ambassadors, James White and Zoe Kyriazopoulos who will be speaking at the event.  We will also be joined by Disability Discrimination Commissioner Alastair McEwin who will talk about the importance of community understanding of intellectual disabilities and the barriers to inclusion faced by people with Down Syndrome.
This event will also be an opportunity to showcase the latest international awareness film produced by CoorDown.  This film uses humour to address serious issues around the use of the terminology “special needs” and highlights that the fundamental needs of people with Down syndrome are the same as everyone else- the need for education, employment, access to health care, and the community.
Down Syndrome Australia CEO, Dr Ellen Skladzien said “It is vitally important that we address the stigma and lack of community understanding about Down syndrome.  A recent survey we conducted of more than 800 families of people with Down syndrome found that approximately a third of people with Down syndrome and their families had been discouraged from taking part in everyday community activities or education because of their disability.”
World Down Syndrome Day is an opportunity to dispel the myths that surround intellectual disability and to highlight the active potential of people with Down syndrome.  As part of our countdown to World Down Syndrome Day, Down Syndrome Australia has profiled 21 people over 21 days to highlight the many different ways that people with Down syndrome are involved in their community.  These stories can be found at:

NOT SPECIAL NEEDS | March 21 – World Down Syndrome Day | #NotSpecialNeeds by CoorDown

Happy World Down Syndrome Day. :)