About

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This is the story of Sophie Rose. My beautiful  daughter. My little ray of soul shine.

Sophie came to us with many things…purity, innocence, courage, wonder, curiosity, joy and lessons to teach.

She also came with a little something extra…Kabuki Syndrome and Asperger’s.

This blog has been written to share our journey, and in the hope of helping other parents who are on similar paths.

I first started this blog 4 years ago, when Sophie was 4 years old.  Sophie is now 8!  Like many kids her age, Sophie enjoys playing in the park, arts and crafts, camping,  jumping on the trampoline, going to jazz and gymnastics lessons, attending Girl Guides, spending time with her Nana and Papa, playing with her friends and listening to music and dancing along.  She  just loves life!

Unlike most other kids her age, Sophie spends more than her fair share of time in therapy or doctors appointments.  Over the course of her life she has been under the care of  19 medical specialists and six therapists. She works hard to achieve things that come naturally to most children.   She has had more doctors appointments in her few short years than most of us will have in a lifetime.  She has had to undergo  surgery, hospitalisations, multiple blood draws, X-rays, hearing tests, EEGs, speech therapy, physiotherapy, horse riding therapy, occupational therapy, social skills therapy and more. Her weeks are very busy!!!   Sophie has low tone, delayed fine and gross motor development, social delays, Sensory Processing Disorder, Auditory Processing Disorder, speech articulation issues, immune issues and various food intolerances.  Her therapy and medical needs will be ongoing….this is a marathon, not a sprint.

Despite Sophie’s many challenges, she is an absolute joy to be around. She works hard at all her therapies, but also just adores spending time doing “normal” things with our family, like picnics on the back lawn, beach adventures and trips to the zoo.  Life is not always easy for her, or for us, but we feel blessed to have her in our lives.  She has taught us so much, and we would not have had the pleasure of meeting so many wonderful people if she had not come to us.

The site is split into several parts:

Blog – Our Journey with Kabuki and ASD:   This area contains our personal story.  It addresses a range of different issues relevant to special needs parenting including feeding, sleep, motor development, speech development, social inclusion and more.

Kabuki, Health and Nutrition:    This area will focus on topics that may be of particular interest to those who are pursuing dietary intervention for their children.   Some of the posts in this section may be a little more technical in nature.  This section is currently in development, and more posts will be added over time.  The information in this section is NOT advice or recommendations on what to do for your child, it is simply information that I have collated that I thought may be of interest to the community.   Please note that there are a number of posts about dietary intervention, feeding etc in the main blog as well.

You can find the links to the different sections at the very top of this page.

Please note that not all the posts in this blog appear on a single page.  When you get to the bottom of the visible posts, you will see a button that says “older posts”.  You may need to click on that button to see all the posts that have been written.  The blog starts from when I was pregnant, and continues up to the current day.

I hope you find something in this blog to help you on your path.

Thanks for reading!

 

 

 

 

 

 

 

4 thoughts on “About

  1. Hi Kath!

    My name is Hannah Benjamin and I am reaching out to you because my company Trende just did a feature on a young woman named Jordan Reinman who found out she has Kabuki Syndrome only a couple of years ago.

    I would love to share this video and editorial with you that we did with Jordan and hope that you will share it with others you believe will be inspired by Jordan’s story. She is an amazing young woman.

    Here is a link to Jordan’s full video and editorial: http://www.trendeing.com/june.html

    Thank you for your time and I hope Jordan’s story inspires and encourages you.

    Sincerely,

    Hannah Benjamin

    Like

    • HI Hannah – I hope this comment gets to you because I’m not any sort of expert with WordPress and I’m unclear as to whether you will get a notification that I replied to you. I first became aware of Jordan Reinnman a couple of years ago, when she joined a facebook support network fro people with Kabuki Syndrome. She has been such an inspiration to me, as at that time she was the first adult I knew of who had Kabuki syndrome and who did not have intellectual disability. My own daughter is not intellectually impaired, and I had never been able to imagine what it might be like for her as she grew older. So I have followed Jordan’s story closely and been in contact with her via facebook. She is indeed an inspirational woman, and this piece you have done is absolutely exquisite. Thank you so very much for sharing ❤

      Like

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