Monday, January 17, 2011


Ok so do a little ranting on here, and I vent about my sometimes difficult days or moments with my kiddies. However, I do have humbling moments. I work at an SSP school. SSP stands for Schools with Specific Purposes which basically means children with disabilities. These kids have hearing and visual impairments and mental disabilities that prevent them from being able to attend mainstream schools. A lot of the children at our school are tube fed, have medications throughout the day and need to be monitored. We teach a lot of children who are autistic in all its different forms.  This year I will be taking a class with a student that has been diagnosed with Batten's Disease. We have another student who is older with this disease already at the school, but the student in my class is new to the school. She has been transitioned to our school from mainstream as her condition is deteriorating. Some children who have been diagnosed with this disease can be eating drinking, talking and doing a lot of regular functions and then, brain cells begin to die and these functions slow down and eventually and sometimes suddenly stop. I want you to take a look at this clip from YouTube, its a little long but do you best to see it through, or if you skip a little stop at the mother's interview because it really pulls at your heart strings and makes you appreciate what you have but also empathise as best you can with her and what she takes on each day in her life.
I love my job and learning about the students that I teach and come into contact throughout my day. Working with children with disabilities gives you a new way to look at life and your own family but also how we can serve others. All the kids at our school just want to feel cared for and have fun, its a great experience and if any of you out there are looking to volunteer for anything, please consider going down to your local SSP school and doing a day or two of service they would really appreciate it I'm sure, but I will guarantee, you will go home with a different perspective on life and if you are a mother, on motherhood too.


  1. Phew, that was tough. But necessary. I have always been fascinated by different genetic disorders and then when I became a mother it was an entirely different reasons. My heart just goes out to these mums and it reminds me that I really don't have a lot to complain about.

    I am grateful and inspired by people like yourself who have hearts big enough to care for special kids. x

  2. I "know" a young man with this tragic condition. His name is Bryce and his family are incredible people who are finding it hard.

    We all need to have our eyes opened to things beyond our own backyard.

    I know - my son has Asperger Syndrome and as his advocate I need to educate others so that his path in life is not full of obstacles thrown up by ignorance.

  3. Firstly you have a great and good heart. And it is so important for those of us whose lives aren't impacted by conditions like this to be aware and to care. Thank you so much for this. x

  4. Wow - no, I'd never heard of this condition before. The interview with the mum had me in floods. What a hideously cruel thing to happen to any family. I understood a tiny bit of how she felt - "being out in the cold and looking in" when all the other mums were talking about "normal" stuff. People never mean to be cruel but they forget. They can't ever imagine this stuff happening to them. There should be way more in terms of support for families and siblings out there. So sad.
    Thanks for making me more aware x