We have been very busy since I last posted.
I have spent the last two months compiling reports, assessments and letters of support to add to our application. I have written countless e-mails and sent hard copies of a flyer that we created to our State MPs and anybody else whom we thought needed to be aware of our plight. I have spent hours on the phone seeking advice, asking questions and learning much. It has been a full time job, incredibly time consuming and for a long time, it felt like I was getting nowhere.
Then one evening, I received a phone call that changed everything. A staff member from Maxine Morand's office rang on Maxine's behalf, explaining that they had received my correspondence (I instantly blushed as I was fully aware of how much correspondence I had sent!). I wondered if I was to be reprimanded and told to stop pestering them. She went on to explain that Maxine would be taking a personal interest in our case and that we would be receiving further contact from her office in the following days.
The following day, I was contacted by Marilyn McKeown from the Department of Education, informing us that Taylor's case had been brought to her attention and she was asked to contact us, to discuss matters further. She was offering her assistance in guiding us through the complex process of preparing the application and offered to support our application to have Taylor recognised as 'hearing impaired' and placed in an appropriate deaf educational setting.
Finally, people were listening and seemed willing to help,
Our case continues to gather momentum with some heavy weight individuals and agencies stepping on board to add their support. I had a very interesting and informative meeting with Eden Parris from CAUS - Communication Rights Australia, who was unbelievably knowledgeable and able to advise us of our rights and recent developments in domestic and international law that pertains to our case.
So we are not over the line yet....but things are certainly feeling a lot more positive.
We are now preparing to meet with an independent DEET (Department of Early Childhood Development and Education) nominee, who will oversee the formal application process (ENQ - Educational Needs Questionnaire). After this our application will go in to 'central' to be evaluated by a panel and a resolution/decision will be made. This could take a month or two *SIGH*.
So we will wait, in anticipation, for a positive resolution.
Thanks to the following individuals and agencies that have lent their support to our cause:
Deaf Children Australia
Epilepsy Victoria
The Association for Children with a Disability (especially Kathy Pompetti)
Eden Parris and CAUS - Communication Rights Australia
Jason Merlino MP
Maxine Morand, Minister for Children and Early Childhood Development
Marilyn McKeown, Department of Education
The many medical professionals at the Royal Children's Hospital, whom I won't identify personally for confidentiality purposes.
Please continue to show your support by clicking on the comments link below and leave your comments, thoughts and words of encouragement.
Subscribe to:
Post Comments (Atom)
Its great to hear you are making progress. I am looking forward to hearing about a 'positive resolution' in the near future.
ReplyDeleteit makes no sense that a young girl in this position is not eligible for the education level she deserves. good luck in your fight to make this happen. keely T.
ReplyDeleteI would like to acknowledge my support for your case. Hopefully someone sees reason and you get what is deserved for your little girl - Best wishes, Simone Cook
ReplyDeletehey Peta, Taylor is so lucky she has such a strong and determined mum looking after her! it seems ludicrous that she can't automatically enrol in the deaf school. where is the lodgic? keep up the fight, something good will happen for Taylor. Michelle x
ReplyDeleteHi Peta. Glad to see that things are finally heading in the right direction for Taylor. It's a shame that something that should be every child's right has had to take so much determination & effort on your part to make happen. You have our utmost support. Hopefully when you're successful (and I have faith that you will be), you will have paved the way for future children in similar circumstances to automatically get the education they deserve. Keep up the fantastic work. Dani & Scott
ReplyDeleteGreat to hear that things are moving along. You are doing a fantastic job fighting for Taylor. I am fairly certain most people would give up. I am eagerly awaiting a positive outcome.
ReplyDeleteHi Peta,
ReplyDeleteYou have my wholehearted support for your quest for the education Taylor so clearly needs and deserves. It angers me that in a democracy the rules are so slavishly observed. We need courageous leaders prepared to step outside the boundaries of "criteria" who are willing to recognise individual needs. Sadly, this was also highlighted by the Bushfire Commission. I admire your determination and hope you are successful in achieving the right outcome for Taylor. Carolyn Floyd
Good luck with the fight for your little girl Peta. Its crazy that she cant get the education she deserves. Keep fighting! Lauren Shallcross.
ReplyDeleteHi Peta,
ReplyDeleteI admire your courage and commitment to helping your daughter, Taylor, get the education that she is entitled to.
We also have a daughter (8yrs) with LKS who was diagnosed as being functionally deaf in Sept/08 at the peak of her last regression, which had started mid-June of 08. At her school neither the teachers nor the administration would believe that LKS was even a real syndrome, stating that she listened when she wanted to and spoke when she felt like it. All this despite multiple letters of support from her neurological team at BC Children's Hospital. We too started the journey towards having our daughter educated at the Provincial School for Deaf - HH: the only place that could provide for her needs.
We were fortunate to have been put in touch with Island Deaf and Hard of Hearing who had the compassion and sense to realize that although Thalia's hearing tests proved that the functioning of her ears was fine, that she was indeed functionally deaf due to the seizure activity caused by the LKS and that she (and the rest of the family) needed help right away. She arranged for a local woman, who is profoundly deaf herself, to come to our home once a week to teach the entire family ASL, for which I am eternally grateful.
By November 08 we were meeting with other parents who had enrolled their children into the Provincial School for Deaf and Hard of Hearing. Even though I wasn't sure I could actually put her on the plane every Sunday afternoon and not see her again until the following Friday evening, I knew that I would not be serving her best interests if I didn't pursue getting her into that school as quickly as possible. Day by day I could see her self esteem dropping measurably as she tried to understand what was going on with her body. She isolated to the point where I felt I had lost her for good.
Praise the Lord that after being on the medication, Sulthiame, for a year, her ability to decode speech very suddenly started to return mid-Jan/09. Within three days of noticing she was able to understand what I was saying before I finished signing it, she began to speak...first, parts of words (beginnings or endings), then full words, and within the week, was speaking three and four word sentences.
Anyway, Peta, sorry for such a long comment to your posting but if there is anything that I can do from BC, Canada to help your case with your daughter, Taylor, please let me know. Our Thalia is currently able to decode speech and is saying more & more each day. Of course we have no idea how long this will be the case as we understand that another regression could happen at any time. Thankfully, we are well on our way to using ASL and continue to support verbal with visual supports. If and when she should regress again, I would not waiver from getting her into the school for deaf and hard of hearing. It is the only way I could be sure that she would get the education she is entitled to. I want to be a voice for families who seek support from well meaning professionals who could not imagine what it is like to see their child suddenly unable to communicate or identify environmental sounds unless they had experienced it.
Peta, I will be praying for you & Taylor and look forward to following your blog.
Blessings,
Christine