Tuesday, July 20, 2010

Taylor wants to meet the PM!

My daughter informs me today that she would like to meet the Prime Minister - Julia Gillard, or as she calls her "the lady that is always on the news". Most other kids like Justin Beiber or Hannah Montana, but NO, not Taylor. Taylor's rock star is Juila Gillard! So Julia, would you like to come around for a cup of tea and meet Taylor? Please?

Monday, January 4, 2010

Update - She's AVERAGE!!!!

It has been a while since I last updated. Things have been chaotic. Taylor has now finished at her Early Education Program and looks forward to starting at her new school in February.

The biggest development in the past few months has been the results of the extensive cognitive/intelligence testing that was conducted by the neuropsychology team at RCH. You may recall that we had to undergo a WIPPSI (an IQ test), administered by the Education Dept. We were shattered when their test results indicated that Taylor had an intellectual disability. We were also a little dumbfounded as how can a test that is clearly slanted against hearing impaired children and children with language impairments, yeild accurate results. Despite my protests - the label was applied.

After discussing my frustrations with Taylor's neurologist, he referred us to the neuropsychology department. There, they conducted extensive testing of her verbal, non verbal intelligence, plus processing speeds etc. She was allowed a signing interpreter. It was a grueling process. The testing was conducted over several sessions over many weeks and the results have finally arrived.

She has issues with her verbal receptive and expressive language = "LOW", which we expected BUT everything else was "AVERAGE". Average intelligence, average processing speed, average, average, average AND she testing "HIGH" in her visual processing, comprehension and cognition.

So all in all, she is an average kid, with average intelligence. Can't tell you how happy that makes us.

Saturday, August 15, 2009

Thanks everyone for your support. Now to change the ENQ process so that other children who have similar diagnosed problems, such as neurological deafness, severe dyspraxia or permanent tracheotomies don't have to go through the same issues!! He he he. Come on. Join me. Why stop here?

Saturday, August 8, 2009

WE DID IT!!!!!

On Thursday afternoon, the phone rang - the phone call we have been waiting for, informing us that Taylor has been formally recognised as hearing impaired and will be eligible for full funding to attend a deaf school or deaf facility. HOORAH!

I have to admit - I wasn't expecting our application to go through so smoothly and it renews my faith in the system; recognising individuals needs, learning styles etc.

Our sincerest thanks to everyone for their support, advice, encouragement.


Tuesday, July 7, 2009


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.

Saturday, May 23, 2009

We need your support!

We are asking people to lend their support in our current fight to have Taylor placed at a School for the Deaf or Deaf facility.

Our story is explained in detail below. Grab a cuppa, have a read and if you agree that Taylor should be able to access deaf education - add your comments.

Your time and assistance is much appreciated.

Our Battle - Accessing Deaf Education

Like other deaf children, Taylor’s neurological condition severely impairs her ability to hear sounds (this is referred to as auditory agnosia). In addition, she has problems processing auditory information and discriminating directed speech from background noise.

Taylor has spent the last three years, enrolled in an Early Education Program at a school for the Deaf. There, she has learnt to communicate using sign language and has slowly regained some of her spoken language. Taylor still communicates principally through sign language (expressively) and relies heavily on sign language to comprehend instructions. Her verbal language abilities (both expressive and receptive) fluctuate day to day, sometimes hour to hour, according to the seizure activity present in her brain.

Taylor’s educational needs:
At the end of this year, Taylor will have completed her early education program and must continue her primary school education elsewhere. Taylor requires an educational environment where she can gain access to sign language and intensive language support, from trained Teachers of the Deaf, in accordance with her linguistic needs. Due to the effects of Landau-Kleffner Syndrome, Taylor is effectively neurologically deaf and needs to be provided with the same consideration and support as a profoundly deaf child to ensure her educational needs are being met.

Our Latest Battle:
Sadly, Taylor may not be able to access deaf educational programs or facilities because her diagnosis is different and does not meet the criteria established for eligibility.

Criteria for entry/eligibility to Deaf Facilities and Deaf Schools.
Access to a deaf facility or school for the deaf , is determined by a clear set of criteria; “a bilateral, sensori-neural hearing loss of 40 decibels or greater”.

Here is a child that clearly needs access to deaf education and because she does not fit the criteria, can not access these programs/schools. She functions very similarly to a child with a profound hearing loss; her education needs are the same as that of a profoundly deaf child. The schools and facilities are there, we have one 7 kms from our house. Yet, Taylor’s application may be denied because she is not the right kind of deaf.

Other options:
Yes, there are other options - but I don't think any come close to being an adequate alternative.

1) Mainstream Primary School, with an integration aid.
Taylor could always go to the local primary school and possibly have access to an integration aid. However, Taylor does not need a babysitter or somebody who will repeat instructions several times. She needs somebody who can sign instructions and facilitate her communication. Finding an integration aid that has adequate Auslan skills, I imagine, would be next to impossible, as most people with good signing skills would probably prefer to work as an interpreter, being paid four times that of an integration aid.

I also imagine that Taylor would have quite a difficult time establishing friendships and communicating with the other children. I would hate for her to be teased and bullied because she can't talk, or sounds funny when she does attempt to speak. In a mainstream primary school, Taylor would be different. She would stand out. She would be a target for bullies.

Furthermore, the average teacher does not have adequate training in dealing with a child like Taylor. Although I am certain that any good teacher would ensure that they adapt and modify their lessons to cater for Taylor - being a teacher myself, I am only too aware of how difficult it is to ensure that every child's individual learning needs are met, every lesson. And given the added complication of restricted communication, it would be a very difficult task indeed for the average teacher to fully cater for Taylor.

2) A Special School
Special schools may be better equipped in dealing with children with limited communication and intellectual impairments but again, can they cater for Taylor's communication needs? Some special schools employ staff that are knowledgeable in Makaton (key word signing), but if Taylor is ever going to establish good communication skills, in Auslan, she needs to have access to a signing rich environment. Her spoken language will always be limited because of the damaged caused by the CSWS, but there is nothing limiting her ability to learn and communicate using Auslan.

Taylor recently underwent a cognitive evaluation and scored in the range that indicates a mild intellectual disability. These tests are useful in establishing a child's current cognitive ability and performance but does not evaluate their learning potential. I believe that any child who experiences a two year period of language deprivation, during such a critical period of development, would obviously perform poorly when being compared to age appropriate peers.

We also have to consider, is it a) Taylor's limited language, causing b) her intellectual impairment or b) intellectual impairment, causing a) limited language ability. I truly believe that it is a) limited language, causing b) intellectual impairment. I also believe that with her increased ability to communicate, her cognitive abilities/understanding will also improve. Why do I believe this? Since gaining seizure control, Taylor has slowly, but surely regained all previously lost abilities. She runs, dances, swims. Her communication continues to improve. I now can not keep up with her, in terms of learning Auslan. She has well and truly surpassed me. Cognitive evaluations, such as the WPPSI, only evaluates current performance and does not indicate learning potential.

In terms of her learning and cognitive abilities, I believe she is delayed, not disabled. Any child, deprived of language and communication for two years would not perform the same way their age appropriate peers would. She can learn, she may learn differently than the average child, but she has a lot of potential. Potential that I don' t believe could be realised in a special school that does not have a full time teacher of the deaf available to her. Therefore, when choosing a school for Taylor, our priority is finding a school that can cater for her communication needs and her learning potential and that leads us back to educational options for deaf children.

3) A School for the Deaf
This option would be ideal for Taylor. An educational environment that allows children to communicate however they feel comfortable - Auslan, spoken English with key word signing and/or spoken English. She would have the opportunity to build some meaningful peer relationships as well as have her educational needs met.

4) A mainstream school with a deaf facility
Also another option. Taylor would be able to mix with deaf and hearing peers as well as have her educational needs met.

Although options 3 & 4 are the obvious options, these are also the options that Taylor does not automatically qualify for because she is not eligible for enrolment.

This system is clearly discriminatory. Taylor has been raised in a signing environment; she clearly would not cope in a regular classroom, where most of the information would be delivered to her auditorily. She needs access to sign language to comprehend instructions and so she can express herself. She would be at an absolute disadvantage in a regular classroom environment.

This system seems to be more about excluding children from the program for children with a disability, rather than assessing a child’s individual educational needs and finding ways and means of supporting a child through their education.

I am a teacher. I have worked in government schools for my entire professional life. I was a supporter and great believer in public education until I had a child with special needs. I am now finding myself utterly disillusioned with an appallingly inadequate system. Unfortunately, this stance was only confirmed when I recently approached a private school with a deaf facility and was informed that if I enrolled my daughter there, she would have her educational needs met (access to a teacher of the deaf, specialist teaching and learning in the deaf facility) regardless of her diagnosis. Sadly, it seems that money talks. Sadly, the average working class family could not afford the fees. Why should my daughter be at a disadvantage because we can not afford the fees to send her to an exclusive private school? Why should we have to fork out that money, when what she needs is available in a government school 7 kilometres from our home? Why should money matter in education? Why should it make a difference?