Tears For Taylor

Taylor wants to meet the PM!

2010-07-20T02:15:00.000-07:00

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?

Update - She's AVERAGE!!!!

2010-01-04T16:17:00.000-08:00

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 IS AVERAGE NOT INTELLECTUALLY DISABLED!
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.

2009-08-15T03:54:00.001-07:00

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?

WE DID IT!!!!!

2009-08-08T14:55:00.000-07:00

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.

XXXXOOOO

Hopeful!

2009-07-07T03:40:00.000-07:00

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.

We need your support!

2009-05-23T21:39:00.000-07:00

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

2009-05-23T19:49:00.000-07:00

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?

Early Education

2009-05-14T03:20:00.000-07:00

Taylor is enrolled in an Early Education Program at a school for the deaf. There she has completed the equivalent of three and four year old kinder and she is currently completing Prep. This has been instrumental in teaching Taylor to communicate again. All of Taylor's lessons are delivered bilingually - both in spoken English and Auslan. Children are encouraged to communicate however they feel most comfortable. She has access to regular one on one sessions of speech therapy, as well as occupational therapy and physiotherapy, as needed.

Taylor is being educated in an environment where the focus is on one's abilities, not their disabilities. And in this environment, she has thrived. She is learning to read and is in the top Maths group in her class. Taylor has an amazing peer group of deaf children, children with whom she is able to communicate. Children who are so amazing and accepting. Children who are her friends.

Communication is the key!

2009-05-14T03:19:00.000-07:00

I fell apart when I found out that my daughter was slowly losing the ability to comprehend speech. How would we ever be able to communicate with her? Much of the literature describes children with LKS becoming 'autistic like' because of the inability to communicate. But I also stumbled across other papers and information that suggested that children with LKS can utilise augmentative communication devices and visual communication tools like PECS, and sometimes sign language - Makaton and Auslan.

One of the first things I did was go out and buy a book of signs and started educating myself about Makaton and Auslan. I learnt a dozen or so signs and started using them when talking with Taylor. We also made up several picture cards, so that she could point to a picture to indicate what she wanted.

She quickly responded to this. Her first sign was 'thank you', quickly followed by 'orange', which she would use when she wanted orange juice.

After Taylor was discharged from hospital, I rang around, trying to find a playgroup for deaf children, thinking that if she could interact with deaf peers, she may be able to learn some more signs and find a peer group that she could communicate with.

Taylor has embraced Auslan as a form of communication. I have lost count of the number of words that she can sign. She is also beginning to form signed sentences and is beginning to show an understanding of the grammatical structure of Auslan. Taylor also needs Auslan to fully comprehend instructions and conversations. Her ability to process auditory information is improving, but patchy at best. Auslan has given our daughter a voice.

Seizures, seizures, seizures

2009-05-14T03:18:00.000-07:00

At first, Taylor was experiencing absence seizures. These manifest as a very short episode (as short as one or two seconds, sometimes lasting up to 10 seconds). She would simply stop and stare off into space. She would then continue on with whatever it was that she had been doing previously, as if nothing had happened. At worst, she would have more than 100 absences a day. I actually tried to count and record her seizures. I stopped when we reached 100 and it was only 4pm in the afternoon. Her seizures would increase in number in the late afternoon and early evening. 100 was a ridiculous and distressing number, I had no interest in continuing the tally.

Taylor's absence seizures continued to get worse and we were soon told that these had developed into Atypical Absences. Atypical absences, are similar to absence seizures except they are longer in duration and can involve loss of muscle tone. In Taylor, an atypical absence would begin with her rapidly blinking her eyes, then her eyes would roll upwards while her eyelids continued to flutter. Her head would then drop backwards and the rest of her body would follow. She would sometimes hit the floor. She would lay there, while her eyes continued to flutter. After 20 - 30 secs, she would come around, looking completely confused and sometimes she would burst into tears.

Taylor has also suffered a few tonic-clonic seizures. These are frightening to watch. Tonic-clonic seizures were once referred to as grand-mal seizures. During a tonic-clonic seizure, the person can experience a period of stiffness and rigidity (this is the tonic phases) followed by rhythmic convulsing, shaking and tremors (this is the clonic phase). The person will be unresponsive, may bite down/clench their teeth and can foam at the mouth. The lips can turn blue/grey in colour. After a tonic-clonic seizure, a postictal period is common: where the person is exhausted, sleepy, confused and may experience muscle weakness.

Children with Landau-Kleffner Syndrome also suffer from a specific type of seizure activity known as CSWS: Continuous Spike Wave during Slow Sleep. This occurs when a person's brain goes into a seizure like state for more than 80% of their sleep time. This is very difficult to control and it also very damaging. It is this type of seizure that robbed Taylor of the ability to comprehend auditory information and left her unable to speak.

Taylor's seizures were so debilitating, that she lost much of her fine motor control and even her gross motor skills were also compromised. She was unable to hold a spoon and feed herself. She had trouble walking across a room. We had to go back to using high chairs, that we could strap her in, so she wouldn't fall out during meal times and we took her everywhere in a pusher - this was much safer than allowing her to walk. If she had a seizure while walking, she would often hit the ground heavily, causing injury or would walk into a wall, during a brief period of unconsciousness. Her face and body was forever bruised, no matter how careful we were.

Taylor's CSWS has caused significant 'damage' to her temporal lobe, causing auditory agnosia (neurological deafness). Since gaining seizure control and clearing her EEG of CSWS, we have seen her improve significantly. She can now understand some auditory information such as single words and some basic sentences. She can recognise a variety of environmental sounds and she is beginning to speak again. However, it appears that the damage is done. She has been left with a severe language impairment.

Although Taylor's receptive and expressive language has been severely impaired, Taylor continues to make huge gains in her communication, using Auslan (Australian Sign Language). Her ability to process visual information, is thankfully intact.

Treatment commences

2009-05-14T03:16:00.000-07:00

After Taylor's diagnosis was confirmed, treatment commenced. Taylor was prescribed anti-convulsant medication. Epilim was the first drug we introduced. The impact this drug had on her behaviour was unbelievable. She went from being a quiet, well-behaved child, to a hyperactive, unsettled terror. These side effects did settle down after a month or so.

A month after her diagnosis was confirmed, she was admitted to the Royal Children's Hospital for an IV course of high dose corticosteriods (Prednisolone). After three days, she was discharged and we continued the high doses of Prednisolone orally. Her dose was as high as 4mg/per kilo/per day, given as a 'pulsed dose', (two large doses, twice a week) to attempt to offset some of the side effects.

Over the following year, may new drugs were introduced at various intervals in a desperate attempt to control her seizures. She was, at one time, taking 7 different types of medication daily. These included: Epilim, Zarontin, Lamictal, Vitamin D, Risperdal, Prednisolone, Frisium.

It was after we increased the Prednisolone to it's highest dose (4mg/kilo/day) and introduced Frisium, that we saw an improvement. Slowly over the next four months, the number of seizures reduced and Taylor began responding to some familiar sounds and words and began babbling again, much like a baby...at the age of 4 and 9 months.

We have since successfully weaning many of her medications and we continue to maintain seizure control with just two medications - Frisium and Epilim.

Taylor - How it all began!

2009-04-27T22:50:00.000-07:00

Taylor was born late on a Friday night, after a long 20 hour labour. She was amazing. My beautiful baby girl. She had a head full of black hair and huge, black eyes. She was so alert and aware, but she was struggling to breathe. Her condition deteriorated over the next several hours and Taylor was admitted to the Special Care Nursery for observation. A paediatrician was called and we were told she was in respiratory distress, most likely caused by an infection in her lungs. I was terrified. An IV was inserted into her tiny arm, administering anti-biotics. Slowly over the next eight days, her breathing improved, her SATS stabilized and on the tenth day, we were able to take her home.
After a rocky start, Taylor thrived. She was a very settled, happy baby. She met all of her early milestones - crawled at 9 months, walked at 13 months, babbled endlessly. She said her first words shortly after her 1st birthday and was speaking in two and three word sentences at two.
She was a dream child, loved her sleep, she was always happy, laughing, a pure joy.
My husband and I decided to add to our family and when Taylor was 2 and 3 months, Lucas, our son was born. We felt so lucky to have two healthy, happy children.
I returned to work when Lucas was five months old and it was shortly after this that Taylor contracted Scarlett Fever at childcare. She suffered very high temperatures, an infected throat, she had a strange rash around her mouth and on her bottom. The doctor was not overly concerned and she was treated with anti-biotics and Panadol. She seemed to recover quickly. I really didn't give it a second thought at the time. It was just like a cold/throat infection. Kids will get sick, I thought. She recovered fairly quickly but it was not long after this that Taylor began to change, very subtly at first. We noticed that Taylor wouldn't respond when I called her name. I thought she was just 'concentrating' on whatever it was that she was doing at the time. 'Selective hearing' I would say.
Then we noticed that her speech wasn't progressing at the rate it had previously. Earlier on, it seemed that she was learning several new words each day. And now, it seemed that she hadn't acquired any new words in a month or two. She had significant trouble learning her new brother's name. No matter how hard she tried, no matter how often we practised, she just couldn't seem to get her tongue around it.
Concerned, I spoke to my maternal health nurse and she suggested that it may well just be a reaction to her new brother and her way of dealing with having to share Mummy and Daddy's attention.
Life was chaotic with a new born and a toddler. I soon discovered that two children were certainly more than twice the work. Alarmingly, Taylor's language continued to regress. She reverted back to using one word commands, was unable to name things that she previously could and seemed to be tongued tied a lot of the time. My maternal health nurse suggested that we see a speech therapist and have her hearing tested.
Taylor's hearing test showed that she had normal hearing. We then met with a speech therapist, who took down a complete history and set up a program for Taylor. We saw the speech therapist fortnightly for a month or two. Still Taylor's language continued to deteriorate. The speech therapist suggested that it might be time to see a Paediatrician, to rule out any underlying medical causes. When I asked "what causes, what do you mean?", she suggested that she had only even seen a child's language regress, like Taylor's, in Autistic children. I fell apart. I really hadn't considered Autism or any other medical causes. I had taught children with Autism. Taylor was so different to the children I knew with Autism. She had good eye contact. Had a good range of appropriate emotional responses. Wasn't overly obsessed with any particular toys are objects. Her routine could change without causing her undue stress. It just didn't seem to fit. But I also had to acknowledge that although I had taught children with Autism, I had never seen it develop in a child. I didn't know if these characteristics came further down the track.
We saw a paediatrician, who, after a thorough examination, said that he believed there was no obvious medical cause to Taylor's language regression. He agreed that Taylor did not seem Autistic, continue with speech therapy and to come back in six months. So that's what we did.
Taylor's language continued to deteriorate. She appeared to not understand us a lot of the time. She could not follow basic instructions like 'point to the doggie'. She reverted back to babbling. She responded to everything by saying "Da fa".
After expressing my concerns and frustrations to my sister in law, she suggested we take Taylor to see a Paediatrician that she worked with. He was apparently an excellent doctor and diagnostician. I went to the GP, got another referral and off we went.
This Paediatrician spent almost an hour talking to me and observing Taylor. We went over Taylor's entire history, her birth, illnesses, daily routines. He sat and played with her for a while. Then he asked "Have you ever noticed Taylor staring off into space? Is it ever difficult to get her attention?".......Yes, I had. Taylor would often stop and stare. I thought she was engrossed in something, day dreaming, staring at the TV etc. The doctor then suggested that he wanted to send Taylor for an EEG. He believed that she was suffering from absence seizures, apparently he had observed a few while interacting with Taylor. He then went on to explain that he had just attended a seminar on a rare form of Epilepsy, called Landau-Kleffner Syndrome. He admitted that Taylor did fit some of the characteristics, but as it was so rare, he felt that this was unlikely; but it couldn't hurt to rule it out.
Naturally, I raced home and googled "Landau-Kleffner Syndrome". The hairs on my arms stood on end as I read; as much of what I read, did in fact, sound like Taylor. But there were also some characteristics that did not correlate - she was well behaved, seemed to sense pain.....some of the puzzle pieces were there, but not all of them.
Over the next month, Taylor had two EEGs, one routine and one ambulatory and the diagnosis was confirmed. Our daughter, did in fact have this ridiculously rare form of Epilepsy.

2009-04-27T04:08:00.001-07:00

This blog is our voice.

A way to reach the world and tell our story.

The story of my precious daughter and her battle with a rare form of Epilepsy, Landau-Kleffner Syndrome.

And the story of me, a complete novice, learning how to blog. Hehehe.