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.
Saturday, May 23, 2009
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?
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?
Thursday, May 14, 2009
Early Education
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.
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!
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.
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
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.
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
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.
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.
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