"I think it's something genetic. I'd say you're lucky your second son is ok" she says. I look at the neurologist in horror.
"Genetic? That's not really the sort of thing I want to hear at the moment" I reply, and point at my belly. I explain that despite having had my tubes tied earlier that year, I am about 10 weeks pregnant with our very unplanned third child.
We’re still reeling from the shock of another pregnancy after we have gone to such lengths to ensure we have no more kids – and honestly, I'm still not sure I want to go ahead with this. And now here is a genetic disability to contemplate?
The neuro suggests we have an MRI, a spinal puncture, and various metabolic tests on Beaver to see if we can work out what causes his disability. Then she suggests that I can have a CVS for this baby, and if we find something for Beaver, we can test baby three for the same.
I explain that we've done all those tests on the boy and they showed nothing, We are no closer to understanding what causes Beaver's disability, and the CVS comes back all clear. It also tells us that after two boys, we have now created a girl.
I am slowly recovering from the initial shock of this pregnancy. I was so set in my mind that our family was complete with two kids, that I found it hard to comprehend that we would do the whole baby thing again. Still, we are getting to grips with the idea, and I decided that just because her arrival would be inconvenient is not enough reason to terminate a life. So another baby it will be.
Arrangements are made for a bigger car (Beaver's wheelchair and a pram won't fit in a family sedan), plans are drawn up for an extension to the house, and the midwife is booked for another homebirth – and after an exhausting pregnancy, a beautiful baby girl is born in a relaxed water birth in the kitchen. Despite our initial hesitations in having this baby, we instantly adore her, and settle into a busy yet happy routine as a family of five. We decide to give our little girl (blog name BooBoo) an old English name meaning "strong willed". We like that for a girl, and given the manner of her conception, we reason she must indeed have strong will to be here.
Everyone comments on how beautiful and petite BooBoo is, and how she looks like Beaver – although Possum is quick to point out that her hair is the same colour as his. She is a gentle natured baby, and seems to make our family complete. People comment on her alertness and the strong way in which she lifts her head up. We laugh and say "yes, she doesn’t' have what Beaver has, since he was a very floppy baby.
But then, very gradually, we notice that BooBoo seems more tense than strong. Richard and I quietly start to wonder why she's so placid, and why she's not really rolling over yet. We keep saying we should check the developmental milestones – we gave away all our baby books after I had my tubes tied, and should really buy a new one. Still, we put the niggling doubt to the back of our mind.
Until one day when BooBoo is nearly 6 months, the accumulated doubt solidifies like a hard rock in my stomach. I find it difficult to concentrate. I have looked up developmental milestones on the internet – and she's not achieving them. I have looked up newborn reflexes and baby weight and head circumference, and again, she's underperforming. My mind races over the possible implications as I take Beaver to his therapy at The Spastic Centre. I barely register what the boys are fighting about in the back of the car.
I don’t' know why, but today is the day I need to face this, I just need answers.
I walk up to the therapist and ambush her. "Please, can you be honest with me, does BooBoo have the same as Beaver?"
She turns towards me with tears in her eyes - and there I have my answer, even before she confesses that she had been watching BooBoo and states that "yes, there is certainly cause for concern" I know she add the last line because officially she's not allowed to diagnose, and really, her sentence stops after the word "yes".
I pick up Possum in a daze, and play with him and BooBoo while Beaver gets his therapy. On the way home, I can't hold it any longer, I have to pull the car over. My head buzzes, my face feels like it's on fire, and I cry and cry and cry. This can't be happening, How are we going to cope with this?
Why does BooBoo have to have it too?
The rollercoaster adventures of parenting three kids, two of which have a disability.
Tuesday, 9 April 2013
Diagnosis 2006
From day one, there were some subtle doubts about our son Beaver's diagnosis of cerebral palsy (CP). When he was first diagnosed with Global Developmental Delay (back in October 2002 aged 22 months) we googled the term, and often found it mentioned in the same breath as CP. Yet our paediatrician wasn't sure. Beaver seemed to be able to do some things kids with CP shouldn't, and then managed not to do some things which kids with CP should. Still, about a year later (in July 2003 at age 2 and a half) we did get the CP diagnosis on a piece of paper after more or less begging for a formal confirmation from a specialist doctor at the Physical Disabilities Clinic in Westmead. By then we were desperate for a label, an easy box to tick. As awful as that sounds, that's the way the disability sector in Australia works. No label, no services.
Yet the doctor seemed unsure, and made a point of explaining a CP as a movement disorder caused by some type of brain damage before stating, with a slight yet clearly detectable hesitation, that Beaver would "fit into that category". As he pointed out, only an MRI scan of Beaver's brain could really tell. Now that's quite a procedure with a young child, requiring a general anaesthetic. Since knowing the exact cause and type of his disability would not actually change his therapies, we decided to put it off till later.
With our new CP label, we were now able to access the services of The Spastic Centre (and don't get me started on that name!), the prime disability services provider in NSW for people with CP. We were allocated a speech, occupational and physio therapist, and started hydrotherapy and a radically different therapy program called Conductive Education (CE).
Interestingly, when Beaver was assessed for CE, the conductor (as the educators in the programme are known) seemed unsure about Beaver having CP. Still, we had the letter from Westmead, The Spastic Centre (TSC) had accepted us, and she had no doubt her program would suit Beaver, so off he went. She was quite right. The program suited him so well that in addition to two days in a mainstream preschool, we chose to send Beaver to 2 CE sessions a week and ceased conventional physiotherapy. Beaver blossomed.
At the beginning of this journey, we were told Beaver would probably never walk independently or talk and his intellectual abilities were unknown. Yet after about 4 or 5 months of using a Kaye walker, Beaver took his first independent steps on the very same day his 2 year younger brother Possum first walked (in February 2004, at age 3 years and 3 months) and by the end of that year, started to say his first few words in addition to the sign language we used with him. He now walks and even runs, albeit in a wobbly way, and it’s a cherished moment when he stops chattering for a while.
In mid 2005, we decided to try and gauge Beaver intellectual abilities. A psychologist from TSC tested him (with a Wechsler Preschool and Primary School Scale of Intelligence, third edition, known as WPPSI 3), and unfortunately the results were disappointing. Beaver was found to be behind in all levels, and classified as "borderline to impaired" meaning he had a high chance of having an intellectual disability on top of his physical one. Although the psychologist explained that the test needed to be interpreted with some caution due to his expressive language delays and articulation difficulties, this was another unexpected setback! Nevertheless, we decided to go ahead with sending Beaver to a mainstream school, and found a small school that fitted with our values as a family, and seemed welcoming. The schools' special educator requested that towards the end of the year, Beaver and I come and see her on a weekly basis so that she could get to know him, and make him comfortable with both her and the school.
Towards the end of 2005, Beaver amazed everyone by the rapid progress he was making. While it still took him a long time to master new sounds, once he "had" them, he not only managed to use them widely (beginning, middle and end of words, new and different words) but was even able to self-correct quite easily. This amazed his speech therapist. She had never seen anything like it in a child with CP. As Beaver's speech progressed to near "normal", his cognitive abilities were coming along rapidly and his social skills took a huge leap. His preschool teachers noted increased confidence and abilities, and felt Beaver was learning exponentially. After getting to know him for a few weeks, the special educator at Beaver's chosen school expressed her doubts about him having an intellectual disability. Based on her many years of experience, she felt Beaver had a significant developmental delay, and most likely some learning difficulties, but she felt he did not present with an intellectual disability.
We were getting increasingly confused and started to wonder if we were on the right track. We returned to the specialist at the Physical Disability Clinic in Westmead (who had given us the initial reluctant diagnosis of CP) for our annual check-up, and impressed by Beaver's achievements, he confirmed our doubts around the diagnosis. So in September 2005, we consulted a paediatric neurologist at Westmead. She too seemed to think our boy was unusual, and scheduled a brain scan, a spinal lumbar puncture, a blood, liver and urine test, checking for a raft of things I don’t understand. All of them came back clear. In our follow up meeting with the neurologist, she stated that, as Beaver's MRI showed no brain damage and he did not have a clear pattern of CP symptoms, she herself would not classify him as such; she'd diagnose "a movement disorder of yet unknown cause, most likely due to a chemical imbalance." Yeah right. that's about as clear as mud! Back to square one.
Yet the doctor seemed unsure, and made a point of explaining a CP as a movement disorder caused by some type of brain damage before stating, with a slight yet clearly detectable hesitation, that Beaver would "fit into that category". As he pointed out, only an MRI scan of Beaver's brain could really tell. Now that's quite a procedure with a young child, requiring a general anaesthetic. Since knowing the exact cause and type of his disability would not actually change his therapies, we decided to put it off till later.
With our new CP label, we were now able to access the services of The Spastic Centre (and don't get me started on that name!), the prime disability services provider in NSW for people with CP. We were allocated a speech, occupational and physio therapist, and started hydrotherapy and a radically different therapy program called Conductive Education (CE).
Interestingly, when Beaver was assessed for CE, the conductor (as the educators in the programme are known) seemed unsure about Beaver having CP. Still, we had the letter from Westmead, The Spastic Centre (TSC) had accepted us, and she had no doubt her program would suit Beaver, so off he went. She was quite right. The program suited him so well that in addition to two days in a mainstream preschool, we chose to send Beaver to 2 CE sessions a week and ceased conventional physiotherapy. Beaver blossomed.
At the beginning of this journey, we were told Beaver would probably never walk independently or talk and his intellectual abilities were unknown. Yet after about 4 or 5 months of using a Kaye walker, Beaver took his first independent steps on the very same day his 2 year younger brother Possum first walked (in February 2004, at age 3 years and 3 months) and by the end of that year, started to say his first few words in addition to the sign language we used with him. He now walks and even runs, albeit in a wobbly way, and it’s a cherished moment when he stops chattering for a while.
In mid 2005, we decided to try and gauge Beaver intellectual abilities. A psychologist from TSC tested him (with a Wechsler Preschool and Primary School Scale of Intelligence, third edition, known as WPPSI 3), and unfortunately the results were disappointing. Beaver was found to be behind in all levels, and classified as "borderline to impaired" meaning he had a high chance of having an intellectual disability on top of his physical one. Although the psychologist explained that the test needed to be interpreted with some caution due to his expressive language delays and articulation difficulties, this was another unexpected setback! Nevertheless, we decided to go ahead with sending Beaver to a mainstream school, and found a small school that fitted with our values as a family, and seemed welcoming. The schools' special educator requested that towards the end of the year, Beaver and I come and see her on a weekly basis so that she could get to know him, and make him comfortable with both her and the school.
Towards the end of 2005, Beaver amazed everyone by the rapid progress he was making. While it still took him a long time to master new sounds, once he "had" them, he not only managed to use them widely (beginning, middle and end of words, new and different words) but was even able to self-correct quite easily. This amazed his speech therapist. She had never seen anything like it in a child with CP. As Beaver's speech progressed to near "normal", his cognitive abilities were coming along rapidly and his social skills took a huge leap. His preschool teachers noted increased confidence and abilities, and felt Beaver was learning exponentially. After getting to know him for a few weeks, the special educator at Beaver's chosen school expressed her doubts about him having an intellectual disability. Based on her many years of experience, she felt Beaver had a significant developmental delay, and most likely some learning difficulties, but she felt he did not present with an intellectual disability.
We were getting increasingly confused and started to wonder if we were on the right track. We returned to the specialist at the Physical Disability Clinic in Westmead (who had given us the initial reluctant diagnosis of CP) for our annual check-up, and impressed by Beaver's achievements, he confirmed our doubts around the diagnosis. So in September 2005, we consulted a paediatric neurologist at Westmead. She too seemed to think our boy was unusual, and scheduled a brain scan, a spinal lumbar puncture, a blood, liver and urine test, checking for a raft of things I don’t understand. All of them came back clear. In our follow up meeting with the neurologist, she stated that, as Beaver's MRI showed no brain damage and he did not have a clear pattern of CP symptoms, she herself would not classify him as such; she'd diagnose "a movement disorder of yet unknown cause, most likely due to a chemical imbalance." Yeah right. that's about as clear as mud! Back to square one.
Monday, 8 April 2013
Diagnosis 2004
Diagnosis 2005
Beaver was born full term, after an un-eventful pregnancy. I always wanted a home birth (not unusual in Europe), and since all was well during the pregnancy I was allowed to start the birth at home. Beaver was born in our UK living room, with an apgar score of 9 and 10. He was a bit jaundiced and a slow feeder at first, which picked up soon after an older midwife showed me a good trick (involving a rather gymnastic flick of the nipple) to get "lazy" babies on the breast. At his 6 weeks check up, the doctor commented on what a beautiful baby Beaver was, and how serious he looked. We were blissfully happy (and busy!) with our gorgeous little boy.
As time progressed, we had to admit that Beaver seemed slower than other kids. But then again, we could only really compare Beaver to our friends' baby (half a year older) who we thought was "full on" (he was later diagnosed as having severe ADHD). We figured our little man was just a typical boy, a bit slow, and probably the chilled type, like his parents.
When Beaver was 7 months old, we moved to Australia, and my husband's mum tried to carefully tell us that something was not quite right. We simply did not believe her. Our baby boy was just perfect! Could she not see that? At one point, I "faked" a photograph of Beaver sitting independently to send to my mum in Belgium – who had been talking on the phone with my husband's mum, and was worried too. In the end, we took Beaver to see a paediatrician, just to get the grouchy grannies off our back.
To our dismay and disbelief, the paediatrician seemed to take their side! He told us that Beaver had a developmental delay that warranted further scrutiny. The assessment which tries to capture the developmental age of a child (for those "in the know", it used the Griffiths scale) was horrible. The people were nice enough, but did the test in a rather distant manner in a terribly dark and gloomy place. Beaver spent most of his time crying for mum or dad and was not terribly co-operative, even with those tasks I knew he could achieve. At the end, they delivered us the diagnosis of "global developmental delay" (GDD). Suddenly we no longer had a slightly slow child, but one with a "diagnosis". What did it all mean? What could this be? We went straight home and searched the internet. GDD was often followed by the term Cerebral Palsy, so on our follow up visit to the pediatrician, we asked if Beaver might have CP. The doctors said he didn't think so, as Beaver could so some things that were not normally done by kids with CP. but then, he didn't fit the category of Autism - the other often mentioned with GDD - either.
Our boy was sent to do some physio and OT, and to be assessed again a year later. So, we though all we had to do is some extra work and Beaver would catch up fine! Not so. In the assessment a year later, the same delay was found - the delay had not increased, but neither had Beaver caught up. It slowly dawned on us that this was serious, and that our lives had altered dramatically. We figured we needed to face reality, and joined LifeStart, a wonderful early intervention co-op of parents of kids with disabilities. One day I met another LifeStart mum whose boy had officially been diagnosed with CP. She took one look at Beaver's gait and told me she thought he too had CP. While I didn't like what I heard, when I looked at her boy, there was no denying the similarity. Talk about a shock!
Then the physio decided to take Beaver to the Physical Disability Clinic at Westmead for a Botox assessment. Looking up GDD and Botox on the internet, the term CP kept coming back like a bad dream – Botox is injected into the spastic muscles to temporarily relax them so strengthening work can be done on the surrounding muscle to counter the spastic ones. Sitting in front of the specialist, I could bear the uncertainty no longer, and asked him if he thought Beaver had CP. He hesitated, explained cerebral palsy to us, and then I heard him say that, yes, our gorgeous, perfect son "fitted in that category!"
Even though I was more or less asking for a confirmation I was stunned when it came.
In the report sent to us later, Beaver was classified as having spastic quadriplegic cerebral palsy. Oh no! Surely not? Not the "S" word!?! The very first phsyio that worked with Beaver after his initial assessment had suggested we go and see The Spastic Centre. Our reaction was, "we're not going there, we don't need to go there" – yet now here we were! Of course that physio knew from the moment she saw Beaver, almost a year and a half before we went to Westmead! I still wonder why she never told us. Parents need time to digest the information, and I feel the sooner the better. I know denial is a very powerful strategy, and we certainly excelled at it, but I so wish someone had taken us aside and quietly explained their suspicions early on – we could have done so much more early intervention in that time had someone had the guts to be honest with us.
Beaver was born full term, after an un-eventful pregnancy. I always wanted a home birth (not unusual in Europe), and since all was well during the pregnancy I was allowed to start the birth at home. Beaver was born in our UK living room, with an apgar score of 9 and 10. He was a bit jaundiced and a slow feeder at first, which picked up soon after an older midwife showed me a good trick (involving a rather gymnastic flick of the nipple) to get "lazy" babies on the breast. At his 6 weeks check up, the doctor commented on what a beautiful baby Beaver was, and how serious he looked. We were blissfully happy (and busy!) with our gorgeous little boy.
As time progressed, we had to admit that Beaver seemed slower than other kids. But then again, we could only really compare Beaver to our friends' baby (half a year older) who we thought was "full on" (he was later diagnosed as having severe ADHD). We figured our little man was just a typical boy, a bit slow, and probably the chilled type, like his parents.
When Beaver was 7 months old, we moved to Australia, and my husband's mum tried to carefully tell us that something was not quite right. We simply did not believe her. Our baby boy was just perfect! Could she not see that? At one point, I "faked" a photograph of Beaver sitting independently to send to my mum in Belgium – who had been talking on the phone with my husband's mum, and was worried too. In the end, we took Beaver to see a paediatrician, just to get the grouchy grannies off our back.
To our dismay and disbelief, the paediatrician seemed to take their side! He told us that Beaver had a developmental delay that warranted further scrutiny. The assessment which tries to capture the developmental age of a child (for those "in the know", it used the Griffiths scale) was horrible. The people were nice enough, but did the test in a rather distant manner in a terribly dark and gloomy place. Beaver spent most of his time crying for mum or dad and was not terribly co-operative, even with those tasks I knew he could achieve. At the end, they delivered us the diagnosis of "global developmental delay" (GDD). Suddenly we no longer had a slightly slow child, but one with a "diagnosis". What did it all mean? What could this be? We went straight home and searched the internet. GDD was often followed by the term Cerebral Palsy, so on our follow up visit to the pediatrician, we asked if Beaver might have CP. The doctors said he didn't think so, as Beaver could so some things that were not normally done by kids with CP. but then, he didn't fit the category of Autism - the other often mentioned with GDD - either.
Our boy was sent to do some physio and OT, and to be assessed again a year later. So, we though all we had to do is some extra work and Beaver would catch up fine! Not so. In the assessment a year later, the same delay was found - the delay had not increased, but neither had Beaver caught up. It slowly dawned on us that this was serious, and that our lives had altered dramatically. We figured we needed to face reality, and joined LifeStart, a wonderful early intervention co-op of parents of kids with disabilities. One day I met another LifeStart mum whose boy had officially been diagnosed with CP. She took one look at Beaver's gait and told me she thought he too had CP. While I didn't like what I heard, when I looked at her boy, there was no denying the similarity. Talk about a shock!
Then the physio decided to take Beaver to the Physical Disability Clinic at Westmead for a Botox assessment. Looking up GDD and Botox on the internet, the term CP kept coming back like a bad dream – Botox is injected into the spastic muscles to temporarily relax them so strengthening work can be done on the surrounding muscle to counter the spastic ones. Sitting in front of the specialist, I could bear the uncertainty no longer, and asked him if he thought Beaver had CP. He hesitated, explained cerebral palsy to us, and then I heard him say that, yes, our gorgeous, perfect son "fitted in that category!"
Even though I was more or less asking for a confirmation I was stunned when it came.
In the report sent to us later, Beaver was classified as having spastic quadriplegic cerebral palsy. Oh no! Surely not? Not the "S" word!?! The very first phsyio that worked with Beaver after his initial assessment had suggested we go and see The Spastic Centre. Our reaction was, "we're not going there, we don't need to go there" – yet now here we were! Of course that physio knew from the moment she saw Beaver, almost a year and a half before we went to Westmead! I still wonder why she never told us. Parents need time to digest the information, and I feel the sooner the better. I know denial is a very powerful strategy, and we certainly excelled at it, but I so wish someone had taken us aside and quietly explained their suspicions early on – we could have done so much more early intervention in that time had someone had the guts to be honest with us.
The Diagnosis Journey
We recently had some potential changes to the diagnosis of our oldest.
It may or may not have implications for our youngest.
I shall recap the story so far in the next few posts...
It may or may not have implications for our youngest.
I shall recap the story so far in the next few posts...
Wednesday, 27 March 2013
A bushwalk
My husband went for a bush walk.
It didn't quite go to plan...
At the end of the first day he started slipping on a wet rock. He remembers thinking he was going to make a bit of a fool of himself by falling on his behind. But then his let foot got stuck - maybe the boot caught on something? - and the rest of his body kept going...
Thankfully his team included some experienced bush walkers, some of which are even medics, and they did all the right things to get help and make him as comfortable as possible under the circumstances. After twelve hours of agony - and plenty of drugs supplied by the mountain rescue paramedic - he was winched up into the rescue helicopter.
The rescue created some media - here is the link to the first story:
Followed by this one, which includes a short video:
Once in Royal Hobart Hospital the doctors gave him some horse tranquilizer (yes!) and put his foot, which had now been dislocated for 20 hours, back into place. The ankle was broken in all three bones and needed surgery to fix it up again. After some deliberations he flew back to Sydney to have the surgery done by an ankle specialist. Oh, and we were so happy to have him around the corner so we could visit him! The kids were not too sure about what they were hearing - although BooBoo was getting hopefully of no longer being the only wheelie in the house...
The day before his surgery Richard wrote a letter to the local paper to thank his rescue team, which got turned into a feature piece. Here you can read the whole story from his point of view:
So, yes, my man now has a plate and six screws in his left ankle. He spend two weeks in bed and now has a very sexy boot and hobbles around the house on his crutches. He is now allowed to start putting some gentle pressure on his foot. All in all, his foot looks ok now. The wounds have healed very well - and although the ankle is still very swollen (and will stay so for a while yet) the healing is going well. The surgeon is confident that the ankle will be just fine and my hubby will be bush walking again this time next year.
I'm not so sure his wife will let him though...
Tuesday, 5 March 2013
My response
Dear Steve
Thank you very much for your prompt response regarding BooBoo's school swimming. It allowed me to manage her expectations in advance, which I certainly appreciate.
It wasn't easy to explain your decision to her. As you can imagine, BooBoo was certain she would be able to swim with her friends in the big pool because surely "after mummy explained it to the swimming boss, he would see that is fair". I admit, I thought the same.
There are a number of points that I don't quite understand in your response. However, I will leave them for what they are for now. I can explain them some other time if you like.
My two big issues that remain unanswered are those of inclusion and discrimination.
You write that if you allow BooBoo to join her friends now, "what happens when BooBoo's fellow students move again, what expectation are we setting for her and her future development."
Well, you would be setting the expectation of inclusion. That is exactly what it's all about. I would fully expect her to move on with the rest of the group -because with her floaties on she can. There may well come a point where she can't - and we will cross that bridge when we get there. BooBoo is quite aware of her physical limitation, after all, she lives with them every single day of her life. Managing her expectations is a regular (and often sad) part of my parenting job description.
Your letter states "there is some resilience (...) to integrate higher functioning special needs children" but that you "are however a "mainstream swimming organisation". In plain English, that translates to 'BooBoo is too disabled to be included'. I believe that is discriminatory.
In addition, you point out that the school's "program on that day is at capacity in the 25m pool" and "[t]he addition of BooBoo to this class with another adult in the water will not allow the successful conducting of the class for the other students and (...) cannot happen".
The adult (either the aide or me) only enters the water when BooBoo does - and more so for the ease of your swim teachers so they don't have to worry about BooBoo. I'm quite happy for no additional adult to join her in the pool. But really, the fundamental question here is: what would you do if BooBoo was not disabled? Would you randomly choose some non-disabled kids to go in the paddling pool? I dare say you would find a different solution.
The Disability Discrimination Act of 1992 states quite clearly that it is unlawful to discriminate against someone on the basis of their disability.
The Disability Discrimination Act (DDA) (part 1 point 5) read as follows:
(1)For the purposes of this Act, a person (the discriminator) discriminates against another person (the aggrieved person) on the ground of a disability of the aggrieved person if, because of the disability, the discriminator treats, or proposes to treat, the aggrieved person less favourably than the discriminator would treat a person without the disability in circumstances that are not materially different.
(2)For the purposes of this Act, a person (the discriminator) also discriminates against another person (the aggrieved person) on the ground of a disability of the aggrieved person if:
(a)the discriminator does not make, or proposes not to make, reasonable adjustments for the person; and
(b)the failure to make the reasonable adjustments has, or would have, the effect that the aggrieved person is, because of the disability, treated less favourably than a person without the disability would be treated in circumstances that are not materially different.
(3)For the purposes of this section, circumstances are not materially different because of the fact that, because of the disability, the aggrieved person requires adjustments.
With regards to sports, the DDA states (part 2, division 2, point 28) that "[I]t is unlawful for a person to discriminate against another person on the ground of the other person’s disability by excluding that other person from a sporting activity."
There are, of course, exceptions under the Act, most notably those of "unjustifiable hardship" . With regards to sports, the DDA does clarify that "discrimination only occurs when the disabled person is "reasonably capable of performing the actions reasonably required in relation to the sporting activity"
Furthermore using the terminology of the DDA, letting a little girl swim with floaties is a "reaonable adjustment" and doesn't seem like "unjustifiable hardship". Furthermore, I believe BooBoo is certainly "reasonable capable of performing the action" of swimming in the big pool when using her floaties.
BooBoo's arm floaties can be considered her wheelchair in the water and as such, are "disability aids". The Act defines a disability aid (part 1, point 9.3) as any "equipment that (a) is used by the person; and (b) provides assistance to alleviate the effect of the disability."
Since the floaties alleviate BooBoo's lack of balance due to her Cerebral Palsy, they are indeed a disability aid under the DDA.
All I'm asking, Steven, is that BooBoo be fully included with her classmates in her school swimming program. I'm sure you can understand the importance of belonging. All we are talking about is a little 6 year old girl who wants to have a go with her friends.
The children you teach in your swim classes today are the leaders of tomorrow. Please demonstrate by your actions how not to discriminate. Please show the children how a simple act enables real inclusion.
With the above understanding of the DDA I ask you and Killarney Swim School Pty Ltd to reconsider your decision.
Heike Fabig
(aka BooBoo's mum)
Thank you very much for your prompt response regarding BooBoo's school swimming. It allowed me to manage her expectations in advance, which I certainly appreciate.
It wasn't easy to explain your decision to her. As you can imagine, BooBoo was certain she would be able to swim with her friends in the big pool because surely "after mummy explained it to the swimming boss, he would see that is fair". I admit, I thought the same.
There are a number of points that I don't quite understand in your response. However, I will leave them for what they are for now. I can explain them some other time if you like.
My two big issues that remain unanswered are those of inclusion and discrimination.
You write that if you allow BooBoo to join her friends now, "what happens when BooBoo's fellow students move again, what expectation are we setting for her and her future development."
Well, you would be setting the expectation of inclusion. That is exactly what it's all about. I would fully expect her to move on with the rest of the group -because with her floaties on she can. There may well come a point where she can't - and we will cross that bridge when we get there. BooBoo is quite aware of her physical limitation, after all, she lives with them every single day of her life. Managing her expectations is a regular (and often sad) part of my parenting job description.
Your letter states "there is some resilience (...) to integrate higher functioning special needs children" but that you "are however a "mainstream swimming organisation". In plain English, that translates to 'BooBoo is too disabled to be included'. I believe that is discriminatory.
In addition, you point out that the school's "program on that day is at capacity in the 25m pool" and "[t]he addition of BooBoo to this class with another adult in the water will not allow the successful conducting of the class for the other students and (...) cannot happen".
The adult (either the aide or me) only enters the water when BooBoo does - and more so for the ease of your swim teachers so they don't have to worry about BooBoo. I'm quite happy for no additional adult to join her in the pool. But really, the fundamental question here is: what would you do if BooBoo was not disabled? Would you randomly choose some non-disabled kids to go in the paddling pool? I dare say you would find a different solution.
The Disability Discrimination Act of 1992 states quite clearly that it is unlawful to discriminate against someone on the basis of their disability.
The Disability Discrimination Act (DDA) (part 1 point 5) read as follows:
(1)For the purposes of this Act, a person (the discriminator) discriminates against another person (the aggrieved person) on the ground of a disability of the aggrieved person if, because of the disability, the discriminator treats, or proposes to treat, the aggrieved person less favourably than the discriminator would treat a person without the disability in circumstances that are not materially different.
(2)For the purposes of this Act, a person (the discriminator) also discriminates against another person (the aggrieved person) on the ground of a disability of the aggrieved person if:
(a)the discriminator does not make, or proposes not to make, reasonable adjustments for the person; and
(b)the failure to make the reasonable adjustments has, or would have, the effect that the aggrieved person is, because of the disability, treated less favourably than a person without the disability would be treated in circumstances that are not materially different.
(3)For the purposes of this section, circumstances are not materially different because of the fact that, because of the disability, the aggrieved person requires adjustments.
With regards to sports, the DDA states (part 2, division 2, point 28) that "[I]t is unlawful for a person to discriminate against another person on the ground of the other person’s disability by excluding that other person from a sporting activity."
There are, of course, exceptions under the Act, most notably those of "unjustifiable hardship" . With regards to sports, the DDA does clarify that "discrimination only occurs when the disabled person is "reasonably capable of performing the actions reasonably required in relation to the sporting activity"
Furthermore using the terminology of the DDA, letting a little girl swim with floaties is a "reaonable adjustment" and doesn't seem like "unjustifiable hardship". Furthermore, I believe BooBoo is certainly "reasonable capable of performing the action" of swimming in the big pool when using her floaties.
BooBoo's arm floaties can be considered her wheelchair in the water and as such, are "disability aids". The Act defines a disability aid (part 1, point 9.3) as any "equipment that (a) is used by the person; and (b) provides assistance to alleviate the effect of the disability."
Since the floaties alleviate BooBoo's lack of balance due to her Cerebral Palsy, they are indeed a disability aid under the DDA.
All I'm asking, Steven, is that BooBoo be fully included with her classmates in her school swimming program. I'm sure you can understand the importance of belonging. All we are talking about is a little 6 year old girl who wants to have a go with her friends.
The children you teach in your swim classes today are the leaders of tomorrow. Please demonstrate by your actions how not to discriminate. Please show the children how a simple act enables real inclusion.
With the above understanding of the DDA I ask you and Killarney Swim School Pty Ltd to reconsider your decision.
Heike Fabig
(aka BooBoo's mum)
Sunday, 3 March 2013
Response
This is the response I got from the swim center...
Dear Heike,
Thank you for your letter and I will do my best to answer some of the issues you raise surrounding BooBoo (her blog mame btw guys) and her enrolment within our Schools Program at Killarney Heights Carlile.
I have had a meeting with Michelle, our Schools Coordinator and she has given me some understanding of the communications she has had with the School, BooBoos carer and yourself.
Firstly, Carlile’s philosophy “To swim well is an asset for life” certainly resonates throughout all our centre’s and endeavours to encourage everyone to learn and train in swimming, for its many benefits both physical and mental.
I must emphasise that there is some resilience, in in our regular swimming and schools program, to integrate higher functioning special needs children. We have had many success stories, of which Michelle has been at the forefront of these. We are however a mainstream swimming organisation that recognises the very real issues parents such as yourself deal with everyday. This is also why Carlile supports The Rainbow Club and I might add that I am investigating wether the Rainbow Club has enough participants to utilise our facilities on Sundays as I have made this available for an hour, in an effort to give some of our special needs children that will not progress any further in our regular program, a more convenient location of familiarity.
Secondly, when you mention ‘you don’t expect us to teach BooBoo how to swim’ this is contrary to our philosophy and not the arrangement Michelle had made with the carer on the first day of BooBoo’s enrolment. She was placed in a smaller class with the carer in a safe environment at what we call a Starfish level so she could learn basic floating, locomotion and confidence. To this end Michelle has told me that she has progressed well and given her limitations, could progress to a Goldfish level at some point. This is definitely the correct level for her physical needs; her emotional needs are, I believe, where our expectations are differing.
So finally this situation is unfortunately burdened to the expectations that were set or not set at the beginning of BooBoo’s enrolment into the School’s program.
JC School Program on that day is at capacity in the 25m pool and the arrangement with all schools is the same, that we have equally graded classes (as close as possible) teacher in water if needed and no more than 8 to 10 per class. This is the expectation for the parent’s teachers and students. The addition of BooBoo to this class with another adult in water will not allow the successful conducting of the class for the other students and as it stands cannot happen. Michelle is more concerned, as I am, to what happens when BooBoo’s fellow students move again, what expectation are we setting for her and her future development.
We believe we are supporting BooBoo and wish her to continue her school program journey. Michelle and I have discussed this situation and truly feel that this would not be in BooBoo’s or the schools best interest.
Yours truly,
Stephen (surname whitheld),
(Operations Manager)
My daughter's response: Me no go there anymore.
Dear Heike,
Thank you for your letter and I will do my best to answer some of the issues you raise surrounding BooBoo (her blog mame btw guys) and her enrolment within our Schools Program at Killarney Heights Carlile.
I have had a meeting with Michelle, our Schools Coordinator and she has given me some understanding of the communications she has had with the School, BooBoos carer and yourself.
Firstly, Carlile’s philosophy “To swim well is an asset for life” certainly resonates throughout all our centre’s and endeavours to encourage everyone to learn and train in swimming, for its many benefits both physical and mental.
I must emphasise that there is some resilience, in in our regular swimming and schools program, to integrate higher functioning special needs children. We have had many success stories, of which Michelle has been at the forefront of these. We are however a mainstream swimming organisation that recognises the very real issues parents such as yourself deal with everyday. This is also why Carlile supports The Rainbow Club and I might add that I am investigating wether the Rainbow Club has enough participants to utilise our facilities on Sundays as I have made this available for an hour, in an effort to give some of our special needs children that will not progress any further in our regular program, a more convenient location of familiarity.
Secondly, when you mention ‘you don’t expect us to teach BooBoo how to swim’ this is contrary to our philosophy and not the arrangement Michelle had made with the carer on the first day of BooBoo’s enrolment. She was placed in a smaller class with the carer in a safe environment at what we call a Starfish level so she could learn basic floating, locomotion and confidence. To this end Michelle has told me that she has progressed well and given her limitations, could progress to a Goldfish level at some point. This is definitely the correct level for her physical needs; her emotional needs are, I believe, where our expectations are differing.
So finally this situation is unfortunately burdened to the expectations that were set or not set at the beginning of BooBoo’s enrolment into the School’s program.
JC School Program on that day is at capacity in the 25m pool and the arrangement with all schools is the same, that we have equally graded classes (as close as possible) teacher in water if needed and no more than 8 to 10 per class. This is the expectation for the parent’s teachers and students. The addition of BooBoo to this class with another adult in water will not allow the successful conducting of the class for the other students and as it stands cannot happen. Michelle is more concerned, as I am, to what happens when BooBoo’s fellow students move again, what expectation are we setting for her and her future development.
We believe we are supporting BooBoo and wish her to continue her school program journey. Michelle and I have discussed this situation and truly feel that this would not be in BooBoo’s or the schools best interest.
Yours truly,
Stephen (surname whitheld),
(Operations Manager)
My daughter's response: Me no go there anymore.
Subscribe to:
Posts (Atom)