Friday, 28 April 2017

What About Therapy?

Cameron 8 months old with his first Physiotherapist
He was placed in this position and could only hold it for a few seconds before collapsing

We have recently gone through a funding process with Cameron and it's been very confronting and depressing. Amongst all the questions we were asked was one that we were repeatedly asked -
What about therapy?

Cameron no longer accesses mainstream therapy - occupational therapy, physiotherapy or speech therapy. This is being strongly questioned and it is being inferred that we are not doing the right thing by Cameron by not accessing these therapies. This has made me question myself and my parenting decisions, as well as made me incredibly angry and hurt.

Cameron developed Pneumococcal Meningitis at 5 months of age. At that point Cameron was developing normally. He could suck and eat pureed solids. He could sit up with support and stand with support. His grasp was developing nicely, he'd learnt to rip paper and hold toys. He was babbling and laughing and could express his emotions. He was very sociable and liked to watch the world and interact with it in a tactile/sensory way.

When Cameron woke from his coma he had less abilities than a new born, He had no muscle control. He appeared to be unable to see or hear. He could no longer suck. He was limp and the only way he expressed himself was through crying and it was a pained cry. If you have ever been around brain damaged babies you will know, they have a very distinctive cry. His eyes were blank and you would only know he was awake if you saw his eyelids open or heard him cry.

Cameron couldn't suck so he couldn't feed. He was tube fed. My mother stood by Cameron's cot and decided that she was going to reconnect his brains pathways so he could suck. For two hours she pushed and pulled a dummy in and out of Cameron's slack mouth and slowly but surely Cameron's brain started to spark and his muscles remembered their prior learnt behaviour. Cameron learnt to suck again.

Eventually Cameron's eyes started to see and his ears started to hear, those pathways reconnected in his brain. As soon as the doctors were able to remove Cameron from all the equipment which was supporting and monitoring his body the therapists moved in. We had multiple daily visits from the physiotherapists and daily visits from the speech therapists and occupational therapists. We started hydrotherapy and our days were busy with doctors and therapists coming and going from our room all day. For those who don't understand - at that stage a speech therapist is working on developing muscles which will be used for speech, so they are interested in eating and drinking not actually speaking.

When Cameron left hospital the therapy just kept increasing. Very quickly we were doing therapy all day every day. We would go to all the therapy provided by the hospital and government and then we would also pay for private physiotherapy, speech therapy and occupational therapy. We had further therapy that we also did at home ourselves and we researched and found alternative therapies which we hoped might also help Cameron. When government provided services ceased we went out and found private therapists to replace them. This was my full time job, our bank balance disappeared but that didn't matter because we were on a mission to wake up Cameron's brain, reconnect the broken neural pathways and then to help his brain develop normally.

Cameron at RDA Brigadoon finally able to sit up and support his own body weight with support

We purposely sent Cameron to a special education school so he would receive a therapeutic based education. He was then also able to receive therapy at school from physiotherapists, occupational therapists and speech therapists. Throughout school we continued to access any available government therapy outside of school and continued to pay for private therapy and alternative therapies as well.

Cameron at RDA Swan Valley able to sit independently on a horse without support

Whilst all that happened Cameron's epilepsy developed into horrendous seizures which lasted for hours and occurred every 3 to 4 months. It became apparent very early on that these seizures were not harmless and they were damaging this brain. Over the weeks following each seizure we would watch and observe what damage had been done and which neural pathways had been disconnected. It became devastating to see him wake up less capable than he had been the day before, months and years of therapy and achievement gone. It took us years to teach him how to blow out a candle, developing breathe control for speech - gone and only just coming back slowly now 15 years later. Toileting gone - Cameron went from being almost toilet trained to looking at a toilet as if it was a scary monster and being terrified. We are still not back to being that advanced in toilet training 10 years later. At around 5 years of age he had a usable vocabulary of signing words which all went and today he only remembers - eat, drink, toilet and occasionally he recalls - more, help and hot.

Cameron doing therapy at The Institute of Functional Neuroscience

After school had finished and Cameron had transitioned out of the children's hospital and government provided therapy services we made the decision to stop accessing mainstream therapies. This was not a rash decision. At the Institute of Functional Neuroscience we had seen significant changes in Cameron, his epilepsy was under control and we had weaned him off all medications. When we made that decision Cameron had already achieved more development in a few years at the IFN than he had in all the previous 19 years of therapies. The only other therapy which had made such a significant impact for Cameron was Riding for the Disabled.

Today Cameron is still continuing to improve, his epilepsy has not returned and we are starting to see some movement towards toilet training. We've also noticed an increase in attempts to say words. He is developing at an extremely slow rate but it is developmentally appropriate. He is currently around a 2 year old in development.

Because we were repeatedly being asked if we had considered therapy I started to seriously question our decisions about Cameron's therapies.

Had we done the wrong thing going to the Institute of Functional Neuroscience?
Should we return to mainstream therapies?
Had we made the wrong choices?
Are we doing the best thing for Cameron?
Would mainstream therapies at this stage be a wise use of money and time?
Should we be doing both?
Could our family cope with the stresses and demands of mainstream therapies again?
Could we afford more therapy?
Am I just being stubborn and pig headed?
Am I being narrow minded?
Why is this distressing me so much?
Am I going insane?

After some serious discussions with family, friends and professionals; and stressing a lot, I started to understand what was going on.

We have made the decision to use a therapy which is not recognized by the government. We also still use RDA for therapy and it is also not recognized as a therapy by the government. The system doesn't understand our chosen approach but to us it is common sense - we are using therapies which are making a difference. Why spend money and time on therapies which have not made a positive change just so that people can tick a box?

Cameron can not be taught to do something that his brain is not wired to do. It doesn't matter how much speech therapy you give him or how many reward charts you set up for toileting, if his brain has not made the developmental connections to learn and retain that learnt behaviour he just can not do it. That is what the IFN is trying to do, help Cameron's brain to develop normally. He has reconnected all the pathways that had connected before he got sick and now we are in uncharted territory trying to connect pathways that never had the opportunity to connect when they should have.

It is never a bad thing to question your decisions. To step back and take an audit of the situation. However it is extremely distressing when the mainstream system wont acknowledge that something out of the norm is actually working. We experienced this previously when Cameron's brain showed no seizure activity for the first time during a hospital EEG. The hospital didn't ask if we had done anything different or had a discussion as to why this change had happened. To this day the children's hospital does not know that we took Cameron to the IFN and they never questioned the changes. The saddest part of that is that other children have missed out on trying what we discovered.

I don't regret any of the decisions we have made. They have been right for Cameron who is just a little different to the normal and definitely doesn't fit the box. It would just be nice if professionals who haven't even met us could accept that we always put our child's best interests first and have spent a lot of time, money and effort to do everything possible to help him live the best life possible. Instead of trying to make him fit in the box just accept that the box isn't always the right shape.

Thursday, 9 March 2017

Happy 25th Birthday Meningitis Centre Australia

Cameron - Meningitis Centre Australia 25th Anniversary

Last night Cameron joined Meningitis Centre Australia to celebrate their 25th Anniversary.

The Meningitis Centre was formed after a group of parents were invited to meet with Dr Fiona Stanley, at the Telethon Kids Institute, to discuss their experiences of having a child contract meningitis. At the time there was very little awareness of meningitis but people were dying, or surviving with disabilities, from this scary disease that can take a life in only a few hours if not treated quickly. As the parents shared their stories it became apparent that awareness needed to be raised amongst the medical fraternity, and amongst parents, about meningitis and the best people to do that were parents who knew first hand how devastating this disease can be.

We sat in hospital 4 years later and found the Meningitis Centre's very first brochure which became our bible to answer even the simplest of questions, such as - how do your spell meningitis? At this point the centre was very much a support group for families, an information service and advocacy had started to get meningitis vaccinations developed and on to our free Australian vaccination schedule. The driving force behind all of this was Bruce Langoulant who's daughter Ashleigh had contracted Pneumococcal Meningitis 8 years earlier, the same strain of meningitis as Cameron had, and been left with severe disabilities as a result. Their family became our beacon of hope as we sat in hospital with our comatose child not knowing what our future held but instinctively knowing it was never going to be the same again. I could see that life had gone on for them and they had survived, so I was able to convince myself that we would survive too.

When your child is not born with a disability you automatically don't belong to those parent groups. When your child is not the victim of a horrendous accident or incident you don't belong to those groups either. When your child doesn't have a specific label for their disabilities it leaves you not belonging to any groups for support so the Meningitis Centre became our haven during Cameron's childhood because when we met up with other families who had experienced the same life changing trauma as we had we felt understood and comforted. It hadn't all been a crazy, made up dream. Meningitis Centre coffee mornings became a highlight of my calendar.

When you move amongst the meningitis community you quickly realize that everybody has experienced different strains of meningitis. Some people have passed away, some have survived with no apparent after affects - although some after affects appear later in time. Then there are those who have been left with many different and varied disabilities and medical issues according to how their body has reacted to their strain of meningitis. We've met people with growth issues, amputated limbs and other body parts, deafness, blindness, cerebral palsy, autism, behaviour issues, mental health issues, brain damage, loss of speech, learning difficulties, lack of physical abilities and many, many more. Then you have health issues with epilepsy being a big one. Everybody is different but every family shares something in common and that is the trauma of what happened the day their family member became ill. That trauma is never forgotten and is scarring. You hear common threads in everyone's stories whether their stories are 25 years old or 2 years old. Every time you hear somebody else's story your emotions swell because you're hearing your story again.

25 years later, thanks to Bruce and the Meningitis Centre, we have free vaccinations available nationally, in Australia, for Hib Meningitis, Pneumococcal Meningitis, Meningococcal C and a vaccine available for Meningococcal B which you can buy. Plus, just in the last month, Western Australia has shown huge leadership by being the first Australian state to make a free vaccination available for Meningococcal A, C, W and Y, with several other Australian states following their lead.

Who knows how many lives have been saved due to the meningitis vaccines being developed and made available nationally. How many families have been spared the trauma of this terrifying disease, every family is traumatised no matter what the outcome. Or how many families have been spared the on going trauma and cost of lifetime care for a disabled family member. We will never know but we do know that in Australia Hib Meningitis has now disappeared and all vaccinated meningitis strains have dropped.

Not everybody chooses to vaccinate, for varying reasons, but the Meningitis Centre has worked tirelessly to raise awareness of all the strains of meningitis in the hope that families will vaccinate. If they don't vaccinate, for whatever reason, then they will hopefully be aware of the signs and symptoms of meningitis and they will be aware of the need for speed in getting medical assistance. We know many people who got help quickly and their family member has been able to go forward with limited or no after affects and live a productive and happy life. Every minute counts.

The worlds population is now so transient that strains of meningitis previously only seen in certain pockets of the globe are now seen around the world thus the need to expand awareness and vaccination protection globally. The Meningitis Centre didn't stop at only worrying about families in Western Australia or just Australia, they joined with meningitis organisations around the world to form CoMo - Confederation of Meningitis Organisations - to work together globally and assist each other in every ones primary goals, to eradicate meningitis through vaccination and raise awareness of the signs and symptoms. Shared resources and knowledge make a little go a long way and most of theses organizations have been created and run on parent power.

The question was asked last night if the Meningitis Centre was still relevant 25 years later. Considering their success in raising awareness in the general community about meningitis and in supporting the development of vaccines and then successfully lobbying to make them available to all Australians this was a fair question. But an easy one to answer. Yes it is still relevant.

In Australia we still have two vaccines which need to be made available Australia wide on the free vaccination schedule, there is still much lobbying to be done. We have doctors questioning parents decisions to vaccinate against diseases not on the vaccination schedule so therefore greater meningitis awareness needs to be increased within the medical community.  No parent should vaccinate their child without considered thought but we are hearing repeated reports of some disturbing discussions happening in doctors surgeries. I, myself, have had a few.

Then there is the need for awareness of the signs and symptoms. As each generation of parents comes along they need the information the previous generations before have benefited from. There will always be people who chose not to vaccinate and those who can not be vaccinated for various reasons and even though we strive for herd immunity, with vaccinations, there will eventually be outbreaks of diseases such as we have seen with whooping cough in recent years. Add those factors to our transient world population moving diseases around the globe and you can never be nonchalant. The cost to our future children is too high.

There is also the need for support for affected families and meningitis sufferers. Where else are you going to find the understanding and comfort needed than with those who have walked in your shoes. So yes, the Meningitis Centre is still very relevant and will be well into the future.

So in this, the Meningitis Centres 25th year, I would like to raise a glass to Bruce Langoulant and all the professionals, parents and families who have worked alongside him over the last 25 years to save our children. Bruce didn't set out to only save children from contracting Pneumococcal Meningitis, which affected his family so devastatingly, he set out to save everybody, everywhere from ever encountering the devastation of Meningitis. Thank you Bruce for never giving up the fight, 25 years is a very long time and it's been a long road. You truly can lay down your head each night in the knowledge that you have made a difference and your legacy will live on forever. Parents across Australia tuck their children into bed each night blissfully unaware of how lucky they are that you have made a difference. The vaccines were too late for Ashleigh and Cameron but knowing that others are not living our lives makes it just that little bit easier to live with.

Happy Birthday Meningitis Centre Australia and all our friends in the Meningitis Community.


Wednesday, 1 February 2017

My Life Has Shrunk

I wrote this blog post two and a half years ago. I was going to update this post but decided it is a capsule of my life at the time so I've left it in it's original state. A few details about my day to day life have changed since I wrote this post but the reality I was sharing is just as true today.


It's not been a good week starting with the drug debacle My Nightmare Came True  and ending with my realisation of how little time I've got to myself now.

When your children start school you feel so lost without them, how on earth will you survive 30 hours every week without them. Then fairly quickly you realise how precious those 30 hours are especially if you are the only one at home. Some people head back to work, others to study, some to voluntary work and then others are super parents making sure the pantry is stocked, the house spotless and everything in control for when the silence is shattered when the school siren rings in the afternoon. Some Super Super parents balance some and all of the above. But regardless of what you do you realise the joy of those 30 hours every week that you can control.

I did most of the above, I've worked, volunteered, kept house and on occasion slept to maintain my sanity. When My Little Angel came along one of the realisations I had to come to term with was that my me time was gone again for another 5 years until she too started school. Not that I minded.

I don't say any of that because I see children as a burden or nuisance, I say it because children are the most wonderful and exhausting journey anyone can ever join and having some time out is essential to survival. Then you add the joy of a special needs child and you really, really need some time out because it is especially exhausting. One friend always said my one child was equivalent to six.

I'm not talking about time out for spas and massages, I'm talking about time that is under your control whether you are working or sleeping, you have made the decision about what you are doing and it is under your control because you can.

Then your children grow up and leave school and your day to day responsibilities of parenting change to less hands on and more mental worry. Unless of course you have a child with special needs. There's no rest for you because your child still needs hands on daily care, you can't start to take a breath and prepare for the empty nest syndrome. There's no - Well now I've grown my family and now it's time for me - Oh no.

Instead, for most of us with special needs children, we either work to pay carers so we can stay in the work force or the child free hours we have control over drop dramatically and there is nothing we can do about it, it's a government decision.

It's ironic really because as the years pass by and you become more and more tired from the constant hands on care that exhausts most parents in those early years we face less time to recuperate and recharge but continue to provide the same level of care to a person bigger and harder to care for.

Instead of 30 hours a week I now get 16 1/2 hours a week to myself and that isn't a lot especially if carers are late to pick up or early to drop off.

This really came home to me this last week when a carer was half an hour late to pick up causing me to miss an appointment. I realised I have little control over my life now and no future date when I will have my own life to control again. I'm at the mercy of other people and have to fit around others schedules and decisions for me.

Of course like everyone else in my position I am making the best of it and getting house work done while Cameron isn't home and anything that is away from home is restricted to four hours on three days. I'm lucky, some people don't even get as much as I have and I feel bad for feeling sad and cheated. But it's pretty sad when you look back and say - My child's school years were the best years of my life.

Monday, 30 January 2017

Two and a Half Years Later

Our family October 2016

It has been 2 and a half years since I last wrote and published a blog post. So much has happened in that time and I couldn't bring myself to blog because this was my happy place and life wasn't feeling too happy. But life is starting to finally change and it's time to re connect with things that make me happy and writing is one of those things.

So for those who weren't able to follow along on Facebook for the last two and half years here is a brief catch up on life:

Cameron was 18 1/2 years old when I last published and he is now 21 1/2 years old.

My Little Angel is now 13 years old and about to start her second year at high school. She is still an angel although at times a very lovable, moody, teenage angel

My Marvellous Man is still marvellous.

Cameron still has his cat Pav but he also now has a dog called Rocco who is a black Labrador/Retriever. More about how alike Cameron and Rocco are in future posts - they must have been separated at birth in a previous life.

We moved again. I know some of our friends are rolling their eyes as they read that statement, they're sick of moving our furniture although they are very good at it after so much practise. We moved a year ago to a country town an hour out of the city so we can still see our families and city friends, access therapy and MMM could continue working with his employer. This move also brought us to within half an hour of some of our most important support team members - friends who've been friends forever and feel more like family. 

We own a home again and it has space so we are no longer living on top of each other, although Cameron spends most of his time within one square metre of me. The house has a huge backyard and our ultimate goal is to build a second dwelling out the back for Cameron to live in independently with support workers and hopefully a housemate.

We are no longer at the mercy of a Support Worker Service Provider when it comes to Cameron's government funding. We took control and now self manage our funding. What this means in a few weeks when we transition to the Western Australian National Disability Insurance Scheme (WANDIS)  is a bit of an unknown but we have no plans to let other people control our lives again like it was back in 2014. We have two fabulous support workers whom Cameron adores and so do we. There will be lots more about funding and supporter workers in the coming months, I am sure.

Cameron still goes to Riding for the Disabled (RDA) but he now goes to RDA Murray Mandurah, which is nice and close to home. Last year he was Carriage Driving, which he loves because they go fast. MLA is now a volunteer for RDA which has been a life goal for her. So far I have dodged all the requests and broad hints to get involved at the centre.

Cameron still attends The Institute for Functional Neuroscience. His support worker takes him and I just go in for meetings. It was unusual at first not going to therapy with Cameron and trusting someone else but it was time. He needed his independence from me. He goes into all his appointments and assessments independently and his support worker waits in reception.

I'm sure you are wondering where Cameron is at in his development. Well, to honest he is still a toddler, just a very big and very strong toddler. Still non verbal and still not toilet trained. However he has developed. His fine motor skills and automatic responses are good. His comprehension of situations is amazing at times and there has been absolutely no seizure activity.

He still growls and grumbles at me.
He still follows me around and invades my personal space at the most intimate and inappropriate times.
He still wets his bed and clothes on an almost daily basis.
He still wanders and gets into trouble a lot. Right now he has just tried to do a runner out the front door when my back was turned and is now down at the TV growling and grumbling because he got in trouble.
He still loves his iPad and is onto his second one.
He still chats away to me in Cameron language that only he understands.
He still eats everything and anything and has to be stopped from over eating.
He still loves everyone and never forgets a face.
He still loves Playschool and the Wiggles but we no longer put on DVD's or allow him to binge watch either show. He really likes Emma Wiggle.
He loves to get hold of the TV remote and if you show even the slightest interest in a show he will change the channel.
He really likes watching TV Shopping channels. I suspect he thinks they are talking to him.
He still loves going out and watching the world and meeting people.
He still knocks on doors when he shouldn't.
He still loves CARS and he still doesn't have a drivers licence, as I remind him every time he tries to sit in the drivers seat.
He still loves music.
He still tries to hug and inappropriately touch total strangers.
He still loves blondes.
He still curls up and has a snuggle with me.
He still gives the best hugs.
He still has the biggest smile.
He is still VERY LOUD.
He still has the loudest, most infectious laugh.
He still has a wicked sense of humour.
He still makes us laugh.
He still gets us involved in the most ridiculous situations. All you can do is laugh.
He still shares his love with the world.

Cameron is doing really well for Cameron. Of course we wish he was further along in his development but he is developing.

So there you have it, that is where we are at. Life is still crazy and chaotic and I suspect that will never change. We're still exhausted and I can't see that changing for the foreseeable future. We still laugh and cry and work our way through life's challenges in the best way that we know how at the time. Not much has changed really.

It's been so nice putting finger tips to keyboard. I feel a little bit like my old self again. So much so that I gave the blog a face lift and impressed myself with the realisation that I could still navigate myself around Blogger - it can be a challenge sometimes. So here's to many more blog posts and maybe that book I've been wanting to write.

Read you all soon.