Sunday, 27 May 2018

Time for a Funding Update

Cameron April 2018

Time for a funding update I think. A lot has been happening that I haven't spoken about because it's been so overwhelming and emotionally draining.

Australia is in the process of transferring into a new federal funding scheme, for people living with disabilities aged 0-65, called the  NDIS. (National Disability Insurance Scheme) We live in Western Australia and our state was the last state to sign up to this new scheme and in doing so relinquished direct responsibility for funding and service provision to everyone living in our state with disabilities. The uncertainty, distrust and fear that has built up about the NDIS is enormous. You read horrible stories of people becoming suicidal over the cuts and major negative impacts the NDIS has had on their lives and then you read happy stories about how people who have never had funding now have a new lease on life and are able to leave their homes and integrate into their communities.

Our local community does not transition into the NDIS until after July but NDIS has been impacting our lives for several years now. The state trialled the federal (NDIS) and a new state system (WANDIS) side by side, whilst still maintaining their old funding system as well, to see which would be best. Every other day, in all three systems, funding priorities were changed, rules and protocols were changed and what one person said was happening another person said it wasn't. It has been so confusing and the disability community became so divided over which funding system was the best. But ultimately it was the state governments decision and they decided to join the federal system.

As the transition date draws closer and closer my anxiety is growing greater and greater. A couple of months ago Cameron's support funding was reviewed and a new plan put in place, still under the state system. For once I stood up and didn't accept what we were offered, instead I argued our case for what Cameron needed. Cameron needed more funding for support workers to look after his needs and take him out of his home and away from his Mum. He was clearly letting us know that he didn't want to sit around home with me, bored and he didn't want me taking care of his personal needs. Fair enough, he is 22 years old and he needs his independence, as much as it is possible. 

With support from our wonderful LAC (Local Area Co-ordinator - a government employee), who had taken the time to get to know Cameron and our family, we sat down and figured out what Cameron's life should look like at this stage and we put together a plan with his best interests at the centre of it. The process took weeks as our plan was rejected and rewritten and arguments were made, presented and argued against but eventually we came out of the process with a pretty good outcome. 

Cameron received a significant increase in funding and thus support to increase his independence, which means a huge improvement in his quality of life. We now have support workers coming into our home 6 days a week and Cameron is able to spend time with a Host Family once a fortnight to be completely independent from his family. We could have arranged our funding to have support 7 days a week but we have chosen to keep one day support free so I can take Cameron to therapy and to visit some of his grandparents. It's important that he maintains his family contacts and of course visits Lucy and the girls at Dolce Lucia's for morning tea each Tuesday.

We have been able to employ a third support worker which means there is now greater possibility that when one of our support workers is on leave or ill there will be another available to cover shifts. This will make a huge difference to our lives.

When dealing with funding for Cameron's needs we are never allowed to talk about our needs as a family or my needs as the main carer. It is all about Cameron and his needs. This adds enormous stress during the planning and review process because you have to be careful with how you word everything. When doing a review you need to recall every positive that has been achieved through the previous plan but when doing the plan you need to recall every negative that requires support and funding. It's an emotional roller coaster. It's draining and this time it was scary.

I was hearing of families having their funding slashed. Not cut, slashed. I was terrified this was going to happen to us because although we were receiving more than others it wasn't anywhere near enough to meet Cameron's needs because he has such high support needs. He needs constant one on one supervision and he needs assistance with everything in his life. Employing support workers is not cheap and when you have someone with such high needs you need to pay your support workers a decent wage or, fairly so, they will leave and find easier or better paid support roles. Every review/plan I have asked for higher rates of funding so I can pay my staff better. I slowly pushed the hourly rate up and this time we received a much better pay rate. I am much happier with their hourly rate, although for what they do I think they should get more.

You may have noticed I used the word staff. Yep, I am running a small business with 3 employees and I am the unpaid admin and bookkeeper. Hubby is the unpaid payroll clerk. This is serious stuff with superannuation, insurance and tax to deal with. We have shifts and timetables, time sheets and government paperwork to juggle, staff morale and support that needs to be taken care of. On top of that, our staff are in our home, they become an extension of our family unit, it is an intimate work environment. On the positive side there are cups of tea and chats, on the negative side I can't slop around in my pyjamas and have a PJ day, I'm constantly watching the clock and constantly aware of times that people are arriving and leaving. You lose a certain level of privacy and control over your life. You can't stay and have that extra cuppa or pop into that other shop you wanted to visit, you can't head off as early as you want because it's not time for the support worker to arrive yet or Cam and his support worker will be home and you have to be there. You're life is not your own.

Don't misunderstand me, we are eternally grateful for the support we are receiving but the reality is that everything comes at a cost. The reality hit home the day I realized that at my age my parents were free of day to day parenting responsibilities, their children had flown from the nest, their days were theirs to do with as they pleased. I have no end in sight.

It's coming up to the end of May so there is really only one month until NDIS starts to roll out in my community and I am having nightmares and losing sleep with the stress of the unknown. Will we be able to convey Cameron's needs to a complete stranger who will meet a charming young man who will sit politely in a meeting and not interrupt? Will we be able to convince them of the high levels of support that he needs as he smiles sweetly at them and probably hugs them? Will our funding be slashed like some many before us because the person interviewing doesn't perceive our support requests to be reasonable or necessary? (Reasonable or necessary is the catch phrase used when NDIS decide if funding is allocated or not.) Will we be able to keep our three staff and if we have to cut their hours will they stay with us or be forced to look for other work and leave? Will I cope with the added administration and book keeping required of yet another new system? Will Cameron every be able to live independently of us and when will all this uncertainty and fear stop?

I am a naturally positive thinking person, I always see the silver lining in situations but this transition is proving to be a mental challenge as we face the unknown. I'm hoping we will be at the bottom of the transfer list but at the same time the longer it takes the greater the anxiety will become. Mind you, if I never post that transfer permission letter, we will never appear on the list at all.

However, despite all of that I will not give up on my dream of Cameron living independently in his own home in our backyard with round the clock care and a meaningful life. And part of that dream might include the business idea I have come up with for Cameron but that is for another blog post, for another day.

Wednesday, 9 May 2018

Night at the Races 2018

Riding for the Disabled WA 
Night at the Races

For those of you who have followed us for a while, you will know how passionate I am about Riding for the Disabled - horse riding for people with disabilities.
Cameron has been with RDA for 20 years and over those years I have sat on the sidelines, been on Centre committees, been President of two centres, been on the State Council, been on the State Executive Committee in a variety of roles and currently I am the State Grievance Officer and the Co-Organiser of RDAWA's major fundraiser - Night at the Races. (Yes I know, I said I stopped - well it turns out I only took a hiatus - She, who knows who she is, roped me back in)
I know how much Cameron's story and achievements touch peoples hearts because people write to me and tell me, stop me in the street and at appointments and tell me. We are truly thankful for all the positive energy you send Cameron's way and the uplifting comments you leave on this blog. it touches our hearts, lifts us up when we get down and lets us know that we are not doing this alone.
A thought occurred to me this evening - I wonder if all your wonderful combined energy might be able to help RDAWA and our endeavours with Night at the Races.
On Saturday 23rd June at 6.30pm we need to fill the Hyatt Ballroom in Perth, Western Australia, with people who want to have a fun night of sweepstakes, horse races, silent, live and ballot auctions, an inspirational guest speaker, an entertaining MC, yummy food, free drinks and lots of fun and games as we all come together to raise money for RDAWA to continue to change disabled children and adults lives, just the way RDA changed Cameron's life.
We need Sponsors, we need Donations, we need Guests and we need People to help us spread the word and help us promote this truly unique fundraising event on the Perth social calendar.
There is an Event page on Facebook for Night at the Races Gala Dinner and a page on the RDAWA website - (click News and Events) both of those pages can link you to StickyTickets where tickets can be purchased. If you can attend that would be wonderful, if you can tell your family, friends and work colleagues (organize a table) that would be amazing but if that is not possible, that is alright. It would be equally fabulous if you could promote the Night at the Races event page through your Facebook personal page and any other pages or groups you are a member of on Facebook. If you are on other social media platforms and feel comfortable promoting it there to, that would also be wonderful.  RDA is not generally known in the community and we need to change that.
If you, a business or anybody you know might be interested in sponsoring Night at the Races I can forward you a Sponsorship Menu and if you would like to make a donation (financial, voucher or goods of any nature) please let me know.
Night at the Races is at the end of the financial year. Any financial donations are tax deductible and you will enter the New Financial Year knowing that you have contributed to changing some truly deserving people's lives. Any donations over $5000 will be acknowledged with two free tickets to Night at the Races along with other ways to acknowledge the generous donation.
If you attend Night at the Races please stop me as I fly past and say Hi and if you look around the room you will see a few familiar faces - My Head Bookie is My Marvellous Man and My Little Angel is a Night at the Races volunteer - she's not so little anymore but she's still my angel. Cameron you will spot enjoying the evening with one of his Support Workers.
It is handy when you are an organizer. If you would like to sit with Cameron please let me know and we will organize a table of Cameron and his wonderful supporters and friends. (It will be first in first served)  If you organize a table we can put your table next to his.
Thank you for whatever you can do to help us raise awareness of RDA and funds for RDAWA. I know that if Cameron could he would say Thank You straight after he gave you one of his enormous, gorgeous smiles and an equally enormous hug.

Please feel free to share this blog post.

Monday, 23 April 2018

2018 World Meningitis Day

It's that time of the year again - World Meningitis Day
24th April

Cameron 5 1/2 months
PMH ICU fighting for his life
April 1996 

An April has not gone by for the last 22 years without our family stopping to pause and remember the worst day of our lives.

The 2nd April 1996 was the day Cameron developed Pneumococcal Meningitis and all of our lives were changed forever. Cameron fought for his life for 10 days in ICU, then spent 3 months in hospital and even after we moved out of ICU the medical staff didn't expect Cameron to survive. This disease isn't a walk in the park, it's a serious fight for life.

Meningitis is confusing for everyone. There are many different strains and many different signs and symptoms along with different outcomes and after effects. Then there are the vaccinations which cover different strains of Meningitis. People unfortunately think that if they have one vaccination they are safe from Meningitis but the reality is, they have only protected themselves against one strain of Meningitis.

Cameron had Pneumococcal Meningitis but due to media coverage a lot of people are only aware of Meningococcal Meningitis. If diagnosed quickly people can recover from Meningitis but if not people can die within hours. However, having survived this deadly disease you are then faced with potential after effects.

Meningitis can be hard to diagnose. Cameron was misdiagnosed because his symptoms were similar to a crotchety teething baby and then appeared to be a bowel infection. Meningococcal Meningitis often has a rash that appears but not always and once a rash does appear, the race has started to save a life as the body starts to die.

Over the years I have heard many stories of misdiagnosis and of parents following their intuition and repeatedly visiting doctors surgeries and emergency departments until somebody saw what they saw, that their child or family member were dangerously ill. Sometimes by the time diagnosis happened it was too late.

I know this isn't an upbeat or happy blog post but Meningitis is not a happy or upbeat disease. It's grim, it's scary, it's terrifying and it's deadly. If you're lucky enough to survive then you most likely have life changing after effects. You could possibly have learning difficulties, deafness, epilepsy, loss of body parts, severe brain damage, amongst many others.

Cameron was one of the lucky ones, he survived, but the man he was destined to be disappeared that day. A normal childhood was taken away and any future love interests, marriage and children were wiped from history. Grandparents grieved, aunts, uncles, friends and acquaintances grieved but nobody more than us, his parents. Meningitis doesn't just affect the person lying in the bed, it affects everybody in their lives, and everybody grieves the future life lost.

There was no vaccine for Pnuemococcal Meningitis when Cameron was a baby, his fight with Meningitis was unavoidable. I wish history had been different and medical science had been more advanced.

If you only take one thing away from World Meningitis Day this year then please let it be this - don't let a family member die from Meningitis. This is a vaccine preventable disease - please vaccinate.

This World Meningitis Day please help to start the conversation, spread awareness of vaccination and just as importantly awareness of the signs and symptoms of Meningitis. Help us save lives.

To learn the Signs and Symptoms of Meningitis and about the Vaccines available please visit:

Meningitis Centre

To help spread awareness please join the Thunderclap

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.