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| Cameron and Rocco 2019 |
It's been a while I know but the writing bug has bitten me so I'm not letting it pass me by.
Hopefully I can remember how Blogger works - it's been a while.
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It's January 2020 and Cameron is 24 years old. I'm still struggling with that fact - he is the same age I was when I got married. His life is so different to mine and at each stage it makes me stop and feel so sad for him and all that he is missing out on. Part of me hopes he doesn't realize or understand how different his life is to his peers and another part of me wants him to be aware and be striving to break out from his trapped mind - I think his reality is a bit of both. These thoughts tug at my heart daily and I still shed tears regularly during private moments.
So what's happened since April 2018? Quite a lot but also a lot of the same.
We've had a lot of trials and changes at the IFN after he was accepted as a research participant. At one stage he was doing 6 treatment sessions a week (I think we even did 9 sessions a week for a while) and a scan each week, so we were starting a new plan every week. Currently he does 4 therapy sessions each week with a scan and a new plan every fortnight. His brain changes significantly with 8 sessions and he keeps proving that his brain is like no other. Report day is often filled with highs and lows and we ponder over his brain scan pictures and future treatment plans. We're not giving up on him.
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| Cameron October 2019 |
Cameron's support funding switched from state to federal funding and he is now funded through the NDIS. (National Disability Insurance Scheme) If you know anything about the NDIS you will know that it is a new Australian initiative that is a blessing for some and a curse for others. Thankfully Cameron's funding was transferred across without any cuts (we were one of the lucky ones) but now there is a growing sense of apprehension for his first review. Many people have had their funding cut significantly at their first review so we will need to go into the process fully prepared to prove our case and fight if necessary. Some people have had to take their fights into the law courts - I am hoping we will not be one of them. But it did not fill me with hope when the NDIS planner, after sitting in a room with us for half an hour, informed us that there are lots of young men just like Cameron who don't get this level of funding, so don't expect the same level of funding next year. I'd love to meet all these young men just like Cameron, they must have been in hiding for the past 24 years.
To lose funding that we have fought so hard to receive would be devastating. We have staff who rely on us for their income and more importantly Cameron now has a level of independence and freedom that would be devastating to lose. So the advocacy for Cameron's right to live 'As Good a Life as Possible' continues.
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| Cameron helping Dad to organize his funding paperwork |
Cameron had an accident in September which was scary. He took the impact of the accident with his face at speed after flying over a fence. He was a bit of a mess but coped very well. It was Cameron's first visit to emergency in 8 years and his first time as an adult which was a tad scary but I am full of praise for the staff who looked after him. His recovery was slow but steady. He was left with some scars to remind him of his adventure and thankfully there was no sign of a seizure.
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| Cameron after the accident September 2019 |
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| Cameron in emergency September 2019 |
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| Cameron the day after the accident September 2019 |
We thought the day after photo was funny but the truth is, he wasn't left unsupervised, the person with him during the accident is his angel and did everything possible to protect him - to her own detriment. We will be forever grateful for her bravery.
As you all know Cameron has been riding horses and then carriage driving since he was two and a half years old. He's always had a healthy respect for horses teeth and hooves but he loves horse riding and carriage driving. It was quite a shock to realize how scared he was. We have had to change riding centres to break any association Cameron had developed and created a new support crew to help him overcome his fear. It's going to be a slow process but we are hoping we can over come his fear and redevelop his love of horse riding and carriage driving.
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| Cameron at HorsePower Australia September 2019 |
What else has happened?
For the first time, this Christmas, Cameron woke up first and totally understood what was happening.
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| Cameron Christmas 2019 |
Cameron had a fabulous time at Night at the Races 2019. He had such a great night and wasn't thrilled to see me the one and only time we crossed paths.
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| Cameron at HorsePower Australia Night at the Races 2019 |
Cameron loves celebrating his birthday and this year he blew out his candles by himself. I actually had to hold him back so we could get a photo before he blew out the candles.
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| Cameron's 24th Birthday October 2019 |
Pav, Cameron's cat, almost died but thankfully she survived and is back to her old fabulous self. Thankfully Cameron left her alone to heal without his help.
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| Pav November 2019 |
On the same day as Cameron's accident we adopted a new dog into our family called Lucy.
(Timing is everything.)
Lucy immediately knew that Cameron was sad and wanted to comfort him.
Cameron still has his dog Rocco. Rocco and Lucy have joined forces as the trouble makers in our household. Their new found friendship is beautiful and entertains Cameron.
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| Lucy comforting Cameron after his accident September 2019 |
For the first time Cameron joined in with Halloween and thought it was great. He did eat a few more of the lollies in the bowl than I realized but he had fun.
There has been so much more and if you follow Cameron's facebook page - This is No Ordinary Kid - you will have kept up with our lives but this is a good snap shot of the past year.
As you can see below My Little Angel is now taller than me and has big plans for 2020 which is exciting and scary all at the same time. My Marvellous Man is still marvellous and me?
Well, I wrote a book but I'll save that for another post.
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| The Danzi's Cameron, Jane, Zoe, Michael September 2019 |
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