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.
Love
Jane