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.

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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.
Love
Jane



Thursday, 26 June 2014

My Nightmare Came True

Cameron 18 years old

I've been quiet for a week because I was in shock and trying to process what happened. Why??? Well ....

Last week Cameron left our house with a person we had been asked to trust and we believed we could trust. When Cameron arrived home his clothes stunk and I immediately questioned what this odd smell was. It was overpowering and I had to change all his clothes immediately.

I admit I have lived a sheltered life, yes I drink wine but didn't try alcohol until I was in my twenty's and I've never smoked and have never taken drugs either.

I know what cigarettes smell like and what cigars and pipes smell like and this smell was nothing like them. It was different and my mind kept searching for an explanation.

Finally after discussions with several people I realized that Cameron had been in an environment where people had been smoking marijuana. Even as I typed that my brain went numb. How did this happen? This can't be true.

We don't know if the person he was with was using or took Cameron into an environment where others were using. We don't know if they offered Cameron an opportunity to try it too or if they forced him to try it. Cameron is so young of mind, he would have had no idea that where he was was wrong or that what was happening was wrong. He wouldn't have known what to do or how to remove himself from the situation. He would have stood there like an innocent child.

Meanwhile we know he breathed in the smoke and was potentially put at risk as the person he was with drove him home.

My biggest fear of letting Cameron out into the big wide world without us is that he can not speak and tell us what he has been doing. He can't tell us if someone does something to him or that he felt uncomfortable or something was wrong. He can't protect himself by himself and can't remove himself from dangerous or scary situations. He is mentally a toddler and toddlers need protection and others to care for them and speak for them.

The person Cameron was with took advantage of the fact Cameron couldn't come home and tell us what he had done that day or where he went. He took advantage of the fact he couldn't tell us what the other people were doing or what the person he was with did. He used the fact Cameron couldn't speak to take advantage of the situation and completely abused his position of trust.

This situation has been my biggest nightmare and now it has happened and it's shaken me up. I want Cameron to go out into the world but I want him to be safe and I want the people who are with him to care as much about him as us. That may seem an unrealistic desire but I don't think so.

We've been criticised for years for not putting Cameron into respite care or paying strangers to care for him and this very situation is why we didn't. Cameron has no voice and we feared people would take advantage of that and clearly our fear was not unfounded.

It is awful that Cameron was exposed to drugs but I can get over that, what I can't get over is that Cameron's lack of communication was taken advantage of so the person he was with could do something that was wrong and potentially dangerous.

I hasten to add that this person was not a family member or friend, thank goodness because if that happened I don't think I could ever trust again.

Friday, 20 June 2014

I Fake Called Cameron and it Worked

Cameron 18 yrs old and Me (Quite a bit older than him)

The other day Cameron was being rather difficult about getting ready to go out with his carer. He'd resorted to sitting on a chair in his bedroom and was refusing to move or get dressed. It didn't matter how I pleaded or demanded, Cameron just wasn't moving.

What was I going to do, time was ticking away and I needed him ready when his carer arrived. Then I remembered a trick which has worked rather successfully on his sister a few times in the past.

I fake called his carer.

"Cam, do you want to go out today with .......?"

Head shake no.

"Are you sure?"

Head shake no with a look on his face that said - try and move me.

"Alright then I will ring her and tell her that you aren't going today."

Cam just sat there and stared me out.

I left and returned with my phone pretending to look up a contact and dial it.

"Hello ....... this is Jane, Cameron's Mum. Hi. Cameron doesn't want to go out today with you. He won't get dressed because he doesn't want to go"

Listening to silent phone while Cameron watches me.

"You're ten minutes away? Okay, well I'll tell him. See you soon."

Close phone.

"....... says she is almost here and you better hurry up because she needs you dressed when she gets here and you're to stop being silly."

Turn around and walk out of room to put phone away.

Walk back into room to find Cameron walking towards his clothes whilst taking off his top with a rather worried look on his face.

I was grinning on the inside whilst being very matter of fact about getting Cameron ready because he only had ten minutes.

I could not believe that the fake phone call had worked. Cameron totally understood the scenario I had played out for him and had taken it very seriously.

I have to admit I am very lucky that Cameron couldn't walk out and ask his carer about the phone call and therefore couldn't catch me out in my little white lie. I was lucky.

Then this morning I had another little struggle with Cameron again whilst getting ready for his carer but this time over brushing his teeth. He was standing at the front door waiting for his carer and wearing a huge grin whilst refusing to go to the bathroom.

"Cameron do you want me to call ...... because I will and I will tell her that you can't go with her today because you won't brush your teeth."

Suddenly a look of concern crossed his face and he begrudgingly walked slowly towards the bathroom. I wont lie and say the teeth brushing experience was wonderful because it wasn't. It was the usual tussle and argument which I am sick of but at least I did my best to get his teeth clean and he did as I asked so I see that as a Win Win.

Even though this seems like a little story about getting dressed and brushing teeth it is much more important than that. Cameron understood a very abstract concept and reacted accordingly and I think that is amazing and a reason to be very, very happy.



Thursday, 19 June 2014

Toileting - 18 Year Old Style

 
Cameron 18yrs old

The quest for Cameron to become an independent toileter continues. It is painstaking and tiring, frustrating and infuriating. And sometimes it's just plain funny but not very often anymore.

From time to time Cameron has a dry bed and there is much celebration on my part because I don't have linen to wash that day. Then you also have days where you have two or more sets of linen to wash in the morning because it's been an unsettled wet night. My eyes just roll when I get out of bed on those mornings. It's so frustrating.

Cameron goes through phases where he will take himself to the toilet and he does actually go to the toilet. However we still have wet pull ups so he isn't doing it instead, it's just as well.

We have very little success in taking Cameron to the toilet. 99.9% of the time he will not do anything. He just gets frustrated and so do we so we generally don't push the issue.

Lately he has been having a morning wee in the shower and I figure this is fine. It's all going down the drain and he knows he's doing it so that has to be a positive thing. Sometimes he will tell you he needs to go to the toilet after waking up and takes himself off successfully which is always exciting.

The other thing he has been doing I think is a positive sign. You know how toddlers will wait till you put a fresh nappy or pull up on them and then do a poo or a wee? Well Cameron has been doing this a lot lately so I think this is developmentally appropriate. But that's not all.

He has also developed a habit of standing on the front door mat watching the traffic go by and going to the toilet. Toddlers will often have a favourite place to go to the toilet so again I think this is a good sign that this is developmentally appropriate.

However it is all rather frustrating in the mornings. I get Cameron all ready for his carers so we are ready five to ten minutes before they are due. He then stands at the front door waiting for them and guess what? I am then madly cleaning him up and changing him with seconds to go. We often watch his carer arrive as I am grabbing wet wipes and then I am yelling out to give us a minute.

I've tried waiting to dress him till the last minute but he still manages to catch me out even if he only has to wait for a minute or two. Friday I thought I'd timed it all perfectly but no, the carer arrived early and he wasn't ready. I can't win.

Having a non toilet trained 18 year old is horrible. The messy clean ups are horrendous and the constant accidents and wet clothes and wet linen are tiring. But I can see progress so maybe one day we will get there. I just wish one day would hurry up and get here a little faster.

Wednesday, 18 June 2014

Where's Cam? Yelling at People Over the Fence.

 
Cameron 18yrs old

Cameron really doesn't have much chance to be independent so when he wants to go outside and look over the fence, I let him.

He used to stand outside at our old house and look over the fence and there he had a view of the school oval so he watched people jogging and people walking dogs after school. He would have loved it this year now that he isn't at school because he could have watched school sports carnivals and sports lessons.

Recently some friends arrived and when they did the obvious question was asked - Where's Cameron? Oh, he's outside yelling at people, I said casually. Oh my goodness, he's yelling at people!!!

Yep, there he was standing at the fence yelling something that was incomprehensible to passers by. I can't imagine what people were thinking and considering some of the people who live around here, I'm surprised we didn't hear people yelling back at him.

He was quickly enticed inside because we had visitors he loved but today he decided he was going outside and I had a mini panic. What if he started yelling again? The lovely old lady was outside across the road, would she be offended?

Thankfully he was quiet today and just watched the world go by for about half an hour. But you can see in his eye a wistful look of longing to be out there in the big wide world himself and that makes me feel sad for him.


Cameron 18 yrs old

Tuesday, 17 June 2014

Just How Many Pairs of Jeans Does One Person Need???

 
Jeans

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This post is not an advertisement and has not been paid for.
I just like to tell people when I think a  product or service is good.

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Recently I took Cameron shopping for Jeans. He very inconsiderately grew out of about 4 pairs of last years jeans and now that we don't have school uniforms we need more casual clothes.

We walked into our favourite men's wear shop - Ed Harry at Southlands Shopping Centre and told our favourite shop assistant, who's name I think is Hannah - that I needed 4 pairs of jeans for Cameron. She is like the angel of shop assistants and has been dressing Cameron for the last few years. She guided us through the transition from children's clothes sizes to men's and also guided us into what was appropriate and fashionable for Cameron to be wearing. Cam's been looking pretty cool ever since we met her.

We started searching around the shop discussing what the other guys his age are wearing and what will look good on him. We eventually walked into the change rooms with an arm load of jeans.

Thankfully nobody else was in the change rooms and I was able to put Cameron into the end room where I could keep the door open and let him walk out to look in the mirror at the end of the passage. The change rooms are way too pokey for two adults.

I started undressing Cameron and he started growling. I'd stand up and undo his button and zip and then squat down as I pulled his jeans down and wrangled them off his feet with him grabbing onto whatever he could find to keep his balance. Cam kept growling. Jeans fitted and jeans didn't fit and the jeans kept coming until at one point I was completely confused as to what fitted and what didn't. But Cam kept growling.

I started to get really hot and then the sweat started. I was getting quite a work out trying well over 20 pairs of jeans on Cameron. And Cameron didn't appreciate one single drip of my sweat, he was just mad that I kept putting jeans on him and taking them off him.

We eventually ended up with 6 pairs of jeans that fitted and I was so exhausted that we bought them all. I wasn't going through all that to leave something that fitted in the shop.

Cameron happily escaped the change room and proceeded to check out the service desk and try and use the computer while Hannah and I sorted out my mess.

As I stood there ready to pay Cameron's growls were still ringing in my ears and then the thought occurred to me that nobody else had come into the change room while we had been in there and we'd been in there a long time. I quickly apologized realizing that we possibly put customers off with our racket. That is when Hannah said the sweetest words I'd heard in a while.

"You didn't but if any customers had said anything they would be customers I wouldn't have wanted anyway."

My heart melted, how often do we as special needs parents receive such support from people in the retail world. I wanted to cry.

Over the last few years Cameron has really challenged us as we have bought him clothes at Ed Harry and Hannah has always looked after us with a smile on her face and wonderful support. She is one of our favourite shop assistants.

You would think 6 pairs of jeans was a little excessive but I am so glad I bought them all because Cameron being Cameron has actually wet his way through most of them in a day, a couple of times now. We always need to be prepared as the Girl Guides say.

The morning after our shopping exhibition I woke up and as soon as I moved my legs I felt pain shooting through my thigh muscles. I lay there for a second wondering why I was in so much pain and then it came to,. I'd done squats for 45 minutes the day before and now my muscles were complaining - loudly. Ouch.