Tuesday, February 28, 2012

When life gives you the finger.

Feeling so flat today.... and frustrated. So here is my rant.


Bugs has been displaying some really challenging behaviours for some time. I'm not going to go into what they are, but all I can say is they are worrying enough for me to believe that we need some kind of external advice or help. In other words - the way in which we are currently dealing with it is only making the behaviour worse and I have NO clue how to go about the situation. It is upsetting, disturbing and stressful.


So, after feeling close to losing it yesterday I called the Department of Human Services intake - as they have something called BIST - Behavioural Intervention Services Team - in the hope that perhaps we could get someone to listen to our situation and offer advice on how we should be dealing with the issues.
This is the role of BIST. I have never used any service from DHS previously.


On calling today to enquire about it with some sort of hope in my head that someone might be able to help I was informed that the current wait list is .......................... one year.
ONE YEAR!!!!!!!!!!!!!! After telling me that, the expectation and tone in her voice was really one that was urging me not to bother - "we don't have the amount of staff we need YADA YADA". I felt like telling her I didn't give a shit about DHS's problems right now. I have my own problems - WHICH IS WHY I"M CALLING YOU.


So in my head this means that either carers or people with disabilities who urgently need help, who may be at risk, physically and emotionally - who are asking for help basically don't get it.
In one year, my behaviourally up and down child may either be doing really well, or we would probably have a whole new set of issues to deal with.


If in one year my son is still behaving in the same manner - I know right now that the situation we have now will be so much more ingrained, so much more conditioned and so much worse and harder to reverse.


As a carer and a parent - you don't want to have to ask for help. You want the world to think you are coping. Occasionally you even feel like a failure if you pick up the phone and say you aren't coping.
As a carer when you get the response I did this morning it just confirms that you really are alone in this.


I have no idea now what to do. Other than just keep on struggling, try a different way of coping with it in the slight hope that he will somehow stop what he is doing.  Either way when you feel like you can't do it anymore,  when you have no clue how to get through the next day - you just have to.

Sunday, February 26, 2012

Screw Juni - where is Jennifer???

I havent blogged in SUCH a long time.
I think it's just a combination of life being hectic. energy being low and not knowing what to say.
Regardless of that, this morning for some reason I thought of my blog and here I am.


Much has been happening. I've finished a year of a Bachelor of Education. Tomorrow I begin year 2.
I have been loving it. It's put a lot of pressure on me - particularly time pressure but I am so glad I have the opportunity to do it. I know last year towards the end of semester I was constantly fantasising about time to myself to finish homework.


Which brings me to my next topic of course - the kids. Bugs has been doing really well he is becoming more and more interested in watching various YouTube videos. His main interest being Toy Story, Mister Maker and Win Television nightly news clips???. It is quite good because through this he is learning a few more words that he can spell. The other day he brought the IPOD touch over, that he watches them on, and in the search bar he had typed 'Toy Story End' he needed me to help him change 'end' to 'ending'. He can type lots of words now, and often Googles those words - which is exciting. The only downfall is that his growing dictionary in his head is mostly made up of shop and fast food restaurant names. He types: Coles, Woolworths, Target, Officeworks, Red Rooster, McDonalds, Stockland, Kmart, Chicken feed, etc etc etc. Sometimes when he is trying to type a word for the first time he closes his eyes really tight and scrunches up his face. I can see that he is trying to picture in his mind a sign he had seen while out and about and once he can see it he types the name one letter at a time, scrunching his face in between. What I want to know is how can I use his ability to remember and type words to help him communicate. I know it might seem like an obvious question, but I can see these words are not communication - they are objects or places that he is interested in. He can already request places and things with his communication device - but that is where we are stuck. Naming things is not the same as saying how your day was, or what you did, or how you are feeling etc. etc. If anyone has any ideas, I would love to hear them.


Ellie is doing well too. She's just started Ballet, loves going to 'school' (daycare) 2 days a week and is constantly asking me the HARDEST questions. She is definitely a new soul. Everything needs to be asked about, discovered and understood. It's all a mystery.


Well thats me for now. I know it's just a catch up blog, but I'm hoping with that out the way I feel the urge to write more.


J.