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.

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.

Rocked

Wine, cooking dinner and music.
As soothing as being rocked as a baby.
All I want to say today.

Time. As usual.

Feeling wide awake. But completely tired.

Morning will come and then I will feel it.

Don't even know what I'm thinking of.

Nothing and everything all at the same time.

Time. As usual. 

Time, memories and people.

I want to go back, but I really just want to go forward.

Only thing to do is lay down, close my eyes and hope it all fades into sleep.

Going down the drain ....

Ellie has a fear of the drain in the bath.
Today after her bath, I tried to show her what happens when you pull the plug out.
As a test for her I put several little people

and a Barbie in the bath while pulling out the plug as our sacrifice.

So thinking I am mother of the year and have all the solutions to her fears Ellie just looks at me and says
"my toe will get stuck, and it will go away, and wont be part of my body any more".
What can I say to that other than, no it wont?
Finally she ends it with "our bath is very scary".

I'm sure as she grows her fears will change to other things that I in my wisdom will try to conquer but really she will probably just conquer and work these things out on her own, all I can do at the meantime is wrap her in a towel and reassure her she still has 10 toes.

Present

Best Christmas present already arrived today when Bugs woke me up, came out to the Christmas tree and pointed to presents. 1st time ever - he knows - he understands.

Merry Christmas everyone - hope you have a wonderful, wonderful day.

Ouch.

Tonight is Bug's school concert. But I am home. Poor Ellie has been sick for a couple of days and has been throwing up all day ..... so....  what do you do when you are torn?

I love going to the school concert, and have been looking forward to it for weeks. Just sitting there with a smile on your face while your child is up on stage doing their thing. Felt so bad tonight I actually cried.

Ellie obviously couldn't go and throw up between acts and she has been clinging to me like I am her life today - just couldn't leave her at home. I'm also admittedly still feeling paranoid as last time she was sick she had a seizure and I really don't want to go through that again.

So now I sit here, feeling like I've missed out on a moment I shouldn't have and I feel so guilty and sad at the same time. What kind of a parent misses out on their child's school concert?

Big Loch and his mum have gone - so at least he will have a cheering squad and Loch is going to video it for me - so I'll have to watch it with the little guy when he gets home.

My heart broke a little when Bugs was told to hop in the car - and he ask me to put my shoes on: "shoes" and pointed to my feet.

Ouch and sigh.