Monday, 28 October 2013


Are you the type of person who is true to your word?

When you say you will do something, do you do it? Always?

What would you do if you had promised someone you would do something, and then found yourself unable to follow through on your promise? Would you contact them and explain? Maybe even apologise?

This is what I would hope to do, despite the embarrassment and the obvious disappointment I will cause, simply because the disappointment of being let down with no explanation, is much worse, and I would not want to be responsible for making the choice to have someone feel worse than they need to.
What happens if you work for an organisation which represents themselves publicly as being the provider of a specific service at a particular level of service or who would provide that service in a particular manner to a particular group of people? Are you committed to uphold that statement of service just because you work for them? What if you couldn't with the resources made available to you? Would you still work for them? Would you strive to achieve that level anyway whilst banging your head against a brick wall? Might you suggest to your bosses the Mission Statement is actually NOT achievable from the perspective of resources and ability to consistently provide that service?

What if you were called out on that Mission Statement by a customer? Would you simply ignore its existence? Would you explain it was out of date? What would you do?

To avoid this looking like a simple rant, I will supply you with some facts.

My 11 year old LJ, has Down syndrome (DS). To most people that means he will look different, he has an intellectual delay, he may have some physical limitations.

The reality is this. Since LJ could roll, he has absconded, not unusual for a child with DS. He very rarely runs away these days or leaves an area that he is supposed to stay within, but he is now 11 and has learnt to climb! On tables, up paling fences, ladders, up poles, trees etc etc.

I know, you are all saying "Sounds like a typical 11 year old boy to me." Me too, except for the addition of the intellectual delay, Hypotonia, Hyperextension, receptive language delay,  expressive language delay, lack of understanding of stranger danger, lack of proper social skills and a long list of other smaller issues, which, added up mean, he needs supervision 24 hours 7 days a week.
In the past, when I had the choice as to the properties we rented, I would always look for a few basics in security. Front and back screen doors must key lock, no access to under house, 6 foot fences (preferably Colourbond).  Any gates require padlocks, if there was a garage the internal access door needed a key lock. Windows must not have broken fly screens, and must be able to be key locked. And that, mostly, covers the aspect of him absconding. Also, no double storey properties and one with a back yard so he can have some free reign.

As for other things like sharp knives etc, the usual stuff with little children, I need to be on the ball keeping those in safe places.  "Up High" no longer cuts it as he just drags a chair over and accesses whatever he likes.

And at this point, let me remind you LJ is 11 years old, not so typical anymore hey?

Couple the need for such supervision and application of the many therapies, with the role of a single parent of two children, it actually seems amazing we have clean clothes, a clean house, any food in the house or even cooked meals. I have no extended family nor any other network of support.

After 8 years as a single parent with no other support, I have recently secured some respite support, however, it does not extend to assistance with any day to day support for Luke. I tend to use the respite so we can attend social functions as a family or to attend to my other child's needs outside of the home.

Unfortunately, it was a direct result of the breakdown of my marriage that found me and my children back in the rental market for accommodation. While I was self employed, I had some control over the houses we rented, but since we moved just under 2 years ago and I was unable to reestablish my business, I have relied on welfare and a few hours a week part time I have managed to find.

As a result of our unstable financial situation and my ever increasing Depression, I needed to seek assistance to find a rental property via a Community Housing Organisation (Whose name I have changed here to CH), who, promise the following:

Our Mission
Creating quality community housing for people in need through proactive management , matching housing solution with need, creative partnerships and listening to our community.

CH was established in 1983 to prevent homelessness through the provision of community housing. We offer support to our tenants on housing issues, and always strive to listen and learn from our tenants and the local community in order to provide the best possible housing services we can. We are overseen by Board of Directors that is made up of skilled members of our local community.

Registered as a Public Benevolent Institution gifts and donations to CH are tax deductible.

Main Aims
To address homelessness through provision of housing
To promote consideration and understanding of issues affecting housing and the implementation of housing and related programs appropriate to local needs
To contribute to the process of policy development and change amongst relevant Government agencies and other authorities in relation to housing.

Services at a Glance
Long term Community Housing
Temporary Accommodation in Partnership with Housing NSW
Boarding House Accommodation
Housing for People with a Mental Illness
Youth Housing
Aboriginal Housing
Refugee Housing
Other special purpose partnership projects.

NB: One of the "Other special purpose partnership projects" they speak of is around people with Disabilities.

This organisation was thoughtfully and purposefully formed to service specific areas of our communities, those being, the marginalised.

People living with Mental Health diagnosis, Disability, Homelessness, Illiteracy, Physical Health constraints, and many other difficulties that usually mean they need support and advocacy simply to achieve a very basic level of existence in any community.

And yet .... the very agencies which were formed to serve these people, deny them that service because of their inabilities, not in support of them!

If you can't complete reams of paperwork, you are not able to apply for public housing or priority housing nor many other services.  Support is NOT automatically given, you need to qualify for that extra support and you have to have help to do that.  How do you get that help? By filling in other forms with some other agency so you can register with them to advocate for you.

Anyone seeing the irony yet?

And when you have more than one difficulty in your life, well, that means you don't meet their criteria, and so, they can't provide any services because they don't know what to do with you because their Policies and Procedures don't cover it and they, cannot think for themselves!

I am now in the situation where this organisation which is supposed to provide housing to meet the needs of its client base, are telling me I have to take what is offered (even if it does not meet my needs) or I will end up homeless AGAIN! WITH, my two children.

They are in fact exacerbating my situation as a full time carer and making it much more difficult for me to exist by offering me a property which by no stretch of the imagination, meets the basic security needs to enable me to care for my son safely, whilst also being a parent and attending to the usual stuff we all have to attend to.

As I said when LJ's Case Worker rightly suggested no parent is capable of 24 hour 7 days a week supervision ...

If LJ was a "typical" 11 year old, he'd be out riding his bike with his mates and I wouldn't have to be worrying about being able to keep him in!

When will Disability Service Providers TRULY understand the people they are representing?

My Happy Ending will be if this organisation will actually listen to my needs and meet them, like they say they will.

Monday, 7 October 2013

Mindfulness 102

Today, is the last day of the School holidays.

Normally, by this time, I am at my wits end, I am ready to have the kids go back to school and I am looking forward to getting on with my list of "Things To Do". I am ready to move on. Not today however ...

Do you want to know why? This is why ...

Combined with a bit of this ...

I've written before about Mindfulness and my continued effort in perfecting this practice.

While I still feel I have a long way to go in the application of Mindfulness to all areas of my life, I most certainly had some wins these School holidays, which is apparent from the state of my house!

While we always have done fun things, I've noticed that I used to rush through everything. It would be like, "Lets go to the beach!" "Yay, now we are here, when can we go?" Done that, now tick it off the list.

I was  a very big list person, and while I still am for many things, I find the important things cannot be experienced by ticking off a list.

My advice to you all: Pick one thing and stick with it until you have enjoyed the hell out of it!

So we have had a few days at the beach where we enjoyed building sand castles with moats so the water can surround them when the waves come in close enough, kicking the ball in the water and watching the waves bring it back, weeding the back yard and simply just digging holes in the dirt.  We've watched DVDs, been to the movies and eaten pop corn and ice cream. We've been out for posh lunches and trips through Maccas drive through. And, the best part, I was there, I was present, I was in the moment and living those moments with my kids.

My Happy Ending: We have made memories.