Include Us

I wrote a letter to my local council member this week. I live within 5k’s/2miles of our city centre in a great little suburb. I feel pretty lucky to live in a nice little house with a big backyard, plenty of greenery, kind neighbours and a great community of friends scattered around the area. But…

As anyone who is raising a child with a disability knows, there are many hidden challenges that most people are just not aware of. Inclusion sounds good and is an important goal when it comes to creating & developing ‘community’. For many families though it’s superficial and it’s just not enough. The result is a terrible sense of isolation and exclusion, right in the middle of a wonderful community. How ironic!

So here’s my letter…

Hi Nicole,

I wrote to you last year about the possibility of having the latches on the fencing at the Jessica Andrews playground upgraded to make them child proof.

When we last emailed you were pursuing this, but as yet, there has been no change.

I have tried to use the playground periodically throughout the time it has been in place and there has never been child proof latches on the 3 separate entrances/exits. It is such a small thing, but would make an enormous difference to the levels of safety, not just for my kids, but for anyone with more than one child wanting to use the playground.

It’s frustrating! I have three children in my care (I’m a foster carer) my eldest is 6 and has autism. He is what they call an ‘absconder’ – a child who will run off, with no sense of personal safety, no road sense and as quick and as determined as an olympic sprinter! He has never been able to use that playground. It’s impossible for me to keep him safe, let alone care for the other two younger children in my care at the same time. I’ve even tried to go there with two adults – still not possible – he knows he can get out, so that is his mission. So he is stuck in my backyard – so much for inclusion.

Which brings me to the next topic…the new ‘all-abilities’ park at Tennyson. How wonderful it is! What a beautiful looking park! Full of kids playing, having birthday parties, families coming together. We can never go there.

My boy doesn’t need a liberty chair. His disability is not physical. I’ve tried (I am a ‘try-er!). We went there earlier this year after driving past it so many times and having my 3yo beg and plead – can we please go to that park. I relented and thought we would give it a go. Well it was an absolute nightmare. My 6yo spent the entire time running up to the road or down to the river. I had to abandon the two little ones (3y & 18m), trusting the other parents in the park (none of whom offered to assist) to watch the little ones while I ran after him. I could NOT stay there longer than 20 minutes. We left – everyone, including me – in tears.

It’s SO incredibly hard to do ANYTHING inclusive. The Council think they have ticked their disability/inclusive box by creating these playgrounds, but all they have done is to create really great playgrounds for kids who can already access EVERYTHING! It’s heartbreaking and cruel to be locked out of so many activities and services.

There is a campaign for the fencing of the all abilities parks – so that children of differing abilities can actually enjoy them alongside their peers. As you can tell, I’m a strong advocate for this, but, seriously…for the sake of a few child proof gate latches on our local playground, a negligible cost – it would be wonderful to see my little boy doing something within his local community.

Can you please help to make this happen?

Thank you,

 

Autism-Wandering

Downsideup

I’ve got a stack of reports I’ve collected over the almost 6 years I’ve been caring for my oldest boy. There’s letters confirming this diagnosis or that. There’s entry and exit reports, speech, OT & physio reports, school reports, IEP’s, EAP’s, progress reports – you name it, someone wrote a report about it.

a child with a disability needs a lot of paper!

 

Last week I received a copy of some recent reports from the education department who go through a process called ‘verification’ to confirm that your child has a disability and that they are attending the appropriate educational facility. My little guy has been verified in three different areas – his autism, his visual impairment and his intellectual impairment.

Now you don’t get to this point without knowing that he (and I!) have some pretty big challenges ahead. But seeing their assessment of his intellectual impairment was one of ‘those’ moments. Sobering. It had never been officially confirmed before now, it’s so hard to really know or to accurately assess when their communication is so limited. So seeing it in black and white, in no uncertain terms – felt like a blow.

Autism is so unique and variable. I have met and read about and marvelled at some of the most wonderful people who have autism. I know that for some – there is a key that can connect our worlds. It may be an ipad or music or painting or maths or cars or even medication. You may find that key when they are young or later in life when they blow your mind by communicating and connecting in a way you never thought they would or could.

Finding that key is a parent’s life mission. But it can be a shapeshifting, mysterious, enigma wrapped in a riddle kind of key. You have to keep believing that it exists, despite the reports. That’s what will keep you getting up in the morning and starting the day with a hopeful, optimistic view of the world while also enjoying the beautiful child – in all their challenging glory – that you have in front of you day to day.

So, I’m processing all this and thinking about what it all means. I’ve been mulling it over for a week now and the thing I keep coming back to is this – reports, assessments and diagnoses are not true representations of the whole person. They are only looking at a snapshot in time or a point on a bell curve or a tick in a box. My little boy is so much more than that. His life is far more meaningful than that. And most importantly, his potential is unknown and this cannot be reported on or assessed.

There are so many amazing examples of people who have been ‘written off’ by the professionals, but who with perseverance (something autistics specialise in!!!) and loving support amaze and inspire us with their contributions to the world, their strength of character and their willingness to beat the odds.

I was looking for some examples of this today when I remembered a truly remarkable young Australian man – Luke Vujicic. If anyone can make you believe that we all have a place in the world, that we all have unknown potential and that as a parent it’s my job to help all my kids to explore that, to pursue it, hunt it down and wrestle it to the ground and enjoy the process – then Luke can. Watch this! (sorry about the advert that kicks it off).

Luke Vujicic

 

 

 

You Changed My Life

It doesn’t happen very often these days, but on Saturday night I got to go out see a film. The big boys were having overnight family visits and a beautiful friend offered to come over and babysit the baby.

In my life B.C. (before children) I would regularly take myself off to see a film. I enjoy going to see films by myself. The big screen, the surround sound, the quiet hush of a bunch of strangers sitting in the dark for a shared experience. It’s a little holiday. If it’s a good film, it’s a great little holiday. If it’s an exceptional film, then it’s a 2 hour, all expenses paid, luxury, beach-side indulgence.

I got to see an exceptional film. I may have even got a sun tan.

The French poster

Made by the French filmmaking team Olivier Nakache and Eric Toledano, The Intouchables is set in Paris. So yes, it involves subtitles but forget about that because you won’t even be aware of it after the first minute. If you’ve never seen a film with sub-titles before – then this is the one to go and see!

The story is based on the real lives of Abdel Sellou and Philippe Pozzo di Borgo. Phillipe is a very wealthy man who suffered a spinal injury. He took a risk when he hired Abdel, a guy from the ‘projects’ as his personal carer. So ultimately it’s a buddy film but at the heart, it’s a comedy! When Phillipe granted the film rights to Nakache & Teledano that was one of his stipulations. He wanted a good movie, a funny movie & a deep movie. He got it.

Neither man could have predicted the impact of the friendship that developed from the chance that Phillipe gave to Abdel. But the title of the book that Abdel wrote ‘You Changed My Life’ says it all.

Abdel and Phillipe – changed each others lives

Omar Sy. Wow! If you haven’t ever heard of him, well then – you heard it here first people. His performance in this film is dynamite. Because of this performance he has become the first black man to win a Cesar (the French film industry awards). Of course, in France he is like a household name and has his own prime time comedy show on television. Elsewhere he is largely unknown, but not for long. Not for long!

Omar Sy

Film reviews aren’t really my thing, but sharing good stuff is. Get your self out of the house and go and laugh out loud with a theatre full of people. It’s good for the soul.

Dear Campbell Newman, Premier of Queensland

Australia is at a pivotal moment in developing a National Disability Insurance Scheme which would ensure that all people with disabilities would have an equal standing regardless of how their disability was acquired, among many other benefits. The Federal Government is seeking support from all of the Australia states in order to commence the initial phase of the scheme.

Where I live in Brisbane, our very new, very conservative Premier is in slash and burn mode and is playing a political game by holding out on contributing, saying we are virtually bankrupt.

I am just so frustrated and angry about this. All I can do is write. See below for the latest news.

Dear Premier Newman,

I’ll be dropping off my 5yo foster child to your office later today, just for a visit. You clearly need some real life experience when it comes to disability. He is after all, a ‘child in care’, so bottom line he is YOUR responsibility and will be for many years to come.

Now, don’t cheat and get your relatives – whoops, I mean advisors in to help. Just take the time to enjoy his company. He does scream a lot but don’t worry, he enjoys it. You’ll have that in common. He’s not interested in toys but he does enjoy ripping paper. He can help you get rid of all those annoying appeals to your humanity and leadership potential when it comes to disability. Do not turn your back on him or let him out of your sight. He’s also what is called a ‘runner’. If he didn’t have a couple of formally diagnosed disabilities, he’d be called an absconder. Thank goodness we’ve got those labels sorted!

Oh, don’t forget to take him to the toilet. Despite talking about the toilet relentlessly, he will not warn you that he needs to go, kind of like the mixed messages you give. You will have a big mess to clean up and not even your advisors will volunteer to help you out with that job. Don’t get angry if you get mess all though your carpet, on your seating, walls and all over you. Just remind him calmly that we do this in the toilet. It’s dirty work, but you’re excelling in that department. You’ll manage.

If you need to do something: cut a few more public service jobs, sob to the media about how poor we are, then just get on and do it. You get used to being scratched, pinched and pushed. Just be thankful he only bites himself and not you.

Whatever you do, don’t let him get distressed. You won’t be able to do a thing if he has a meltdown. George Street will grind to a halt and start judging you on your parenting skills.

If you need a break, just call your mate Ms Davis over at the Department of Communities, see if you can organise some respite. I dare you! If you can get anyone to answer a phone, they will tell you that there’s not one single placement available in the Brisbane region.

Plenty of kids are waiting in line as soon as one becomes available. There’s babies being born every day who come under your responsibility. Kids in desperate need, just waiting for someone to put their hand up and volunteer to love them and care for them while their families can’t or won’t.

You might get a respite offer from another region. You are a pretty important person after all. If you do, would you mind driving 2+ hours or so to drop him off, then go get him again afterwards? You’ll need to use your own personal car for that. If you’d like to get reimbursed for the fuel, there’s a form that you submit, that goes into a black hole. You might hear back sometime next year but you probably will have axed those kind of supports by then, so I wouldn’t bother.

That’s about it. You’ll be right! He’s only five and it’s not like he’s in a wheelchair or anything. I’ll miss him, but I’m trusting you to do the right thing and look after him. I’ve got to get myself off to the rally protesting your pathetic and callous disregard for the people with disabilities in Queensland.

Latest News: Great news – NDIS launches looking positive for NSW, VIC, SA, ACT, TAS. “My Way” in WA. QUEENSLANDERS – hit your keyboards and tell Qld State MPs what you think about your state government’s priorities.

http://www.parliament.qld.gov.au/members/current/list/