Wednesday, June 13, 2012

I'm sorry, is my idealism showing?

So- how DOES one get politicians to listen? It's obviously NOT by writing them a polite letter expressing your concerns and asking for their help.  Apparently it does't work to tell them about how their decisions are negatively affecting you and other people they claim they are trying to help.

How does one get the media to take notice when there is something of significance actually worth reporting on? You know- something that will affect peoples lives in a big way- even more than the kind of dress Lady Gaga wore. How DO you get them to report on the sorts of things that are going on that are discriminating against people with higher support needs in schools, for example?

How does a person go about raising awareness about things like essential funding being taken out of schools? I mean, I know that the statistics here in Australia say disability only affects one in 100 children. But guess what? In my household it affects 2 in 5. So- how does one go about helping people realise that for some in our society these so called insignificant things are actually ENORMOUS?

If I were Clive Palmer or Gina Rinehart I could get an audience with the Premier or Prime Minister. So- what's so great about them? I mean- apart from the fact that they have heaps of money and huge companies that are really good at stripping natural resources out of our land? But really- why is what they want more important than what my children need to grow up to be their best possible? Can anyone explain that to me?

Because right now I am struggling to come to terms with the fact that unless you are rich and have a big business with lots of "fans" that you don't count. I don't have the right connections, upbringing, enough money, and let's face it- I am just not important enough. I am struggling to come to terms with the fact that no matter how much I jump up and down and say my bit nothing is going to change. As much as I want to I can't help my kids with this. As wrong and unfair as it is that the NSW Governments priorities do not extend to helping my kids get what they need from the education system, I will never be able to make a difference for my kids in this area. Even though it is not right that my family pays taxes while the Government turns my children into a financial liability for the schools they attend, I will never be able to do anything about it.

And it is a bitter pill for this idealist to swallow.

Tuesday, June 12, 2012

Things that are true.... Or, Activism.... Or, It could be worse

Lately I find myself looking at this blog, and feeling somewhat uninspired!  I have about 10 posts sitting unfinished. I'm finding it hard to write about my life. I'm not depressed or sad. I'm not really struggling. I'm probably just over thinking things a bit.

Like, when I think about writing about the few struggles we've had lately I find myself feeling like a whiner. I mean- I am so lucky in so many ways! My kids are all healthy. We live in a warm, safe house. We sleep soundly in our beds at night without the sound of gunfire in our ears. We eat every day- 5 or more times every day actually.  We have access to good healthcare services and allied health professionals. My kids are *only* Autistic. It could be so much worse.

It is true that living with 2 kids who have sensory and communication struggles is not easy. It's not easy for me and their dad. It's not easy for their siblings. It's not easy for them. The 2 older NT kids and I have had many a discussion recently about how unfair it is to have a sibling with a disability. I am mindful of not minimising their experience, so I validate their feelings, but I am also hoping that somehow I can help them realise that their experience is so much easier than their brother and sister's. I hope that they are growing up to be people who are going to respect difference in others. When I talk to them I can see them struggle between a desire for self preservation and compassion. This feeds my hope. It could be much worse!

It is true that organising appointments and therapies and communicating with school is tiring. But I am immeasurably thankful for the support we do get form so many willing people. I am angered by recent changes to funding provided to schools to support my kids, and am working hard to see something done to change that. However, unlike many, my children are fortunate to have many who care about them in their lives, and who will do their utmost to support them well, even with the reduction in funding. It could be so much worse.

It is true that having an Autistic child is expensive. If we didn't have Autistic kids that part of our budget that goes toward paying for Psychologist visits, Therapy appointments, petrol to get to them, particular kinds of clothes and foods, feeding "obsessive interests", providing sensory tools, etc.... could be  used for other things. But we have access to so much in the way of support, and there is some funding that helps cover these things. I know parents of children with more debilitating physical disabilities that do not have access to as much in the way of support and funding. So, really, it could be much worse.

I could go on, but you get the idea! It's hard to write about life when I have such a dichotomy of thoughts running around my head!

I'm also tired from all the other writing I've been doing- letters to politicians about funding, and raising awareness about the changes Government is making in the community. I feel a bit like all I'm doing lately is complain. But the thing is, for a long time I looked at other people and admired their conviction, their assertiveness, their "gumption".  I saw other people stand up and talk about things they were passionate about, and for a long time wondered if I would ever find something I would get up on my soapbox for.  Well, I found it. Just because something is legal, or common, or "the way it is done" does not make it OK. I feel strongly that I should speak up, but at the same time I don't like feeling like a complainer. Maybe that's what the word "activism" is for- complaining for a good reason and with purpose.

activism |ˈaktəˌvizəm|nounthe policy or action of using vigorous campaigning to bring about political or social change.DERIVATIVESactivist noun & adjective

But I don't feel much like an "activist". I don't see any political or social change as a result of my "vigorous campaigning"! I've sent numerous letters out to politicians and had one response! Is that how it works? You get passionate about something and do everything you can, then just accept being ignored?  
And then something that seems little happens....  while I've been writing the guy arrived to check our smoke alarms. Miss G clearly and confidently introduced herself !!  She has struggled with this skill, and  hearing her sweet little voice say her own name so proudly to a stranger was a big deal to me, even though it meant nothing to him. Maybe my role is just to be content with making a difference in 5 lives?  .....  It could be worse!! 

Sunday, June 10, 2012

Monday, June 4, 2012

Would it be OK to do that if the kids weren't Autistic?

There's been a case being heard in the US involving a couple who used a cage door across the bedroom of 2 Autistic boys as a method of controlling them. The boys were aged 5 and 7. Their older brother said he had to feed them breakfast through a slit in the wires, and that they didn't come out much. A jury has just acquitted the couple of any wrong doing.

Here's my question to those jury members- if your non-Autistic child was behaving in a challenging way, would it be OK to cage them up? There would be an outcry, right?

I don't see the difference. A child is a child. Cages are for animals.

I feel really, really angry about this.

It brings up another question for me too, given the focus of my attention the last week or so has been on the reduction of funding to support children with extra support needs in public schools.

Would it be OK if the Government just took away the funding that allows for schools to teach non-disabled kids maths? There would be an outcry, right?

Yet when they take away the funding to provide for the needs of my Autistic children, there are a few stories in the newspaper and that's it. The issue is gone from public attention. No one cares.

Saying I feel really, really angry about this doesn't even touch the surface.

More thoughts on the new funding arrangements

I just can't stop thinking about this awful "Every Student, Every School" funding model.  Here are a few things I've realised in the last few days:

1. No individual funding means that if I have to move my kids to a different school, there is no funding to go with them. Under the old system their support funding automatically followed them to a new school. Now they will have to turn up at a new school with no extra funds for the school to support them with. And because the new model only allows for schools to have their needs reevaluated once every 3 years, the new school would most probably have all their funding allocated to kids already attending. This changes the arrival of a child with extra support needs at a school from something relatively easy to manage to somewhat of a financial liability for the new school. I don't like the idea that my child will be unwanted because s/he needs extra support that the school can't give due to lack of finances.
I really hope nothing happens that means we have to change schools!

2. The government has removed a few different categories of funding and replaced it with one lump of money they give to the school that the Principal has to use to cover everything that all the smaller amounts used to. The lump amount is generally less in practical terms, even though the Government has managed to make it look like more (in most cases) in the document they published. Then I have to wonder- if most schools look better off on paper, but are actually going to struggle to make ends meet to provide a similar level of support, what is going to happen in our little school that is actually worse off on paper???

3. Due to the fact that there is no specific ASD training provided to teachers or teachers aides (the few that will remain) it will be very difficult for schools to know what resources are appropriate to provide for our children. This means that either a) ASD specific resources will not be provided or b) if schools want to know what to provide, they'll have to employ the services of other professionals (Psychologists, Occupational Therapists, etc) to help them with this- and that will be paid for out of the money that the Government says will cover the cost of supporting the kids.

We need to make our objection to this initiative heard- It is a step backwards in the fight for equal educational opportunities for ASD kids.

Do not assume that it won't affect you! You may not have a child with a disability now, but that doesn't mean you never will. This change could affect you directly, or it could affect your nieces & nephews, your friend's children, your children's friends, or one day your grandchildren.

Please join me in petitioning the NSW Government and asking them to reconsider this funding change.