Saturday, September 29, 2012

More funding cuts.... who is prepared to fight with me?

When I started blogging 6 months ago, I had no idea the direction the blog would go in. I thought I would be posting a series of honest but witty stories about living with Autism that would encourage and inspire, and maybe increase understanding of what Autism is within the wider community. I don't really know if I've achieved that at all.

What I do know is that I am now writing more and more often about funding and policy and battles for equal opportunities for my kids. The other stuff is still there, but more and more I find myself in the role of advocate and discontent.

I really was not expecting that.

It makes me think about how lucky people are who don't have to think about whether their child will be adequately supported at school. I was one of those until recently. Funding was available to support all my kids to learn well. L needed extra support and he got it. Thanks to "Every Student, Every School" that is now gone. I assumed G would get funding too, but as it turns out Government Policy changed, and now I have to fight for it.

You might think that you are one of those who doesn't have to worry. I'm sorry to say that I am going to have to challenge that assumption. Our NSW Government has announced even more cuts to Education, and it is not just kids with disabilities they are targeting now. $1.7 billion is being taken, and your children will all be affected. As I predicted here, an outcry is starting.

While I feel cranky that it took cuts that will affect the majority before people are interested in making a fuss, when my kids weren't worth fussing over, I am pleased that finally the campaign to let the government know we are not happy is building.

Please keep an eye out for the NSW Teachers Federation organised protests that are coming up, and join in your closest demonstration.

I for one will not be happy to sit back and watch, then tell my grandchildren that education used to be better, but we didn't bother to fight when they took away the funding. Are you?

Who is prepared to fight with me?

Thursday, September 27, 2012

Every Student Every School- an update one term in

I've spent a fair bit of time writing about the Every Student Every School Policy on this blog. I've spent a fair bit of time writing about it to various Politicians too. I've attended a rally, been interviewed by media, collected signatures on petitions, and met with my local Member of Parliament. But the policy is still in place, and the world is still turning.

Event though it might seem to most that I'm going on about something that really isn't having much of an impact, it is early days yet. Aside from the fact that the NSW Government has since introduced even more funding cuts from more areas of education that will further compound the problems experienced by teachers, students and parents, the effects of Every Student Every School have begun to be felt in our household and many others, and will continue to impact us over time.

Here is a summary of the main effects I have noticed in the last 10 weeks.

Teachers Aides, or Learning Support Officers, in many schools have lost their jobs. This impacts (obviously) the Teachers Aides, the teachers who now have less "hands on deck", the Students who have less support available and their Parents who have their children arriving home form school more stressed.

In our house it took 2 weeks before L commented to me about the drop in support. His school promised to maintain as high a level of support as they could with the same teachers Aide,  but it took only 2 weeks for L to comment that he hadn't seen MsA very much lately. The comment may have sounded quite ambivalent to those who don't know him, but I know that he doesn't mention things unless they are weighing heavily on his mind. We have not yet noticed a drop in L's academic performance. It will be interesting to see if there is a difference in his end of year results compared to the results he achieve in Semester One with higher levels of support. We have noticed his enthusiasm for school dropping, which is sad because he is a bright boy who loves to learn new things. We received his NAPLAN scores last week and were encouraged to find him well above the National average in a couple of areas, one of which he had really struggled with a few years ago. We believe this is a testament to the results possible for a child with a disability when they are adequately supported. We fear that over time, with the lessened support made necessary by the new funding policy, L's academic results will suffer as he struggles to navigate the social environment alone and that takes away the energy he needs to do well with his school work.

One of the changes has been the way you now apply for individual funding. Previously, a diagnosis of Autistic Spectrum Disorder qualified you to apply and receive some individual funding. The amount of funding was determined by a formula applied to information provided by parents and teachers into a standard form processed by the Department of Education. The form hasn't changed very much, nor has the formula. It still takes ages to fill in, and is painfully bureaucratic. It still feels like it is designed to be so difficult that you just give up trying to satisfy all its check boxes and jargon filled explanations. The difference now is that the diagnosis no longer automatically makes you eligible to apply. Now you have to complete an expression of interest style form, which I lie to refer to as the "Application to be Eligible to Apply". This preliminary application is just as complicated and time consuming to manage as a parent or School Principal, but provides the Department of Education with a short one page set of number codes that they put into another little formula to decide if you should fill in the real application. I suppose this process saves someone in an office somewhere some time processing the longer set of paperwork, but what it does form my perspective is make our School Principal and me work twice as hard and use twice as much time. In a way I consider that we are lucky to have done both applications, because I've heard that many people filling in the preliminary application are told not to bother to apply.  We were given the go ahead to apply to be considered for individual funding for MissG, which we have now done. I think in total I personally have spent about 8 hours on this process, including the approximately 4 hours I sat with The Principal going through the application forms. I don't know for sure how much time The Principal has spent on it, but I know it was considerably more than the time he spent on it with me. So, at least half of one of his work days was spent on my daughters funding application. I know for certain she is not the only student enrolling next year that he will do this for, and I know for certain he has spent time on applications for students already attending the school. This is time spent on individual students that should be able to be spent on whole school issues. Yes, in some ways, sorting out funding for individuals *is* a whole school issue, but it shouldn't be!

These are the main things I've noticed, from with in my household. At this point, I'd be interested to hear from others that the Every Student Every School Policy is impacting, and to know how the Policy has affected you so far. All comments made on this blog have to be approved by me before they are posted publicly on the blog, so if you want to share confidentially just let me know in your comment that it is private and you do not want it published. If you would like me to reply privately, please leave me your email address. All observations and comments are valuable, so please leave me your thoughts however small they might seem to you. Thanks!

Wednesday, September 26, 2012

When the "what ifs" attack

I have this weird thing going on with my eye at the moment. It's like a mix of allergy and conjunctivitis symptoms. It's pretty uncomfortable, but hardly life threatening.

Yesterday I managed to have a little panic attack over it.

Yep- I was sitting in the car with Hubby driving us, and all of a sudden I was overwhelmed with the worry that I had an infection in my brain that was so bad it was starting to seep out my eye and that I would die within days and Hubby would be left alone with the kids and he wouldn't know everything he needed to know to look after them.

Now, none of my children has "severe" Autism. I don't have to worry about where they will live when I am gone, or who will look after them like some parents do. I thought that I was immune to these sort of panic attacks, to be honest. Apparently not.

For the record, I have quite a good system for keeping records of all the important things Hubby would need if he suddenly had to become the primary care giver and organiser the way I am at the moment. Aside from the fact that he pretty much knows what is going on and attends as many meetings and therapy sessions as his work schedule allows, there is also a paper record of everything. Each of the kids has a file, in the filing drawers, that contains all their relevant health information, school records and for our ASD kids information about all the therapists who know them, recent reports..... everything. Hubby knows where these are, and could easily access everything he'd need to know. The rest of my filing is in all sorts of disarray, but this section is kept in immaculate order (I call it prioritising).

So- what's the deal with this silly panic attack? I don't know! Maybe I'm not as "together" with the whole Autism thing as I like to think. Maybe it's just a normal parenting moment that everyone experiences from time to time. Maybe it's a symptom of an underlying brain infection.....

I decided to take it as a prompt to think through the things I have in place for my kids to get their needs met, and to take a moment to evaluate my record keeping. I think my records are OK, and I am very fortunate to have family and friends that I know would be here for my Hubby and kids in less than a heartbeat if the need should arise. There is even a plan for if something happened to Hubby and I together.

So I don't need to worry. And I won't. Because indulging in the endless cycle of "what ifs" is a time waster, an emotion waster, and an energy waster. And if  really get started, I'll never stop ( I have a great imagination)! There are so many things to worry about, if you set your mind to it, and that is not what life should be about!

Life should be about enjoying the little things, making time for laughs and contentment, celebrating what is good.

Focusing on the attacks of the "what ifs" robs us of that, no matter who we are and what our challenges are.

What are you going to do when the "what ifs" attack next?

Monday, September 17, 2012

The transition to school plan- part 2- The Funding Application

The Principal was surprised to be able to tell me that our application to be considered eligible to apply for individual funding had been approved.

To be honest- I was surprised too. The form we filled in was not really set up to be easy to fill in with Autism in mind. It was much more geared toward physical disability, intellectual impairment or severe behaviour problem. The fact that we had to include the information that MissG is a flight risk when she experiences sensory overload may have helped our cause, I think.

Whatever it was- they ticked the box that said we should go ahead and fill in the full application.

So we did that one morning last week. The Principal, The School Counsellor, Wonderful Hubby and I sat down for almost 2 hours and tried to put into bureaucrat-speak everything important about looking after MissG's sensory, social and safety needs with the view to fitting some learning in there at the same time.

The School Counsellor was a great help as he had completed some testing on MissG the week before and made some great observations about her reaction to stress, tiredness and being confronted with new situations and information (mainly that she tends to shut down and become unco-operative). We copied and pasted, and spat their own technical terms back at them. We were honest about how difficult she can be. That was hard.

Hubby and I were debriefing afterward, and we both felt sad that we had to say such harsh things about our gorgeous girl to get them to pay attention to us. But we had to acknowledge that caring for her and keeping her safe is a tricky job, and to those who are not familiar with her it could be quite overwhelming, especially while she is adjusting to a new school with all it's different routines, structures, people and other variables. So, honest we were, as painful as it felt, because we want the school to be well resourced.

In some ways it was a bit validating to have to explain to someone all the things we know and just automatically do. I know that sounds a bit strange, but in a way it is good to verbalise what our normal is and acknowledge that it is intense and busy and difficult. It is good to be able to realise that all things considered, we are doing an OK job, too!

Anyway, we filled in as much as we could. There were a couple of things I had to give copies of to the school (like MissG's letter of diagnosis from the Paediatrician) so they could keep the box tickers happy. And now we wait again. We wait to see if the powers that be who don't know our child at all want to assign a dollar amount to how difficult she will be to have in school. If they do- how much will it be? It is an uncomfortable wait. But wait we must.

Sunday, September 16, 2012

The grief ambush

I was reading a conversation thread in a group I'm in on Facebook, where people were sharing what they'd done on the weekend. Most of the comments were about how they'd been with family celebrating birthdays, or that they'd had a surprise visitor, or spontaneously gone on an outing. And they all said they'd had a great time, or enjoyed themselves.

And I realised something I hadn't thought about before.

I haven't truly enjoyed a family get together, a surprise visitor or a spontaneous outing for ..... ages. I mean, I've been in those situations and there have been moments of pleasure, or laughter, or contentment. But I am always super alert through the whole event- watching for cues that I need to intervene to support someone or make a quick exit- which is tiring and detracts from the experience because I am not fully focussed on the conversations in the room or the people there. I always leave feeling drained and tired. And sometimes wondering if it is worth the effort.

And realising this made me sad.

A little bit of the sadness was for myself, because I miss enjoying social situations.

A lot of the sadness was for my two ASD kids, because I started to imagine what their experience of life is like if their reaction to social situations has this effect on me. How much worse must it be from their perspective? I hate to think! I know a little bit of the theory of what it is like for them from talking with psychologists and adults with ASD. I don't really want to know exactly what it is like for them, honestly. I think it would be too distressing to really know. Whatever their experience is, they get to live with it for the rest of their lives. I can help them learn strategies to help them cope, with the help of the right people, but I can never make it completely better for them- it will always be coping.

I'm not sure yet what to do with this new realisation. It is making me uncomfortable. Sad. A bit angry. Mostly sad.

......many reasons to be thankful
I can feel a bit of the familiar recurring grief cycle creeping up on me. Tugging at me to sit with it for a while again, and feel sorry for myself. And this time, because I feel it coming, instead of it jumping up and grabbing me, I feel reluctant to give in. I don't want to grieve right now. I resent that tugging. I dislike the way that grief lurks in the shadows of my mind and waits for something as simple as a conversation about enjoying life to ambush me and cause me to stop everything to deal with it.

Maybe naming it and telling you about it will help me to walk by it this time. Maybe acknowledging that it lurks there will help to push it into the background again, without me having to spend time fighting it.

See, I think that while it is probably true that I have real reason for this occasional grief, that I have so much more to be thankful for. And that is what I'd rather be thinking of.

Thursday, September 13, 2012

Fathers Day

Lots is said about Autism Mums. You know the things I mean.... they are put into cute or inspirational pictures and posted on Pinterest and Facebook. "I'm a Mom with a black belt in Autism", "An Autism Mom does better research than the FBI", and then there's the list of "Reasons you should think twice before messing with an Autism Mom". These are all fine, some are funny, some are true. But sometimes I feel like the Autism Dads miss out on a bit of credit that they deserve. Maybe it's because more mums are blogging about Autism? I can only think of 4 Dads out there who are being vocal about their experiences raising Autistic kids, but I know of too many Mums to count who are in the public eye, putting their experiences out there for all to see.

So, this Fathers Day, I am going to write about the Autism Dad in my household. Because I think he is a hero. His story is likely not unique, but it is one little told. So, here I go.

My Wonderful Husband is also a Wonderful Dad. Of course he goes to work as a nurse, and he is a financial provider for our family. He is many other things, too, but Husband and Father are the two roles in which he really shines.

He is the guy who steps in whenever he is needed. He'll get home from a long day at work and offer to cook dinner because he knows I am tired too. He is the guy who gets up at 11.30 at night and goes to pick up kids from the train station after they've been on a drama performance excursion, even when he has to be at work by 7 the next morning, just to save me from doing it. He is the guy who goes to the shops on the way home from work to get bread and milk (and something special for the kids) so I don't need to leave the house, even though it is out of his way and he just wants to sit down for a while.  He is the guy who works night duty on weekends once a month so we have extra money to spoil the kids with a special trip out every now and then. He is the guy who helps me unload and reload all the bookshelves without complaining when I have a hankering to rearrange furniture, even though he thinks I have too many books. He is the guy who makes a point to spend his days off giving me a  break from the intensity of ASD even when he could use some down time too.

And you know what else? He does it all while living with his Bipolar Disorder and the treatments he needs to manage it.

I have noticed over the past few months in many places people talking about the link between Bipolar and Autism. I'm not sure if the scientific community knows much (I should do some reading), but I do know that more parents of Autistic children are opening up and saying that they have Bipolar Disorder. Much like Autism, Bipolar is something that you can't really explain well to someone who hasn't experienced or lived with it. My Hubby manages his symptoms so well that most people are unaware that there is anything different about him. But this does not mean that living with Bipolar is an easy thing for him.

My Hubby takes numerous medications that help stabilise his mood. He only started taking them as an adult, and he was fully informed of the side effects and risks. At the time he decided to start treatment he was so desperate to get control of his life that he chose to risk it. He lives daily with the side effects now (nausea, increased appetite, weight gain, tremors, constipation, diarrhoea, low blood pressure, head spins, dizziness, severe oedema, sexual disfunction, somnolence/sedation, difficulty concentrating and decision making, sometimes sore liver, liver dysfunction) and he has regular blood tests to monitor the function of just about everything in his body, yet he STILL prefers to swallow those pills every day- he says he'd rather live a shorter life and be of use to me and the kids and be able to work and maintain a sense of purpose, than not take them, be free of side effects and totally useless to anyone for at least half the year every year. To me- that makes him a hero.

So, this Fathers Day, I want to thank my Wonderful Husband, who puts other people in front of himself everyday and who deals with so much and works so hard to be the amazing man that he is. And I want to thank all the other great Autism Dads out there who are like my Hubby. You guys might not feel like what you do means much, but I'm telling you, it does. Happy Fathers Day.