Wednesday, May 16, 2012

Funding and other elusive things......

I wasn't going to blog this, but it's making me cranky so I'm writing it down.

It hasn't been a good week for L. It's NAPLAN week, so that's got him out of routine for a start. On top of that- So far this week he has had his bag raided at school (fortunately his new phone was in his pocket and nothing was taken this time), milk spilled all over his bag, had a bully shoving him around and trying to take things from his pencil case in class, and a bus driver decide to change the route because he thought no one needed to go down our street. This afternoon has been tricky for him because he is stressed out from all this stuff happening during the week, and he doesn't have access to the computer (his preferred way to zone out and destress) because his big sister has an assignment due tomorrow and she needs the computer to finish it up. I understand all this is the reason for his tears and tantrums tonight, but it doesn't make it any easier to deal with on a night when Hubby is at work and G is having an emotional night too.

It's hard to know how to help him. I can coach him all I like from home on how to deal with bullies, and that he needs to report what happens, but the fact is that he learns this stuff very slowly and coaching him on what to do is very hard when I wasn't there and have to rely on his very sketchy details on what happened to guide me. He doesn't just assimilate the information he needs on how to respond when someone shoves you in the hallway by seeing how others deal with it. He doesn't read the non verbal communication that goes on around him and use that information to know when something is serious enough to warrant reporting. He can't focus his attention amidst all the noise and movement on the bus to hear when the driver calls out "does anyone need this street", and even if he could he'd be too put off by the sudden change in routine to respond in time to prevent the driver changing the route anyway. And besides- what kind of a school bus driver does that anyway?!

I'm feeling a bit tired of having to make phone calls to every service he uses and explain to them that they need to be predictable or stand up for people who seem a bit unsure of themselves or a bit "different". It's good that when I do they respond well, and I've been happy with the schools response to the things that have happened this week, but it is so tiring having to explain over and over what needs to be done to help my boy.

Recent statistics released- which I'm sure many of you know about- say that 1 in 88 kids in the USA are Autistic. Of course the speculation is that there is over diagnosis going on... blah blah blah.... but the fact is that more and more kids are in schools, both there and here in Australia, who have higher needs and require more support to do well socially. If they aren't supported socially they suffer academically. So why aren't teachers and aides and support staff begin trained specifically to help ASD kids? It makes me even more frustrated when teachers give me feedback like- "when I use the strategies you give me for L in the classroom, all the kids benefit".

I guess part of my frustration at the moment stems from feeling like I've been chasing my tail a lot lately. I can't keep up with the pile of dirty clothes that appears every evening or the dirt on the kitchen floor, even though I don't seem to be doing much else. I think I'm in one of my busy-brain funks, and it's slowing down everything I'm trying to get done.

Two good things happened recently that have started me thinking. The first was I attended a meeting at which our local member of the Senate was present to discuss the recently published Gonski Report (review of how funding is provided for schools in Australia, with implications for the future of how funding for children with disabilities will be provided). The second was an appointment with G's new psychologist in which we discussed ways we can use the funding that is available for her Early Intervention therapies before she goes to school.

Both meetings gave me hope for the future by helping me realise that there are people out there who really do want to see things improve. However, both these meetings highlighted how tricky the current systems are to navigate as a parent who is already so busy just living the life of the parent of an Autistic child.

I asked the Senator how I can be involved in the process that informs the decision making about the way funding will be provided in the future, and he invited me to write a submission that he can take to the party room with my observations and suggestions from the perspective of a parent using the current system. I said I would.

When I got home and started thinking about it, I realised what a huge task this is. The report makes some good recommendations that if implemented will make a positive difference to the way funding is provided for ASD kids. I hope I can help inform the decision making process in a good way. I want to say something that makes a difference. I want to be able to speak with credibility. I want to sound intelligent and believable. I want my thoughts to count for something and to help kids who really need better support in the classroom. But I'm not sure how best to do that!! It's taking up a lot of my mental energy, and I'm feeling overwhelmed by it! Hopefully it's a bit like an essay, and I'll suddenly be hit by a wave of clarity and be able to sit and write it all out in a way I'm happy with. And amongst all those thoughts is the knowledge that even if I manage to write something kick-ass brilliant I am just one voice, one parent, presenting to a group of politicians who will be trying to make a reform that keeps voters happy while saving the government money.

So again, hope for good support at school feels elusive. And I think that's what it come down to. I'm frustrated with the intensity of this journey, and I'm frustrated that ultimately there is so much work to do along the way, and I am the one who has to do it. I have to prepare my kids. I have to advocate for them. I have to prepare others to help my kids. When things go wrong I have to figure out what happened and then make the calls and go to the meetings to fix it. I have to be available all the time. ALL THE TIME. I have to be available for my kids even when they aren't with me. I have to be available to take the follow up calls. I have to use my kid free time getting myself ready for their return and being prepared to help them pick up the pieces. I feel like I'm doing it alone most of the time.

I am tired. I know it's a phase- like everything. But right now I wish the kids at school would just be nice to my boy, and that bus drivers would just stick to the route they are supposed to drive. That's their job. I'm doing mine. I wish they'd do theirs.


  1. You are such an amazing mum, wife, friend and advocate. I am so sorry L is going through that stuff with school :-( I feel such a similar way in terms of often doing it alone, never having enough time and the dirty kitchen floors. I wish I could support you more. Thinking of you and am always here for a debrief mate x

  2. fair enough, my love, fair enough. xx

  3. It really is hard, when you need the time to process it all, and the world won't slow down. It seems like my son's growing so fast, and how can I do enough before it is too late? But now...deep breath. One day, one week, one month, it will come together, and my son will be as fine as he can manage to be. We will move forward, as fast as we can manage. One step. One breath....and go.

  4. Sorry to read that you are feeling so drained at the moment. While it may feel like you are "doing it alone most of the time", there are many of us out here who relate to how you're feeling. I appreciate you taking time to share your journey because it certainly helps me. Sometimes I feel like my life revolves around being an advocate (and being seen as the neurotic mother). It is tiring to constantly try and help others understand our kids. My daughter does a brilliant job of holding it together throughout the day at school, but like you I am there in the afternoon picking up the pieces.
    I hope this difficult phase passes soon for you and something will come along to reinvigorate you and calm your kids. This whole ASD thing really is a round-a-bout...up & down, round & round.


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