Thursday, May 31, 2012

Every Student? Every School?

I posted recently about the NSW Governments "Every Student, Every School" initiative. I've talked to our Primary School Principal and our High School Special Needs Support Unit. I am feeling very lucky to have my kids in such great schools. Despite the fact that L's individual funding is being removed they have assured me they will figure out how to fund his support program so that it continues uninterrupted. G's transition to Kindergarten is underway and the Principal and Kindergarten Teacher are committed to doing everything in their power to ensure her smooth transition and to provide her with a safe environment that will meet her social, sensory and educational needs. The people working with my kids are amazing and I cannot express my relief to have them on board and my gratitude for the effort they put in to meeting my kids needs.

All this said, however, I am well aware that not everyone is so lucky. With this in mind I have drafted letters to quite a few politicians, which I will be sending out shortly, expressing my concern over their decision. I have also started a petition, which I would be please if you would all sign and share with your friends, on your Facebook pages, and anywhere else you can think of. I have set the target at 5,000 signatures (nothing like stepping out of your comfort zone!!). When you go and look at the petition you will see an explanation of why it is important to sign. I've tried to be succinct, but it is a complex issue, and I feel a bit of anxiety that I haven't managed to capture it well. But I figure if I let my anxiety take over I'd never get anything done, and this is one issue we cannot afford to stay silent on.

Thanks in advance for your support.

Monday, May 28, 2012

The wisdom of Government

I'm trying to stay calm until I meet with our school's Principal and find out exactly what the implications of the new funding arrangements for NSW school are for G starting school next year. It's hard though.

Our school is losing $40,000 of "learning and support funding" thanks to the "Every Student, Every School" initiative. In their wisdom the NSW government decided to assume that 1 in 100 students in NSW schools has a disability (disability- not just Autism... all of them), and is funding for those numbers. They also take into account NAPLAN scores (I'll save my rant about standardised testing for another day). So our school of 150 students whose teachers have worked their butts off to get the schools NAPLAN score improving is now being punished for doing well and for only having a relatively small amount of students. The two things that make the school so appealing to me as a place for my Autistic daughter are going to work against the great staff who will be doing everything in their power to support her.

From the front page of the gov't document outlining which school gets what-
"Each regular school receives a base allocation for learning and support. This reflects the size of the school and the learning and support needs of students. Any changes in allocations between the previous year and this year have been carefully considered and reflect changes in:
• enrolments at the school
• learning needs of students as determined through literacy and numeracy data"

This shows a complete lack of understanding that some disabilities don't only require learning support, but also social support to help them integrate into a system that requires their social conformity to be able to get the most from the setting, and sensory support to allow them the resources they need to cope when they experience sensory overload.

They say they are making things more equitable, but failing to take into account that it is possible for a school with 150 students to have 3 Autistic children attending seems somewhat shortsighted to me.

As if each day supporting my kids is not enough, here is another battle to fight.

Saturday, May 19, 2012

The Weird Kid

More discussion last night with L about how school is going. Academically, he is powering on. Socially- not so much. His one friend has been absent for the past 2 days, so L chooses to be alone during recess and lunch times. This makes me a bit sad, but in the past I have told myself it's OK because he is happy that way, which kind of helps me feel better.

But it seems now that his desire to be alone if his friend is not there is causing problems. It's not that he couldn't go and hang around with other kids in his class. He'd be welcome to. He's been invited to. But he doesn't want to. They don't do things he wants to be involved in, so he prefers to be alone. This applies to everyone- even teachers. He told me that when he is by himself in the playground, people come up to him and try to talk to him. He thinks it's because they are being nice and checking up on him, but he says he finds it "creepy". He doesn't want people to come up and ask him if he's OK, or if he wants to join them, or even to just sit near him and say 'hi' when they do. He doesn't want to talk to them at all, even to say 'hi' back, because he doesn't know them, he doesn't understand what they want from him, and he just wants to be alone. His words. Some people have even placed a hand on his arm or shoulder as part of their greeting and he really *hates* that. So I asked him what he does if people approach him. He told me he usually doesn't answer them, and that he just walks away without looking at them.

E was listening to this conversation between L and myself. When L left the room she told me that she thinks if he does that too often he will become known as "the weird" kid and he will be picked on and harassed because kids will find it funny to see his unusual reaction. Which is exactly what I was worrying about as I was listening to him talk. She said some of her friends have already told her they think he is a bit strange.

Again, the difficulty of coaching him through this is that I am not there to see what these interactions look like, so I am not able to interpret the intentions of these "creepy" people and help him learn to interpret them appropriately for himself. I am so out of my depth.

I also worry about what is going to happen when L's one friend gets tired of playing the same things, and talking about the same things over and over again? I know that it is starting to happen. L says sometimes his friend wants to go and play with other people, and L doesn't want to join  them. Which is normal, and right. But sad for L, and for me. How long do we have before L is alone in the playground all the time? How do I help him gain confidence to be around people who have different interests to him, when he can already articulate that he knows people think he is "strange" (his words)?

The last thing I want is for my son to become known as "the weird kid". I talked about being weird in my post "The weirder the better", and I still believe there is nothing wrong with being unique or "strange" or  "weird", but right now this is causing my boy problems and anxiety. What should I do? If you have experience getting your own ASD teen boy through this stage, I'd love to hear from you.

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.

Sunday, May 13, 2012

Mothers Day Reflections

It's Mother's Day, and all day I've been thinking about how much I love being a Mum.  I was treated to a sleep in. I had breakfast in bed. I was given gifts. And it's not only the special day perks I love. I love hearing my kids play together. I love laughing with them over silly jokes. I love the sweet cuddles. I love the moments when I can teach them stuff and we connect in a meaningful way. I love the shared smiles with my Wonderful Husband when the kids do things that are funny or cute, or sometimes inappropriate but still funny....

So I went through today feeling very happy. And then it was dinner time. It was one of those meal times that included people arguing over who was to sit where, numerous reminders that cutlery exists, and culminated with Hubby announcing the two boys who had just been involved in a slap-fight at the table could both go to bed immediately. Happy Mother's Day to me.

Fortunately apologies were made and accepted and it wasn't long before the usual amusing antics resumed. The reminders to use cutlery continued, but I'll take what I can get if everyone is eating a healthy meal.

Now that all are sleeping except Miss16, it is pretty quiet and I am left reflecting on my parenting journey. It started unexpectedly and has been pretty unconventional ever since, really.

Today I am glad to be where I am.

I am glad to have been taught so many valuable lessons by my kids-
Slow down.
Really listen.
Don't give up trying just because it's hard.
Don't give in when you're sure it's important.
Give hugs.
Make sure you always have a good supply of paper and sticky tape.
Be patient.
Everything is possible.
There is always something to be thankful for.

I'd love to hear from you all- what have you learned from your children?

And from one Autism Mum to all of you out there- Happy Mother's Day. I hope you know that you are loved and appreciated, even if your child can't tell you so.

Friday, May 4, 2012

Why would anyone do that?

This week I found out what the hardest part of having your phone stolen is, if you are a 13 year old boy with Aspergers Syndrome.

L had his phone stolen from out of his school bag while it was unattended for a few minutes during lunch break. He was a bit upset about not having his phone for a few days until we can replace it. He was a bit annoyed while he thought he'd have to learn a new phone number (which he doesn't, so that was dealt with quickly). He was sad to think that he may have lost the progress on a couple of games he had been playing. But do you know what really upset him?

"Mum- I just don't understand how anyone could actually do that to someone. I mean WHY would you take something from someone that isn't yours?"

The heart break in his voice reminded me of my other children when they were around 3 or 4 years old and they realised that everyone dies. And I was in that horrible position that all mothers dread when you have to take away a bit more of your child's innocence and explain that not everyone out there operates with the same amount of integrity as they do.

I wished I could protect him. I wished I could find the person who took his phone and explain to them the impact their actions had. I felt angry at the thought that they probably wouldn't care.

I hugged him hard, and said, "not everyone is as nice as you, Buddy, and not everyone thinks the same way as you and respects other people as much as you do". He straightened up, and squared his shoulders. "Maybe we could ring the phone and ask them for it back?" I realised as I said it how ridiculous my reply was- "well, if you took a phone would you give it back just because the owner rang and asked you to?" He looked at me blankly. He truly did not understand the question. It was an absurd question- he wouldn't have taken the phone in the first place. I tried again- "Do you think someone who stole a phone would keep the SIM card in it and answer it if it rang?" Nope. Still drew a blank. So I simply said, "Buddy, someone who steals a phone for fun will not return it if we ring and ask for it." He took that as fact, and he sighed.

I sighed, and wished that there could be more in the world like my boy, and wondered how to help him cope with all those who aren't like him.