Wednesday, November 28, 2012

Brave smart and strong..... my amazing son. And a rant about funding cuts.

I believe it was Christopher Robin who said you are braver than you believe, stronger than you seem and smarter than you think. Well, technically, it would have been A.A. Milne who said it, I guess.

One thing that strikes me about my Autistic kids is how resilient they are. And how clever. I'll explain.

I go through the day and I process sounds, sights, smells and sensations. I interact with people appropriately. I plan and carry out tasks. I get from one place to another. I smile and laugh or look serious at the right moments (mostly). At the end of the day I am tired from doing all this.

My Autistic kids do the same things. The difference is that they do it all having learned by rote all the social cues and correct responses. They do it all from in the middle of dealing with a sensory system that interprets everything much more intensely- lights are brighter, sounds are louder, touch is painful. That has to be exhausting!

Every time they master skills they get busy using them well in their everyday lives, and then at some stage the rules change. They grow a bit older, and require a new set of more complex skills that they must rote learn and implement. Some stages have a few new skills to acquire, some have lots!

This past year has been a stage with heaps of new skills for my 13 year old Autistic boy to learn, as he started in Year 7 at High School this year, in a mainstream class. We did as much preparation as we could before hand, and off he went. Sadly, it is true that kids on the Autistic Spectrum are much more likely to be bullied than their peers (46% compared to 11%). This has proved to be the biggest issue my son has faced this year. We had him prepared to navigate hallways, deal with 7 teachers, able to cope with a daily timetable that changed over a fortnightly rotation, ready to plan out and manage assessment tasks. We have started teaching him more complex, adult style social cues and responses. What we couldn't get him ready for was having his lunch box stolen, being shoved in the hallways, being called rude names, having money demanded of him by other students, having his school bag urinated on and having his mobile phone stolen. We supported him through all of these things, with the help of our Psychologist and with the co-operation of the school.

Half way through the year the NSW Government took away his individually allocated support funding (click here to read my Open Letter to NSW Politicians expressing my concerns about the Every Student Every School Policy), and he lost time with the Teachers Aide who had been working with him. Things had been hard, but manageable before that. After the funding cut, things got very hard. Both my Hubby and I, and our sons teachers could see he was not coping as well socially.

Amazingly though, even with all the stress he was experiencing, my Brave, Strong, Smart son managed to achieve so well academically that the school has suggested he would be suitable for placement in a class for Gifted and Talented students next year. The suggestion was made as a way to support him better academically as well as socially, as the group of students he will be placed with are highly motivated to learn and much more of a predictable and mature social group.

Not only am I encouraged by the schools willingness to do this for my son, I am sure that it is the more suitable, more supportive environment my son needs to gain back his enjoyment of school and his interest in learning. And I am immensely proud of him! He never fails to rise to the challenges set before him, despite the extra difficulties he has to work through. Seeing him do that is one of my favourite parts of the journey of parenting Autistic children.

The rant part of this post is that the NSW Government should count themselves lucky that they are in the fortunate position of having staff working in their schools who are so committed to seeing kids with additional needs well support regardless of how much resources are stripped away from them. In our family we have already seen the trickle down effect the funding cuts are having. We feel very relieved that the schools our children attend are willing to work with us to make sure our kids get what they need despite having significantly reduced funding to work with. It angers me that the people who made the decision to take away the money that provides that support will never know what the real cost of their decision is and will continue to be.

But lets finish on a positive note. My son is amazing! He has worked hard. He has dealt with things he never thought he could. He has grown. He has persisted. He has achieved well. We are now winding down for the year, having a few days off here and there, even though school is officially still on. Soon we will have a nice long break from school. Next year is a new start in a more supportive environment. I am sure we are going to see more great things form him next year. If he could do so well this year, with all the extra awful things he's had to deal with, imagine how much more he will achieve with many of those stressors removed.

I am one very proud mum!

Saturday, November 24, 2012

The transition to school plan- part 3- Kindergarten Orientation

Time to update you all on MissG's progress getting ready for "Big School". As the end of the year draws closer, and I realise there are only 4 more weeks of her attending Pre-school, I am a bit surprised to find that I am not really nervous about this transition anymore. That makes me happy!

We have done pretty much everything we can to prepare her, and the school, for her starting there next year. We have a few appointment left to go with our fantastic psychologist, who is helping us with developing social stories and working on some social skills prompts. Apart from that there is very little left to do.

So, let me tell you about the Kindergarten Orientation program that we have just been involved in.

First, I'm going to quickly say how much I LOVE my kids Primary School. It is "just" our local public school, and it has historically had a "bad reputation" due to being in a "rough neighbourhood". All the local talk about it is highly exaggerated, and mostly untrue. The school has the most dedicated and talented staff I have ever come across, and we feel so lucky to be able to send our kids there. It is a small school, and the effort they put into all areas of the children's development and welfare is exceptional. The care and commitment The Principal and other Staff have shown to supporting MissG in her transition has made things so much easier for her and for me, and I honestly would not send her anywhere else next year.

The Kindergarten Transition Program the school ran this year was 7 weeks long, and ran on Wednesday mornings for 2 hrs. Some mornings MissG didn't want to go- but that wasn't for any other reason than that Wednesday is a Preschool day and turning up 2 hours "late" was a break from routine that she found a bit of a challenge. Each week we met at the schools Community Room, where many of the kids were used to going for playgroup, and the kids played while parents chatted and got to know each other for half an hour. After that the teachers took the children off for some activities in various places they need to know- classroom, library, playground, music room....  while the parents went and learned about different school programs, resources and services available. It was fantastic to see the kids gain confidence moving around the school and interacting with the staff and with each other. By the end of the Program, they would go off for their activities with no fuss, perfectly comfortable with the staff. Great to see!

The thing that strikes me most about the success of the Program is that it was beneficial for the "normal" kids and the kids with higher support needs alike. None of the children were singled out but all were catered for in exactly the way they needed. And so were the parents!

For privacy reasons (ours and the schools!) I'm not going to name the school, but let me tell you- they are amazing!

When you go looking for somewhere to place your kids who have special needs you are looking for somewhere like this, that offers Programs that are inclusive of all children, are well thought out, well executed and for staff who are open minded, caring, relaxed and committed. It can, unfortunately, be  hard to find (we tried 4 other schools before we found this one), and with the NSW Governments commitment to cutting funding to our schools I fear will become even harder to find. Harder, but not impossible. So- my thanks go out to our great school. MissG really benefitted from the Kindergarten Transition Program. It has made a big difference to our family.

Separately form the Transition Program, I have been keeping dialogue going with The Principal about things that have been on my mind. A couple of the issues we have discussed recently are helping teachers learn strategies to assist MissG cope with changes in routine and unexpected interruptions, how to support her if she is hurt or if another child does something she finds difficult to cope with (an accidental bump that could induce sensory overload, for example) and some ways the school can help MissG manage playground time. I have been grateful to have the help of the Preschool Director with this task. She was generous enough to sit with hubby and I for an hour last week and work on compiling a list of strategies The Preschool has used successfully that she will compile and present to the school. Support like this is invaluable to me, and speaks again of the exceptional community support we have around us.

If you are reading this and thinking that it's all fine for me, as I obviously have a lot of great help around me, I would like to say that while it is great to have the support, much of what I am talking about can be initiated by parents, or even done by parents if need be. If you need ideas to help you get started or tips on how to approach the schools to encourage them to establish some similar programs, drop me a line and I'd be happy to point you in the direction of some great online resources that can help you get started. One worth mentioning up front is Sue Larkeys website, where you can go to sign up for regular email tis on managing schooling for ASD kids. Sue also has a facebook page.

The next step for me is to get social stories organised with our psychologist, so we can use them over the Christmas break.  I'll let you know how we go with that in the next transition to school update.

Monday, November 19, 2012

Half way through Term 4- funding cuts update

Half way through term four. Five weeks to go until a nice long break. Of course, they are the busy last weeks before Christmas where all the end of school year concerts and presentation ceremonies happen. And by the time all the members of our family are covered I’ve got what feels like a million other appointments to go to as well.....  Kindergarten Orientation,  High School Orientation, Ante-natal clinics, Doctor, Psychologist, Psychiatrist, Physiotherapy.....  It’s no wonder I’m feeling a bit overwhelmed. 

I can see that MasterL is feeling overwhelmed too. I know this from observing his behaviour. I also know this because he has told me numerous times in the past week that he doesn’t want to go to school anymore. When I ask him why not he can’t tell me. When I ask him if something bad is happening at school he says not really. He just doesn’t want to be there anymore. He has stopped even trying to manage being in the playground at lunch time, preferring to take himself to the Support Unit to sit quietly with other kids who struggle in the same way he does. I’m not that worried about him choosing this coping strategy- it shows a good deal of maturity in many ways, in that he can see for himself that he needs a break and knows how to get it appropriately. I’m proud of him for that. I am disappointed, however, that he feels he needs to do that. 

To me it says that the cut in funding has led to a reduced level of support which only provides for L’s academic support and no longer for his social support needs. I have spoken to the school about this, and they have told me they can organise an assessment to see if they can attract any more funding to help him individually, but it really is a long shot. 

The new system doesn’t allow for kids who aren’t showing difficult behaviours to get individual funding (and he isn’t showing difficult behaviours at school....yet) and the money they have in the general pool is already being stretched too far. It’s frustrating to be able to see the trickle down effect of the funding cuts starting, but still not being able to do anything about it until it gets worse. He already is struggling with going to school, and I can see his behaviour at home showing this. He expresses reluctance to go, and is having trouble completing homework tasks, yet because he looks ”OK” at school there is unlikely to be any support available. 

It brings up the question again for me....  why is what my son needs less important than what other children need?

Wednesday, November 7, 2012

Some days are better than others....

Photography by Karen Stevenson
Any other U2 fans out there?  The song "Some days are better than others" has been going through my mind lately.

Things have lately. I've had a few teary days, coming to terms with some new things in our family. I've had a lot of busy days attending appointments, making phone calls, organising "stuff". We are OK, but new challenges are tiring and time consuming.

Anyway, I'm just stopping in briefly to let you know that soon I will get to writing some updates on School Transition, and Funding Issues for those of you who are interested. After that I'll try for a more general kind of post.

In the mean time you can read my most recent contribution on the Aussie Mum Network website by clicking here. If you want to check in for general updates you can have a look at my Facebook page.