Friday 19 October 2012

Update on goings on

I feel  like I haven't written in a while even though  things have been happening. 

First off let me start by saying the lice went and much easier than I thought Peanut looks amazing with short hair. 

 We have been on school holidays and having catch ups with friends and just relaxing. 

This wednesday backpacker stayed with the kids all day while I did day 1 of a 2 day positive partnerships workshop. 

This is a free program about how to better communicate with schools  how to tackle those tricky teachers and IEP's and how to know your rights and stand up for yourself with out getting emotional. For me its been so valuable Im a pretty proactive mum but sometimes you just get stuck or confused by the system and with Peanut next year attending two schools, Mainstream 3 days with an Aid some of the time and Early intervention the other two days this is going to come in handy. 

Im not super pleased with the mainstreams schools responses so far they have been a bit hit and miss my initial reaction to the school was good ( its big but pretty and well established nice trees and the kids seems okay) but then I found some flaws and I had people chirping in my ear " oh they are not a good school the students are messed up  blah blah the teachers can't control them"  and various other bits of wisdom (I didn't ask for) we live in a low socioeconomic area and there are children with all sorts of needs behavioral and emotional which is why I was actually told in the first place they perhaps would be better able to deal with a child with autism compared to the higher end schools with middle class students ( mainly people from working class pasts immigrating and pretending to be above their stations).  
Surely that makes sense that the funding allocation and understanding of special needs would be better at a school thats seen all sorts of children from all walks of life. yes / no?  
Meh who knows (not me).  Private is too expensive for us I don't want to send my son to catholic school due to the fact I might burn alive when I walk in. Id like to walk him to school and I've not heard great things about the other school in walking distance and its on a main road. There are a few others public schools  not to far away 5 - 10 minutes drive that have good reputations with special needs but I want to give his local school a chance. 

Any way I have started rambling back to the facts  

I now feel empowered and like I have the right tools to approach the schools and ask for an IEP or CAP meeting before next year and I will be ringing about it next week I want to know how much aide time and If we can meet the aide and teacher for next year and see the class room, I can bring my LAC along and therapy focus if I feel I need it. 

The  program also made me sad that so many parents and carers felt alone.  I have Skips and they have been a wealth of knowledge, support and understanding and because of this I feel positive and prepared. Some of these mothers and fathers were lost, never pushing for things they are able to receive no knowledge about programs and funding options they are entitled to. 

Part of me got angry at them. "where have  you been  why have you just been sitting back excepting this you have no right to complain if you never went out and scratched the surface and pushed for more information" some people had excuse after excuse and were so negative but then I was angry that the information can be so hard to find. By the end of the second day most people had made friends and started to become more positive and were ready to take the next steps but there were still a few that still had not grown like they were upset they didn't get that special and all mighty magic pill that was going to "fix their child"  any suggestion  people come up with was knocked down even though they had not tried it and that made me mad!  

I think its the lack of knowledge people have about what they can and cant apply for and the fact people aren't working together for each child individually because they don't know where to start. We are only at the beginning of my journey and Im ready  to roll Im nervous and excited and Im sure we will have good years and bad years but I feel better prepared. I also feel like Id love to be a part of the disability sector helping those familys and children get what they rightly deserve. 

In Other news Peanut started Early intervention ESC Thursday and did well the teacher mentioned "he has a few scuffles over compliance but things he will get there soon". 
He has a little boy in his class whom is the same age and will be attending with Peanut until the end of 2013 his mother seemed lovely. The others kids will be heading off to mainstream or esc year 1 at the end of this year as they had been there nearly two years and were close to or already 6.

On Thursday after school Peanut started speech therapy with his federal funded service provider. Peanut did really well considering he was tired. His therapist (now named Irish) used the words visual genius she said he has very good with nonverbal language (eyes gaze pointing etc - that surprised us) and also his vocab and pronunciation was good (this we already knew). 
There was one bit that nearly brought me to tears. The speechy started to play simon says and Peanut was doing really well then she wanted to stop and get him to go get something but Peanut wanted to continue and he said Simon says close your eyes, so she copied and then he said close mouth and close chin (lol) and finally close ears she helped him along with the simon says bit but I was so proud of him Ive never seen that side of him before he wanted to take control in the correct way and that to me was the first spark of proper joint play with anyone else outside the family and certainly the only joint play Ive seen that require verbal skills ... so cheers to that!







Wednesday 3 October 2012

Silence is underrated

Peanut goes through ups and downs like the rest of us. 

He has massive burst of improvements and then he stops still, stagnant or sometimes even goes backwards with some things. This time it started last week after he learnt to ride his bike. His scripting went up massively jargon came at me from every angle and bizarre kooky and strange noises came out of his mouth like Id never heard before. The teeth grinding escalated. There is never silence and for a child who can't communicate he sure never shuts up!.. does it drive me mad?  YEP you bet, Does it get on my nerves? YES. Do I want to  put tape over his mouth and just bask in the silence? yes I do *hangs head in shame* but I don't. What I do do is get frustrated I yell at him to please be quite and he apologizes and then I feel even worse he can't help it  he is not doing it to annoy me he is doing it cause his brain can't stop him or he has no idea its as annoying as it is.  He always goes like this for a few months before another burst but I never get used to it I always feel like we have taken a huge leap backwards.  But I have to remember where we were last year and its all positive and his social skills are coming on slowly. Today he  went and cuddled a stranger and was super affectionate to MURHface (friend since year 4) 


In other breaking news Peanuts got LICE !!! hair lice.. so  mummy took action and peanut now has a shaved head and tea tree oil covering his scalp.. I will win this war !!!  I may have had to shave peanut gorgeous thick hair but it will come back but I swear you may never come back BE GONE LICE BE GONE !!!  on a plus note he must have got very close to a kid at school to get it !!  whoop whoop maybe it was social contact.  And he still looks mega cute !!