Thursday, 3 July 2008

Autism Awareness

I don't often talk much about autism on here, but tonight I will share. A few weeks ago an old friend got hold of me telling me of her story and how she had been interviewed and her story put in the paper and the publisher wanted someone local with an autistic child to interview. So she contacted me to see if I was interested.....so on Tuesday I had the lady over here to interview me. I was a bit nervous being a very shy, keep to myself kind of person, but once I started talking it was all good. So we started at the start when Steven was diagnosed and worked our way through the start of using visuals with him and then how at the age of 4 he was finally saying single words and then putting two words together. Then off to kindy where we had great support from and ESW and the kindy teachers the joys of Steven starting conversations with the teachers and starting to interact with his peers...and we talked about the lows, the high percentage of families with special needs kids that end in divorce, the lack of routine of good sleeping habits and Steven was shocking for this. He would go to bed at 7pm be awake again at 10pm and then not go to sleep again till about 1am then he would sleep till bout 4am, 5am if i was lucky and then that was him till bedtime that night he was ready to start the day. And even now his sleep pattern isn't great and he was up at 3am this morning ready to start the day. And then we moved onto school, school was a where you move form kindy where you get all the support in the world and then school its like they get you into mainstream school and then everyone runs away and says to you okay your child doesn't get ORRS funding and because he is toilet trained, can say the alphabet forwards and backwards- saying it backwards is something i cant do unless I think about it, he can count to 100 so he doesn't need support in the classroom. School was hard and is hard but this year has been so much better. Steven has a teacher that wants to understand not just what works for him but she wants to understand and know about autism and its great. So the interview was great and she will do a draft copy and email it to me to go over and delete anything i don't want in there, she also took a couple of photos from a mini album I have made of Steven and all his lines. I dont know how much everyone knows about autism and for me when i heard the word for the first time i thought what on earth is that...there is loads of information out there on the Internet.....Autism is a developmental disorder affecting social and communication skills. Individuals with autism often have accompanying learning disabilities but whatever their general level of intelligence, they will share a common difficulty in making sense of the world in the way others do. In most individuals with autism, certain skills will be better than others so that their development will not only be slower than usual, but be uneven and different from most individuals with other learning disabilities.
One of the things that Steven did alot of when he was younger was making lines with everything, this is a common thing for kids with autism to do. I will post some photos tomorrow..some of his lines/patterns are very interesting.
We have become very use to routines in this house as without them there would be alot more stress for Steven. When he was younger I remember there were certain toy cars that were used in one room but not another and if he couldn't find that car look out, so for that reason the boys have so many toy cars cause you can imagine if i gave one away that he used for a certain routine of his there would be hell to pay if he couldn't find it. but as he has gotten older hes not so fixed on some of his routines. he knows on Monday nights he goes to a friends house and Wednesday its dads house for dinner and home at 7pm and then Friday to dads house for the night and then i pick them up on Saturday at 4pm...those routines he likes to stay the same. he has been getting a bit stressed with school holidays coming up, he enjoys the holidays and not going to school but its a change that he has to adjust to first, school gives so much structure and routine to his days which he loves.

Well it seems since my last post with all the comments that I have got a lot of stuff.....the shelving that is in the first picture is pretty much the only storage for the boys games and my scrapbooking stuff. Liam has a few games and puzzles in his room, Steven doesn't have any in his room because at night he plays with anything that is in his room. So that's where they all go.. i do have a cupboard for all the games but since moving form a big 4 bedroom house to a small 3 bedroom place(well i reckon more 2 bedrooms and a office as Steven's room is smaller than the bathroom so I'm sure its more an office than bedroom)so there is no room to put a storage cupboard. but the plus to a small house is less housework, and less room for the boys to spread their toys. As for scrapbooking stuff, I don't have that much stuff do I ladies? And on that note I'm off here be sure to look back tomorrow at some stage and I will hopefully have some photos of the mini album I have done for the celebrity challenge over at the sketch book.

6 comments:

Trace said...

That took guts Alison, good on you. The more that the general public is aware of Autism the better. Big giant hugs from me! When I read about his bedroom it made me think of one of our wee lads who has a matress on the floor, and that's it - same reason, he would just stay up...and because of some of his other health problems he his tube fed, but because he speaks, and is toilet trained...no ORRS...you gotta wonder. Mind you according to Labour, if they get back in they are overhauling GSE...I don't know what the hours are like where you are but our most high needs children get a maximum of 7 hours a week support...

Anonymous said...

I agree with what Trace said that took gut to share Stevens story with a journalist. I have heard about the difference between kindy and school support. It's a stark comparison. Thanks for sharing a snippet of your story with us.

Anonymous said...

Well done for being so brave and thank you for sharing this Alison. It is really interesting reading. My sister has a boy with fragileX which has some autistic tendancies and another boy that is showing signs of aspergers or somthing else. So I can understand how hard things can be sometimes.

Anonymous said...

Alison, I commend you for being brave and courageous enough to share this story. It's so touching to read, and I think there should definitely more awareness of Autism. Good on your for doing that interview, it must have taken a lot of strength for you to do it, but it's such an amazing thing. Your story could really help change society and change the lives of another family who perhaps don't have hope that things CAN get better.
It's terrible that the support Steven had at Kindy was not there when he started school. I know a few other people who are having a lot of problems getting help for their autistic children in the NZ public school system - this needs to change. Sharing your story could be part of that change! Exciting!
You are so inspiring!!!

Anonymous said...

I am with all those above comments - go you.... I know definitely that there will be a Mum or Dad out there that will read this article and suddenly feel ok about their situation , after reading all your words.... As for the LACK of funding between EC and school as an early childhood teacher it is SO scary farwelling our babies into a world with no support after having so much (well case by case) with us... our prob in wgtn is getting workers to work with our darling children... we have hours waiting right now for one child and NO support worker - so frustrating. I also relate to the school thing.. our local school is currently cutting the teacher aides to re-surface their tennis courts - what the *&%$ is with that.... we are constantly telling them to pull their head out!!!!! Some of them in the Ministry need to be shot!!!!! or retired!!!! (can you tell I am worked up alongside you!!!!!)

Mrs Frizz said...

Wow - made for interesting reading ... when the story goes to print ... would you please send me a copy or link it. Would love to read it in its entirety.

And it's amazing the priorities of some. The powers that be - ummmmmmmmm ... no comment!