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!

Happy Mum and Super snails

Peanut went back to his new school today for 2 hours so they can do more evaluations/ assessment to apply for school funding and see if they will put him in the program.  He was so excited to go so I was really pleased. When they opened the door all the EA's and the teacher let out a big good morning Peanut !!  I picked him up 2 hours later and he was really happy. the Teacher told me he did much better and went from 30% to 60-80% on performance and compliance. She said she knows he can do so much better and can show them alot more of what he is capable of.  I don't actually know what fully goes on in there  behind closed doors but he is happy, Backpacker thinks he is being trained for the secret service.  

Teacher mentioned she wanted to ease Peanut into school so he will be back next Tuesday and still go to his language school thursday friday. (my secret dream has always been for him to do monday tuesday ESC and thursday friday LDC)Im hoping they ease him into the same class he has been going to so he will know the kids and that way we might be able to get away with the shared schooling lol). 
After last week I was worried they wouldn't take him now I know they will (even though they didn't exactly say it) the teacher seemed a bit smitten with him. As we left I asked peanut if he had a good time to which he replied "Had very good time"  when we got to the car I asked him if he had had fun at school he answered "Had fun loves school". 

So this Mumma is really happy.

Peanuts language seems to be blossoming. 

he has said things like. 

"Look at my foot"
" he hurt my hand" Shrimples was not impressed big bro can now dob on him! LOL 
" I hurt my leg"
and he is requesting using 4 words now constantly "I want peanut butter toast" 
 "I want more wheels"

 The scripting seems less and the jargon is still there but we are slowly taking over with more meaningful communication and I have this amazing feeling that by 7 year old  ( 2.5 years from now)  his language will only have some minor flaws  Thats the dream.  I know he might still struggle following conversations and answering certain questions. But thats my quirky kid. 

In other news Shrimples wants to be a super snail when he grows up ! AMAZING! he is amazing Im in awe of both my boys every day. 

I find out my kid has Autism and I??

Immediately: I am relieved, then feel validated and then look at the speechy and see her eyes watering up and then I grab a tissue let out a little cry, laugh, ask how many points he got  and high five Backpacker cause we made a bet in the car and I won, thank them and ask what’s next?

Over the next few days: I will ring schools, Ring Autism advisers, Hug my son a lot, talk to friends and try and work out what route you want to take. Its great there is Funding and I’m super excited about it. Financially we can finally do what we want for Peanut without crippling the family, but there is a pressure of not wasting it on the wrong thing. Lucky Peanut is a pretty laid back guy so we have been told as long as we focus on speech the rest will be fine and okay no matter what we decide.  So we are just going to take it slow get this operation out the way and then start him at the education support centre  (yep I made my decision). 

Please note this is just how I felt when I found out I know other people have different journeys and emotions over these sort of things 

 The assessment process :

 We got there and I was about to upchuck  when I get nervous my tummy goes crazy  not butterfly’s but  teacup piglets running around squashing all my vital organs.

DR Huge eyes was there smiling, and the Speechy whom Id like to name wellington (as account on her eyes welling up a lot)  and a pead whom to be honest looks awkward and uncomfortable so her name will be Awks.

Awks told us she would be waiting behind the one way mirror watching and then come in afterwards to chat and would we mind is Peanut was observed by two student Doctors (at Peanuts birth  we said yes to that and by the time he came out there were an extra 8 people in the room at least!), Whom I later found out were Big bang and Smith (there is a reason to these names but I can’t really say it without revealing their real names). So we sat down and Wellington asked Peanut to sit down which he did and they played some games with shapes and puzzles and balloons and bubbles she gave him food and he seemed pretty comfortable with the whole thing you could tell peanut had been in rooms like this  since he was 2 (which actually makes me a little sad) he packed away after each activity and sat nicely he made no eye contact and had no interest in what or who wellington was (PERFECT).

After a good hour and a bit of “play” with Dr big eyes and Wellington writing everything down, Awks walked in and Wellington walked out Awks asked us questions about genetics and such and took us down for Peanut to be measured and weighed and have his reflexes tested this was when we met Big bang and Smith (two quite handsome looking Asian men I liked Big bang best he was nice had a nice smile and a nice jaw line).

They got Peanuts height and weight without a fuss thank god as I was not going to step on the scales with Big bang and Smith present. He was 18 kilos and 105 cms on a flat foot then they needed to check his breathing and heart which all went great (much to my surprise and typical that he has now gotten used to and okay with doctors just in time for his Op next week which is most likely traumatise him and make him scared of Dr's again). Awks went to do his reflexes which was hard as he wouldn’t relax his legs he did the arms fine but kept saying “Excuse me, Excuse me, all done, excuse me” which I thought was very polite and Big bang thought was funny.  

We then went back to the room and Awks kept pointing out Peanuts walking to Big Bang and Smith. We got given some coffee and sat in wait. Backpacker mentioned he thought Peanut nailed it he nailed being autistic! We let Peanut eat, I played with a remote controlled car and Peanut played the ipad doing math, that’s when they came back in. I sat peanut at another table with his ipad. 

They shuffled around us and you could tell they all hated this part Wellingtons eyes welled up so I knew the news and then Awks said it “from what we have found, Peanut meets the criteria  for Autism (those were probably not the exact words but close enough it was a blur to be honest she could have said BLAH BLAH AUTISM BLAH BLAH BLAH and I wouldn't have known). They asked if we expected it, to which we said yep we sure did, there were a few tears (from Wellington and I) and they went on to list all of Peanuts great qualities and how well we had done as parents. He has a good IQ, is great with change and adapts well to new people and places and there is no reason mainstream with an aide would not work for him. But agreed an ESC would be a good boost.  Mummy's instincts are always on the money. That was it really we spoke about who to contact and what speechys would be good for him. We thanked them and walked out.

 I had a lot of adrenaline in me and I was so proud of him and bursting with love for this little man. I rang the schools and talked to principles and got him all booked in to start in 2 weeks. 

ASSESSMENT CENTRAL “ Professionals” are interesting creatures

Well its assessment/therapy central here. After our Speechy and OT came around to work on some stuff with Cameron and train myself in a new technique it was on to the more serious business of DUN DUN DUN AUTISM ASSESSMENT TEAM!



First stop was the psych Dr HUGE eyes, she had massive eyes  and  was a stunning looking lady prob a bit younger than me. Peanut didn’t look at her or respond to her at all. Peanut played while Dr HUGE eyes and I chatted and did questionnaires it took 2 hours. In the end I asked if she thought it likely he would receive a DX and she is not sure!! WHAT! I nearly burst into tears. His GREEN FLAGS are imagination, affectionate(cause of corse half way through he came up for a big cuddle)and lack of obsessions. So she will be contacting the school and I’m hoping they put in a bad word for him. Dr HUGE eyes mentioned severe communication disorder (well yes we know) sensory issues (yep got that) and Anxiety problems (I would have never guessed). But as of yet is unsure if he will qualify for an ASD DX.



Second cab off the ranks the Social worker (I usually hate these people) lets call her SLICK, she was a very slick looking older woman.


Well it turned out better than expected after a very calm relaxed boy to start with I got an upsetting phone call from Nynie which then made Peanut decide he didn’t like this SLICK person (If Peanut had a super power it would be being in tune with my emotions even if I hide it super well and don’t say anything so he put  mummy being upset with strange lady and BAM).


Peanut got upset all of a sudden, wanted her to leave and started to shove her out the door screaming "bye bye, go that way, bye seeya later, BYE!" at her. While waiting for her to leave he decided unlocking the door was a good plan which let our dog out. The dog ran away which triggered a massive meltdown with us all including SLICK running down the street after the dog, Peanut screaming! The dog did a second bolt for the park I gave up (running down the street with a 3 and 4 year old screaming at you is not fun) We turned around to get the car and that set him off screaming more (in peanuts mind the dog was going for a walk without us.) I had to drag him up the street get the boys in the car. We searched for the dog for 10 minutes all the time Peanut is screaming, "Where’s Gilligan" (that’s our dog by the way). I give up and we turn around and go home. Then I see the bloody dog is waiting for us at home! Peanut is screaming cause he then didn't want to get out of the car and SLICK watches me struggling and pulling Peanut out of the car screaming at the top of his lungs. She left after that and we went inside Peanut continued to freak out for another 10 minutes, I filmed it all so I can show them what we have to deal with. The situation was diffused when Shrimples came out with a tray full of cupcakes. 

It really couldn't have gone better if I had planned it. Thanks Gilligan