Friday, 13 January 2012

Here We Go Again!

School holidays are a scary time for most parents,but for those of children on the Autism Spectrum they are especially frightening. Though most of our children hate school and the daily pressure they have placed on them, school holidays are such a change in their routine they can't help but be effected.

I personally am in the middle of our Summer Holidays. 6 + weeks with 2 ASD kids at home (as well as my other  2) . It's tough...

I have Ryan who stresses all day every day and so needs to question everything.  I think I have mentioned before we call him  "The Quiz Master" Which is really funny unless you are the one who is expected to answer the questions...ALL day,EVERY day!

And then there is Pierce. Now, Pierce is cute, funny and really,really smart. He also fixates on things...and he has this big ASD trait that is a problem  with  Theory of Mind. This is a trait that is mostly only known to ASD parents. Not highly publicised, though it should be. I will include a link to explain...

Basically, he thinks we all think what he is thinking.

So, when Pierce is fixating and wants us to do something to do with his fixation he CANNOT understand that is is NOT the most important thing in the world to us.

ie: At the moment Pierce is fixating on a PS3 game called Portal2, and to be more specific a little known character of the game called Wheatley .As always there is no reason why Pierce is fixated on this character...he just is.
So, he is not interested in the game unless Wheatley is in it. Which means my older son has to play the levels until Wheatley is involved. I have also been harassed ALL day because Pierce has searched You Tube until he found a way to make a Lego Wheatley.Of course this involves obscure pieces that we don't have or I don't have 5 hours to sit down and find.This is also a Theory of Mind thing...I want the Lego Wheatley so build it NOW! Pierce just does not get this and when you can't do what he wants it's not pretty! I get torn between anger and pity.Imagine not being able to see someone else's point of view? I witness this daily and the effect it has on my boys and after my initial reaction of losing it,try to remember how hard their life must be.
All I can do is wait for them to calm down (that can take a LONG time) and then explain how I would really like to do what they want but it is not always possible.
Life sucks a LOT for my boys. I would hope  the school holidays are a break for them but as I said such a huge change in routine is difficult.

In two weeks time they are back to school and another routine change.I know I have at least a term of difficult behaviour while they adjust to their new teachers and class mates. I also know I have at least a term of their new teachers and classmates adjusting to them and another term of them settling, which means my boys actually  lose 6 months of learning while everyone adjusts! This would explain why Ryan,who  is going into year 3 is still at a year 1 level of learning.

I have no idea how to fix this other then home-schooling,which is a whole other topic. My baby,Darcy, will be at school in 2013 and I figure if Ryan has still not progressed I will apply for part-time schooling for him and maybe we can catch up and ease the anxiety but still give him access to his friends and socialisation that he needs.

I know most parents are counting down the days to the return of school and I am too but I am also dreading it as I know what is ahead. As I titled this blog post...Here we go Again,and it does NOT get easier!

Monday, 9 January 2012

He said/ She said...

I think the majority of my Blog followers are also Facebook friends so are probably aware of recent events. For those who aren't, check these Blog Posts

So,I  usually stay away from drama and confrontation but due to the aforementioned events I feel the need to defend myself.
I have been accused of being self serving, self centred and placing my own needs before that of Special Needs Kids and their parents.
Show me how protecting SN  parents makes me a bad Mum and how people who only know me on Cyber Space are able to judge my parenting skills.
My name has been included on a list of people who are supposedly deceitful ,this list has been posted on FB,  Twitter and as a comment on a blog...but I am the one acting in a defamatory way?
I have had text messages threatening to sue me,questioning my parenting skills,having my own agenda AND of  being a Desperate Housewife (If I am  supposed to be like the women in the TV show,THANK YOU.) I would love to know WHAT this agenda might be?
What am I gaining? I have lost friends, been insulted and harassed, been threatened with litigation. Apparently because I have a plan?  Please tell me this plan, enlighten me! As far as I know I am the one losing in all of this.
Unfortunately the people who have questioned me were people I considered my friends.This has hurt more then anything.As a SN Mum I often feel isolated and misunderstood. As sad as it may sound Facebook is a place myself and others can find  Mums who feel the same way. Imagine my sadness when people I trusted and relied on judged me without asking why I made such a heart wrenching decision.
Imagine being in my shoes...Four kids, 2,maybe 3 with Special Needs and the threat of a law suit hanging over your head..
As I  said...most of you know me...He said/ she said. Who's right/who's wrong???


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