Sunday, 1 April 2012

30 DAYS OF AUTISM... The Bloggers!



30 DAYS OF AUTISM would like to welcome  the following bloggers...

CGregoryRun
http://cgregoryrun.blogspot.com.au/

Stuck On Shelby
http://stuckonshelby.blogspot.com.au/

Life Is A Puzzle
http://alittlepieceofthepuzzle.blogspot.com.au

Seven Yuck Mouths & Autism
http://www.racersmommy.blogspot.com.au/

Kat's Cafe
http://katscafe.org/

Autism From A Fathers Point of View by Stuart Duncan
http://www.stuartduncan.name/autism/autism-awareness-month-getting-started/

Caden's Tale
http://cadenstale.blogspot.com.au/

Nathan's Voice
http://nathansvoice.blogspot.com.au/

Making Time For Mom
http://makingtimeformommy.com/ 

30 Days of Autism
http://30daysofautism.wordpress.com/ 

Special Happens
http://specialhappens.com/

Just Bring The Chocolate
http://www.justbringthechocolate.com/ 




A big thank you to Seven Yuck Mouths for helping with the organisation and Kat's Cafe for our beautiful *Button* and Poster.Thank you ladies!

I will be reposting these links daily and adding new bloggers as they join us. I hope you all enjoy the next 30 days and remember to LIGHT IT UP BLUE!

Friday, 30 March 2012

30 DAYS OF AUTISM... Prologue Part 2

My little idea for 30 days of Autism has somehow gained momentum...Mainly due to the enthusiasm of my friend and fellow Blogger, Lisa Gallegos, of  Seven Yuck Mouths and Autism. http://racersmommy.blogspot.com.au/

Thanks to Lisa we have at least another 6 Bloggers joining us to spread the word during Autism Awareness Month. Another Bloggy Mum is making a 30 Days of Autism Button for us all to add to our Blogs so you can follow the fun easily :-)

Now I need to finish my Prologue with Ryans story...

Ryan is my second child,now aged 8. He is commonly referred to in  our family as *The Shadow*. MY Shadow to be precise. We are *tight*. Where I go he does too.He is also my helper in the mornings. This is a nervous time for him, as he is a time keeper and worries constantly about being late for school. I have counteracted this by giving him jobs, which he does willingly and  has our morning routine down to a fine art.

Ryan,like Pierce has Aspergers.His diagnosis was not as *easy* or as fast as Pierces.

Like Pierce,Ryan arrived on his due date. I had a textbook pregnancy, thought the morning sickness was a killer (didn't have it with my first born).

Labour was a long drawn out affair with broken beds and many other set backs and  Ryan stuck crowning for a few hours. Because it was such a long 2nd stage Ryan had electrodes attached to his head to monitor his progress.he never skipped a beat so I had to endure the endless hours of nothing happening at all!!
He was finally delivered at 8.09 pm.Because he was stuck in the crowning position for a few hours (ouch!) he had an indent around his skull.I immediately thought of the movie Coneheads! Apart from this he was big (9lb) and beautiful. He was pink and chubby and I adored hearing the Midwife tell her trainee that he was a perfect specimen and this is what  a drug free labour and healthy pregnancy produces. He got a perfect score on his Apgar, which is apparently an unusual occurrence.

Ryan was an easy baby.He loved routine. Loved sleeping in his cot,swaddled tight and lights  off.
He hated being cuddled unless feeding and NEVER went to sleep anywhere but in his cot. If we were home he was perfect but he did not *travel* well.Any change to his routine was met with distress. This did not really concern me as with two children under two I did not go out much. Ryan was quiet and serious. I called him serious Sam but again was not concerned.

Then Ryan turned one and TURNED! OMG my quiet, easy baby turned into a nightmare.he screamed all day and all night. He ran away the minute my back was turned and then he screamed some more. I was lost and confused and also pregnant with my 3rd child so totally exhausted.

Ryan was the easiest child to breast feed but impossible to wean. Extremely fussy with solids,would only eat store bought bland baby foods (heartbreaking for a Mama who is a chef) and had his *Bo Bo* (bottle) until almost 5 years of age.

He was a tornado... ran, jumped, ran some more and wrecked everything around him. I sought help many times from our GP who told me he was *just a boy and on the extreme end of toddler behaviour*.

Ryan also head banged and rocked and had no  interest in toys unless it was throwing them over our back fence or balcony. He also loved eggs... throwing them, and flour, emptying it on the floor and rolling in it!

Still he started Preschool and although had extreme separation anxiety and from what I could see no real  friends he slipped under the radar. I worried every day I dropped him off about the lack of friends and watched him pace the playground as I left. He somehow had found a way to blend and other then a couple of teachers mentioning he was *unusual* he did ok...

Then he started school. Ryan fell apart almost instantly. I had been struggling with Ryan and his extreme behaviour for years at home but recently my time had been taken up by Pierce and his assessment period and subsequent diagnosis.

The day Pierce was diagnosed was also the day of Ryans first Parent Teacher interview. I arrived stressed and numb from my meeting with our Paediatrician. I should mention, the whole time our Paed was rattling off * traits of ASD* I had these alarm bells ringing in my head, saying *RYAN<RYAN>RYAN*

I sat down with Ryans teacher,a beautiful girl who has taught all my boys, and heard these words...* We have some very real concerns with Ryans behaviour and feel you need to have him assessed*...Yes,I handled it beautifully and burst into tears. I told his teacher of Pierces diagnosis and my concerns about Ryan and she was lovely and amazing and was such a huge support during Ryans diagnosis. She also had Ryan in her class for over 6 months undiagnosed so no support but she was amazing.

So, the roundabout started again, Ryan was different. He was extremely hyperactive and at first glace seemed very ADHD. I was lucky that during our first Psychologist appointment he displayed  some very ASD traits. I arrived at the Paed appointment with a report stating they felt Ryan was possibly on the Autism Spectrum but displayed extreme Hyperactivity that needed to be addressed.

So began our journey with Meds.I have addressed this issue in a previous post  http://www.morgansx6-aspergersrules-morgansx6.blogspot.com.au/2011/11/can-of-worms.html

It became very clear as Ryan got older that he was indeed *on the Spectrum* and at the age of 7was finally diagnosed with Aspergers. His Hyperactivity is actually a reaction to stress...he now calls it the *jiggles* and as he has grown older his Aspie traits have become more obvious.

So with two boys with the same diagnosis I have had two very different journeys...I am on another journey now with my daughter but will post about that soon.

I am excited about April and Autism Awareness Month and 30 Days of Autism...Our kids are amazing and the world would not be as wonderful without them. We need to get the word out. Read and share friends.
ASPERGERS RULES!

An Ipad for Pierce

Thank you to everyone who donated money to Pierces iPad fund. We were overwhelmed by the generosity of so many people. I thought you all might like to see a photo of Pierce with his iPad. As you can see he is very happy. I promise to keep you all updated on his progress and again thank you. <3

Wednesday, 21 March 2012

30 DAYS OF AUTISM... Prologue

April is almost here and for those of you who don't know April is Autism Awareness Month. In Particular April 2nd is *Light it up Blue* Day...
This means that on April 2nd you need to shine a blue light to raise awareness for Austism. Here is what some people do...



If this seems a little extreme then you could always do what I did last year





Basically you replace your outside light, or *porch light* , for my US friends, with a blue bulb and shine a light on Autism!

I have set myself a challenge...Last year during April I posted on Facebook, something everyday to do with Autism. A link, a quote, an insight. This year I pledge that Aspergers Rules will post daily! (YIKES! I can't believe I said that).
It  may be just a few photos or  something to do with my Aspies day OR I may steal some blog posts from my favourite Bloggers! Actually, lets send out the challenge...Who wants to join me? We can do an ASD Blog Hop!

I am going to pre-empt April with a couple of  posts on the beginning of my Journey with Austism.
I will start with Pierce.Pierce is my youngest boy, my 3rd child and has an older brother with Aspergers. He was diagnosed first so I will start with him,  as his dx was the beginning of our journey...

Pierce was born on the 18th of February, his due date. Funny how my two Aspies arrived on their expected date of arrival, following a schedule even then?
After a week of  Drs and Mid-Wives fighting over Wether or not I should have a C-section due to Pierces apparent largeness and an actual trip to pre-op that was cancelled due to an emergency,  my waters broke at home ( a first for me) at 10.30pm on Feb the 17th. I was exhausted from all the deliberation and decision making so decided to sleep on it...I awoke the next day determined to have my baby naturally.  I was induced after it became apparent that labour was not going to start naturally and as my waters had broken many hours before we were getting into danger zone for infection. Four hours after my drip was started and at maximum dosage my contractions finally began and WHOA, did they begin!!! Induction is not for the feint hearted...It is fast and full on. 0-100 in  a very short space of time. 1.5hours later, 2 shots of Morphine (no effect) and Penicillin for an apparent infection, Pierce arrived. He was huge 9lb 8oz and battered...he had decided to he wanted to come out with his fist wedged into his eye socket so had bruising and looked as though he had spent a bit of time in the boxing ring! However he was healthy and I once again patted myself on the back for giving birth to another *perfect* child...

Fast forward almost 3 years and Pierce starts Preschool. I was pregnant with my fourth child and decided to start him at preschool before the baby was born so he was settled before she arrived.

All seemed to be going well and baby number four a much wanted daughter arrived...Not long after Pierces Teacher called me aside and requested a meeting to discuss a couple of concerns she had with Pierces behaviour.I was horrified! Was he being naughty I asked? No,not naughty but we have some concerns we would like to discuss... Thankfully I only had to wait a day for the meeting and Pierces teacher was an amazing girl who made it as pain free as possible. She had noticed Pierce had some unusual behaviours, was not at all interested in his peers and had been having sudden unexplained *tantrums* that lasted for an unusually long time. This had been happening since he started but they wanted to wait to see how he settled after Darcy was born....his behaviour remained unchanged and as she said was unusual in the fact that he was compliant most of the time.

So began the assessment period. First the Preschool asked if I minded if a *Parents as Teachers*  Rep observed Pierce at school and at home.Of course I agreed, I had also had difficulties with Pierce at home. Although he was the easiest of my toddler boys he was very *quirky* and preferred his own company and had recently become a nightmare to take anywhere...I of course expected the outcome to be bad parenting.I should mention that I had, since Ryan and Pierce were born, attended Triple P and 123 Magic workshops.Neither programs had worked with my boys and I assumed I was either a hopeless Mum or had missed a day!

So, Mr Parents as Teachers came and observed and reported *nothing environmental* ...meaning I was cool and doing a good job apparently.

Next it was decided we should visit a Psychologist who then recommended a visit to a Paediatrician with a report from school. Before the appointment Pierce had to have blood tests, stool cultures and various other tests done. By the time the appointment day arrived I was sure my son was dying!

The day of our Paed appointment arrived and I was a wreck. Our Dr read all the reports and test results,asked some bizarre questions (I thought), like, does he hate loud noises, Is he affectionate, does he hate wearing shoes, does he play appropriately with toys (OMG what is appropriate toy play I was thinking???), How does he respond to changes in routine? I answered all these questions but was thinking...What the hell is the guy on about?

After over an hour and Pierce becoming increasingly distressed and trying to abscond (I didn't know this term yet BTW) our Pead asked me if I knew what Autism was? I replied, "Yes they are children who don't talk and are like Rainman. Pierce isn't Autistic he can talk"  ...(Oh how I shudder at that reply now!)
So started a whole list of  Autistic *traits* and talk of Umbrellas and Spectrum's. All of which meant  nothing to me at the time. Next came the bombshell...."I truly believe Pierce is on the Autism Spectrum, most likely on the high functioning end and I suspect Aspergers Syndrome".
Ok....I didn't even cry. I can't actually remember my reaction but I know it was weird. I did ask what I could do for him. Dr C told me to go home, Google and call our local Early Intervention Service. I did both and remained in shock even though with every click of the mouse I knew my son did in fact have Aspergers Syndrome.

SHIT! I have a child with Autism...Aspergers??? Took a while to sink in and I was very cool about it for about a week, then, after my first call and subsequent visit from our local EI service, I lost it. I cried for almost a year. The more I read and learned the more I cried. I went to workshops, support groups, therapy appointments and all I did was cry!

But I survived and I am now the Mum who supports all the Mums with a new diagnosis...I even survived Pierces older brother being diagnosed, but that's a whole other Blog Post....

Tuesday, 14 February 2012

What Pierce hates...

I have read through my last couple of posts and decided it was time for some laughs....I have also changed this blogs photo as it is Pierces 7th Birthday on Saturday. He has earned his time in the sun and this post is about him and dedicated to him. I will start with my Facebook status update on his birthday last year (BTW I love the new timeline for the fact I was able to find  this in an instant!)...

Happy 6th Birthday Piercey Morgan! It's been a wild and crazy ride but you have already taught me more than I can ever hope to teach you...It is an absolute privilige to be your Mum. xox


12 months later and I feel the same...This boy is amazing. He has what I call a *Rock Star Personality* .
He's rude,obnoxious and totally quirky but  people,kids and adults alike,love him and want to be close to him. This in  itself causes a problem. Pierce has Aspergers, so not only is he not really interested in other people, the further away they are the better! He does however LOVE some people and when he loves, he loves completely. I think he is the definition of cool.

So the title of this post is *Things Pierce Hates*. His favourite reply to most of my comments/suggestions is, I hate that or why would I want to do that,I hate it. One day,in a moment of frustration I asked, "What don't you hate Pierce?" . It was obviously a rhetorical question but I forgot Aspies don't do rhetorical. A couple of days later Pierce came up tome and said....:I think what don't I hate  was a stupid question,( I am stupid a lot in our house),but I've been thinking and I can tell you what I do hate." 
So here is the list...
  • Birthday Parties (they apparently suck and why would anyone want one?)
  • Darcy...I love her cause she's my sister and I have to but she is really annoying and I hate it when she screams.
  • shoes, they annoy me.
  • When you (that would be me) ask me "how was school?That's a stupid question." ( again I am stupid a lot in our house)
  • Healthy food. I am  allergic to it. Allergic means it makes you sick and healthy food makes me sick
  •  Ryan...(again loves him because he is his brother and he has to) but I hate it when he goes crazy and hits me. I want to kill him!
  • Japan ( he is NOT racist read the rest of this) because they kill whales.
  • Cyclones, tsunamis, tornadoes. because they are scary
  • clothes that are itchy
  • shops. Except for tweed city but I hate that new bit ,it freaks me out
  • You (me again) when you won't let me play the PS3 or computer
  • nightime...I just like daytime
  • I hate it when people want to  cuddle me and kiss me and touch me..why do they do that?
  • Things that kill, like bombs and guns ( although he likes his Ps3 games that he uses bombs and guns on but that is different cause it is fake)
  • white bread(shhh don't tell him it's healthy)
  • meat,except for pig (bacon) and KFC nuggets
  • noisy stuff like the vacuum and the lawn mower and when the stupid birds outside are loud and I hate the dryer.
  • writing, it makes  my hand sweaty (?)
  • when I have a different teacher. 
  • when kids are naughty and get in trouble
  • blood, I really hate blood I think it will kill me 
  • being sick,it feels strange and I think I am going to die
  • You (that would be me again) I really hate you when you make me do  stuff I hate.
I hate anyone who doesn't know what an amazing child Pierce is.
 I already have this years Birthday status ready...
Happy 7th Birthday Piercey Morgan. I am sure all my children have the ability to make their mark on this world but you are the one I am sure can change it. 

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...
http://en.wikipedia.org/wiki/Theory_of_mind

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





http://fourmonkeys4me.blogspot.com/2012/01/what-is-cyber-bullyingharassment.html

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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