30 DAYS OF AUTISM...Day 2

Today Aspergers has me beaten...Today of all days. World Autism Day when I had a beautiful post planned to shine a light on Autism and all it's beauty, when I had planned to tell you all a thousand positives and reflect on all I have learnt on my journey and how Aspergers has made me and my family, better,stronger people.
Instead I feel battered. My heart hurts and I can not think of one good thing to tell you.
Pierce has had a crap day , starting this morning with a massive meltdown due to having a relief teacher.After what seemed like an eternity but was only minutes of him clinging to me begging No.No.No. I left him in full blown meltdown.His Aide running to lock the library doors to keep him  safe while promising me he would be ok and to go.go.go. My last glimpse was of his face pressed  hard against the glass door. His hands clawing as if he could dig his was through to me and the safety of home. I left, with every single part of me aching to whisk him away. He has barely held on all day and has cried and screamed ever since I picked him up an hour ago. His eyes are raw his teeth are clenched,he is on the edge and already refusing to go to school tomorrow, even though his usual teacher will be back.He is holding the palm  of his hand over his heart silently counting his heart beat in case this too fails him. I am worried that pushing him to stay at school today has backfired and instead of teaching him that relief teachers are ok and he can survive it, he is now full of fear and a hatred for school. Have I let him down? He seems broken.I have let him down.
His older brother Ryan is struggling too. It is the last week of term and he is tired.Tired of fitting in, tired of struggling to make sense of a curriculum not designed for his beautiful mind, tired of  holding it together when he too wants to  fall apart.
My eldest Shaun is over both of them and the drama,the screaming, the constantly having to give in to them.He is retaliating...he is baiting them which is of course being met with anger of epic proportions.
I am exhausted from the stress of wondering all day if Pierce was OK and dreading everything I am dealing with now.
In another hour I will pick my beautiful daughter Darcy up from Preschool. I will be told she has had a beautiful day. She probably has but I know that beautiful day will also have been a day of silence with her teachers having to entice a couple of tiny whispered words from her perfect mouth.Maybe there were no words and as we leave and walk to  the car and she will finally spill all the words she has been swallowing all day I will hear her friends remark things like *I didn't know Darcy could talk* or *Darcy doesn't use her words*. I will praise her for her drawings and her craft and inwardly sigh and wonder why my gorgeous girl won't talk at school and then I will spiral into fear and dread at the thought of our appointment with the Psychologist that is closing in as I mark off the days on the calendar. I want to help her but I don't want to do all this again.
Aspergers has me beaten and I want to crawl into my bed under the covers, much like Pierce is doing now. I want to sleep and sleep.I want to wake up and find that someone else has cooked dinner and put my children to bed and dealt with the rigours and rituals that accompany meals and bedtime routines in our house. I want someone else to tuck Ryan up tight 15 times and assure him he is safe. I want someone else to give them their meds so that is one less thing I have to feel guilty about.
Noone else will.I will and I will get through tonight and I will eventually get it all done. I will wake tomorrow refreshed and with today a little less fresh in my mind. I will hope that tomorrow is better and I can once again see the beauty in Autism. Hopefully tomorrow I will win.
My blue light is ready and I will proudly and boldly shine it for my boys and maybe for my daughter and for all of my friends and their beautiful children who live with Autism daily. I will flick that switch and I will know that Aspergers does not have me beaten, not today, not any day.

Please follow the link to my blog roll for 30 Days of Autism. Support these wonderful parents who have dedicated their time to raising awareness.
http://www.morgansx6-aspergersrules-morgansx6.blogspot.com.au/2012/04/30-days-of-autism-bloggers.html

30 DAYS OF AUTISM...Day 1

As 30 DAYS OF AUTISM is all about awareness,I thought it would be appropriate to begin with an explanation of Aspergers Syndrome/Disorder.April is Autism Awareness Month but I have decided to only post the criteria for Aspergers as my Blog pertains to this particular end of the Autism Spectrum.Hopefully some of our other Bloggers can highlight some of the other conditions on the Spectrum as listed and described here by Wikipedia  http://en.wikipedia.org/wiki/Autism_spectrum 
I have listed the Diagnostic Criteria for Aspergers Disorder as published in the DSM IV(Diagnostic and Statistical Manual of Mental Disorders ). I know that not all children are diagnosed using this manual but it is the criteria used to diagnose my children so is the one I am familiar with...

Diagnostic Criteria for 299.80 Asperger's Disorder

 

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV] (I) Qualitative impairment in social interaction, as manifested by at least two of the following: (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction (B) failure to develop peer relationships appropriate to developmental level (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) (D) lack of social or emotional reciprocity (II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following: (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (B) apparently inflexible adherence to specific, nonfunctional routines or rituals (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) (D) persistent preoccupation with parts of objects (III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning. (IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years) (V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood. (VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

I am often asked what the difference between High-Functioning Austism and Aspergers is and as yet have not come up with a very good answer. This seems to be a hotly debated topic among parents and professionals.
I can say that my children's Paediatrician, who gave our formal diagnosis will not diagnose a 
child who has had a speech delay at any stage of their early childhood development with 
Aspergers. All professionals seem to have differing views on this though and I am no where near 
qualified enough to comment on who is right or wrong and as far as I am concerned it is not 
something that troubles me enough to look into it further. I do know of quite a few children 
diagnosed with Autistic Disorder having their diagnosis changed to Aspergers when they were 
no longer considered to have a deficit in this area.

Here is also a link to Professor Tony Attwoods page and his description of Aspergers. I love Professor Attwood and his opinion on What is Aspergers?


http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=62&Itemid=719


Although I have two children with Aspergers, diagnosed using the same criteria, they are completely different individuals. This is true of all the children and adults with Aspergers I have met. One of my favourite quotes is by Professor Tony Attwood and goes something like this...

"To know someone with Aspergers does not mean you know Aspergers"

This link is to the list of Bloggers joining me on our 30 DAYS OF AUTISM journey,and the links 
to their Blogs. Please visit them all and help us spread awareness during April. 

http://www.morgansx6-aspergersrules-morgansx6.blogspot.com.au/2012/04/30-days-of-autism-bloggers.html

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!

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

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....

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.