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.

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

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.

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....