Monday, 30 April 2012

Aspergers Rules 


While visiting a Special Needs Blogging Group page on Facebook recently I read with interest an invitation to participate in an online event highlighting Autism Positivity. Here is a  LINK for you to find out how this event was started and why I am blogging today.

I will leave the philosophising and psychology up to those more knowledgeable and eloquent then me. I would never presume to understand what life with Aspergers is like so will leave that perspective up to those that do also. Instead I  will write this blog for and to my boys who live with Aspergers daily and have on more then one occasion declared they *wish they didn't have Aspergers*. I will write if for the days when they  feel they are not good enough or think that Aspergers makes them them less then their Neurotypical peers. I hope that by seeing what I love about them they will love themselves. I also hope that someone else with Aspergers may read this on a bad day and see the beauty in themselves.

I will not specify which of my boys each thing I love relates to. Some of these things relate to both of them,some a particular boy. When they read it they will know...

You sometimes wish you didn't have Aspergers but I never do. To do so would be to wish I didn't have you. Without Aspergers you would be someone else and that is something I would never wish.

I love that you have taught me to slow down. To think before I speak, to take the time to choose my words carefully, that language is complicated and not everyone hears words the same.

I love that  you can respond to a simple request in a way that makes me smile and shows me who you are and how you think. When I ask, "can you put your pyjamas on?" instead of just "yes" or "no" I get "Submit the request form" or "Please press enter".

I love your absolute honesty.

I love that you could count to 100 when you were four years old and on your first day of school you said "I'm not sure I'm in the right class, they're learning the number 1 and I'm up to 101."

I love that you see the world differently.That Tuesday is not just a day it is also a colour (blue).

I love that on your birthday your favourite present was a ball of string and some sticky tape or one of those gadgets that old people use to pick things up with so they don't have to bend over.

I love that thanks to you I know more about Skylanders and Minecraft then any other almost 40 year old.

I love that what other people think doesn't matter to you (most of the time). If you wanted to wear, a Pirate costume,a police shirt (every day for two years) or even a horse costume, to preschool, you did! If you want to wear fingerless gloves to school, you do. If it's a knights helmet or Army outfit complete with ammo belt that makes you feel  good, you'll wear that too. To the shops, to a party, anywhere!

I love that through your eyes I see the detail instead of a big, boring picture.

I love that when you cuddle me it's because you really,really want to and when you say you love me it means more then when anyone else says it. Quality not quantity, that's you.

I love the funny things you've asked when you haven't understood what I am feeling. Like when you were really little and you would ask "what face is that Mummy?" Or when you saw me cry you asked "Why are your eyes raining?" 

I love that you ALWAYS notice when I've had my hair done or wear a new outfit.

I love that because of you I will never stop learning. That when you ask me about something like an animal in a book, you don't just want to know what it is but where it lives,what it eats, how many of them there are in the world.

I love that when I lose my keys you always know where they are!

I love that when you had to make a Nativity scene at school, you did, entirely out of Lego!

I love that even though you can't figure out clocks and telling the time you find other ways to work out what time it is.Like it's time to go to school when SpongeBob comes on or it's almost bed time when the bats fly over or we have to get Darcy from Preschool after you have your medicine in the afternoon.

I love that even though it takes a bit of work,when you finally trust someone you do so completely.

I love that you always make sure we're on time.

I love when you learn a rule you never break it.

I love that when we see a flag you always know what country it is from.

I love that I will never have to rush through life with you, that you will never grow up sooner then you should and you will never be one of those kids that can't wait to move out of home.  

I love that you believe in justice and being fair . That cheating is not an option. That you will always do what you think is right.

Most of all I love that you have made me strive to be the best Mother I can possibly be because that is what you deserve, nothing less.

Monday, 23 April 2012

30 DAYS OF AUTISM...Day 22

Share For Akian

I had a blog post shared on my page today,  after reading it and watching the video that was posted I felt compelled to share also. 
This video is extremely disturbing and hard to watch but please do and share. It is beyond belief that the teacher involved in this heartless behaviour is still teaching. 

 Help Akian get his apology and stop this teacher from damaging any more of the students she is supposed to be nurturing. I will share some links for more information and to a Facebook page where you can offer support. 

No more Teacher/Bully Web Page.     explains the situation in more detail and unfortunately more audio.

Sign the petition. Give Akian your support on Facebook and share the video. 

Children with autism have difficulties with communication, even those that have high language skills often cannot tell us what is wrong. This makes them prime targets for this type of bullying and it must not be tolerated!

I am blessed with a fantastic school and teachers for my boys. I only wish all children were this lucky. 

Wednesday, 18 April 2012

30 DAYS OF AUTISM...Day 18

Breaking My Own Rules...

I have always had a rebellious streak and have been known to break a rule or two in the past. It has not always ended well and I try so hard to learn from my mistakes but...

Today I went to the shops. With all four children. They were tired and hungry.

Not so smart?
It went OK. Considering, but it cost me...

Lunch at KFC -a bribe for Pierce, the only way I could get him to try on a new pair of shoes, we could not find a pair to fit him but he tried on two pairs. Still no shoes.

2 Skylanders - My fault, I told the boys they could look at Skylanders while Darcy tried shoes on and I was not at all ready to handle a double meltdown from two tired, hungry Aspies because *they could not live without those 2 Skylanders and they will sell out and then they will never ever be able to get them*

Lots of extra crap in the trolley- because I just wanted to get the shopping done and get home. 

My sanity (or what was left of it)- having to listen to Darcy say and ask every single thing that popped into her brain for the entire hour we were at the shops and she expected me to comment and answer on every single thing. One word answers were NOT allowed.

2 bottles of water- because Ryan and Pierce were worried about becoming dehydrated (15 minutes after having a drink a lunchtime) and could not share a bottle as *that's gross*. ( but drinking milk out of the carton in our fridge is not?)

One pair of girls underpants- Darcy pooped in hers when we arrived at the shops and I decided throwing them out was a better option then carrying them around in my handbag.

My Credibility- Did I mention that on the way to the shops I told my children not to ask for ANYTHING because they would not get it?

Oh Yeah I am ROCKING this parenting gig!

NOTE: Do not show this post to my Mother.

Tuesday, 17 April 2012

30 DAYS OF AUTISM...I have no idea what day it is!

Apologies for failing miserably at my own challenge. Daily Blog Posts for 30 days? Well that was never going to happen. I did however think I would do a little better then the past fortnights miserable effort.
Unlike Charlie Sheen I am definitely NOT winning! Not sure exactly what it was that pushed me over the ever present edge but I fell (or may have been pushed) and it has taken a while to climb back up.
School Holidays always see me stumble a little and these holidays have had some extra challenges that added up to me having a teeny weeny breakdown.
The change in routine is a hard thing for the boys and takes its toll on them and me. They are not at all self sufficient and add to that their inability to wait for anything for any amount of time means I feel like I am single-handedly  staffing an extremely busy restaurant/hotel during  a peak service period that lasts for twelve hours a day. I usually manage a shower before I then start the Graveyard shift. Add to this the flu (me and Ryan), My Aunty passing away and trying to help my Mum through losing her sister and all that goes with it, and me being already burnt out from fist term at school which is always tough and finished with two IEPs ( for some reason these necessary meetings  seem to mess with my head no matter how well the boys are doing),two Paediatrician reviews (again head wreckers), Pierce starting on meds and various sleep problems (me and the kids) and Darcys impending Psychology assessment (next week) and something in my brain just screamed "STOP! NO MORE!!!!"
Something had to give. It has taken every ounce of energy I have to just get through the day. Anything extra (like blogging) has been impossible. My mind has been incapable of  even attempting to turn on the computer let alone write a blog post and I have left my Colleagues to handle the running of our facebook page without me (sorry guys). I felt so guilty but decided I really needed to be kind to myself and my kids for just a little while.
I have caught up on some reading (which is something I have missed terribly since having kids),watched movies with my children and we didn't leave the house for a week!
I am feeling a little better and stronger and almost ready to face term 2 and starting back at the therapy appointments that will start filling in the days on my calendar.
Now if only it would stop raining so I can get the kids outside!

Sunday, 8 April 2012



People on the Austism Spectrum are well known for their honesty and bluntness. I try very hard to teach my boys that although their honesty is commendable they do need to be aware of other peoples feelings. They do however crack me up at times with their uniqueness...

The other day in the car Darcy mentioned she had fallen and hurt her *Bagina* . Any mention of genitals or bodily functions is sure to get a reaction from my boys, so began a discussion no one is ever ready for.

I must inform you all we are very open in our house.I  do not want my children to grow up thinking their bodies are frightening or something to be hidden. Nudity is allowed and a given and I never shy away from discussions about sex or genitalia, much as I would like to.

Ryan:"Why doesn't Darcy have hair on her Vagina?"
Me: "She will when she gets older"
All Boys: " Giggle"
Pierce: " OMG Girls have hair on their V-word"
Me: "You'll have hair down there too when you are older"
Shaun: " Yeah Daddy does"
Ryan and Pierce:"more giggles"
Pierce: " Why don't I have a V-word?"
Me: "you don't need  to say V-word Pierce"
Pierce: "Is Vagina not a swear word?" (hysterical coming form a child who says shit, fuck, bugger on a regular basis)
Me: "No, it is a part of the body like your arms and legs."
Pierce:"so,can I say it at school?"
Me:"If  you need to..."
Piecre:" But I shouldn't call someone a Vagina-Head?"
Me: "Definitely not!"

So now I spend my days worrying about Pierce discussing vaginas and pubic hair at school. I still believe in being honest and open with my kids and at least I don't have to worry about  them calling someone a *Vagina Head* . 

Saturday, 7 April 2012


Too Much Information?

As it is Austism Awareness month our television has been showing a lot of shows to do with Autism.Mainly Current Affairs programs and shows I have already seen, but the other night I watched a BBC doco I hadn't seen before called " The Autistic Me".

Here is a link to a You Tube video

This is the first program I have watched focusing on teen/young adult males on the spectrum and I was left feeling distressed and overwhelmed. I am very much a *one day at a time* type person and try very hard not to get too far ahead of things. Watching  "The Autistic Me" was like having the future thrust upon me when I was nowhere near prepared for  it.

The 16 year old,Tom, tormented by puberty and teen angst was especially upsetting. The darkness of his moods,his obvious self loathing and dislike of most of the people around him, his use of alcohol to try and fit in and his violent rages that were followed by his child like  excuse "I didn't mean it",all sent waves of horror through my brain. I could see so much of my 8 year old Ryan in this young man and have been unable to get the image of him out of my head. I have been kept awake thrashing out ideas with myself on how I can make sure Ryan doesn't end up like this troubled young man.

I was also struck by so many similarities with both my boys in the two other young man also trying to find their way in a society so foreign to them. Oli,obsessed with finding a job and Alex on his quest for love was heartbreaking to watch. Though I adored the clip of Alex on his *date* with a lovely young girl (also Autistic) who he met through a dating website. The inability to initiate conversation with each other and the obvious lack of interaction during their date seemed lost on the two of them and they both seemed thrilled with their meeting. It reminded me of Ryan having a friend over to play and spending the entire visit focusing on what they should play but totally rejecting any ideas his friend or I came up with.His friend left,they had played nothing and Ryan declared it the best day ever!

I was saddened to see the quirkiness and uniqueness of these boys that I see in my boys is not as accepted or revered in adulthood as it is in childhood. I have always hoped that the school years would be the toughest for my boys and man hood would bring them closer to finding their niche and a happy ending.

Hopefully the years ahead will be kinder to my young men. This Documentary was filmed in 2009,3  years ago. I know through my own experience that awareness and acceptance has grown ten-fold in this time, though not nearly fast enough for those of us who have loved ones on the Spectrum. I have discovered while Googling to find the You Tube link there is a follow up program "The Autistic Me...One Year On" , I have not decided yet if I will watch it. I wish desperately for a brighter future for these boys and their families and am not really sure I want to see the opposite be true.

I am more determined then ever to instil self-worth into my boys. I will continue to fight for therapies,support and services to give them the best possible chance of success. I will not let Aspergers define them or their place in this world. I will not let teachers use Aspergers as an excuse for not achieving. Most of all I will help them to make their strengths so significant it will be hard for anyone, including themselves to spot their weaknesses.

My boys will, like all of my children have the chance to be happy and successful adults. I have said often that I believe one gains strength by overcoming adversity and I truly believe Ryan and Pierce will be living proof of that.



Ok, I missed a day, well actually 2 but as it is still Day 6 in other parts of the world, I think I can get away with this being Day 6's post and hopefully I can get Day 7 finished before it is actually Day 8!

Other then the traits listed in my previous post dealing  with the Diagnostic criteria for ASD, there are some other  not as well known but definitely common behaviours children on The Spectrum often display.

One of these is Pica. Pica is an eating disorder described by the National Institute of Health as " A pattern of eating non-food materials (such as dirt or paper).

The other day my Husband removed the seat cover from the drivers seat in our family car and found this...

" What happened to the seat? " he asked. I wasn't entirely sure but had a fair idea who to ask... I called for Ryan and he very sheepishly apologised and informed us he had been eating the seat. You see Ryan loves foam. He has over the years systematically devoured many mattress toppers and even his foam mattress that was on his bed when he was younger. We have now removed all foam from the house. We have inner spring mattresses and no more toppers. So I guess that seat was just too tempting.

Other things Ryan has found delectable over the years include, pencils, chalk (a whole box which he promptly threw up), egg shells, soap, toilet paper, rocks, the insides of our pillows and Duvets and Styrofoam. 

We have lots of things hanging on our walls. Visual aides in most rooms and posters in the children's rooms. They are quite often found to have mysteriously fallen on the floor,all Blu-Tak missing. Blu-Tak is another favourite of Ryan's and he slowly but surely eats his way through a piece at a time until there is nothing left to hold the items up. 

The most interesting thing about Ryan's Pica is, that also like a lot of children with an ASD, he is extremely particular about what foods he will eat. He also has many *food rules*.Like no two foods can be served on the same plate and toast must be cut in squares, not triangles or rectangles or any other shape for that matter.
These rules must NOT be broken and to do so means  A.He will not eat said food(s) and B. Can often result in a meltdown.

I find it amazing that with all these *food rules* and fussiness  Ryan will however eat this...

Lint from the Tumble Dryer

And this...

The contents of the Vacuum Cleaner  

We have tried to address Ryan's oral needs with chew toys, chewing gum and chewy lollies. It helps, but sometimes, as with the car seat, other not so suitable materials are just too tempting. 

I am now trying to figure out a way to disguise some *healthy* foods in some of  these materials Ryan finds  so irresistible.Lint and Vegetable patties anyone?

Don't forget to check out the other 30 DAYS OF AUTISM Bloggers...

Wednesday, 4 April 2012


With A Little Help From My Friends...

Although having children with Aspergers, and I am sure any other *diffability* , does unfortunately make you aware of the judgemental and often cringe worthy side of Human Nature, I have always said how amazed I have been by the kindness and generosity that has been shown to my boys and our family in general since their diagnosis.

Over the years we have received many gifts,mainly from people we have not even met. A local Charity *Kids In Need* in the early days of the boys diagnosis set us up with a list of sensory products our Autism specialist recommended. This was no tiny list of resources... A trampoline (with net), 2x weighted blankets, 2x weighted lap bags and a move and sit cushion. Now these items are not cheap.I would say all up this was appx $1000.00 worth of goods that have over the years made a huge difference to  my boys lives. The most wonderful thing was I didn't even have to ask. I  am notoriously bad at asking for help and always feel someone else is needier then me but knowing this our Autism Specialist in cahoots with our local Early Intervention service applied on our behalf without me even knowing. Then about six months ago,the same charity bought my son Ryan an iPad to use at School!!! 

2 years ago when my husband hurt his back and had to undergo 2 lots of surgery to his spine and was unable to work for 18 months a local government department contacted me saying they had heard of our plight  and that we had Special Needs children and they would like to help. A case worker came to my house had a chat and the next week we received a new vacuum cleaner, 2 new mattresses for the boys,waterproof  protectors, sheets,incontinence overlays and a box of  big kids *nappies* to help with the boys bed-wetting. They even bought a new quilt cover for my older son and younger daughter so they weren't left out! Didn't end there either. They paid for a cleaner to come in once a week (heaven!) for 3 months and had a handy man mow our lawn and clean our windows during this time AND they paid to replace a broken shower screen. Again, this was all organised by a social worker at our local Early Intervention service.

You can't imagine the gratitude I still feel and will remember always. At some of our darkest moments I was shown how much good there is in this world.

I would have to say that although all this was overwhelming and something I sometimes struggled to believe had actually happened, the greatest gift I have been given since Ryan and Pierce was diagnosed is that of friendship.

I am one of those people who although I have many acquaintances, only had a small core group of real friends. These friends have been with me for a long, long time.Some since birth. They are my family and I have relied heavily on them over the years. However, I now find myself with a new family, made up of an amazing group of  women. They are my SN Mums family. Many of them I have not even met face to face but they know more about me and my life and my children then even my Mother does. They are my Facebook family and I have no idea what I would do without them, their love, encouragement, support and advice are more then I can ever ask for. One of these women has become one of my dearest friends.We speak daily and have even been drunk together (via the phone), I look forward to my Friday nights with Veronika and she has given me so much and asks for nothing in return. I recently started a chip-in fund for my son Pierce to also get him an iPad  for school. Two days later and after I think only a couple of posts on my page,we were at 100%! We had a very generous donation by a family member but the rest was given,including one donation of $100.00(!!!)  by my Facebook family. Amazing people who have their own SN children but gave to Pierce and shared and encouraged until we reached our goal AND they were as excited as I was when we got there. I love these people and their children and feel as close to them as I do my friends who are here physically.

I also have a fantastic group of friends who I call my *Aspie Mums Club* (although we do have a Dad in the club I call him a Mum too)...We all met at Early Intervention, except for a couple who I met at school. We meet every Wednesday for a cuppa at a local cafe and together we have formed a beautiful bond that will never be broken. I hang out for Wednesdays.We share our stories of Paediatrician and therapy appointments,  IEPs and school dramas.We also share the good stuff, the successes our children have. The little things that are so huge to our children but would be nothing to others. We GET each other and each others children and we care for each others kids well being as much as our own. Today these beautiful women surprised me with a gorgeous bunch of flowers as they knew I had had a tough couple of weeks with my Aunties death and various dramas with the boys. They knew, without me saying, that I was struggling and just hanging on. These women (and man)  have so much on their own plates but not so much that they couldn't go out of their way for me. I am loving my flowers and the love that I am filled with when I look at them and think of the gift I have been given.

So having my boys diagnosed with Aspergers did at times feel like the end of the world but it wasn't. It actually opened up a whole new one, filled with compassion, support, understanding, generosity and most of all love.

Thank you to all of my friends, here and in cyber space. I couldn't get by without you...

Monday, 2 April 2012


First an update on yesterdays post...Pierce was adamant he was not going to school this morning but I WAS able to do  a deal  with him. It has cost me the promise of a day off tomorrow (It is swimming carnival day) and a new Skylander but I got him there and he is happy because he has the image of his new Skylander in his mind.Sometimes obsessions are good! Maybe not a parenting technique that most would recommend but desperate times  call for desperate measures :-)
I am swamped today.Darcy's Easter concert this morning then Ryan's IEP meeting at school,so I have cheated and asked a friend to be my *Guest Blogger* for the day.
Please welcome Nicole to Apergers Rules. I met Nicole at one of the first workshops I attended at Early Intervention when Pierce was newly diagnosed. I was still  feeling numb and bewildered and very emotional. I can honestly say I would not have coped if not for the support of friends like Nicole and she is the reason I am so passionate about awareness and helping other parents on their journey. We have remained friends and our children now attend school together. I am sure we will be friends for a very long time and I feel blessed to have her in my life.

April 2012 – and it is National Autism Awareness month. My friend Teriann has asked if I would consider doing a “blog” for her “blog”..LOL… Well of course I said yes and so here I am.  My name is Nicole. Im a forty something stressed out mum of 5…. Yep you read right….5. I have twins Olivia and Blair aged 9, (both with Aspergers), Nicholas 6  nearly 7(PDD NOS), Marcus 5 and Mayeva 3.  Somehow with all the craziness I have managed to stay married to my dear husband Craig and we have been together now for 13 years.
I will try to be brief on our journey to where we have arrived at now. Only because it is so long and drawn out I don’t think there would be enough space to include all the “ups” and “downs.” Craig and I met many years ago when we both worked as police officers.  We were both mentally and physically fit and we were looking forward to a bright a future together, which of course included having children. After marrying we began straight away to try and start a family. After much time, I was diagnosed with endometriosis. Subsequently after IVF I fell pregnant with our twins, Olivia and Blair.  The birth was horrendous. The babies were born prematurely. It was a long arduous journey but we finally made it home with our babies after 100 days in hospital.
Once in preschool their teachers began to talk to us about their concerns regarding the twins. We had them assessed thinking that they were just developmentally delayed because of their prematurity. We were then told that they had Aspergers Syndrome.  All I knew about Autism was that I had seen children with Autism flapping their hands or doing repetitive behaviours. I had no idea of what we were about to face.

Miraculously I fell pregnant naturally with Nicholas.  His  birth was great (only because I was under a general anaesthetic). He was a good baby. Then at about 18 months of age I started to notice things about his behaviour.  I started telling my mum and husband that I had concerns for him. I was brushed off as being too over analytical. But my “mother’s instinct” knew something was wrong….you mums know what Im talking about right..?... Sure enough his symptoms became much more prominent. He was eventually diagnosed with P.D.D. (N.O.S.). I am certain now at this point in time his diagnosis will change in the near future to at least Aspergers /Autism.

Knowing that falling pregnant with Nicholas was a “miracle”,( as my doctor so kindly told me), we failed to take any precautions. It was then I fell pregnant with Marcus and was very surprised to say the least.  I always remember the day they told us on the ultrasound scan I was having a boy.  Deep down I so wanted this baby to be a girl. Not because of some deep inner “want” for a girl. Just merely because I wanted the chances of this child having autism to be less than if he were a boy. Marcus seems at this stage to be neurotypical. He is great talker (much like his mum and dad) and is just your typical boy who loves playing. Yet he is exposed to so much sometimes, I often just wonder what sort of toll all of “this” is taking on him.

So… after the birth of Marcus my days were definitely very busy.  I had developed a prolactinoma in my pituatry gland and my periods had stopped for nearly 2 years. I needed treatment for this benign tumour. Whilst receiving treatment I was standing in the deli section of the local supermarket. I started to feel very nauseated. So I thought to myself…. “I have only ever done that whilst I am pregnant….Surely I can’t be pregnant?...I havent’ had a period in nearly 2 years now!” I did a home pregnancy test.  Sure enough there were two dark lines. I couldn’t believe it. I was in so much shock I rang and told my husband at work. That entire day he thought I was joking…until he got home of course.  I had to get an ultrasound to confirm my dates. Sure enough I was a few months along. So here we go again. Little Mayeva was born. She is an absolute delight and seems at this stage not to be displaying any symptoms, nevertheless I keep a close eye on her anyway.

So fast forward a number a years.  Olivia and Blair are in Year 4 at school.  Olivia is an extremely bright child. She is loving, over sensitive and is a perfectionist.  They say she is high functioning. Well yes she is.  But she has to “act” and try harder at some things than other neurotypical children of her age.  Blair on the other hand is much different.  He began to have severe meltdowns from about the age of 3. He became so violent that we ended up getting him put on medication. I was absolutely racked with guilt. Not guilt out of finally having him medicated, guilt that I had listened to everybody else and not medicated him earlier. After he started taking the medication his meltdowns ceased. He could use the toilet. He wasn’t scared of “everything”. His anxiety levels went from a 9 out of 10 to a 2 out of 10.  He still struggles daily with different things. He knows he has Aspergers and we talk about it when he wants to.  Only yesterday he said, “Mum I can’t stop thinking about the world ending this year….bloody Aspergers!!... I think I’m going to go and try to meditate.” I had to laugh at his comment. He is now old enough and has the cognitive ability to understand that his current fixation on how the world is going to end… and his constant anxieties about the world blowing up etc… are due to him having Aspergers…. And that there are ways of trying to deal with these “worries”.

Nicholas on the other hand is a completely different “kettle of fish”.  He has been the most challenging to say the least.  I don’t even know where to start. After attending a number of different schools, my children  (Nicholas included) have finally been placed in to a mainstream school which seems to have benefited them.  Nicholas is a is a highly anxious child. He is very fit and strong and has good motor skills (which is not common with children on the spectrum). He loves to climb….anywhere.  He has a speech/language disorder. He struggles to write and cannot read. He doesn’t socialise with anyone at school. He lives in fear most times, unless he is at home alone in his bedroom. He loves computer games, IPAD’s, Star Wars, Skylanders, Lego men…. Just the usual things these kids love. He doesn’t look at me or answer me when I tell I love him.  He doesn’t like me to touch or cuddle him….only sometimes when it’s on his terms.  He is abrupt and to the point. He primarily looks only after himself. On the other hand he can be extremely protective of his younger sister and at times can enjoy playing with his siblings (if it is something he is interested in).  If he is having a bad day I drop him off at the library at his school in the morning. Sometimes he may jump around all over the furniture. Some days he will go absolutely ballistic ie; have an autism meltdown. You know the type of meltdowns Im talking about…..screaming, yelling, swearing, kicking, banging his head, saliva dripping from his mouth, him begging….begging for me not to go….to take him home. And this happens over…..and over…..and over again. And when I leave I have pains in my chest, I feel sick in my stomach and my hands are trembling….. but they tremble all the time when these things happen. Nicholas doesn’t like being out near crowds. I again discovered this other day when I HAD to just drop in to the local shopping centre. He completely lost control. I had to carry him….or drag him should I say out of the centre.  He was in that “zone”.  The only thing I could do was protect him and remove him from the situation and wait until the dreaded “meltdown” decided to run its course. The scary thing though was not Nicholas having the meltdown, it was the look on the other childrens faces. It wasn’t fear or shock as you would imagine….. they looked…. Well…….not surprised……you see this is the norm for our family.

Growing up I was always the child that had empathy for children who had disabilities or children that were less fortunate.  I was always the odd one out in that sense – I always had this sense of maturity -  I never teased or mocked those children. Funnily enough my husband said he was the same growing up. I consider myself a spiritual person. Was god preparing me for things to come..?..... My work life over the years was like no other. I worked for full time for nearly 21 years (collectively) firstly as an ambulance officer and then as a police officer. I worked mostly in general duties and spent some time in plain clothes. I only worked at a desk if I was pregnant… then back out on the road I would go when I returned to work.  I have witnessed, investigated and even been a victim to horrendous crimes and incidences that are too horrific to even be posted about here.  I was always one of those people that could remain calm in any situation. Train crashes, car crashes, plane crashes, murders, suicides, dead children, abused children….you name it… I have seen it…..all that horrible stuff that most people fortunately will never have to be a party too. But yet in all that…… in all how good I was at my job…… how calm I remained….. how clear headed and strong I remained in that work environment……all the “stuff” I had been exposed too….. absolutely NONE of that prepared me for what I have seen and what I have endured…. In watching what my children with autism  go through on a daily basis – in particular Nicholas. Here I was a professional person….. a person who always wanted to have it “all”……kids and the career……I was such an organised person…….. once I could investigate a crime…. prepare a brief of evidence for court and have the person convicted………..yet now…………on most days…… I feel so bloody overwhelmed.  I struggle to remember everything….the OT appointments, the speech therapy appointments…this appointment….that appointment….all the bloody appointments!. I have a really short fuse….. I  hardly have any patience for most people. I struggle to read a book now. I’m tired…..always so bloody tired….whether it be from the mere stress of my existence….or Nicholas wandering the house late at night due to his insominia. I used to keep my house nice and tidy – now – well what can I say….Carol Brady doesn’t live here that’s for sure. My husband and I have a good relationship but there are just those days that all the pressure of living with children with disabilities takes its toll on our relationship.  We haven’t had a date in….well years….. we haven’t had a night away together in ten years…. But we try and look forward and know that things will hopefully get easier….. and we just try and hold on until then.

All in all my life is hard on some days….. but then on other days not as difficult. If my children are having a difficult day….then sure enough that means my day is going to be crap too.  As Professor Tony Attwood put it…”Some days the tide of autism rolls in and you know it’s going to be one of “those” days….. other days the tide is out….. and you just enjoy it whilst you can”. My husband is extremely supportive and I have been making friends with people whom funnily enough are living in the same crazy world as what we are (yes that’s you Teriann LOL J ).  I have learnt many lessons thus far, and know that there will be many more to come.  I am grateful for all the positives and know that there are many families out there who are struggling much more than ours. I always try to keep a sense of humour. I think I learnt that from being a cop for so long.  That dark humour only people that work in emergency services, or hospitals, or those who are a constant witness to struggles in life such as ours. Humour has always been a great coping mechanism for me.

I have been completely honest here in this blog.  I know all you mums/dads, carers of children with autism are nodding your heads whilst reading this blog…. Agreeing….knowing….only what we know. What I wish for though is parents out there who have neurotypical children to read this. I want them to know what our daily lives are about….. what these children with autism struggle with on a daily basis……so that you may then have just a little bit of empathy and compassion for not just us mums but more importantly for our children…..our special children....> So at 3pm when you arrive at your childrens school today,  when all you well dressed mothers turn up to school to pick up your children…..all you fortunate mums who are calm…..content…you may have even just been to the gym?..….your house is tidy…..Whilst waiting for your children you’re thinking about that beautiful dinner you have cooked for your husband today that you know he will just love…...It’s then that suddenly your child/ren run out of their classrooms to greet you at the end of the day. They hug and kiss you and the warmth of them and the smiles on their faces make it all seem worthwhile. Your children begin to tell you what a great day they had….and you just can’t wait to get them home. Yet for mums like us….like me….. well it’s a totally different story……> I rush to pick my kids up in shall I say….a very messy car. My house is still not completely tidy and Im working out whether it’s going to be pizza or chicken nuggets for dinner – anything that is quick and that the boys will eat.  I realise my shirt is on back to front – oh but who bloody cares. My bladder is full and I need to pee – but it’s going to have to wait. My hair is thrown back in a pony tail because it’s all I have time for. (Trying to get the two boys dressed and ready for school takes a LOT of time and a LOT of patience).  The bell goes and I first see Olivia. She has had a good day…(thank god no social problems today)..…yep Blair has maybe not so much had a good day……I can see it in his eyes as he’s walking towards me…..He’s walking slouched forward….with tears beginning to well in his eyes….I can see he is about to have a meltdown…. I try and coerce him to the back of the school where it is quieter and nearer to our car….  I rush to get to Marcus and he hugs and kisses me – just like the other kids do with their parents.  I want to keep holding on to him…. I savour it…. I hold on to him as long as I can…..because it makes me feel good….even though it’s just for that short time.  I go to look for Nicholas….only to find he has taken off again…..maybe this time he will be hiding under the hedge……or hiding on the floor of the toilets. I finally locate him.  The abrasions under his eyes are red again (he rubs his eyes constantly)…. His shoes and socks are off and his toes are bleeding again (he bites his toes when anxious)…. He looks dishevelled and worn out – yes just another day at school.  He begins to talk to me as though he has seen me all day. No “hello” or hugs or kisses. I want to hold him….I want to hold him really tight… tell him I love him….to show him I love him and that I miss him.  That’s but a fleeting thought. He immediately begins asking me about buying another Skylander…..I tell him we can’t buy one today….and so the meltdown begins.He drops to the ground, crying, screaming, writhing as if he is in pain.  I try to calm him….pick him up…..when some of the others mothers  are now staring at me……I can feeeeel them staring at me……..staring at Nicholas…….in shock….you can see by some of the looks on their faces that they think Nicholas is just plain naughty….having a tantrum.   I just want to scream.  I want to scream at Nicholas….. I know he can’t help it…… but it’s what I feel. I want to scream at those bloody people staring at us.  But yet again I hold it all in, try and keep myself composed and I assist Nicholas to the car. He continues on with the meltdown. We start to drive home.  I put on my sunglasses to hide my tears.  I am crying because my son just had another difficult day at school. I am crying because I feel his stress…..his sadness. I am crying because I want my son to be………..happy……….just happy.  And I just try to reassure myself that tomorrow is another day…. Maybe a “good” day if we’re lucky.    

Sunday, 1 April 2012


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.


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 
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?

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.

30 DAYS OF AUTISM... The Bloggers!

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


Stuck On Shelby

Life Is A Puzzle

Seven Yuck Mouths & Autism

Kat's Cafe

Autism From A Fathers Point of View by Stuart Duncan

Caden's Tale

Nathan's Voice

Making Time For Mom 

30 Days of Autism 

Special Happens

Just Bring The Chocolate 

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!