Miss me??

Little man has totally worn me out - thus the no blogging for a few days, or has it been a week??  Did you all miss me??

Tonight - because of the guilt, I thought I would pop on for just a few moments... just to say -  I hate the battles.

I hate the battles with little man - we have been having way too many.

I hate the battles explaining to others what is going on with him.

I hate the battles of sick children and unable to find the cause.

I hate the battles that seem to be ongoing between these children of mine.

I hate the battles with educators.

I hate the battles with funding. 

I hate the financial battles to try and keep it all together.

I just plain and simple hate the battles.... they make me tired.... so off to bed I go.  

Tomorrow is another day with hopefully a brighter outcome :)

Night all!!!

3 things....

I was not going to post tonight - been  huge week with one more day to go... but think this is becoming a habit for me to let it out... so here goes :)

Today I attended a seminar with Sue Larkey, Dr Tony Attwood and Michelle Garnett.  The information they gave us was amazing.  I am not going to write a blog about it tonight - as I am still trying to digest all the information, however they did share one thing that leads me to the physical/metal/emotional exhaustion I am facing right now (apart from the traveling ;) )

There are 3 things we can say or do that our ASD kids do not like and will for SURE set them off...

NO!

WAIT...

CHANGE.

No kidding.  

Well - as I mentioned at the recent visit to our Psychologist (Blog: Yep it's Traveling...) we discussed offering a reward for completing his routine chart, but with a twist. The reward has to be something ongoing - a part of a bigger picture so to speak.  She suggested money, but since his understanding of money is limited we decided this would not work.  So what is a currency he understands??  TRANSFORMERS!!!  

So first night of completing his chart (last night) - he was to get ONE piece of a new transformer. Yeah - like that would work.  Serious melt down - why???  "NO you can't have the rest" and "you have to WAIT 5 days for all the pieces", and finally the CHANGE??? A new part of the routine.  NOT GOOD.  So yes - I caved and gave him all the transformer.  It was either that or repair the holes in walls and broken windows.

After some discussion with one of my support team (My Mum), we decided that perhaps a sticker chart working up to the toy might work better.  Well today at the workshop was an awesome tool I thought would be perfect.  A "dot" chart with 5 dots.  Do the routine chart for one day - move the dot.  Once you have all 5 dots moved - it's prize time!!!!  AWESOME!!!

Connors Night Time Routine Chart & the dot reward card.

When he completes a task it goes in the "Finished" bag....

Seriously - will I never learn??? No you can't have the prize now. Wait til you have 5 dots. Yet another change.....  How is it any different to last night?? It's not.  So why did I expect a different result?? No idea!!!!

So after major melt down again I agreed I would take him to McDonald's TOMORROW, not after 5 dots.

Back to the drawing board.  I will continue the routine charts - but WITHOUT THE REWARDS!!!

Perhaps I need to start smaller.  Shorter time frame???  5 small chores???  

Tomorrow is another day...

On a brighter note - I was interviewed by ABC rural radio today about the Disability Action Week activities we have organized in our home town tomorrow.... so I had best get some sleep.... BIG day tomorrow :)

Quick one!!!

Just letting you all know I still have all my fingers attached- hehehehe

Tomorrow I head to Highfeilds to attend a Seminar presented by Sue Larkey with Dr Tony Attwood and Michelle Garnett.  Could be very interesting to hear what is said, learn new tips and trick and more understanding into Connors world. 

I think education of ourselves and others around us is so important. The amount we have learnt about how Connor senses things and experience things has been a real eye opener. We will be forever learning and expanding our knowledge - and then it's putting it into practice.

But for tonight - its get some rest before the 4 hour round trip for the second time this week. Sometimes I really wish we lived a little closer to these services :)

Night all :)

Post Travel Day

Well it's been a huge day!! As predicted little man is very unsettled.  Has not eaten tea and  absolutely refused to bathe.  A small scrape on the knee, now covered with band-aides is the 'cause' tonight. 

"I hurt... too sore.... sting...."

Which opens up the conversation about personal hygiene!!! Tonights topic ;)

He has always been fussy about bathing.  Actually fussy would not really be the correct term.  Down right difficult would be better since I am trying to keep the blog clean!! 

Our home is very small. A work in progress. Progress/renovations occur every 3-4 years. So it's slow going. Anyways we did not have a bath in the house.  We had an old shower.  And guess who could not handle having a shower.... yep.  Never!!!  We tried every trick in the book and nothing ever worked.  We did however have a large laundry tub. Fortunately he loved splashing in the tub. Unfortunately he was fast growing out of the tub.  We also have a pool.  A very large, in-ground heated pool.  And little man loves water, so most of summer he spends in the pool.  Bathing was not an issue.  He was always chlorine clean ;) But of course in winter, the bathing once again became an issue.

One idea suggested to us was to put a bucket/basin into the shower recess and fill for him.  Our baby bath just happened to fit... so that worked... sorta.  By the time he hopped in - not much water was left in the bath... but he was clean so it was all good.  Our other option was to visit friends and family who had a bath ;).

We have also discovered that temperature plays a role in the bath routine.  Not hot but just warm, and he could sit in it until it was stone cold!!!

Fortunately we received some funding to support us with some of Connors needs and of course one of the concerns was the bath issue, so now we have a new bathroom!!!  And he just loves it!!!

He also has issues with the teeth brushing thing.

Firstly toothpaste - We can't get any form of minty anything near his mouth so rinses are out unless its salt water which he would drink!! We have tried bubble gum, apple, banana flavored toothpaste - nothing worked for more than a week. Every time I see a different flavor I grab it to try...Lol. 

As for brushes... We have an array - vibrating, flashing, ones that sing songs hehehehe. We tried everything. One OT suggested one you put on your finger like a thimble, but they too are hard to get.

Yep a draw full of kids toothbrushes and toothpastes.

Another thing we tried, since he is a iPhone/iPad addict, was an app by McCleans called "Nurdle Time".  It plays a little tune so you can wiggle as you brush and it talks/sings you through the process.  It is timed too - for the 2 minutes.  Once you have finished you earn credits to dress your little Nurdle dude in outfits.  Worked wonders for about a fortnight - then nothing would get him back near a toothbrush.

Seriously it took Daddy holding him and bruising his face to open the mouth so I could stick a tooth brush in there... and honestly we gave up. The physical and emotional drain every night and every morning was something I could do without. So we continued to say tooth brush time - but if he just wanted to watch the others - we let him. 

Until we started our charts.  Because it was on the chart - it had to be done.  We figured it was time to tackle it again. We got out the array of toothbrushes and he picked one that had "colgate" written on it... why??? Because "C" is for "Connor". (Yep - he is learning to recognize his name!!)

Still won't use the toothpaste, but we have found a Gel at the chemist (Thanks to a special dentist friend for suggesting...) called Chlorofluor that we can use as a toothpaste or to rub on his teeth after a 'just water' brush. So at least his teeth are half way clean.

BUT of course, nothing worked tonight.  And I have no energy after a busy day of yard work to fight.  So now he is asleep, with just a hand, face and foot wash, and I am about to sneak in to rub some gel on his teeth.  So if I don't blog for a couple of days - I have lost a finger and am in recovery!!  ;)

Night All!!! And wish me luck :)

Yep it's Travelling...

Wow it's been a huge day.  Started at 3:30 with little man waking up with the upset/vomiting tummy.  Tummy bug or a result of the poisoning he incurred from sucking unblown balloons last night??? Your guess is as good as mine .... And of course - he was alseep when it started so after a bath and the washing machine on - back to bed for a couple of hours before we started the trip to Toowoomba.  A 2 hour drive - and as I have mentioned before - he don't travel good. 

Our recent trips to Toowoomba have been to see a Behavioral Psychologist.  This was suggested to us back when Connor was diagnosed but I have put it off for several reasons. One reason was due to distance (and the travel issues) plus I did not really understand what a "Behavioral Psychologist" actually does!  Besides - we have been going to and from with so many appointments I don't think adding another to the list would have helped - I could barely remember what I have to do from half of them!!!!

Since Connors behavior at Kindy was getting progressively worse, the teacher suggested we take the plunge and book ourselves in and see the pysc.  So I did (just to shut her up lol) and wish I had earlier!!!

Our first visit 10 days ago was a basic history collecting session. But she asked some questions I had not been asked before relating to my pregnancy and delivery of Connor, and working up from there. 

Our main concern and reason for the appointment was of course his less often but more violent out bursts.  Her immediate reaction was yes - that is a concern. He should be have more outbursts less violent.  Strange I thought.  We have been trying to have less melt downs!!!  The reasoning behind this is he is "suppressing". If you can imagine a safety valve that releases steam regularly - and if it got blocked - the whole thing would blow.  Well that's our little man.  So we were sent home with a sensory profile questionnaire for both us at home and the kindy to fill in to bring back.

Anyways after a week of GRRRRRRR from him (nice terms :)), off we go again.

When asked how has he been - well!!!!  You can just imagine my reply!!!!  And I also stated that we don't know if it has been the travelling, kindy, end of term tiredness or something else that has set him off.  After one look at the sensory forms - here is what we got (in short)....

He has hearing, touch, smell and vision sensory issues. (Yep - we guessed that).  He also has social interaction issues (not sharing was a big giveaway on this one) and central nervous system (movement, balance and equilibrium) issues (did not know this one!!).  So to break it down - like she had to for me ;):

Starting with travel.  Think about it - the road noise, car motor, other cars, sirens, car stereo, other peoples movements and sounds, etc etc etc.  Seeing the moving roadside, traffic coming and going, lights from oncoming cars.  "Look at the cow Connor. Look at the truck Connor.  How many horses can you count Connor?" ... Smelling the truck fumes, people in the car... The constant unbalancing and movement and turning and stopping and going...

ALL baring down on him.  

And he can't escape!!!  

He is trapped in the car!!! 

No wonder why when he gets out he goes crazy!!! All he want's to do is RUN!!  Poor little man.  The torture we have been subjecting him to over the years!!!  

So solutions: Sunglasses. Headphones. iPad to focus on (without the "look out the window Connor" from us!!! - And believe me THAT'S HARD!!!). And regular breaks for him to run.  Tried some of this on the way home - and yeah... he seem to coping so far!!!  Already in bed!!!  Asleep!!!

So that's the sensory stuff to help with traveling, and of course it's not that easy.  It's going to be a long road. But when you consider almost everything we do and everyplace we go - the overload he must be feeling.  We are aware and do try to avoid tricky situations, but imagine the Kindy Chaos!!!

Now lets talk behavior.

Currently we believe he is showing signs of stress and overload at kindy and at home, that we may not been watching for.  Most times we catch the tail end of it when he is about to blow, or after he has burst and someone is hurt.  So some of the simple steps we can do to improve his anxiety....

Rocking chair.  He rocks himself to sleep, rocks in the car and will run to his room and rock if too many people are around.  He does this to 'block out' all the sensory overload. So what can we do?  Sit him in a rocking chair and let him rock!!!!  And do it often!!!!!  It clears him out to go tackle the world again.

Rough play.  Although he is sensitive to touch, he does not feel pain.  It's one of the Autism paradoxes.  So we are to give him at least 20 mins of rough play per day.  Jumping on the tramp, tickle matches etc etc.  

Routine charts. Routine routine routine. This one has been drummed into us since the beginning. and yes we do have charts.  I just happened to take one with me today and the Psyc loved it! Pat on the back for Mummy. But then.... Mummies balloon is about to burst... what about the reward if he completes the chart??  Damn!!!!  Never thought of that!!! so.....

Reward charts. I am guessing you have all heard this one before. I have tried reward charts before with MJ (Makayla), and discussed them in great length at the PPP Stepping Stones Program. But have not put them into place for Connor.  If he completes all his routine chart items we breath a sigh of relief but he does not reap a reward (except mummy is not yelling any more - hehehe).  So we are going to try a reward system. Something a little different... will leave talking about that one till I have it in place.....

And as usual I come home after a 2 hour trip - and try to remember all that I was told... and can't!!  That's why we have repeat visits.  Talk about sensory overload - how about information overload??? lol

So we will be putting some of what we have been told into practice... and keep on one step at a time to help our little guy through :)

BTW - he is no longer vomiting!!!! Pretty sure is was the balloons....

Yummy Cake

Well it's Sunday afternoon and I have had a very VERY lazy weekend!!!  For a change :)

Yesterday was a fun filled day of voting, catching up with friends,  going out for coffee (just us gals - Mum, Makayla and Shylah), while Connor spent some quality "Dad" time. Then it's TV time to watch the election results, and bed.

Today is total unmotivated time!!!

BUT Connor has been pestering (and when I say pestering I mean DEMANDING) for 'yummy cake' to be cooked.  He got out the BOX mix and the bowl... and now is eating the powder - before anything else is added!!!  I think he has more on the cupboard bench than in the bowl - but it's all good.  He is getting his 'yummy cake' and all is peaceful again!!! He has always loved helping in the kitchen - but never eats much. He has food fads....

Cooking - November 2010

A couple of years ago it was muffin mix.  At 3 in the morning... I discovered the best brand ever for Choc Muffin mix was Mrs Greens - you just add water!!!  I swear I could make it with my eyes shut - normally did at 3 in the morning ;)

The other "favorite food" is Chicken 'n' cheese Schnitzels - but must be a particular brand (Ingham) , not fried coz they go too crunchy, so just a zapping in the microwave normally does the trick.  Plus the edges MUST be cut off. Too many crunchy crumbs. When the local shop had none on the shelves we made inquiries... and were told they had stopped stocking them. OMG!!!  This is one of 4 main foods he eats!!!  We all went into panic mode!!!  Checked our freezer for some that were stashed (found a few thank goodness) but still in major stress mode. So I did what any good mummy does in this situation... I posted on facebook!!! Within minutes I had an offer from a friend who was traveling to Brisbane for the weekend who was going to check out and buy out the store...   But alas - she found none either!!!  My next visit to the local grocery store included a trip to the chicken section - just in case - or I would be doing the letter writting/facebook stalking until I got some back in store.... low and behold - back on the shelf, where they should be were the wonderful schnitzels.  You know in the cartoons and movies where the item literally glows - yep - the schnitzels were glowing - or at least it seemed to me!!!

Another of Connor's food groups is chicken flavoured 'Shape' bickies.  I love my friends - I truly do!!! Everyone aware of Connors food preferences has a stash of these in the cupboard. hehehe. There is just one condition.  The biscuits must NOT be broken. Broken ones are just not acceptable. lol.  We have a container at home with the 'broken ones' that visitors and siblings are allowed to eat.

Hot chips - who doesn't love em??  But they must be just warm, very salty and the ends have to be snapped off.  Yep - he is a fussy begger!!!

Connor's eating was one of the first things we sought help with, that and his lack of speech.

At 2 yrs of age his diet consisted of dirt, rocks, paper.  I used to joke that he was a true book worm and literally ate his words!!! lol.  We do not have a childs book that does not have ripped pages or bite marks in them.  He would also eat beads, glue or basically anything that has no nutritional value. He actually craves this kind of 'food' like a pregnant woman craves pickles.  It's called PICA and goes hand in hand with ASD.

Would anyone like to guess whats for dinner????  Yep it's Chicken Schnitzels!!!   At least we have discovered one great thing.... Buby Shylah loves the edges - so we have no waste!!!

I would like to dedicate this to some beautiful women in my life: Jenny D, Jenny G, Bec & Chris.  Each of you should know why... Luv ya!!!

Stress

A friend of mine recently posted her guilty feelings on facebook regarding her ability to care for her son.  No he is not a special needs child, but it prompted me to write this post about stress.  Another mother in America was recently charged for attempted manslaughter of her ASD child.  

Stress.  Not something we like to talk about but something we all face.

As a mother we face so much stress. And also guilt.  Are we doing the right thing for our kids? I slipped them a lolly during shopping – have I ruined their teeth?? Will I screw up their innocent minds?? How can I afford it all?? Should I spend more time with them? How will they cope with peer pressure? Have I given them tools against bullying? Am I rotten for relying on disposable nappies?? Should I help more with the homework? 

Add in the pressures of looking after a special needs child... what did I do during pregnancy to cause this? How can I explain this to our family?  How can I take him to that family gathering?  How can I get him to eat?  How can I get him to sleep? What other therapy should we be attending? I missed doing his communication book – will he lapse? Why won’t the education system accept the fact he WON’T respond to that? How can I protect the other kids?  What if he wonders away again? What are the other kids (siblings) missing out on because of this?  How are our life changes going to affect the other children?

Lack of sleep – sleep deprivation is a tool of torture. Need I say more??

Also – just out of interest – I have been told that when a family are first told of a life diagnosis such as ASD – the grief is as much as losing a child.  Apparently (I do say apparently because I am yet to face this), because our hopes and dreams for our child are not what we got dealt.

OMG!!!! Seriously??? We don’t stand a chance!!!  

So how do we deal with it?? I have read so much about Carers Stress, and yeah – some of the advice is so unpractical. But there is a glimmer of hope.  So here are my tips that I TRY to live by!

1. Link up with support.  YOU ARE NOT ALONE!!!  There are support groups, mother’s groups organisations such as Carers Qld.  If there isn’t one in your area – START ONE!!!
2. Talk to the professionals.  GP, physiologists, therapists and child health nurses. There is nothing to be ashamed of. Depression is a real health condition that can be treated.
3. Reach out.  Friends, family even facebook (my personal favourite ;) ). Talk to people.  Remove the judgemental negative people from your social circle.  They are not worth it.
4. Time out.  My hardest battle. It’s hard to take time out with so much happening.  Time out does not mean a weekend away (I wish) but can be a 15 min break to breathe.  Make yourself a sanctuary somewhere right at home.  A chair outside. A corner inside. A no kid zone.
5. Help others.  There is nothing like the sense of accomplishment when you do a good deed for another.
6. Accept assistance.  It’s hard to admit you need a hand sometimes.  I know. Been there.  But people want to help – let them know how!!! It could be a friend doing your dishes while you take a breather or a generous someone cooking your dinner.  Let them do it and accept graciously.

I could write about this for days. And get into a lot more in-depth with some of the tips – and most likely I will at a later date. But I want to get the word out there. 

Again – YOU ARE NOT ALONE.

That is why I write this blog.  I want to connect and support others in similar situations.  If you have no-one who understands – I do.  

This is my second time round as a “carer”, third time mother,  so I know STRESS.  

For 4 years I looked after my Grandma who had dementia, 24/7.  I was at breaking point with my stress before help stepped in. When Makayla was suffering undiagnosed reflux, again a very good friend stepped in and sought assistance for me before I totally cracked.  More recently, when my father passed away unexpectedly, the stress and grief was so intense, I could not cope.

Everyone deals with stress in different ways. But PLEASE do not shut down.  Connect with support.

I could fill the page with platitudes. But I won’t. I will share a one phrase that has always stuck with me...

"As parents – we can only do the best we can do."

(Thank you Tara xoxoxo)

And of course

YOU ARE AWESOME!!!!

Sleep

Wonder how long I can keep up daily posts?? hehehe

Today has been a quiet one... at last!!!  So I can share some other parts of the ASD family life instead of this turning into a "bitchfest" ;)

Todays topic.... Sleep!!  Something I think all ASD parents can immediately share a sigh of "what sleep???".

When our eldest daughter was born, she suffered from severe reflux (another groan from the mummies who know what I am talking about).  For the first 4 months the ONLY time she slept was when she was feeding - from ME!!!  Once she was finally diagnosed and medicated she had already developed into her routine of sleeping with mummy.  ROUTINE - a topic for another night... back to the story.... now our beautiful Makayla is 8 years old, and yep, still tries her best to sleep with Mum or Dad or Mama or SOMEONE!!!  So lack of sleep and restless babies was something we sort of expected as a norm by the time Connor came along....

For the first couple of weeks, he was hard to settle, but then again he was also hard to feed.  Then the power puking started - BUT we were prepared THIS time.  Straight to the doc. Yep - onto the medication. then he slept. WOW!!! It worked before the horrid routine of sleeping with mum started! He slept for the 3 nights straight through. AWESOME we thought. Honestly it was a miracle.  But then, at about 2 months old... trouble started... no sleeping again!  No power puking so we knew the reflux was not the issue.  So what now???

At the time Makayla and Connor shared a room. She was determine not to let her baby brother out of her sight ;).  We had been trying everything to get her to sleep in her own bed so we happily let the baby sleep in the same room. She also had a night light, actually a scented candle, and soft lullaby music always playing as they drifted off to sleep. For those of you not in the know - ASD has a lot to do with the senses - sight, sound, touch, taste and smell.  Can you pick the issues??  We had absolutely no idea!  It's so easy now we know more about Connors world.  We look back at what should have been warning signs.

Out of desperation we moved his cot into the quiet, dark, then toy room to let him "cry" him self to sleep - but as we walked away from the shut door a miracle happened - silence!!!! Straight off to sleep. OMG Seriously???  He was the perfect sleeper.  He was the perfect, non clingy, happy to play by himself, sleeping bubby!

Then at about 18 months things began to change again.  Still sleeping in his dark quiet room alone, he would wake and rock his cot for hours against the wall.  Not crying but not sleeping any more.  Perhaps he always did it but as he got bigger his rocking got harder. We will never know.  Deciding to do away with the cot, we put a trundle bed in his room. We could still hear rocking, but not as bad.  BUT we know he did not spend the night sleeping.

Every morning we would go into his room to find a MESS and Connor in the strangest places sleeping.  I posted so many photos on Facebook!!  His favourite was in the chest of draws. He would pull out all the clothes and draws and sleep in the draw!  So funny!  We found him in shelves, ontop of cupboards, on the floor - anywhere but his bed.

 Draw Sleeping: April 2012

Once he learnt how to open the door to his room he would roam the house to find "stuff" to do.  Stuff like bake a cake using 2 dozen eggs and all the jelly crystals... or making rivers and hills using morning fresh and coffee.  We even found his bed upside down one morning.  At the age of 2 1/2 years!!!  Just shows his strength.  So then we locked his door. We created a "safe room" for Connor.  We removed ALL the furniture except a mattress and left his toys (cars) with him so he could play safe while we slept. Sometimes he would bang on his door waking everyone, and would only settle with me in the room, so eventually the bed was moved back in - for me!

NOW - during our first face to face visit with our Pediatrician, the issue of sleep was discussed.  AGAIN we did not know that other kids had this problem!

Most ASD children do not have the ability to produce a chemical our bodies naturally produce called Melatonin. It is this hormone that makes us tired. To read all the tech stuff - wikipedia has some great info: http://en.wikipedia.org/wiki/Melatonin

So Connor was prescribe slow release Melatonin.  The very first night he fell asleep about 30 minutes after giving him the medication.  All night we sat up waiting for him to wake.  So funny. Every house creak or groan we thought was him up and about again. His little body must have been so exhausted and he caught up on 3 years of no sleep in the first week.

We know he still wakes, and will rock and sing himself back to sleep, but these are becoming less and less.  He still has trouble sleeping in a bed. The melatonin assists him in feeling tired, but routine also has a part to play.  We understand this now.  If he has a big week or meltdowns - his body will shut down and he will sleep without the medication, but only for an hour or two. And when he wakes - he is full of beans!  Into everything! AGAIN!! So we re-introduce the meds and off to sleep he goes.

 Floor Sleeping (and snoring): July 2013

We have also been discussing getting him a weighted blanket - again a sensory thing, to try and get him to bed and stay put.  Will keep you in touch with how that goes :)

So - Makayla still tries to sleep with us, Connor still rocks and sings, Shylah giggles and claps to herself throughout the night, and we are STILL praying for sleep!!! 

Daily life

Another day in paradise. Lol. Sarcasm. At the chemist this arv and he had to touch everything. So as most mums do I asked him to stop and stand by me. Was told "don't talk to me!!". Held onto his wrist to stop him from wandering and ended up getting punched repeatably. Not normal behaviour. But not totally unheard of from Connor. And of course the stares from the woman in front if me with the "oh dear" long sighs from her. Grrrrr. Going to be a long night.

And of course... Time out ensues once we get home and the behaviour continues.  His juice isnt right so the cup gets sent across the room followed quickly by the iPad.  Starts with a 20 min time out and as the phrases of "don't talk to me" "I not do" "leave alone" continue... 5 more minutes added ... And another 5 until 45 minutes are on the clock.  To the room. No cars and no iPad....

Check on him 20 mins into the time out and yep. He is asleep. Lol. Now we know its a sleepless night tonight! It's now 8:30. Time for my weekly hour of TV... Criminal Minds... And yes he is still awake! Will update :)

April 2013

We Made the Paper!!!!!  April 2013

Melt Downs - the reality

This is the Facebook post that promoted the blog....

4 Sept 2013

A day in the life of Connor. I don't often post "real" but share what others post, pictures etc. But here it goes - the "reality". 

What a melt down is... tonight after throwing his food at us, then demanding, screaming he wanted more, then not sharing, in fact shoving Shylah viciously away from his toys... we got to melt down time. dug his heels in not to go to a bath... so physically carrying him, kicking and screaming to the bath room - he collapsed into a heap on the floor. 

 Screaming all the time, banging his head on the tiled floor repeatedly THIS is a melt down. 

Thankfully this does not happen everyday now. 

THIS used to be a 3-5 time a day event. And what actually caused this shocking behavior??? Could be a noise he heard, something different he ate, a smell, a touch, a color.... It could be a reaction from traveling (he does not travel well) LAST Wednesday. We don't know what turns our beautiful boy into this monster that you cannot discipline or console. 

That is the reality we live with. 

THAT is ASD.

Kindy letter

June 2013 - A letter I wrote to the other parents of "Kindy Kids"...

Hi Kindy Mummies and Daddies

My name is Connor.  You may have met me at Kindy, seen me playing with your son or daughter or even heard them talking about me.  I love playing with puzzles and the cars, counting and building things and really love transformers!!  Mum tells me I have a beautiful smile and pull cheeky faces.  I also do a few really really funny walks.

What you may not know about me is 12 months ago I was diagnosed with ASD (Autism), ADHD and PICA (strange food cravings).  My family and I are working with an occupational therapist, speech therapist, dietician, staff at the ACES and my Kindy support, Mrs Heywood and Mr Bruggeman, so I can relate better with the world.  18 months ago I did not talk at all, so Mummy and Daddy are very proud of all the words I can say now. 

What this all means is I am sometimes a little bit different.  I need routine, I take things very literally, the sense of touch can hurt me, I eat odd things, I struggle to understand my emotions and sometime do not understand appropriate behaviour. I also get very overwhelmed by all the activity, noises and smells at Kindy – and because I don’t know what to do about it, I do strange or wrong things. 

I really enjoy Kindy and I am learning.

A month ago my Papa, whom I spent a lot of time with, went to heaven. I loved my Papa very much and miss him heaps.  Papa was very special to me and because I don’t know this feeling or the emotions my family are dealing with, I have been using one of the emotions I know - anger.  

Please be patient with me.  Mummy welcomes talking about me so if you want to call her please do.  You are also welcome to talk to Mrs Heywood if you have any questions.

Thank you for taking the time to read this and I look forward to saying hello to you.

Connor

Hi Mums and Dads.  

Connor’s diagnosis has meant a huge learning curve for us and our family, and I am happy to share our journey and the impact it has had in our lives with you.  If you have any questions or concerns about Connor or his diagnosis please feel free to contact me.  Thank you for your understanding.

Deb Smith

ASD Awareness letter April 2013

I posted this all over Facebook during April 2013 as an awareness story...

Since it’s Autism Awareness month I thought I would share a bit about our journey with Autism.  Please keep in mind – all stories are different....

4 ½ years ago my beautiful son was born.  My second precious baby, first son, he totally melted my heart!  From this moment on – I knew he was special....

Our first few weeks at home were tough.  He would not breast feed from birth, and I had to make the decision to comp feed, and then totally on the bottle.  This coincided with a diagnoses of reflex, something we had already been exposed to with our elder daughter.  Once medicated for reflux, his settling habits did not improve (but projectile vomiting and screaming in pain did ;)). Sharing a room with his sister, he kept the whole family awake. Out of desperation one night, he was moved into another room and as we shut the door he instantly went silent and slept.  From then on in a totally dark, sound proofed room he would rock himself, sometime for hours, off to sleep.

Jumping forward 6 months, introducing solids...never happened!!!  EVERYTHING we tried was blown back at us in bubbles!!!  He simply did not want food.  We tried everything!!  This would then bring tantrums like you would not believe! He would literally THROW himself to the ground, never a care with what surface he was crashing into! Or head butt – anything in his way.... At 14 months, just walking, not talking - even a word, and still not eating much we went for our health check up and was referred to a speech therapist. After a few sessions we gave up. The advice we were given brought more tantrums.

The next couple of years were a blurr of tantrums, general misbehaviour, wondering away at all hours, day and night.  He played rough – with all of us, with no understanding of the pain he caused, when he himself did not seem to feel pain. His eating - preference to paper and dirt rather than food. His speech did not develop as we expected (“he is a boy – they are slower to develop” - we were told numerous times). Sleeping became an issue.  He slept for no longer than 2 hours a stretch, then would play for hours. He would wake and help himself to anything to play with.  His favourite was coffee and dish wash liquid – rivers and hills on his carpeted bedroom floor.  One day it was eggs (all 24 I just bought to bake) and 9 pkts of Jelly crystals.... “cake” he told me when I discovered it the next morning!!  His passion for cars became extreme.  We could not go shopping with purchasing a new one – or the kicking screaming tantrum would erupt. “You are spoiling him/he needs more discipline” from helpful friends and family.... And if we could not find that exact car at bed time – no chance of sleep!!!  Potty training – won’t even go there!!!  Could not put underwear on him without yet another tantrum. Let him run naked and yet again – tantrum til the nappy was on.  Bathing and teeth brushing.... oh I could go on and on and on.

In this living hell, we also had a very funny, clever little guy with the most beautiful smile, if things were going his way ;). He pulls the funniest faces and does the craziest dance moves you have ever seen.  Show him how to do something once – and he can copy.  Puzzles and patterns were no challenge for him. 

A year ago our gorgeous baby girl arrived, and fearing for her safety we knew we had to get some help with the then 3 ½ year old terror we had in our home.  We seeked help from our health nurse on the first ‘baby’ home visit.  Thankfully, she was prepared.  Tracey had seen Connor on numerous visits and had already mentioned, but I rejected, the possibility of Autism.  Within weeks we had seen an occupational therapist, new speech therapist, dietician, our GP and then paediatrician and came out with a diagnosis of ASD – Autism, PICA, ADHA with echolalia.  You’re welcome to google it all – I had to!!! Lol

Now comes the interesting stuff...... with all this treatment my handsome little man has not thrown a head splitting tantrum in almost 3 months!  If you meet him, the chances are you will get a smile, but not much eye contact!!  And he is talking!!!  Improving every day!! His eating is still limited but he is day toilet trained – still has his nappy for bed.  He still has passion for certain things – cars, “bumble cars” (transformers), cars, dirt.  He MUST have a fan on at all times in his room where he can reach it. He won’t shower but will bathe in a tub (we don’t yet have a bath). His compassion for others is amazing: apologising before being asked if he hurts you.  Tonight, fearing for his baby sisters “hurt” he ran to tell me “Fan off baby - Fan up baby”. Knowing he was talking about his fan – I raced into his room where he had already turned it off so “baby” did not get hurt J. He just wanted me to lift it higher so he could turn it back on!!!  

He now attends Kindy (something we thought 12 months ago would have been impossible – “expelled in the first week” we joked!!) and the ACES unit.  He is making friends!!! Without hurting them!!  He can share!!! It’s all truly amazing when we see how “improved” his behaviour is!! 

Now why am I sharing this story?? This month is Autism Awareness Month.  While my son’s life, and ours, has got a little easier, he is not “fixed” or “cured”.  Autism is with us for the rest of our lives. We have so many more puzzle pieces to put together to understand how he experiences this wonderful world.

It is through strategies and assistance we have got to the point that I do not fear taking him in public and the ensuing tantrum with judgemental stares or “advice” given for fixing his “bad behaviour”. I am proud of his achievements BUT it is only because WE are AWARE of his world that he has come this far.

Do you know of a child who is so frustrated or unaware of the world around them? Strange behaviours? Repetitive “naughtiness”? A family who struggle with anything I may have mentioned? Awareness is not just about understanding my son or our struggles – it’s about assisting a family who simply, like us, did not know this was caused from a health issue!

I am out and about tomorrow (April 16^th) in the main street of Chinchilla for “Go Blue Day” – and would love to tell you more about how we are handling..., what we are doing about etc etc.

This is just our story.... please feel free to share...and thank you for taking the time to read xxxooo