Holiday blues......

Thanks Facebook peps for putting up with my blow by blow holiday posts! Living with ASD in our house has seen so many (too many) sacrifices, including holidays. 

Our last family holiday was over 3 years ago to a family wedding at Vanuatu. The lead up to the holiday was extremely stressful, with Connors tendencies to run off, escaping any area in the middle in the night for a stroll, inability to sit still for any length of time (car trip & airplane flight), frustrations and head splitting tantrums due to communication difficulties and eating issues - the whole thing almost caused me a breakdown before we began!!! Lol

The trip was awesome! We were surrounded by family who were aware of Connors tendencies, and the locals loved the curly blonde haired baby imp who was often returned to us before we knew he was missing! Hehe. Walking in the beautiful gardens at the resort, we were greeted by gardeners and such with a "Good morning Connors Mummy/Daddy". 

But this was not a 'normal' holiday. We had over 30 people on the flight that we knew....more than that at the resort! Not something that would normally occur on an annual holiday. The trip did show us how difficult travel could be (without ALL that support), and this was pre diagnosis!!!!!!

So holiday time was put off. Easier to just stay at home. But during the past 18 months, since Connors diagnosis, intervention and strategies have assisted him so much, his behaviour and our understanding of his needs has improved so much too. So after the difficult times for me personally this past 8 months, when a friend offered to support me, in fact pushed me ;), to take a few days away with the kids, I thought we could try it.....

And I am and will be forever grateful for this opportunity. Sounds crazy but it has shown me that holidays, with the right environment, attitudes and planning, can be fun. I had lost that... The fun....

This trip I am seeing things through new eyes. Enjoying the simple things. 

I watched with utter joy the amazement on his face when he saw the ocean for the first time (that he can remember). His excitement picking up a sea shell and putting into his pocket. And then with pride as he walked up to a castle some strange kids were building, to place the shell on the castle and walk away. The laughter as the sand washed away over our feet with the waves. The giggles as mummy tried to jump waves. The squeals of delight on a carousel, throwing a coin in the pond and making a wish.

During our first morning stroll to the beach, our friend joined us. While she regularly comes here for a break, rarely visits the beach, but did this morning. She commented tonight how much she enjoyed it and how seeing all the kids faces with smiles and laughter made her day. How different it is to see the wonders of the world around us through any child's eyes. 

It's the simple things.... The laughter, smiles, astonishment, the new experiences. I guess all kids experience these things, but we got lost in the stresses, treatments, interventions and behaviours. 

Start looking anew at your world peoples. Last night we sat for 30 mins to watch a crab scurry on the sand. 

Simple pleasures. And yes, I am having fun too!!! 

Happy holidays! Xoxoxo

Ps - will soon blog the whole holiday adventure, including photos in case you missed it ;)

A Mummy Moment....

I had a very proud "mummy moment" the other night I just had share :)!

As those of you following may recall... Connor has PICA which means he is very limited with his food selections.  One of his main foods is chicken crispy "Shape" bickies.  They must not be broken, and must be fresh.  Also, depending on his mood, only 4 or 5 in the bowl at a time.

So you can imagine the amount of wasted bickies in the house! If I don't catch whomever opens the packet for him, and put straight into an air tight container, they have to be thrown out. Today, doing a spring clean, I found 3 boxes opened... Grrrrr! Of course I thought I could trick him.... I put them into containers once I found them (3 different containers of course).

When he came to ask for the usual "red juice and bickies" this evening, I followed the routine and placed 4 into the bowl. "Yuck!" And they were tipped into the bin.  We tried all 3 containers... With the same response.  At this point I was very frustrated. Tired of seeing the waste - I told him "no more bickies!" Yeah that went well.  Of course I still have a stock pile in the cupboard but after 3 almost full packets being thrown out I was not going to open yet another! Sent a very upset little man off to bed....with no bickies. :(

Letting him cry it off, I headed outside to hang out some washing. When I came back inside the crying had stopped. All was quiet.  I had suspicions that he had helped himself to another packet.  The pantry doors left open in the kitchen was a big give away ;). I went into his room and I asked him..."did you get some bickies?"  No response. I checked around him and could not find a box anywhere.  So left the room.  I returned a few minutes later to put some clothes away and a little voice said...."don't be mad mummy"..... Now normally I would be mad. Take the bickies away and send him back to bed empty handed. Not tonight:). New strategy... I asked for them, and then we together tipped the whole box into a container, counted out 5 for his bowl, and sent him back to bed. 15 minutes later he was asleep.

Let me explain why my typical ranting reaction did not happen. This was the first time Connor actually owned up to doing something wrong!!! Not the monster (read my other posts), not one one of his siblings, not the invisible mischievous elf that sometimes lives in this house! 

HE ACTUALLY TOOK RESPONSIBILITY FOR HIS ACTIONS!

This is something we have struggled with...how can we guide him towards good behaviour if its not him making the choices? 

I often battle with the right way to handle discipline with all the kids, not just Connor.  When I ask for something to be done, or not to be done, I expect it done. And when it's not, I am a firm believer in actions have consequences. Do something wrong, and you are punished.  This can be in the form of time outs, something taken away etc etc. But I have also recognised the fact that none of this is working with Connor. 

So I hope that tonight he learnt that owning up makes mummy happy and he is more likely to achieve a better outcome. I also hope he learnt to tip the box of bickies into another container ;)

Seriously .... It's tough sometimes.  How do we handle the bad behaviours? My current strategies are not helping, and in fact I am learning they are only causing more distress to all of us.  It was interesting that just after this occurred, I read a post on the Facebook Autism Discussion Page - on this very topic! 

The link:

https://www.facebook.com/autismdiscussionpage/posts/578312775581560

So - the mummy moment.... Yes - Connor owning responsibility AND the fact that mummy handled the situation in a hopefully more productive way! Cheers for mummy!!!!! 

Hey - we have to cheer ourselves on sometimes!!! 

Christmas is almost here....

And with it all the end of year events....

Sometimes... Tonight was Connors kindy concert. Something we had been preparing for. Social stories and lots of encouragement, but we were not getting much excitement from him about it. 

His teacher pulled me aside one afternoon for a chat about the concert. Firstly she stated that he loved the practising. He responds well to music and dance, but understood if I did not bring him. I was taken aback a bit but said we would be there, even though we were to be in Toowoomba for his medical appointment. She also let us know that he would be placed on one end in case I saw a need to remove him. 

After much inner debate I decided the trip to Toowoomba would be cancelled so he did not have to contend with the trip on the day of the concert. 

So the evening arrives and off to the concert we go.....

Once dressed and all 3 kiddies are in the car, Connor demands his transformers which were left on the table... During the short trip we had tears and drama. Hitting his baby sister. No consoling him. By the time we got there I was ready to go home. :(. But decided to persevere. This concert was important. Even if he did not recognise it. 

So we arrive. Bub in the pram, older sis waiting by pram, grandma also waiting patiently. Next... Connor. As he was getting out of the car I noticed he had wet himself. Wtf??? Has not done this in a year or more!! So leaving the others we return home to get changed, and to pick up the transformers. 

Return trip to the school. "Park now". "No Connor it's concert time. You and xxx and xxxx can sing songs for the parents tonight". "No. Park I tell you". So we hop out of the car and head into the hall. He sees the other kids and starts playing. All might be ok....

The kiddies are all lined up and sitting so beautifully, and as promised, Connor was on the end. He sat so quietly during the "reflection" song. And then the performances started. The first few songs he did not really participate in.  My heart went out for him.  His angry face was on. I started to tear up at how lost and angry and frustrated he looks. 

Until I realised he could not see the prompting teacher at the back if the hall. So big sis, who was also videoing, started doing the actions. too. He could see her and started to join in. It was going to be ok. He started enjoying himself. He smiled. That awesome heart melting smile. It was going to be all ok. 

This gave me a chance to check out the other kids. It was a kiddie concert after all. A few were misbehaving. One needed a parent with them. It made me wonder if the "special needs" of my son were not needs of very child. All need to be guided, loved and fears need to be overcome!!!

I was so very proud of my boy. He did so well in the end. When his name was called out for his "records" he proudly strutted up to receive his pile. He is growing up so fast it is scaring me. I fear so much for his future sometimes. Will the guidance we and his educators be enough?

Well we have just one more Christmas event left to go. I hope, since this time WILL be in the park, things might go a bit smoother from the start....

And in case I don't blog against before Christmas, I would like to wish all of you a safe and joyous time. 

Thank you for your support and joining me in this journey....

Ps. Sorry re the quality of the photos. Cropped from the awesome videos big sis took of the night. I did not, for privacy issues, want to show other children's faces. :)

Prep time fears

Wow - here we are in October and I have not blogged!!!

Only a few more days until the school holidays are over.  I have heaps of plans for blogs but would love feedback ie questions and suggestions for the blog.

As for our lives - lots has been going on, apart from the kids driving me nuts over the holidays!!!!

Our renovations are completed and the painting has started.  We have plans for completion by mid month so we can resettle back at home.  My mother who has graciously allowed our short stay turn into 3 months, has begun to also make plans - for our absence!!! lol

Little man has been so so.  I think his behavior has improved, but I am sure once school starts back it will become difficult again.  This term at Kindy a lot will be going on.  Autism Qld is visiting to assess and assist the school, our private OT is also meeting with staff and his prep teacher next year to discuss transition to prep, which scare the hell out of me!!! We also have the new member of Connors support team catching up with the school. So could be interesting times...

Why does the transition scare me?? So many reasons. so let me start at the top....

Little man "roams" as we put it.  The professionals call it "Truancy". Basically he gets it in his head that he wants to be somewhere else - and makes it happen.  It's not a malicious thing (ie running away), he just needs to be gone.  He will up and leave in a second.  While your in the bath, toilet or changing bubs nappy.  And because he happily plays quietly, you don't realise he has gone.  We have put double dead bolts on our exterior doors, nailed his windows shut and chained and padlocked the gate - but still he goes.  He finds a way.  We have found him up to several km away - on his way to "somewhere", and he has scared us quite a few times.  Due to all the door knocks over the past 3 years in our neighbourhood, most neighbours will spot him and bring him home.  We even have the local police informed so if he is spotted he can quickly be identified. I have even been considering buying him a medi-alert bracelet so he can be identified quickly.

It is also super scary when he roams because ASD kids are attracted to water!!!!  He can swim.  Something we have done with all our kids, but still as every parent knows, no water is 100% safe around little ones. I am very thankful when we drove to a local watering hole recently I asked him if he wanted a swim - his reply "but mum it's dirty!". I hope he remembers that - no swimming in dirty water!!  Earlier this year over a dozen children with ASD drowned in America.  So very sad.

So - number one fear of Prep - no childproof area for him.  At least he will be in uniform so whomever finds him can take him back to school!! As long as they are the right kind of people.....

Bullying. Yep it's a fear for me.  After my Dad passed away in April, he started have massive melts downs at Kindy.  As you may have gathered from some of my posts his meltdowns are not directed within - he explodes outwardly - thus hurting others. Because of all the "incident reports" I was signing at Kindy, I was concerned he might get labeled "a Bully".  This was the main reason I wrote a letter to all the parents, so they would understand his behavior. (See Kindy Letter Blog) I do not excuse the pain he causes others. And we are working with professionals to curb it. But he does not have this diagnosis for no reason.

But even though he may hurt others, he is a very loving and gentle boy. One on one - an awesome helpful guy!!  Funny and adorable.  BUT he reflects everything around him.  If he gets bullied, and because of his natural trusting nature and non-understanding of social behavior, it is very likely, someone will get hurt.  It will be my son left standing!!  Believe me!!!  He is a strong kid for his size and age... and I KNOW who will be getting in trouble.  To a degree, this is what is happening now, both at home and Kindy.  His behavior is a reaction. Not a planned attack.  I see it time and time again between his older sister and himself.  But I only have 3 children to watch - not 23.  So I can see and stop the problem - normally his sister - before she gets hurt. lol. Sounds crazy doesn't it.

So there you have it. my fears laid out.  I am not even going to mention my concerns with the style of teaching, etc etc... until we get there ;)

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