Going down the drain ....

Ellie has a fear of the drain in the bath.
Today after her bath, I tried to show her what happens when you pull the plug out.
As a test for her I put several little people

and a Barbie in the bath while pulling out the plug as our sacrifice.

So thinking I am mother of the year and have all the solutions to her fears Ellie just looks at me and says
"my toe will get stuck, and it will go away, and wont be part of my body any more".
What can I say to that other than, no it wont?
Finally she ends it with "our bath is very scary".

I'm sure as she grows her fears will change to other things that I in my wisdom will try to conquer but really she will probably just conquer and work these things out on her own, all I can do at the meantime is wrap her in a towel and reassure her she still has 10 toes.

Present

Best Christmas present already arrived today when Bugs woke me up, came out to the Christmas tree and pointed to presents. 1st time ever - he knows - he understands.

Merry Christmas everyone - hope you have a wonderful, wonderful day.

Ouch.

Tonight is Bug's school concert. But I am home. Poor Ellie has been sick for a couple of days and has been throwing up all day ..... so....  what do you do when you are torn?

I love going to the school concert, and have been looking forward to it for weeks. Just sitting there with a smile on your face while your child is up on stage doing their thing. Felt so bad tonight I actually cried.

Ellie obviously couldn't go and throw up between acts and she has been clinging to me like I am her life today - just couldn't leave her at home. I'm also admittedly still feeling paranoid as last time she was sick she had a seizure and I really don't want to go through that again.

So now I sit here, feeling like I've missed out on a moment I shouldn't have and I feel so guilty and sad at the same time. What kind of a parent misses out on their child's school concert?

Big Loch and his mum have gone - so at least he will have a cheering squad and Loch is going to video it for me - so I'll have to watch it with the little guy when he gets home.

My heart broke a little when Bugs was told to hop in the car - and he ask me to put my shoes on: "shoes" and pointed to my feet.

Ouch and sigh.

Ode to Great Step Dads

Bugs has been invited to the Variety Christmas Party today - a party in Melbourne for kids with special needs. Big Lach has the day off, so I am staying home with Ellie and he is taking Bugs down on the train as siblings can't come.

Now, if I'm completely honest here, I'm not sure if I would do it on my own. I would probably take him to the party, but drive down in case he doesn't like it - I guess so we have a quick exit.

Not big Loch - "Bugs loves the train, we'll spend the day in Melbourne".
And .. he's right Bugs does love the train - he loves nothing more than spending a day out of the house experiencing new things.

The morning didn't start off too well with Bugs refusing to get dressed, or even get in the car. We showed him on his speech device what he was doing in the hope he would realise and get dressed.

TODAY           TRAIN            CITY               FUN          

Helped for about the time it took to get 1 sock on.

Anyhow, Big Lach ended up getting in the car and turning it on, while Bugs panicked at the thought of being left at home and got dressed and ran out to the car.

So off they go - into the great unknown for a fun day.

Big Lach amazes me in his faith that it will all be ok. He's so much more willing than I am to take a gamble and his only motive is that he wants Bugs to have a fun day out.

Blessed blessed blessed. That's all I can say. What a lucky kid.

Absent and missing

I haven't written here in so long ......

but feel the blog vibes coming back.

Will post when I get a sec .....................

Open and Closed.

It's been a while since I wrote here. I think I've been partly in some kind of winter hybernation.

Things have been moving, school holidays have been here and have ended, old friends have appeared and ambitions have been accepted by the universe - kind of.

The reason for really writing today is to acknowledge that which I don't acknowledge outloud.

Today it's been 12 years since my mum passed away.  12 years that have flown by but at the same time have included so much stuff. While part of me recognises that I am well and truly an aging adult, with kids of my own, when it comes to Mum I think I am still that shocked barely 21 year old.

So, the warning to my self and other ladies, don't ignore your body. Especially when you are scared.
I am very much like my mother and go into instant denial when I feel something is wrong with me. You would think I should have learnt my lesson.
Whilst I don't believe I have cancer or anything like that I know that at time when I have worried about anything medically I do tend to deny and ignore.  I guess I worry about my strength to cope with illness, fear, bad news, medical procedures .... anything.
The stupid thing is that in the meantime I just worry.

From what I can work out my mother had a lump in her breast for about 6 months. She never got it checked out. She did worry about it. She didn't tell anyone. The cancer spread from her breast to her liver and to her brain and she worried more about things, about symptoms. She still didn't tell anyone and she still didn't get it checked.
One day she got a headache, which was really a brain bleed from her brain cancer. The day this happened she was at work still. With breast, brain and liver cancer.
A week later after doctors scrambling to work out what was going on, she was prounounced brain dead and we had to decide to turn off her life support.

When writing and reading this - the truth about my Mums death sounds so hard and harsh. I am sorry to anyone reading it. I think I am just trying to remind myself that ignoring things wont make them go away - it makes them worse.

So, today being the 13th of July all I want to say is that I miss my Mum. Nothing was ever the same.
I'm sad for her that she never got to meet her grandkids, see her kids grow up,  retire, travel as she wished and generally enjoy her life.

Robyn Salt

Green eyes, brown hair, left handed. Collector of owls, lover of rain, reader of murder mysteries.

Black tea - no sugar.

Person with faith, walker of miles, best soup maker in the world, user of black humour

and funny sayings.

Carer, mother, and teacher.

2

Little Ellie is 2 tomorrow.
I just can't believe it has been two years since she arrived.

It makes me sad, proud and happy all at the same time.

Sad because time is flying....

Proud of what a smart, funny and happy little person she is becoming.

and happy as I just look at her and can't believe I've been blessed so much.

 The other night she gave me a bedtime cuddle and said "Happily Ever After Mum", and I know exactly what she was trying to say to me.

Happily Ever After to my gorgeous daughter. I love you so much.

BRRRUUUMMM

On the weekend a friend of our organised for us to go to a friend of hers house. So that Bugs could have a go on a bike. Bug sits on a bike. He can steer, he can kind of move the pedals - but he just can't put all those things together. He either drives straight into a fence, or stops pedalling and steers.
In other words he has motor planning issues.

We recently got him a scooter after seeing him grab at another kids, and try and get on.
He can steer a scooter, and push it along, but can't balance on it at all, so he can't hold his foot up and glide like you see kids. Seeing him try however, and in the beginning have fun, was so nice to see.
We took him to the tennis courts, so he can't ride off anywhere, or steer onto a road or something.
He had a great time until he tired and became a little frustrated.

Bugger it, I'll just drag it!














Anyhow, on the weekend I wasn't sure what to expect. We had been talking with my friend about a tagalong bike, or something else that Bugs could enjoy with someone else riding it. Turns out she knew of someone with a child with special needs with a modified bike. I didn't really know what to expect - but I didn't expect this - check it out!

There we are - riding a bike! Together. Pretty cool. The best thing about the bike was that firstly I could see him, he wasn't behind me. Secondly, because of the way the bike works he could feel the steering. If I turned left his handles would turn left. It could in some ways teach him how to ride and give him the feeling of riding. Also the pedals had stirrups so you could pretty much strap his feet on the pedals if need be. The cheeky guy did let me do ALL the work. But the smile on his face was worth it. The downside of this bike - the price tag. Apparently it costs nearly $2000.
I've done a bit of a search since on bikes for special needs. There are some pretty amazing bikes out there.

We may have turned a few heads with our strange bike -
but it felt pretty good to go on my first bike ride with the little guy.





# UPDATE# Just read through this and my how things change. It's now December and one of Bug's favourite things to do is ride a scooter - he even got a better one for Christmas - he steers, he balances and he scoots around like crazy. Bikes are still a problem, but he sure loves his scooter . #

We came, we saw, we wiggled....

Ellie has been sick for a bit over a week now. It started with just a bit of childcare-itis, the sniffles, but has developed into a nasty virus with snot, fevers, crankiness, clingyness, more snot, occasional vomiting, did I mention snot? and a seal like bark.

We bought tickets ages ago to see the Wiggles on Thursday. Ellie is quite the fan. Loves all the songs. She had a pretty good sleep the night before and seemed pretty good that morning so we decided to still go after some ummming and ahhhing. She slept on the way down,

Once in St Kilda we had some lunch and then entered the Palais to see the concert. I've never actually been to the Palais Theatre before. Driven past it plenty of times. It was pretty amazing inside.

 

Here are the kids waiting outside.                                                             

and having a bit of a stretch.

Bugs and Ellie were in their seats. Bugs was kind of jumpy and seemed nervous. He held his ears the whole way into our seats. I think the crowd was pretty overwhelming for him - and loud. I brought his safety ear goggles with us. I usually put them on him at home if I need to vacuum as previously if I brought the vaccum out he would get very anxious and either try and put it away - or run down the back of the house and close the door trying to get away from the noise. Anyhow, I brought them, which was great. As soon as I put them on him he smiled and sat still and relaxed.

Here's some photos of the concert and the kids.

So, it was fun. The kids really loved it. Bugs smiled and clapped, Ellie sat there with her jaw dropped and eyes wide open, especially when Murray walked around the aisles waving. I don't think she could believe it.

Unfortunately our night didn't end up so well as around 6 that night Ellie's temperature went up and up and panadol wouldn't get it down. She also was super lethargic. I took her into the hospital.
I was thinking they would look in her ears etc and send us home, instead they wanted a urine and a blood test ontop of all the poking and prodding. Ellie handled it all really well. Even the blood test which amazed me. Maybe she was just too sick to care. 5 hours later they got the paedatric doctor to come and have a look and tell us if we were staying or going. They were just concerned by how high her temperature was and also what was causing it. As all the tests were clear he sent us home - both very weary and glad to go home.

                        Here's the poor possum in hospital after a very long day.

Ascending ....

Well again the autism rollercoaster has continued taking us for a ride.
This time however it seems to be heading on the upwards once more.

As I've mentioned in the past my son's behaviour seems to improve then worsen then improve then worsen. Right now, if we are on a ride - we are heading upwards, past the pink fairies, the unicorns into a wonderland - he is that good.

My paranoia about this rollercoaster ride is honestly so strong that even writing this is hard, as I might break the spell. Mentioning it to someone might jinx me and I'm touching wood constantly. That may sound like a joke, but in all honesty I do feel like I shouldn't mention it, like it's some cosmic mistake that will be rectified and taken away.

It began just before we went to Brisbane. Before that he seemed quite unhappy, on edge, very frustrated and touchy. Even if you asked him to put on his shoes he would throw them down and say 'no!', then go and pick them up and put them on. Everything had to be protested against, even small things would be so frustrating he would hit the wall as hard as he could and give you a look that pretty much said **** off. He didn't seem unwell, he was sleeping, he was eating. I had no clue what was bothering him. The only thing I could really do was hug him when he seemed upset and honestly I think it soothed me more than it did him.

BUT, then something happened a week or so before we left. He stopped, started smiling, didn't seem so frustrated and seemed more relaxed. Since then we have pretty much had a very relaxed happy boy who seems at ease with most things, can listen and you can trust. He loved being away, he didn't escape, run, or hit the deck once. He has been talking more. Smiling more - we even have been a bit lapsed in locking the front door as he hasn't tried to do his escape from Alcatraz routine in ages.

So it's been making the think. As much as I know with this what comes up, must come down, there are somethings that will never be again.  Things that regardless of the ups and downs haven't reared their ugly heads in so long that I feel happy in stating they are gone for good. These are all things I thought would never improve. Things that I am so proud of with him for achieving and I'm going to focus on these.

1. Middle of the night romps! WHOO bloody HOO. Bugs can still take a long time to get to sleep but gone are the days where he would wake up at around 3 am most (5 out of 7 nights) and not go back to sleep. This was also a time where he couldn't be trusted for 3 minutes on his own without something horrible, usually very messy happening, so there was no dozing for me during this time.

2. Nappies. WHOO bloody HOO HOO again. I have no idea how we finally toileted Bugs. It's kind of as though something just clicked one day after months of me not really knowing how I could make him understand what was required. His understanding of what is being said to him has improved so much. He still struggles with some concepts and even requests, but he usually gets it, especially if PECS are used. Once he was toilet trained we have rarely had accidents and he has never wet the bed.

3. Iron clasp wrist holding. From the time Buggies was 2ish to about 6 we pretty much wouldn't go anywhere unless I either had a steadfast hold of his wrist or I was carrying him. The main reason was that if I let go - he would go. Usually without a clear objective. He would just run. Kind of Forest Gump run. Two particular things to mention here. Firstly picture my father, who can't run very well, running down the footpath yelling while said child is giggling and running as fast as possible down footpath. Me screaming after them as child runs out on road without looking or noticing the car slamming on it's breaks to avoid hitting him. Child still doesn't see car and continues to run until mother, nearly having heart attack, finally catches up. Mother crying, child giggling, grandfather now the one looking as though they are having a heart attack.
Secondly, 5 year old child running through local shopping mall while not as quick mother chases kid. Not pretty. Heads turning everywhere, happening most times child and mother ventured out.
Those days are gone!. Now I can actually walk without holding his hand. Mostly we hold hands though, but gentle relaxed hands, not hand over wrist.

4. Words!. Once apon a time I NEVER thought I would hear any words spoken by Bugs. He had absolutely none for so long. There were many times when I would be a part of a group with other parents who had kids on the spectrum and my child was the only one who didn't speak at all. It was quite hard. It was one thing to take your child to daycare and your child be the only one who didn't speak. The only one with an aid (if you could call them that) and the only one who was sent home with a communication book each night explaining all the 'difficulties' the staff had been having with your child that day - BUT - it was another type of heartbreak when you were sitting with parents who you thought had kids like yours. Kids on the spectrum, kids with the same diagnosis - yet yours didn't understand what was being said to him as well as the others and yours certainly didn't speak any words. It felt as though even with the kids who had the same label, your child was worse. Nowadays we don't have conversations, we don't have sentences - but we do have words and they are the sweetest sounding words you will ever hear. Words like - no, Mum, school, trampoline, drink and bus.

So, forgive me my rather long post, but I'm trying to remember that even though we have ups, and downs we have come a very long way and will continue to do so. I'm so proud of you Buggy Boo.

Tick tock .......

 “We don't have an eternity to realize our dreams, 

only the time we are here.”

Susan Taylor

I am feeling trapped, pushed and lacking of time at the moment. Time in all it's forms.

Time to just get daily tasks done. The time to do quality things with the kids. Time with my partner (who?). Time to do anything by myself, or for myself (who?). Time to see friends, time to be a friend. Time to study. Time to dream. Time to fit in anything that doesn't involve work, school buses, supermarkets, housework or chasing organising the kids.

Days seem to be rolling into a continual blur of stuff that doesn't have much meaning at all.

It's just filled with the things that keeps us all going. Going here and there with clean clothes. Kid going to school with lunch. This appointment met. This phone charged. These dishes done. This car with petrol. This pet fed. This floor vacuumed. This put away - UGH - it's driving me crazy!

I know these things need to be done. But a life of it. A life with not much but it is doing my head in.

'We say we waste time, but that is impossible, 
we waste ourselves.'

Alice Bloch.

The worst thing about all the things I am filling my life with is that it's all so temporary. 
It's a mind numbing, soul killing cycle that never ends.

Go to the supermarket - get food - turn around - all eaten. 
Wash the dishes - turn around  - more dirty dishes. 
Wash the clothes - turn around - dirty clothes. 
Vaccum the floor - turn around - crumbs.  
Child in bed asleep - turn around - child awake. 

If I was spending my time painting, or building something, or working towards something tangible - at least at the end of this I could look back at something and see the final result - eg. the painting. 

Now I know I'm doing an important thing - raising my two kids - and they bring such beautiful flashes of light throughout all of this.  They make me laugh. Make me notice small things I would have walked straight by and give the most amazing warm hugs you could ever wish for.They are what this roundabout I can't get off is for. Without them, what would there be? They are tangible.

It's just the other stuff. The wondering about what I will or wont do with this life aside from kids. What I will or wont see, experience or know. How much time there is left, and whether during that time I do the things I thought I might, should or could. 

Do I want to be here? I don't know. Do I want to do this? I don't know. 

Did I choose this? Yes. I did. 
Through every single choice I have made my entire life.

 

Here ....

WELL surprise surprise I made it up and back in a tin can in the sky.
I must admit, it wasn't quite as bad as I had imagined and I am starting to believe maybe it's just something I need more practice at.

Yes I was nervous, yes I had clammy hands, and yes I skulled an alcoholic beverage on my flight home. PLUS .... I think I recollect grabbing L quite a few times and with panic wide eyes that refused to blink, looked at him and said 'is everything ok?', 'what is the seatbelt light on for?'

Anyhow... the thing is I did it and I am here and once again my silly little fears turned out to be nothing.

Before i move on, I will also comment and apologise for my last nervous rambling before I left. These are the things that happen when

girl + blog + nerves + bottle of wine merge late at night

So .... to move past all that and to the good stuff - next post - the trip.

Fear and loathing ..........

Well, it's 7.30 and it feels like midnight. We are off early, on a jet plane to Brisvegas.
Once I arrive I will be ecstatic. We haven't had a holiday for such a long time, and it will be soooooo nice to catch up with my lovely brother and dad and their lovely partners.

Part of me is really excited, another part isn't thinking about our holiday in Brisbane it is dreading the flight. This is me, can't see the holiday from the flight.
In my life I have had many fears. Most of them, probably 97% have never ever come true. Fear at certain times has ruled me. Made decisions for me, and steered me in directions I've never wanted to go. It has made me choose partners, it has turned me towards jobs, it has made me even stay at home at certain points.

It's interesting really. I look at my partner, so relaxed, yawning on the couch. He doesn't see an upcoming disaster.. all the what ifs. He see's the happy ending. The holiday in QLD. The everything is fine.
It makes me wonder what is wrong with me, that I have to pick the bad out of the good, the hard out of the easy.  Fear is also the least socially acceptable of the two mindsets. People don't like a whinger, people think you are silly if you tell your darkest fears.


So here I go. Tomorrow on a jet plane. Off to experience new things. Off to just let go of control. Off to try and push through my life regardless.

Teeth, tummy and terror ......

I haven't blogged for a while. Things have been busy, school holiday crazy and now just illness and pain! I've had a massive tooth ache - dentist on Monday morning ... joy, joy, fun!
and ...... poor Bugs started his 1st week back by just being a little bit off, which has turned into a really bad case of the shits a tummy bug. It really started Thursday night, and tonight (Sat) he is still sick.

I took him up to a local medical centre tonight - usually a place like this would be a nightmare to take him. Huge set of stairs to want to go up and down, open space, lots of offices to try and open the doors of and waiting. Tonight he amazed me and sat with me, we looked at things on his speech device and he pretty much sat there and waited (in between toilet stops). Granted, he was ill but we also spent the time pointing out things on his device - like a baby - when a baby who was being held by it's mum started crying - and other things.

Even when the doctor got him to lay down so he could feel his tummy, Bugs just co-operated, and giggled when the doctor pressed his tummy.
Anyhow, hopefully he is fine. Probably just a virus ... etc, etc....

We are all going away in a week or so. We were going to drive, to QLD, with 2 kids, a small car, over a few days ......... but good old Jetstar has offered us flights we can't refuse so we are now flying.

Personally, I HATE flying. Which is probably why I thought driving was a better option. It just scares the heck out of me. I hate it when you take off, my tummy basically goes to my throat. While in the air, I am constantly checking out the faces on the air hostesses, to see if they look worried. Every time they talk on their little phone to the pilot, I panic thinking the pilot is saying - "Audrey - we are about to die - buckle up!".

The last time I flew Ellie and I went on a plane to Brisbane, it was about a year ago. I just about squeezed her to death for 2 hours, while she sat on my lap. She fell asleep after take off (probably more like passed out after I held her so tightly), so I had 2 gin and tonics, while sweating and trying to act perfectly natural.

 Anyhow ... obviously I lived to tell the tale. I tell myself all the logical, reasonable, grown up stuff - like how safe it is, etc etc. But I'm sorry, flying through the air, really fast, really high - just feels dangerous to me. I WISH with all my heart I was one of these fearless people (I convinced myself years ago, just about everyone is fearless except me). I wish I was someone who just walked through life thinking bad stuff wouldn't happen to me - or if it did "that's life". Nope, I think things like plane crashes, lightning strikes, strange diseases - all those things could get me . Heck, I even remember years ago when a satellite was coming down to earth - who's head did I think it was a possibility it could land on??.

It's not that I feel I'm the center of the universe - or anything like that. I just believe and know that bad things do, and can happen, and I have no control.

Either way. I'm here, and I'm getting on a plane next week. See that's the thing, I guess I have grown up a little. As much as it does scare me, I still do it. As much as I know I don't like it, I still booked the flights.  As much as it makes me feel a little nervous already, I know that 2 hours and it will be over with. 2 hours in a car would get us to - Bendigo???. We'll all be fine. I just wonder if they still serve gin and tonic at 8 in the morning, we are on an early flight?

She's my baby .....

Not too much to say today. Had an lovely drive with Ellie tonight (only because she was having so much trouble sleeping). I bundled her up in the car in the hope it would put her to sleep, instead it just gave her more to talk about.

First she was saying "stars" and pointing them out and then she would say "happy stars!" Then she said "happy kids" and "happy Mum" and "happy Lachie".

She then mentioned the moon and I asked her what colour it was - "yellow Mum" she insisted. 

Which is pretty good I think and she must have thought so too because she gave her self a round of applause with a 'YAAAYYYYY' while clapping.

Very cute.

Warm marble .....

I don't know if I should write about this or not, because for some reason it makes me feel a little awkward. But hey - this is all about experiences and I had an interesting morning which involved taking the kids with me to the cemetery as I tidied up my mother's grave. Something I have never done before. Of course I would remove old flowers and refill the little water pot things, but not actually taken water and a brush to it. 

It's really amazing how time leaves it's mark on things. There was dirt and dust and little bits of moss growing in cracks. It was all starting to look shabby and would depress me even more when I went out there. It was starting to look like it (she) was forgotten and like no one cared. Anyhow, I scrubbed away and the kids went crazy climbing on things. The kids love it when we go to the cemetery - it's kind of macabre really. They just want to climb on graves and even lay down face first on the marble that is warm from the sun. Luckily my mums grave is in quite a secluded and isolated spot so it was just us. Nothing was broken, and they mean no disrespect at all. 

Once I had finished it all looked so much better.  It was almost like wiping away all the years since she has been gone and it all looked brand new and in a strange way it felt good - like I had done something for her.

Away and home .....

Feel like I badly need to get out of here and get away at the moment.
To get another perspective, a little space, and a different view.
We are coming up to a trip to Brisbane at the end of April. Maybe that will help. 
It will be really nice to spend some time with my Dad and my brother (see below).

My brother Rowan

 

& my Dad

Don't they look alike?? 

They can't kill me about the photos - because they don't know about my blog. :-) 
- Special thanks to Mr. Potato head for lending us his glasses. -

Insomnia

This last week or so I seem to have a bad case of insomnia.
To be honest before this for a long time I would just about fall asleep as soon as my head hits the pillow probably due to just being too tired to care with thoughts of anything else.


Last night I discovered that listening to your IPOD while in bed does not help you to fall asleep. I must have shuffled through hundreds of songs. Some I would listen to in their entirety - some I would pass straight over and move on to the next song, others I would turn up louder.


I thought this might distract me, or help my mind to get heavy and to wander - instead I found myself blinking opened eyed into the darkness at 3 in the morning mouthing the lyrics to songs.


Here's to tonight - I'll have to sleep. I'm totally buggered.
If not I guess there is always 3 am silent karaoke for entertainment.

The chaos ......

We went to the Begonia Festival on the weekend. I thought I would take the kids to see the parade and the animals.

It takes what feels like a little bit of courage on my part - to take the kids on my own out to new things - leaving the car far behind us. I usually like to have it quite close by to bail to in case Bugs gets upset about something. It never used to be so bad as I could just bundle up this toddler and carry him to the car, but these days he is BIG and strong and if he doesn't want to move - he wont. Anyhow, I thought I'd try as I don't believe we should stay hidden in the house, or in 'safe' places all the time. It's not healthy for me, or the kids. If big Loch is with us its entirely a different story - it's that second set of hands to help diffuse the situation or watch one kid while we deal with the other, that makes all the difference. It also feels like a united front when we are together - I feel confident going anywhere.

I've been thinking a lot recently about Bug's behaviour. Professionals have told me that there is always a reason for a behaviour. Maybe its frustration, hunger, pain, wanting something, or the behaviour meets Bug's complex sensory needs.  Sometimes I must sound like I think Bugs is a terrible child who is difficult all the time and drives me nuts,  sometimes he is easy and his behaviour is wonderful, at other times it's so difficult it's a complete nightmare - the thing is though it's not him - it's 'IT'.

It is autism.

It must be easy for people to look at my son as see a badly behaved child. He can be hyperactive, often does the opposite of what you tell him and he's occasionally angry and aggressive. He is messy, he has very little social graces and absolutely no modesty when it comes to anything.

 The thing is that I know that all of this outside stuff, all the craziness, is for a reason.

He lives his life being bombarded by noise, light and touch. He can't switch off from one noise to the next it all comes at him at once. Lights might be bright and changing and blinking and even the feeling of a hat might irritate to the core. Life must be such a different experience, and it must also be scary. Add to that the fact that you can't talk, explain, or ask about anything - it's amazing he gets up in the morning, goes to school and functions as he does. If I had that going on I think I'd probably just hide under my bed in the dark and stay there.

As this isn't my daily experience, and never has been, I can't quite understand. I can understand the feeling when the TV is too loud and I'm trying to concentrate, or when you walk into a room and the lights are really bright. I know some feelings are horrible, like tin foil against fillings and fingernails down a blackboard - is this the kind of stuff he feels all the time?

As an outsider looking at him, it is easy to just see the chaos that can be my son. It's amazing how many people are close to us but don't even really know what autism is or how it affects someone - they just know what it looks like - and in my sons case it looks like an out of control kid. I would love it if people would actually learn what autism is instead of assume they know. Perhaps they would understand a little better why autism can equal behavioural problems.

I feel proud when I think of everything Bugs deals with on a day to day basis.  When I really think about how he must feel and how he is affected daily I think he is no longer unruly, but amazing and special. Despite all that he comes across he still is a loving kid who constantly holds his arms out for hugs and loves any kinds of attention. He still gets up with a smile on his face and is willing to make his way in the world for another day. These are the things I need to remind myself.

He may behave badly - but there is a reason for this and it has nothing to do with who he really is on the inside.

Slipping .....

We all seem to have reached a little bit of a flat point recently. 

School holidays were hard, but not as hard as the previous year as Bug's behaviour had improved leading up to Christmas. As soon as he started back at school however this has gone down hill a bit and that gleaming precious hope of an easier time have slipped a little. I thought it might be the changes at school, and there have been some slight issues going on there, but now reports seem to be that he is having good days. 

Wish I could follow him around for the day and just see how it all goes for him.

His behaviour and frustration aren't as bad as at various times over the years, but it's just that shift where his fuse seems shorter and he seems more unhappy - it's the tension that it holds. The second guessing everything all the time that becomes hard for us all.

He seems more unhappy. He's been crying more than usual - I can't work it out with him what is wrong - he just seems frustrated. It's times like these where I worry that he is feeling as low as the rest of us. The thought is heart breaking as just like any other mother you just want to see your child happy. I worry that he feels all alone and trapped, with just his thoughts and no-one can help him.

There is no relatively permanent state with this thing. Improvements are such big deals and can give such false hopes, I can never let myself get comfortable as I know things go down and up and down and up. If I think back to when he was little I know some issues have absolutely gone for good, so I try to think of these victories. 

Feeling quite over it all at the moment - the worst thing about it is I think Bugs is over it all too.

Ssshhhh ......

Ever since my daughter has started speaking and rapidly expanding her word base I've become once again aware of how difficult it is for Bugs to communicate and speak.
At 11 months Ellie started saying mum with ease, followed with dad - today she even said to me 'put it down' 3 amazing words in a row. While I don't use Bugs as a scale to compare Ellie to and vice versa her absolute ease at picking up words and copying words has made me more aware of how hard it is for Bugs and how his difficulty with speech is so much more than just him not wanting to speak.


Occasionally in the past people have said things to me such as 'it's just too easy for him not to speak' - meaning that his communicating through taking my hand and pulling me over to the thing he wanted was communication enough for him. He had no reason to talk. While I don't agree I can see that although this seems to be an effective way of getting your point across to an 'outsider' it's a pretty basic way of working out the needs of a child and a pretty basic way of telling someone what you want. I have come to be so accustomed to the way my son communicates that sometimes he can give me a look and I know exactly what he wants. As a child and even now as an adult I can do a similar thing with my father. When I was 2 he had a stroke and one of the biggest side affects was his speech. Today he can speak much better, although still somewhat fragmented, and I'm an expert and filling in the gaps for him when he can't get the right words. One of my very earliest memories is going to speech therapy with him. Sometimes when Bugs cant tell me what he wants he gives me this really intense look - straight in the eyes. It's amazing for someone who doesn't like eye contact with anyone, it's almost as if he's trying to project his thoughts straight into my mind.


Bugs's communication has improved since he got his communication device last year - his Springboard lite - however we are still struggling for it to be anything other than a tool for him to request things.
As much as it cuts down frustration, him being able to tell me the activity he wants to do, or the kind of icecream he would like, it has still been unable to help us communicate past asking for things or answering simple questions like - what colour is this?


Bug's speech at the moment is a number of nouns, most of which are quite unclear due to dyspraxia . About 95 % of his words don't sound like they should. It's not that he just doesn't want to talk - he finds it very difficult to get a clear word out. Sometimes it appears painfully difficult. For example, even now the word 'drink' one of his 1st words - is 'dib'. Bug's is very self conscious about his speech and often whispers when prompted to say a word - and will only often attempt words with people he knows very well such as us.


Sometimes having a non verbal (or very limited verbal) child can be very scary, frustrating and sad. It terrifies me that he can't describe if something is wrong - whether it be a pain in his stomach, head, or if something bad has happened to him. As much as I've tried we still haven't gotten to the point where I can ask what is wrong, or what is hurting and he can point to it - his understanding of what is said to him isn't good either. I feel so desperately sad for him when I think he can't ask questions about the world. I can't imagine growing up, being a child and trying to understand everything around me, without being able to ask questions - he must have so many!  I don't allow things to be on tv etc that may confuse or scare him - such as death, or even some medical shows such as RPA - as I would hate for him to try and understand such things all on his own and I have no idea how he would interpret such things if he saw them. 


I really hope in the future I can ask my son a question such as 'what did you do today?' or 'how are you feeling?', but more than anything I wish he could ask me questions and I could help him understand this world a little better, even if I don't feel as though I understand it myself sometimes.

Returning .....

It's the first day back at school after a loonnngggg school break.
It's easy to feel guilty when saying how hard holidays are and how much easier life is when Lachie is going to school - but it's just the truth.


It's easier on me as I aren't so torn between chasing him and paying attention to his sister. It's easier as I don't have to work out how to entertain him all day. The truth is unless he is out on our trampoline there is nothing here that interests him, or occupies him other than eating food or pacing the space between the computer and the couch. I can drag out pencils, paint, and playdoh and his concentration only lasts for 10 minutes or so - it makes me feel guilty as he isn't enjoying himself, and it's super hard work trying to keep him from being frustrated. Life is also easier for Lachie when he is going to school. He has a predictable routine, full of interesting and new things to try and learn and he LOVES it. He has never hesitated or not wanted to get onto the school bus once since starting school and runs onto the bus each morning. His behaviour and confidence has also improved. All I hope for him this year is that he has a good relationship with his new teacher and continues to enjoy school. Fingers crossed.
I can't wait to see him get off the bus, to see if he is happy and if there is a message in his communication book about his day.


On another note - I have been pretty good about making time for 'me' lately and have to say I'm feeling so much better about having some kind of a life. Sometimes it can literally feel like I've vacated and all that is left is a kiddie slave and someone to keep Lachie under control. Anyhow, big Loch has been doing the kids bath routine, during this time the dog and I have been walking of a night, I have recently been finding some time to catch up with friends (thanks for this morning Anna and Braeden!) AND ..... as Lachie takes such a long time to fall asleep I have worked out also that if I use a book light I can sit there - not focus on his tossing and turning and getting frustrated by the time it's taking - and just read away happily. I can't believe I haven't thought of it sooner. I'm starting to look forward to the hour or so it might take for him to fall asleep now - I can just get back to my book!
Anyhow, I hope to keep it up. Even if I can do just one thing a day that I can call mine - I've made an improvement and maybe I wont be such a grumpy mum / partner / person.

You need a break ..... no ..... I need normality.

Respite is such a paradox. It's a weird thing that for one reason or another makes me feel blessed, annoyed and kind of embarrassed all at the same time.
Firstly I'll state the cold hard facts - we get 3 hours a week of the stuff. Three hours where Lachie is watched by our awesome respite lady. Other than that - other than school - we don't get anything.
No one watches our kids in our family, none of our friends. We have no baby sitter we call so we can go out to things - our Sunday night is it.


Secondly - we take Ellie to respite with us. When Ellie was born we took a break from respite. Firstly we thought it wasn't fair on Lachie if we all went out together and left him at home. To me that just seemed horrible. The first time we went it was because our provider called us up and kind of hasselled me, I think they had our booking, yet we weren't using it - anyhow we brought Ellie with us as I was feeding her etc. Our respite lady turned up, Lachie was obviously ecstatic that the boredom of his Sunday with me was over and the lady who gives him tons of attention was back. Anyhow, he was more than happy to have his time back, Ellie screamed for 3 hours and I was relieved to be back home at the end of it. We then had respite fortnightly. When Ellie got bigger it became pretty obvious that our original plan of leaving her at home too (in the fairness of Lachie having to stay at home) wasn't going to work. If the respite lady picked Ellie up, Lachie would hold her arm and push it back down as in "drop the kid lady - you are here for me!". Anyhow... we have just continued to take Ellie with us and most Sundays Lachie uses his device and asks for our respite lady. It is honestly one of the highlights of his week. He gets LOADS of attention, they do fun stuff, and her entire focus is on him.


For me though - it is really nice to go out for tea / for a walk etc - but sometimes after having the kids all weekend I just want them to go to bed and have some quiet time. I do enjoy my time with my partner, but it's not like we are kid-less and can just relax and spend some quality time - we pretty much chase Ellie around all night. Now I may sound like someone who should be more grateful - and yes I do enjoy my Sunday nights - but - you know what I would like ultimately - I would just like it if we could all go out for tea, Lachie included. Yes at times I need a break - probably more often than I admit - but really what I need is normality. I would just prefer to take my son to places and not have to explain that he can't talk all the time, to not be stared at when he acts hyper and out of control, for him to be able to occupy himself for 10 minutes inside our house,  and to have a relative that I can call on if occasionally I did need a break or we need to go out for something - etc etc. This is where things like respite really make me feel confused. The other thing as usual that annoys me is other peoples opinions of respite. People who haven't spent more than 5 minutes around my very active son. I actually have one lady at work who continually says stupid things like - do you still go out Sunday nights? so you all go out for tea and leave Lachie at home?? It's like she know the very thing to say that will feed my guilt and insecurity about my parental skills.


The reason why I am thinking about respite is that we had a pediatrician appointment today. Our paediatrican was asking about  respite and pushing for us to get more - like it's a pool of time we aren't taking advantage of. Doesn't she know these things are impossible to get?? Any parent of a child with special needs knows there is only one way to get any help. Demand it. Yell about it, cry and threaten a nervous breakdown and call your case worker / paediatrician / whoever! every ten minutes until you get it. If you aren't good at complaining or making a fuss, you better get used to the bare minimum of services.


Anyhow... I know with my heart of hearts that it's not just me who needs respite - the other person who surprisingly needs it is Lachie. Try as I might I can't find the enthusiasm and stamina that our lady finds each Sunday. Without her he wouldn't have had three hours of laughing last Sunday jumping on the trampoline while she sprayed him with a water gun and he wouldn't have had the little Christmas party where he rolled around in a pool of shaving cream all night before getting sprayed with the hose.
Still, I'm not seeking any more respite time - more of a 'break'. What is needed is behavioural and speech therapy for my son and more education on coping for me. Respite can also be a band aid. Maybe if we had access to therapies that helped him improve his communication and behaviour, and helped me deal with them, then we wouldn't need such a thing as respite.

On a sunny winter Sunday ...

When I was pregnant Lachie's dad and I used to refer to the little being inside me as the 'bug a lug' - 'Bugs' is what I have always called him since before he was born. It hasn't actually been until he started school that I seriously made an effort to call him Lachie and even now I generally call him 'Bugs' when I'm talking to him, but Lachie when I'm talking to other people about him.

My personal situation when I was pregnant sure wasn't ideal. There was a fair amount of stress and craziness going on. I was homeless for a while and I wasn't really talking to any of my family. Occasionally when I used to think about  the 'whys' of it all - my son having autism that is - I used to wonder and think about the stress that I was under and wonder if I had caused it.
I now say I 'would' think about it - as nowadays I don't think about the 'causes' of autism as much as I did when people started using that word around my child.
For a while I thought about it a lot. Sometimes now I think people pay too much attention to the 'why'. I know why people see it as so important - because if they can work out a 'why' then maybe then they can stop it from happening - and they think if they have a 'why' then they might then be able to work out a way to 'cure' it. I look at Bugs and the whys really don't matter anymore.
He is who he is. If I knew why, would he be any happier today? Would the people who come across him in our daily life come to understand him? If I knew why, I couldn't even explain it to him in a way he would understand. If someone offered me a 'cure' would I take it? What is so wrong with who he is anyway? I don't know the answer to 1000 questions about all of this, and that's why I've tried to stop asking them. Don't get me wrong - am I happy he has autism - no.   I want him to be able to make it through a little easier in this world. I want for things not to be so overwhelming at times for him. I wish he could tell me things that he can't - from why he is crying all of a sudden, to what he did that day at school. I wish I could tell him things that would reassure him. I can't imagine being a child and not being able to ask questions about life and the world. BUT - there is nothing wrong with who he is and I refuse to try and break him into being 'normal' and I refuse to make him 'act' normal all day everyday when he is just doing as we all do and is living his life the best he can with the experiences he is having.

He was born on a sunny Sunday in the middle of Winter and I don't think he really wanted to arrive. Although my waters had broken the day before and I was having some contractions - they didn't really move past what I now know as 1st stage labour pains - at least they didn't get past 1st stage until they hooked me up to a drip and basically told my body, and him, it was time. After 5 minutes on that drip I think I went from 1st stage pain to 3rd in about 5 minutes unfortunately though it still took hours. I felt pinned to the bed with pain and really didn't know what to do. He finally arrived, and all I said over and over is "he is so beautiful".

All things must pass .......

Well another year has gone .... it's been a year full of ups, downs and everything in between.

There a few things I hope / pray and resolve to do next year.

1.  Enjoy more time with my kids. I can spend time with them - but I want to enjoy my time with them. I think a huge part of that is working out what we can do together and secondly to relax and just go with the flow. I think I'm so used to many things turning to chaos quickly that I wait and try and head of the next disaster before it happens more than I just enjoy the moment.

2. For the Kids to enjoy health and happiness. I hope both of my kids enjoy good health and happiness this year. For Lachie I just hope he continues to come out of his shell a bit and to gain confidence in himself. I've notice that when he tries to speak to people other than us he really whispers and is so shy about speaking. I think he knows people have a lot of trouble understanding his 'babble' and I hope that this year he continues to learn and to just enjoy life and have fun. For Ellie, I hope that she continues to grow into a confident and clever little girl who has interest in everything! She has taught me so much and she has really given me a new perspective on Lachie.

3. Continue to study. I've started my Bachelor of Behavioural Science through Swinburne and gotten through the 1st term well only by studying when the kids are asleep, very proud of that.. so I hope to continue to work at that goal and not give in.

4. Make time for friends!!!! I find it really hard to make time for friends which is really making time for me. I ALWAYS feel better when I've spent time with a friend. It can be easy to postpone and put things off when life get's hard - but maybe that's when you need a friend most. Maybe that's just part of me, not really showing the 'reality' of my life to people.

5. Get fitter. I used to be a LOT fitter. I used to ride a bike all the time - it's just another 'non essential' that can be dropped when you have no time but I used to feel so much healthier and fitter.

So ... that's it really. Here comes another year.
I inhale before heading into the hard bits, and I look forward to the good bits!
All things must pass - even if we don't want them to - or can't wait for them to.