23 October 2011

another post about autism

Like depression, it seems as though everyone I know is touched by autism in some way.  Either they have children, know children, teach children or are married to someone with autism.
The similarities between depression and autism don't end there though.  Here are some things they have in common:
*also known as labels
*often used as excuses
*often accused of not existing
*neither need a diagnosis to be known

I have been giving this whole 'label' thing a lot of thought lately, in fact I have been hearing and thinking about the whole autism thing lately.  People often say they won't get a diagnosis because they don't want to label a child.  I think this is bullshit personally!  I used to agree but I guess now I have gone and labelled myself (depressed and anxious) and my son (aspy, ASD, autistic) I tend to think that it is less about putting a tag on someone and more about being proactive in parenting/self care.
I also think that people tend to think a diagnosis and label are exclusive.  I didn't need an official diagnosis to know that Beren had autism, I was able to acknowledge that well before a diagnosis came  along and having that diagnosis didn't change him, his label still said BEREN - handle with care!

What did a diagnosis mean to me?  Well, it meant access to services that I couldn't otherwise afford to access.  Because I had taken my kids out of the education system I couldn't access ANY services such as psychologist, occupational or speech pathologist through the education system (don't get me started on discrimination!). I needed to be able to access affordable/free services and to be able to speak to people who would know how to address issues I had with behaviour management and appropriate response on my part.

I didn't need to know if there was something wrong with Beren.  There is nothing wrong with Beren as such, he is a healthy, happy, intelligent and handsome nine year old boy.  Nothing actually changed dramatically with a diagnosis for him really.
However, for me it did.  I could speak with child psychologists about some of Beren's behaviours and find out how to 'manage' them.  Even though it was Beren who saw Dr M on a weekly basis I could give her ideas of what I felt needed to be addressed and she could discuss with him or  play games and role play.

It is also difficult to know when certain behaviour is lack of social awareness or just downright playing dirty!  I for one do not believe that aspy boy (Beren) is totally innocent of deliberate bad behaviour and I don't give into the 'oh it's because he has autism' train of thought!

I am fortunate that Beren is high functioning, this means that with good direction, role modelling and boundaries he will lead a perfectly 'normal' life.  (I know, I used the N word!)  Funny enough, most of these things are used with both my kids anyway, it is just that sometimes Beren needs reminding more often and I have used visuals more than I probably would have if things had been different.  My parenting doesn't change with each child, I struggle as a parent enough without having to separate and alter my thoughts for each child!

Beren has come a loooooong way from multiple daily meltdowns, violence, cruelty and total lack of communication that occurred until he was around five.  These were sheer hell.  I had no idea how to deal with them,I knew what was wrong but fell into the 'label' trap and chose not to acknowledge it.  IF ONLY I HAD DONE SOMETHING EARLIER!  I could have perhaps avoided so much anxiety and stress for both of us by learning how to manage.  But, I didn't and we muddled along and we can't turn back the clock.  I think this is why I am now a strong advocate of getting help early.

Back then, I would avoid situations that could bring on a melt down.  I would never leave him alone with another child because I knew he would deliberately hurt that child just so he could watch the reaction.  I spoke for him because he didn't speak, I gave in to all his whims and fancies to just keep him happy.  During this time his father and I separated and that just added fuel to the fire.  I cringe when I think back at how things were dealt with but I will not tear myself apart over it, what is done is done and we can only move forward.

Being the only parent who really acknowledges an issue and deals with it has been difficult but not impossible.  I try to keep things consistent and if I feel something is really important then I encourage their dad to also practice/enforce what is happening.


This word is probably one of the most often used words in our house LOL  I am no saint  as I am sure you are aware.  I use the words don't, stop, no (and swear) but I try to use the positive as much as I can.  I have taught my kids that there is appropriate and inappropriate ways to do stuff.  Rather than fill them with heaps of words I find  the word 'appropriate' works for many scenarios and they catch on very quickly as to just what is appropriate or not.  
We also have visual reminders around the house, such as 'STOP  THINK  CHOOSE' signs.  
Hand signals are used when I am speaking to someone on the phone or in person, such as STOP- palm facing child, WAIT-index finger raised, NO-index finger side to side.  Not to forget the fact that I do great 'stink eye!' LOL

I read a blog post sent to me yesterday and it was written by a mom of a child with autism.  She was writing about how people often judge behaviour as bad parenting or naughty kids etc.  I didn't like the post as it seemed she was saying that all that happened could be blamed on the diagnosis.  This is wrong in my opinion!  Just because a child has autism doesn't excuse their behaviour.  Before you start throwing things at me I obviously, am speaking from my experience only and a child with severe high needs would be a different kettle of fish!  For me, it just didn't sit right.

One day I was driving and the kids were in the back seat bickering.  Beren turned and hit Nienna and when I pulled him up on it his response was, " I didn't mean it, it is just because of the autism!"  BULLSHIT BOYO!  I promptly pulled over, stopped the car and turned around and said "I never, ever want to hear you say that again.  It is not an excuse for inappropriate behaviour!  You know that violent behaviour is wrong and unacceptable!"   I have to say he has never used that again! LOL

So, how do I deal with issues that arise?  
  • Beren is very tactile and finds head scratches and back rubs soothing.  If I see him getting tetchy and impatient I will suggest we go lay down for a cuddle.  Wrapping a tight blanket around an upset child works for many too.
  • Noise and crowds bother him, I don't force him to go to markets etc as I know he will be miserable and make everyone else suffer.  We do smaller crowds and will continue to work our way up.  Also I discuss that there will be music/crowds/noise before hand.
  • Oral fixation, he loves the feel and taste of food.  Working on recognising that he is full and also that he doesn't have to finish everything or by the same note eat ALL things at once.
  • Communication, teaching him to respond when spoken to and not just ignore and walk away.  Prompting him to initiate conversations and to ask for things he needs instead of doing it for him. 
  • Quiet time, teaching him to acknowledge when he is 'peopled out' and to find something else to do away from others.
  • Using social scene card games and board games to learn social behaviour.
  • Not REACTING as this just inflames a situation.  Using a low, calm and slow voice as well as hand signals to indicate that he needs to slow down, breathe and stop yelling before anything can be addressed.
  • Removing myself from the room if I can't stay calm, taking a breather then returning.
  • Explaining how an action makes someone feel.  ie When xxx happens or you do xxx it makes me feel.............    this is not a guilt trip by any means, it is simply educating because empathy is not high on his list of priorities.
  • Echolalia - don't sweat the small stuff!  Although, when Beren got to the triple figures of telling me he loved me and expecting a response daily I must admit I was getting frayed.  I then explained that it doesn't mean as much if it is just being said all the time and perhaps he could tell himself quietly that he loves me.  I also discovered that he would say it when he forgot what he was going to say, I again said it was ok to say he forgot.  
  • Stimming - oh this shits me big time.  flapping, jumping, jiggling about.  Drives me nuts and sometimes I will ask him to stop or I will get him to go ride his scooter, jump on tramp or tell him to go do it in another room. other times it just takes a hug to stop it.
I am sure there are other things I just can't think of right now but you get the drift.  It ain't all roses but I believe that by reinforcing 'appropriate' behaviour and teaching what is expected does make the journey get easier.  Most aspy kids like to please and Beren is no exception.  If he knows something he has done has made me happy then he will do it more and more.  He likes praise and being acknowledged for good actions so he is often easy to work with.

I am blessed with the two kids I have.  I wouldn't change a thing as they are who they are.  Admittedly I have it easy as Beren isn't severely affected by autism and if I were honest, Nienna is probably low on the spectrum too.  But hey, we are all on it somewhere and I like to think the spectrum is just another rainbow.

20 October 2011

and they all lived happily ever after

such a great day today.
Cool thunderstorm in the early morning (8.30am :P)

 stunning stormy sky

A stunningly warm and sunny day.
No stresses.
Had a lovely walk and even got to have a  nice chat with the old bloke down the street who was walking home at the same time as me.
Decided I am living in Tasmania's answer to Florida
sewing day.
 market goodies

(Fairy queen costume for dress up party on Sat)
BBQ day.
Girlie day.

Lazy day.

creating day.
 hospital computer.  Has oxygen, defib, heart monitors, fan, alarm and much more apparently!
Beren being resuscitated after a heart attack

11 October 2011

a bit of spice in my life

I have given up on ever finding the spice jars I like.  They used to sell them in 'safeway' as two packs and I would buy a pack every so often and then just before I had enough they stopped selling them!! How rude!! they could have asked if I had enough first surely!!

So then I found some teensy preserving jar type one at a discount store and I bought four thinking that I could always go back.........*bzzzzzzzzzzzzz* no, that was obviously too difficult for them to get their head around and they stopped stocking them!!

Alas, I searched high and low, online and offline to no avail.  but last week I found a set of spice jars on a lazy susan type plastic holder going super cheap at Harris Scarfe (a shop that doesn't know what it wants to be when it grows up, if it lasts long enough LOL) and raced into the big smoke Launceston and bought a set.  I ditched the holder and kept the jars.  They are not my ideal but better than nothing.

This sorting and relabelling got me wondering as to what sort of herb and spices everyone else keeps and how/where you keep them.
Currently I have:
hot paprika
onion salt
ground ginger
basic curry powder
chilli flakes
poppy seeds
sesame seeds
garlic flakes
chinese five spice
italian mixed herbs
bay leaves
cumin seeds
ground cumin
ground coriander
cardamom pods
mustard seeds
whole cloves
whole nutmeg
ground nutmeg
cinnamon sticks
ground cinnamon
ground allspice
mixed spice
Himalayan rock salt
black pepper corns

So what sort do you have and what do you do with them??

bottom shelf are the original jars, middle shelf are my latest soon to be out of stock jars and the top are the cute little ones.

A yummy way to use some spice in your life!

Sunday was a particularly wet and cold day here so I decided a warm and comforting dessert was in order.  I have loads of apples as I have been buying them by the box for juicing so I decided on baked apples.

I washed four apples and cored them almost all the way through.  I think you could also half them and scoop the seeds out and then cover with the sugar mix just as well.

In a small bowl I combined:
a shake of nutmeg and cinnamon ground
about 1/2c of brown sugar
1/4c shredded coconut
1/4c flaked almonds
1/4c goji berries

I then filled the apples with this mix, pressing it in really well then I topped each with a dollop of butter.   
I put them in a baking dish and added about an inch of boiling water then put a lid on.  
You can use foil if you have it.
I cooked in a pre-heated 160c (fan forced) oven for about 15 minutes then took the lid off and cooked a further 15-20minutes.  Just check the apple is soft but not mushy with a skewer.
Spoon some of the water mix over the top and then serve with your fave accompaniment.  
We had vanilla bean ice-cream with ours and they were scrumpelish! 
I made my filling up from what I had in the pantry but you could experiment with all sorts of mixes and I used goji berries because I had no sultanas and they were lovely.
ps.  I had left over mix that I have stored in an airtight container and will use for muffins or something down the track.