Some Interesting News.

Recently, my son had some testing done by way of the PEP-3 (Psycho-Educational Profile - 3).  This test basically shows what skills my son has, and what is emerging so that we can get a clearer picture of his abilities and a better idea of where we can work to continue building his development.  As part of this testing, I had to complete a carers assessment - basically questions asking me what my perceptions are of his abilities.

On the day of testing, my Little Man was just amazing.  It was a good day.  He responded really well to the tester, even though he had never seen her before.  She was great - she had a really fantastic way with him and he truly seemed to gel with her in a way that made my heart smile.  The testing went for around 2 hours, and for that time, Little Man showed fantastic attentiveness to the tasks required.  Even when he was clearly not interested in the activity, he did at least acknowledge the task presented to him.  I came away from this feeling really pleased with his behaviour and confident that the test results would be the most accurate we could get from him, because he responded so well.

The results were interesting.

For normally developing children,  you would expect to see their results hovering close to the median.  Some points will be above this, some below - reflecting that some skills are better than average and some less than average - but generally, the points congregate around the median line.

With ASD kids, those points are far more scattered.  They can be far above the median, and far below.  They just typically go everywhere.  

For my son, they were not only scattered, but they were scattered way, way down where an 18 month old toddler would be.  His receptive and expressive language were the worst points of the bunch.

This does not translate to good news.

In a nutshell, what this means is that autism severely hampers my son's ability to learn and develop.  In other words, on the spectrum, he is severe.

This diagram is not to scale or perfectly representative by any means, but it gives some idea of what I'm talking about in terms of my sons skills (green) in comparison to a child with normal development (red), and a child with autism (yellow).  I want to acknowledge that all children with autism are different.  But  the yellow line can be a representation of what you might expect to see for a child on the spectrum with no other disorders apart from the ASD.  The straight blue line represents where skills should be at (ideally) for a child of 55 months of age, which is how old my son was at the time of testing.

The results also strongly suggest that there is another disorder/ syndrome/ whatever co-morbid with the autism.  Meaning that very likely he has another disability as well as AD.  Whether that is Mental Impairment, or Global Developmental Delays, or Apraxia, or whatever - we don't know.  I pays to remember though, that although there is strong evidence for this, it isn't a confirmed fact for Erik.   

The one good thing that came out of this was the assurance that my perception of my son's abilities was pretty accurate.  The testing showed I had a good grasp on where he was at in terms of skills and development, so that was comforting to know.  I can see things for what they are.

Part of my carer's assessment.

All of this taken together did not really surprise me.  Much.  I guess the official 'label' of 'severe' was upsetting to hear, and I did not expect to find the strong possibility of yet another disorder on top of the AD, but really, it all just goes to explain what I already knew about my son.

In 2.5 years of assorted therapy and changes implemented at home, he has hardly made any progress.  Oh, don't get me wrong!  I'm not saying he has made no progress at all!  But the things we do get really super excited about with him....?  ...lets face it;  they are very tiny things.  This post talks a bit more about what I was expecting and what is really happening.  

So, what does this all mean? ... Well.  I don't really know.  I know what it doesn't mean though.  It doesn't mean that there is no hope for my son.  It doesn't mean that he will never speak.  It doesn't mean that we will never see any further development.  And it absolutely doesn't mean I will give up on him.

I think the road will be harder than I anticipated.... the journey more surprising than I expected.  I think the highs will now be higher, and the lows, lower.  I think that this is going to be the ride of a lifetime - an adventure, if you like.  No smooth sailing here.

I guess I need to recheck my gear, top up on supplies and maybe schedule in some rest and a good meal before I set out again, now that I know the road is ahead really is not going to be so easy.

The you will experience God's peace, which exceeds anything we can understand.  His peace will guard your hearts and minds, as you live in Christ Jesus.  Philippians 4:7.

xx

With special thanks to Chook for a word in time.

Letter To Kinder Parents

This was distributed just yesterday.  I hope it goes over well.

Dear friend, 

My name is Erik, and I am in the Pink group at  ********  PreSchool.  You may have noticed that I am a bit different to my peers.  That’s because I have Autism Disorder.

Autism is a condition that affects communication, social skills and behaviour/play.  

Right now, I still can’t speak - I have no words yet.  So it is very hard for me to let my friends and teachers know what I want or need.  I can get frustrated, upset and confused.  Instead, I might try to scream, make a loud noise, push or pull someone to try and show them what I mean.  My mum keeps reminding me that I will find my words one day, so I keep trying.  In the meantime, it helps when people are patient with me, and understanding of my behaviour.

I really struggle to understand things that are new and different. I am still learning the rules at kinder, and still learning rules about life too.  I don’t always understand instructions, or how to wait for a turn, or how to sit properly for mat time or to eat.  I find it hard to share my space sometimes, and I can feel very anxious if another child cries or shouts.  My teachers and parents are helping me learn how to handle all of this, but it might take me a bit longer than most other kids.

I do sometimes like to be around other children, but I don’t know how to make friends or play a game together.  It helps when someone can play alongside me, or when an adult can show me how to play, help me share or take turns. 

The world is a big and confusing place for me, and for this reason, I don’t always realise that I am in danger.  I might try to put dangerous things in my mouth. Or I sometimes try to run out through open doors and across roads and carparks.  I can’t swim and don’t understand danger around water.  It helps when doors are kept shut and locked, but if you see me try to run away without my mum, dad or teacher, please help me stay safely indoors!

I love tickles, songs and music, and my favourite colour is red.  I love to climb, jump, play on swings and go down a slide.  I like to play ring-a-rosie, and run around with other kids.  I love puzzles, bead frames, peg boards and blocks.  I am learning how to throw and catch a ball, and I am just starting to understand how wonderful the alphabet and numbers are. I also like cuddles with mum or other people I know, even though I don’t know how to give a hug.  If I like someone, I show them by leaning against them.  

I hope that if you work in my room you can be understanding and open to my unique needs and abilities.  It might also help if you can talk to your child and let them know that I am different in some ways, and that it’s ok to be different.  Please also remember that I am just like any other child trying to find my way in the world and be happy.

Thank you for reading my letter, and I hope to meet you at kinder!

Erik  

xx

This Is My Life Every Day

Sung to the tune of "Spotty kind of day"

There's a toy over here

And a shoe over there

Pasta sauce on your ear

And some snot on your hair

And a lot of lego blocks

On the floor - everywhere!

This is my life every day.

Wipe a nose over here

Wipe a bum over there

Try to cook up some dinner

When there's kids 'round your legs

Then stand guard so your son eats

Without climbing off his chair!

This is my life every day.

Help with homework over here

Sign a diary over there

Fight with boy to brush his teeth

Trying real hard not to swear

And then put them all to bed

Hugs and kisses, bedtime prayers

This is my life every day.

Have some dinner and a shower

'Cause it's time for some self care

Husband comes home from his work

Enters bathroom, just to stare

Then make lunches, iron shirt

Some computer, crash in bed

This is my life every day.

xx

Chocolate Mousse Cheesecake Tart

Made this on the weekend, and thought I'd share my recipe with you all. I'm not going to rave on about how good it was. I just hope you give it a try and see for yourself. All I will say is that it was a hit with everyone and whatever was left was very quickly polished off the next day by whoever got there first.... and we all tried to be first *guilty*.

A bit of a description: The base is made with oreos and a few plain sweet biscuits - makes for a yummy chocolaty flavour without being too rich. The bottom layer is chocolate flecked cheesecake - a recipe that I basically made up by tweaking lots of other different cheesecake recipes I had looked at a few years ago. The top layer is a simple chocolate mousse using half dark chocolate and half milk chocolate so that it's not too rich. Altogether it makes for a super yummy delightful dessert that really is very more-ish. You don't feel sick after this unless you have pigged out on something else beforehand.

It's not a 5 minute wonder, but it is easy to make. And once it's done, there is no baking. This is a great dessert to make the day before or even a few days before. I plan on making a double amount and using a bigger tin for this Easter weekend.

Chocolate Mousse Cheesecake Tart

Base

150g Oreo biscuits

About 5 plain sweet biscuits, such as Arnotts Marie

125g butter, melted

Lightly grease a 23cm springform/cheesecake tin.

Process all biscuits into fine crumbs. Combine with melted butter and mix well. Press evenly into tin and smooth out with the back of a spoon. Chill while preparing the filling.

Bottom layer: Chocolate flecked cheesecake

250g packaged cream cheese, softened

1/6 cup caster sugar (I just used half of a 1/3 measuring cup)

1/2 tsp vanilla extract

150ml thickened cream

1 1/2 tsp gelatine

1 tbsp boiling water

2 tbsp grated dark chocolate

Sprinkle the gelatine over boiling water and mix briskly with a fork until dissolved.

In a medium bowl, beat together the cream cheese, sugar and vanilla essence until smooth and creamy.

Beat in the gelatine dissolved in water.

In a separate bowl, whip the cream until medium peaks form. Fold gently into the cream cheese mixture.

Fold in the grated chocolate.

Pour the mixture onto the biscuit base, spreading it gently to the edges with the back of a spoon. Try to get the layer as even and smooth as possible. Chill while preparing the chocolate mousse layer.

Top layer: Chocolate mousse

50g dark chocolate, chopped

50g milk chocolate, chopped

1/3 cup thickened cream

1 egg, at room temperature, separated

1 tbsp caster sugar

Place both chocolates in a heatproof bowl, and microwave at 20 second bursts, stirring with a metal spoon after each interval, until melted and smooth. You may need to decrease the time towards the end so as not to overheat your chocolate (ie. 10 or 7 second bursts). Set aside to cool.

Meanwhile, whip the cream until medium peaks form.

Add the egg yolk and half the cream to the chocolate, and stir to combine.

Add the other half of the cream, and fold gently through.

Using clean dry beaters and bowl, beat the egg white until soft peaks form. Add sugar and continue beating until glossy and sugar is dissolved.

Fold the egg white mixture into the chocolate mixture in two batches, until combined. Don't over mix, but there shouldn't be any white streaks left in the mixture.

Gently pour over the cheesecake filling and spread as evenly as possible up to the edges with the back of a spoon. You can shake the tin very gently to smooth out the surface.

Refrigerate for 4 hours, or until set. I prefer to make mine the day before and just refrigerate overnight.

To serve, you could pipe whipped cream around the edges and decorate with chocolate lattices, or sprinkle chocolate curls, or just serve it as is. Will yield 12 conservative serves, or 8 really generous serves.

*A couple of tips: Try to use good quality chocolate, as this will effect the taste and texture of your final product.

To avoid seizing your chocolate when you add the egg yolk and cream, try to have all of your ingredients at as similar temperature as possible when combining into your chocolate. Allow your chocolate to cool right down to room temperature, but not so cool that it begins to set.

xx

Speaking Of The Fridge...

A few months ago......

Oooooh! So this is how you open the fridge! Hey...there's a light in here! I wonder how it works...

Hmm... Here's a button. Light off....

Light on.... Cool!

I wonder if I can fit inside...

...

He also tried to get inside the potato basket in the pantry.

xx

How Easily A Pattern Can Form

Sometimes it amazes me just how quickly my son can form a pattern. It's almost like, he just decides he is going to do a thing from now on, and that's how it must be done, end of story. Sometimes, it makes me chuckle. I smile as I watch him setting a pattern or plan in motion, and the delight on his face as he does this makes my heart sing. Other times, I wince on the inside and do my best to stop it from happening. And occasionally I am mixed up in both... because he's cute, but this is not good!

One morning, Little Man realised that our two pantries, fridge and deep-freezer were all in a row.

Like so....

He was down from his chair in a heartbeat, making happy hissy sounds and smiling. He opened the first pantry wide.

Opened the second one.

Opened the fridge.

And opened the freezer. Then stood looking at the whole thing, very proud of himself.

I stood watching and just smiling.... I think I was half asleep. (I'm really not a morning person - four babies and 10 years have not made me a morning person. Face it - it's never gonna happen!). But somewhere in the back of my foggy brain, I thought; This is not a good thing. Quietly and without a fuss, I went over and closed the fridge and freezer. He kept opening and I kept closing. Sometimes it's just easier to do that than hold him back. I know it isn't good for the long run, but seriously, it's first thing in the morning people! Blegh!

My husband however, is a clever man. With one simple action, he stopped Little Man in his tracks and put an end to the obsession that was blossoming before us. Oh we had tantrums... I still had to deal with that in the end anyway (*mumbles ungratefully under her breath*). But, it was necessary and alot better to stop this immediately.

What did he do, you ask? Oh he is a clever, clever man. He simply interrupted Erik's pattern. Like this....

One rubber band around the second pantry handles so they couldn't be opened. Pattern interrupted. Boy cannot move on to fridge and freezer 'cause it doesn't fit the pattern and it's just wrong!

Love it! Hehe.

Oh, he kept trying, for days after. And every time I would accidentally leave the rubber band off, he would be flying over to those doors and opening them all up. But if he sees the rubber band, he doesn't even try. Which is great! Because he decided to move on to the other kitchen cupboards. A rubber band here, a rubber band there.... and they stay shut.

I wish breaking patterns was always this easy. But the truth is, it usually takes alot of work. And it's very frustrating. We were lucky to see this one forming and nip it in the bud.

xx

Expectations

I has been around 2 years since Little Man was diagnosed. Sometimes, it amazes me how naive I was at that time. Of course, I was crushed. To say the least. But I had the impression that with help and therapy, within a couple of years, he would be speaking - at least a little bit - he would be toilet trained, he would be doing all sorts of things. Oh - and I would see what he was crazy good at... you know, all savant-like!

None of that has happened.

At 4.5 yrs, he still cannot speak, toilet training has been a dismal failure so far - he is still essentially in nappies. In terms of all the goals and expectations I had for this point in the future, nothing has been achieved. And I definitely can't see any fancy-knock-your-socks-off kind of talent in any specific area. He struggles with almost everything.

Yet strangely enough, I am not as disappointed as you might think. I guess that over the years, I have come to accept things the way they are with him. He is how he is, and that's just the way it is. But there is a danger in this, and the danger is that I can become complacent. Stop trying. Not necessarily give up, but rather just go with the flow. Do what is easier. Do what works rather than push the boundaries and try to teach new and better ways. Correct ways.

Something I so often notice in parents of ASD kids that I have met, is that there is a huge amount of bitterness. Honestly, I cannot blame them. The disappointment you experience... the pain...when you find out your child is autistic.... it's almost unbearable. Bitterness stems from disappointment, and there is only so much a person can take. I have bitterness in life - I wish I could say I didn't. I wish I could be one of those joyful ones who just continually look at the bright side. But I am just not one of those people. I'm not wired that way. If I have to be completely honest, trying to be that way nearly destroyed me.

The thing is, the bitterness I have does not come from the disappointments experienced with my son. I am surprised by this, really. But it's the truth. My bitterness comes from other pain in my life. My son... well... The disappointment and pain only gave birth to a new hope for him. There have been many occasions where I have had to reconsider my expectations of what he is going to achieve at various stages in life. I went from thinking he should be speaking by four years old, to thinking... I am certain he will speak, but it might not be till eight, or nine, or ten. Even twelve or thirteen. It might not be for ages. But I'm still certain it will happen. It's more a postponement of timing I suppose.

This hope I have for him and for his life, it isn't a forced hope. It isn't one that goes "I HAVE to hold on to hope or I will die!". It just seems to be there for him. And I don't really know how I have managed to be this way.

I have come to accept that he may never get married and have a family. He may never drive a car, have a job, have a house. This is ok with me. Yet I still hope for that for him. My deepest desire for him is to know God and be content in life. Happy. Getting married does not necessarily equate to being happy for people, and if he has no desire to, then I am not going to pressure him. And if he is comfortable using public transport to get around, then great! I do hope for these these, but as long as he has found some purpose, some pleasure in his life, then I am satisfied.

One thing I haven't yet come to accept is the notion that he might never speak. For some reason, this is a big issue with me. I refuse to accept the possibility, even though the odds are stacked against him. I don't know why this is so important to me. I wish I did. I just know that it is.

So in two years, and essentially, 10 months also (we knew he needed help before the diagnosis), with all the early intervention we have sought and done for him, there has been so little change.

This is not where I expected to be in 2 years.

xx