Dubbedah

I always knew he would be the sort of boy who would just do things when he was ready.  There would be no rushing him.  Over two years of speech therapy, early intervention and other assorted sessions, and nothing.  We quit speech therapy, it wasn't working for him; early intervention ended due to him being school age; all we were doing was some occasional OT through the holidays, biding the time till school began.  Then suddenly, one day, shortly before Christmas......

"Dubbedah.....dubbedah...dubbedah...."  His croaky voice floated around the house as he experimented with some new phonetics.  "Dubbedah...dubbedah...dubbedah....".  I followed the sound of his voice to find him.  Whenever he makes a new sound or produces a new phonetic, I like to jump on the opportunity and repeat it back to him.  Finding my boy, I knelt down to his level and repeated this new 'word' to him.  Slowly, a smile spread across his gorgeous face.

"Dubbedah, dubbedah, dubbedah..."
"Dubbedah, dubbedah, dubbedah!"

Back and forth we spoke, his smile growing wider until he began to chuckle, that cute little bit of saliva dribbling down his chin the way it does when he's building up to a big belly laugh.

Over the next few days, I heard this word a lot.  Whenever I could, I would repeat it back to him, bringing his attention to this new sound his mouth was making.  After a little while, I thought I might attach some new words to the end of the string.

"Dubbedah, dubbedah, dubbedah-daddy!  Dubbedah, dubbedah, dubbedah-mummy!"

He would echo me, trying his hardest to produce the different word on the end.  It. Was. Amazing!  The whole family noticed.  All his sisters got excited every time they heard him speaking these words.  Baby Miss - not so much a baby anymore - even developed her own version of Talking Tom (you know, the iPad app where the cat echoes what you say?).  She'd make different sounds and noises, even just laugh, and her brother would do his best to echo her.  It was one of the most beautiful interactions I've ever seen among my kids.  They'd go back and forth this way for ages, until they both collapse in a puddle of dribbly giggles.

Over the next few weeks, this nonsense word - dubbedah - became a prompt for all kinds of new words and sentences.  Not that he could echo accurately every time, but he was trying - really trying! - and that was amazing in itself.  Sometimes, he didn't even need to have dubbedah preceding a sentence before he would echo.  At this point, he has almost dropped it altogether, but the echoing - blessedly - continues.  One afternoon, I was even able to get him to echo 'bye-bye Tayta' when leaving my mothers' house.  She nearly burst into tears with joy at hearing these precious, amazing words, from my son.  It doesn't matter that it was just an echo to him, and that he does not yet attach meaning to most of those words.  He said them!  And oh, how sweet they are coming from his mouth :)




xx

80th Birthday Cake

I know, I know, I've been MIA.  I hope you haven't left me.  I am an emotional blogger - I find it hard to post when I'm feeling down.  But the other reason is, I am fussy.  I like to have pictures to accompany my posts.  It makes for more interesting reading I think, when there is something visual there too.  But since the photos I really wanted were on hubby's camera, I couldn't get them when I wanted them.  I am still waiting on said photos.  

But that's not all!  When I want to write catch-up posts, I have to have them in chronological order.  I just can't cope when they're not!  Even I am laughing at the silliness of this, but it messes with me... so I put off posting.  

Well, no more putting it off; even without those pics, I will go ahead and post.  And it may not be in chronological order!  But I'm going to get over that and post anyway.  I will try not to bombard with posts one after another with what has been going on.  There is a bit of cake, and a bit of Erik.  A bit of family and a bit of fun.  All the bits and pieces that make up this blog.

But first up, just a cake....

This one was made as a gift to my husbands grandmother, for her 80th birthday.  Only a small cake, 6", fruitcake.  I made the flowers, trying really hard to come up with a spray that was both classic, but with a more modern, cleaner feel to it.  These were the first flowers I had made since class!  We had to transport the cake with us over the 3 day journey interstate for the celebrations.  Fortunately, it made it there with minimal damage - a couple of leaf tips and only one orchid petal broke off.  I was able to fix the petal, thankfully, and the broken leaf tips were not even noticeable.

xx

Morning Mum!

My son had a surprise for me this morning.  Not that it was much of a surprise... I was awake in bed and could hear what was going on.  Still though......

"Morning mum!  I opened the pantries ready for you today....."

"....and the fridge.  For the milk of course.  

And the freezers.  Just in case!"

"Thought I'd open the microwave too, and the cups cupboard.  You know, so you can warm up our milk"

"Oh - I didn't forget the drawers mum!  So you can get our spoons out.  Yeah.  But can't have only one drawer open, it would look wrong.  So I did the others too.  Nice and even that way mum.  But see how I left the top one in just a tiny bit - so you can know the difference?"

 "Hmm... talking about 'even', I better open the cupboard on the other side of the bench here too.  Even that one out a bit."

"Oh, what the heck.  Might as well do all of 'em!"

"Griller too of course.  That's still got a door on it after all!" 

"Here mum.... I also put all the lights on for you.  I know how much you hate when the house is dim."

"I even remembered to do the lamp!"

" Aren't I a clever boy."

Time to get the rubber bands out again........

xx

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