Autism Affects

Autism means Literally...

2011-08-21T17:59:00.003+10:00

I had forgotten how much Jonathan takes things literally, until recently.
I had asked him to change the TV volume, to number 40.

He jumped up quickly to fix it for me, and accidentally overshot, he ended up at 44. I told him this was fine, but no he had to lower the volume back to the number I had asked for, because that was 'right'.

Mind you, this is also a good source of humour.

The other day there were many rainbows around, and Jonathan asked if he could go to the rainbow.

I offhandedly replied, no we can't go to a rainbow, our eyes would go on fire and our heads would explode.

I didn't think much of this, and said it in jest... he took it literally.

After 10 minutes of giggling at the image he had conjured in his head, he asked again, "Can I go rainbow?"

This time the rest of the family picked up the response and played with him.

3 days later we lost interest in the rainbow, but the whole family enjoyed having something to interact and verbally play with Jono together.

This has now expanded to other things, he asks a silly, but genuine question... we respond with complete silliness and he collapses in a pile of giggles.

What's this word say?

2011-08-12T19:24:00.000+10:00

Jono has recently developed a great interest in words... again.

He doesn't want to read books - they belong on the bookshelf, but he does want to know what words are.

We recently got Sky TV which allows us to record shows, live pause, rewind and so on. Jono figured this all out very quickly, and takes care of the controller for us all.

When there are ads on TV he constantly pauses it (as this is where the most words are) and asks... in a loud voice... "MUM... WHAT'S THIS SAY?"... I check the TV, read him the words, and then he lets the ad move forward... as soon as there are more words, he pauses again, and loudly requires my attention again.

Some of the words he knows himself and will tell them to me, he is growing agin in his learning and I am proud of him and his progress.

Gone are the days of wondering if he will speak, now we are simply wondering if he will start reading books happily without tearing them up :)

Clouds in New Zealand!

2011-06-27T19:04:00.000+10:00

We are getting into winter, and the foggy misty mornings are now commonplace here in Auckland.

Jono, is all his wisdom and expanse of the english language calls it clouds. Whenever it's a foggy morning and we are heading to school, he says "Mum Look! The clouds on the ground!"

I think it's lovely, he is finding his way to explain things in a fashion that we understand.

More recently, we had some Subway for dinner. I got a salad bowl, with hot teriyaki chicken. The top of the salad bowl has a clear lid, and once closed the steam from the hot chicken gathered very quickly at the top.

Jono pipes up from the back ground. "Mum look, clouds your dinner!'

So cute!!

Mobile Phones Cause Cancer...and Vaccines Inflame Autism

2011-06-02T18:20:00.000+10:00

Ok... here we go, down the path of things I have choose to not take too much notice of because of the way people discuss it.

This week the World Health Organistion has admitted that phones cause cancer. Excessive use, of course, and they don't understand how it happens... but it's finally been admitted.

Last week I saw a video and chatted with Laura Colby @AutismSolutions on Twitter about the link between Vaccines and Autism.

I have somewhat refused to chat or research much about it as I know for a fact there is the genetic tendency for Autism within my family as there are many members through many generations who exhibit this.

But... I have never heard a doctor say that the brain of Autistic people can have Neural Inflammation caused by the ingredients in a vaccine.. or that we should test people for allergic reactions to the chemicals of the vaccines rather than blindly give them to everyone. Until this video.

See from around 2 minutes 30 seconds if you don't want to watch it all.

Finally the medical community is speaking out.

Did the vaccine cause my sons Autism, I still say no... but did it inflame the situation?... Well, that's a whole other question, which may never be answered in my lifetime.

Cupcakes!!

2011-05-26T19:07:00.000+10:00

CUPCAKKKEEESSS!!!!!
Made by Jono.

I managed to get one to eat ;)

Can I Cuddle a Koala?

2011-05-18T20:03:00.001+10:00

The other day after school, Jono hops in the car and says to me almost immediately.

"Mum, can I cuddle a Koala?"

I thought that school may have been learning about Australia, or watching a video, or talking about going to the zoo... or something.

So I repeated it back to him to make sure I had heard him right, then asked him "Where is the koala? Is it in a Zoo?"

"No Mum"

"Is it in Australia?"

Slight exasperation "No Mum"

"Where is it then?"

Shoving it into my face to be sure I could see it " This one!"

After that he attached it to his school bag and it has stayed there ever since.

You NEED spices when cooking

2011-05-07T15:45:00.000+10:00

Like... NNNEEEEEDD!!

Jono enjoys helping me cook, sometimes he listens to what I am saying and does what I asked and we have a lovely flavourful meal.

Often he will go and add spices when I am not looking - I may simply have my back turned for a moment, or be washing up, or talking to one of the other kids, but I have learned to only have a few spices out at a time, for a very short time - and then QUICKLY put them away!!

The other day I was cooking a chicken dish, frying it up int he pan, with onion, curry powder and some other spices in olive oil. I turned my back, and found my container of Curry powder was empty... and all in the pan!

I managed to drag out a lot of the excess, and ended up actually giving the chicken a light wash through in a strainer. It was still very tasty, and only slightly spicy.

One day, we will learn how to measure and taste while cooking ;)

I Made It!

2011-04-15T20:07:00.001+10:00

Today was the last day of school before we start the Easter holidays, Jono had a half day and Rob and I had a chance to go together to pick him up.

As soon as he got in the car he had one of his pieces of art he had done at school, and... he wanted to tell us about it.

The convo went along these lines.
Me: Jono, what's this?
Jono: I made it!
Me; What's this one
Jono: a Flower... on a Easter egg
Me: And what about this?
Jono: A chick!
Dad: Is it a dog?
Jono: (grin in voice) No Dad.

Too cute!!

What is this Daylight Savings?

2011-04-07T14:26:00.001+10:00

Since daylight savings has finished here in New Zealand, we have noticed some distinct advantages, and some disadvantages.

The sun is now actually up in the mornings, instead of waking up to pitch black, which is a real plus, there is also some fantastic opportunities for moonlight photos... :)

However, Jono has no idea that the time has changed... and as such, his body clock also hasn't changed.

Let's go through a typical morning.

6:30am - Alarm goes off
6:31am - Hit snooze
6:32am - Start dozing.
6:34am - Jono throws our bedroom door open, races in and deposits an animal on our bed.

If it's the dog, she races for our faces wagging her tail madly, while Jono pronounces "She so wiggalish!"

If it's a cat, they still come for the face demanding that we pat them / rescue them from the mad child that dragged them into the room.

After fending off whatever animal has arrived, and gaining full consciousness in moments, Jono then asks loudly "Mum, can I watch TV?"

Now, we don't watch TV on a school day, so he is happy with that answer, but the whole sleep in opportunity has been destroyed... and he does this on a weekend as well!!!

I hope his body clock catches up to things soon, especially as we are about to be on holidays and a sleep in past 6:34am would be wonderful!

Regression

2011-03-22T14:40:00.000+10:00

Backtracking a little here.

One of the major considerations with moving to another country was whether Jono would regress at all.

We decided that if we returned to Australia after 18 months, and he is the same as what he is now, that it was a risk we were willing to take, to give all the family the opportunity to live in another country.

For the first 4-5 months everyone settled in very nicely, and we established routines that worked, as well as having the chance to go exploring around a bit of the country.

We thought he was coping very well and we wouldn't have problems, he grew a little but no regression.

Then we hit a bumpy 2 weeks, reflecting now it wasn't an issue, but at the time we were fairly concerned.

He started to talk less, interact less, obey less, have less interest in us as a family and communicate a lot less overall. We spoke with the school if they noticed anything, but he was still too new for them to know him that well, and they had only noticed a few minor things.

Mind you, it took us around a week and a half to notice it ourselves, and once we started talking to the school and got some interaction going, he pretty much 'snapped' out of it. He started growing again, interacting again, and even talking more than before.

Perhaps it was 1 step back for 2 steps forward? Perhaps he just needed a break? Perhaps the impact of the life change had finally hit?

We really have no clue, but the fears of regression are now gone, even if (when) he does regress, he has shown us that he comes back stronger, and that a good thing for us to take note of for our own lives :)

Sentence Structure

2011-03-12T19:08:00.000+10:00

Jono is coming into his own with language at the moment, we are getting less babble and more real words. He is even thinking about his words, and the way they fit together to make sure they sound right.

A few weeks back, Rob was with Jono in the car heading towards home. There is a large amount of roadworks near our place as they are building a new motorway. As they got the that stretch of road jono turned to Rob and said "They...... they fixing the road". Rob turned around and said "yes Jono, they are fixing the road"

When Rob was explaining it to me, he added "I was so excited, I wanted to talk with Jono about it for hours."

It's amazing what an impact simple things can have on those around us :)

We hate Planes

2011-02-16T18:09:00.003+10:00

Or so we thought...

so here we go, the story about the planes. Before moving to NZ, we decided it would be a good idea for me to at least come to the country once and see the land, the housing, the schooling, check out the teachers, and the special needs system. I'd spent 2 months researching on line, but it was time for some eyes on the ground.

In order to make the special needs case more evident, I was to take Jono with me. Rob was already in the country on business, I had arranged babysitting for the other two, and Jono and I were packed and ready.

We arrived at the airport, parked the car and checked in. We went through customs, got something to eat and went to the gate our plane was at. Jono was comfortable, relaxed and happy. We had been talking for weeks at home and at school with social stories, videos and pictures about going on the plane - and every time he said "I don't want to" We thought that he would be fine once he got on the plane, but we didn't realise just how much he really didn't want to get on it.

We walked down the airbridge, and turned the corner to the final section to walk onto the plane - around 20m worth... and it was enclosed with glass. The moment he saw the plane through the glass it was over.

He started to stress and panic, and stopped walking saying 'I don't want to'. He lost it, I lost it, I attempted to forcibly carry him on board, and it was unbelieveably overwhelming. I had every member of staff from the plane bring out everything they could to attempt to coax him on board and it was just not going to happen. I even rang Rob who was in NZ in a meeting and asked him to help talk Jono onto the plane.

20 minutes later - defeated, bawling, screaming, saying it wasn't fair (and that was just me) they unboarded our luggage and we exited the walkway. I took some time to calm down and assess the situation. Then started the phone calls - Grandma to babysit Jono, new ticket to get to Auckland, refund on unused tickets, madly drive home, re-pack, get Jono settled and get back to the airport in 4 hours for my next flight.

I arrived at 11:30 at night to a husband with flowers and a balloon. the next four days were intensely busy and we decided we would move countries.

The next trip across was the actual move, and we decided to take no chances with Jono and actually gave him some drugs to knock him out before getting on the plane, and board him on a wheelchair so he would not notice as much. The moment of the deep snores from his mouth 5 minutes before taking off was pure bliss for Rob and I. We got him on board, and then he woke up, after only 20 minutes of sleep, but he coped, and we all made it together.

The next flight was back to Australia for Christmas - again he didn't want to go on a plane, but we realised it wasn't the plane so much, it was being all together as a family that mattered - which compounded the problems for the first flight. We got some very light herbal lollies to help him relax, and that was all he needed.

The next flight, was heading back to NZ after the holiday, and he was happy - no herbal lollies, no drugs, and none of the I don't want a plane, just I'm going home to New Zealand, and I'm with my family.

We get him the wheelchair for each trip - as it anchors him, and is familiar now, but amazingly, he wasn't worried about the plane, just where his family was, and where his home was.

Now... if only he could have told us that in the beginning ;)

We love Babies

2011-01-28T15:59:00.002+10:00

We especially love to wake up babies, by singing to them... this does not please their parents.

I have no clue where this comes from, but Jono is currently FASCINATED by babies. The time it takes to go shopping is currently completely dependent on how many prams and babies we see along the way.

I'll give you a typical scenario.
- Jono sees a pram, with a cover over the top and 'must' see what is inside.
- He sprints off at a mad rate of knots and lifts the cover to see the baby
- If there is no baby, he looks around for the baby, or returns to us
- If there is a baby, he opens his mouth and starts going "La, la, la, la, la ,la, la" in a scale, loudly, and repeats it as many times as possible until he gets in trouble.
- Rob or I come up to the group and apologise, explain he loves babies and tell him it's not ok and we walk off.

Most times, the parents are ok, sometimes they are not. Once... so far, a parent has pushed Jono away with exasperation.

The one time where the mother pushed him, he was coming up to the baby for the second time, and she was overtired with her new born. She gave Jono a shove with a loud "Excuse Me" (which he now repeats when we are at the shops).

I didn't see her push him, as I was putting our groceries on the checkout and went to explain he is Autistic and just loves babies and I apologized. Around 5 minutes after that she was at the checkout with some lollies and apologizing herself, saying she had looked after an Autistic child in the past and should have realized.

The best outcome we have had so far though, we were at the local swimming pool and he went to a ladies baby 3 or 4 times. I managed to catch him each time but the mother looked a but distressed. Finally he got to see the baby and started singing, but this time it was a different song. "Mumble, mumble, mumble, mumble, mumble do, I looove You", and he repeated it 4 times, because that is how he has heard the song sung.

I've attached a youtube of the song, coz I cannot get across what he was trying to do in text, and it was pretty much this loud and sung with the same gusto :)

http://www.youtube.com/watch?v=ZHm_icqR4GY

Ahhh babies

So we moved country...

2011-01-18T18:08:00.000+10:00

Six months ago, we moved to New Zealand from Australia, and have settled very well into life in Auckland. There is an long back story involving research, schooling, housing and much much more... this I will be touching on in later stages.

It's been an amazingly busy time, with many ups and downs... especially with plane travel. I started another blog with information about what we have been discovering here as a family in New Zealand at http://discoveringnz.blogspot.com.

I have reached a stage where I will be updating more here again, as there is a heck of a lot to share, and I honestly have been way to busy to put any of it here on this blog. I hope everyone is well and have had a great Christmas, and New year, post some more soon :)

We are still alive

2010-05-04T21:06:00.002+10:00

Hello folks, I haven't updated in a long long while, we have been travelling well, and involved in many numerous activities, from jet-skiing to going camping overnight and toasting marshmellows on sticks, we've almost bought a house in another suburb, then changed our minds and decided we will move countries instead. We are madly renovating to get our house on the market, and have loved having a swimming pool for last summer. We are all well, and jono is going beautifully at school.
I'm not sure when I will next write some, but wanted to let people know we haven't dropped off the face of the earth completely... just been very busy and loving life.
<3

Where's Tv Mum?

2009-09-15T19:11:00.005+10:00

Yet another TV Episode, it's part of the furniture, it's 'meant' to be on the cabinet, when you get home form school, you turn it on... then go outside and play... but it's still meant to be there, and if anyone tries to turn it off... well.. then you complain, loudly!

Actually, there's two recent TV tales to tell.

Firstly, with the recent renovations, we have had quite a few power tools and such around the house. We've been laying pavers with much much help from some friends, and one particular weekend was at the stage of cutting the pavers to fit in the little odd sections. The tool we were using was a wet-saw, which had a hose attached at one side and then power one the other side. We had attached a plastic bag over the power cable to protect it form water getting in, but... it wasn't completely water-tight.

After around an hour or so, the power to the entire living area of the house failed.

Jono knew what needed doing, so he grabbed my hand, lead me out to the power box outside and told me to fix the switch (yes, he has seen this before... but only the once or twice) I flicked the switch, and the TV started back up... he was fairly distressed at this stage, but once the power kicked back in he started to settle. Unfortunately... the TV didn't stay on (neither did anything else).

More tears, and grabbing my hand telling me to fix it... I went back to the swicth, tried again... and the same problem. Ok... so I start pulling devices out of the power to try and stabilise the circuit, unplugged the microwave, the kettle, the computer, the amplifier... none of which was helping at all. Then we realized.. the wet-saw! We went out and unplugged that, and a whole heap of water came out of the cable - luckily we had the safety switch built in.

So we turned it all back on and plugged it all back in, and showed Jono that it was now working, in response to which he held on to the top of the TV, gave it a hug and collapsed in a pile of tears - oh the drama and terror was over!

The second tale... again a problem with the TV. Daddy had taken the TV for a work conference, to use for displaying computer software on a large screen. He left the house before Jono was awake, so Jono didn't see it leave, however, when he got up he noticed. After he woke he came downstairs to get ready for school and saw it was missing. He said 'where's TV mum?' and I couldn't explain that it was gone for one day and coming back.. so I said it was missing. His solution? 'RT Edwards Mum!'... Yes honey, we can go get a new TV from RT Edwards.. but we have to wait until Daddy gets home tonight. This was acceptable and we got ready for school.

When we got home in the afternoon, he went to turn the TV on before he headed outside to play, forgetting what we sorted out in the morning, and no matter what I said, he just got upset, more and more upset. So we rang Daddy, we told Daddy 'TV Gone, RT Edwards', and Daddy talked with Jono until he calmed down. After that he was all happy, and when Daddy got home that night with the TV, life was all good again.

Habits, Routine, things have a place to be, and when they aren't there it just doesn't always make sense.

Simpsons... on... Mummy?

2009-08-22T10:16:00.001+10:00

I haven't been aware just how much Jono really is aware of routine, if we go for a drive he's pretty relaxed, doesn't need to know where we are going. We don't have a regular day for shopping, we don't have regular after school activities, we mostly let things flow on the weekends and he's ok with it.
This week, not so.
Generally we have channel 10 on in the evenings, and he has recently let us know that simpsons is on at 6:00pm, he points to the clock and says the time, and settles in to watch out of one eye while playing on the computer.
This week Sarah has had an ear infection and wasn't allowed to swim, so she's been watching some other shows in the afternoon while the boys have been in the pool.

One afternoon she watched her show right past simpsons time and Jono wasn't watching the time. At 6:30, when Sarahs show finished, he came to me with the tv controller and asked 'Simpsons... On... Mummy?'

I looked him in the eyes and said ' no honey, it's too late, simpsons is finished'
At first he didn't seem to understand what I was saying... Then it started to dawn on him. I could see his face as recognition happened, his eyes went downcast, his mouth fell open and his face fell through the floor.

We spent the next 30 minutes to an hour in tears of dissapointment and frustration. I asked him if he wanted me to get simpsons from the video store (as if we need any more in our lives) but that didn't make sense.
He paced the back yard, yelled at the dogs, cried and eventually settled. Then he spent the rest of the night saying 'Simpsons on tomorrow'

Poor boy, routine... In tv at least, obviously matters to him. The next night there was a double simpsons episode, and life was good again.

When I grow up....

2009-08-13T15:21:00.005+10:00

Jono has been doing a great amount of drawing at night-time again. We leave him in his room at bed time, but are ok for him to wander around a bit and 'do' stuff, he often doesn't settle down for sleep until around 10:00pm or so, but he generally stays happy in his room, prancing, drawing building blocks and the occasional 'yelp' of joy.

So, lately he's been drawing a range of things that 'could' be what he wants to do with his life. over a few nights in succession.

He Loooooves cooking, and cooking shows, and the recent Masterchef series has been on a bit at home and he's seen a few shows. around 2-3 nights after the show finished he drew a picture from it... it took a few days to realise what he had drawn, but I asked him a lot of thinhs, finally coming to 'is it clothes?' and got an ecsatic yes. He drew the masterchef apron, with the symbol, and with someone's name on it.

The next night, he drew this...
His fascination with space continues, will he perhaps help building a new colony on another planet? Or maybe this is evidence of aliens building pyramids?

then the next night, he drew this... perhaps he simply wants to be a weatherman.
It's not raining at the top, but yes it's sunny in the middle, and it will be raining down south.

It's interesting to see all this coming out of his head in a way that makes sense to us as well as to him.

Clothes Optional

2009-07-03T17:00:00.004+10:00

We've been getting on with the pool and it's really looking great, so pleased we are making it happen, and the kids are completely loving it... especially water / tactile boy who is constantly 'going swimming'.

So far, the concrete shell got made, and then we had a week of rain, so we've had a decent 'puddle' in the bottom of the pool for the kids to splash around in. As it's school holidays I bought a remote controlled tank that transformed into a boat of sorts, and can also spurt water at people (I pity the dogs).

I thought the boat thing would help the kids to play 'with' the water without getting 'in' the water... I was wrong.

Jono would go outside each morning, undo the temporary pool fencing, clamber on down into the pool and sit on the bottom dangling his legs in the puddle. Then he would through rocks and dirt and leaves and sticks in... then he started to take his clothes off.

One afternoon, we'd had workmen during the day fixing the pump and the pipes, they'd packed up and left for the day, or so I thought. I was in the kitchen fixing some food and from the corner of my eye I saw what looked like paper being thrown out of the pool, as I watched another piece got thrown. Being fairly sure the workmen had left I went out to check. The items I thought were paper were actually Jono's shirt and shorts, and he was knee deep in the pool. In the middle of Winter!

5 minutes later, his little sister throws abandon, caution and warmth to the wind and is in the water with him. I gave them both a few minutes, then dragged them into a warm shower to add some colour back into their cheeks.

Since then, he's been doing the same thing most days. I get the feeling he'll be the same when we actually fill the pool. Water babies!

Mum, Look et dis!

2009-06-12T11:35:00.015+10:00

We,ve been doing some rather major renovations of our house lately.. specifically building a pool in the backyard. I honestly didn't realize just how much mess and dirt and mud there was going to be. We've asked them to do some extra landscaping work while the excavator has been on site so I feel that every single part of the house has been trashed. *hums to self.. it's only temporary*

Co-incidentally Jono has been getting us a lot more involved in his world lately, he will call out for someone to look 'et dis' (at this) and point, sometimes we have no clue what he is looking at sometimes we can guess it, occasionally he will give a description, which often goes along the lines of 'mumble, jumble, gargle, wargle, TRUCK'. ahh... he saw a truck. Then we can ask questions like: What colour was it Jono? and he will answer, it's a white one.

We are up to 4-5 word sentences that are impromptu, structured by him and make sense. It's wonderful! So... back to the pool. This next part I'll be doing in pictures, as I simply cannot describe this.

Firstly, our yard kinda 'before' we started all this.

Next, our yard part way through the leveling of the land.

And... here's a mud puddle that grew in the corner.... Yes, that 'is' Jono walking near it to go to the swingset on the top terrace... no he didn't fall in it, on this day. However...

One of the morning we were madly running to get out the door to school, all the kids were dressed, and I was getting the last things into their school bags so we could get out the door. Jono was in the backyard on the swing (which he loves) and I thought he would have no problems staying clean.

I told the kids, 2 minutes and we are leaving.. and the next thing I hear is a little voice at the back door "Mum, Look et dis" I can hear a grin in the voice so I go to check it out. I wasn't prepared. He had slipped and fallen in to the mud puddle, and was thrilled!! At first I raced him to the shower, then I stopped grabbed the camera and took photos with him laughing the whole time.

I marched him back outside quickly for a few more photos. So I didn't have even more mud through the house. Daniel grabbed my phone and took some photos on there as well.

Amazingly, we still made it to school on time!

Dance like you are 'unaware'

2009-06-02T16:02:00.006+10:00

Many of us have heard the adage: "Work like you don't need the money, Love like you've never been hurt and dance like no-one is watching."

There are many forms of the quote these days, and it's hard to find the 'true' source, some attributing it to Irish Proverbs and Mark Twain. Regardless, the heart of the message is one I find inspirational... live for the now and don't allow yourself to be held back by others.

Recently I've been having a few discussions with people along these lines. We've talked about how people feel a 'pressure' to fit in, which can cause some of them to behave differently. The outcome of this is that many adults wonder who they are, and what happened on their life journey to become someone they are not.

For people with Autism the pressure to fit in may be a heavier weight than the rest of us. The humming, pacing and flapping that many Autistic children do is often frowned upon by society. I'm fairly certain that Jono is completely unaware of the looks we sometimes get from people when out at the park or at the shops... I notice it though.

He usually hums when moving, walking should somehow be accompanied by noise... wether it just 'feels' good, or it's now an ingrained habit I am unsure, but one thing I am sure of I is that as he goes on in life people will ask him what he is doing, make fun of him for doing it and at times demand him to stop. People will be people.

Currently his brother and sister will mimic him at times, and he gets annoyed with them. Which again I am unsure, it may be that he realises they are 'making fun' of him... or that he doesn't want someone else doing it becuase it is 'his'... or perhaps he doesn't like it being brought to his notice. Until they bring it up though, he is largely 'unaware' that he is doing it.

So where does the dancing come into this? My daughter will dance along to a song, and suddenly notice people are watching and get embarrased and stop. She tells me she is worried what other people will think of her. I tell her don't worry, because they are all worrying what other people will think of them.

It's a big lesson to learn, especially for one who is only 6 years old.. but I hope she gets it, I want all my kids to get it. This is one lesson Jonathan can teach all of us.

He doesn't hold back. He doesn't feel judged. He isn't aware of others looks, and he is just comfortable being himself.

This week in your life,
Dance... like you are 'unaware'.

Update: The day after I wrote this, I had a 'sleepover' at my Mum's place, helping her with something. I left my place around 7pm, wearing a trackpants, long shirt and a fluffy polar fleece dressing gown, as I knew we wouldn't go out anywhere. On the way home the next morning, I stopped at a petrol station... and 'almost' took off the dressing gown so I could appear more normal. Then I remembered this, and left it on because it was warmer, who cares what people think!! It was a good feeling :)

Gluten Free doesn't have to be boring!

2009-05-24T18:50:00.006+10:00

Even though at the moment we are very 'relaxed' about being GF and CF in our foods, we find that overall they increase the health of every member of the family when we do have them. Some foods I simply haven't changed, we still drink soy milk, we have rice biscuits and so on.

Recently I explored into different ways of making fun foods that suited the gfcf diet and found a few. One which we particularly love from www.rainbowfrenzy.com - the Rainbow Cake.

For this one I simply use a gf buttercake recipe mix and colour each portion with vegetable colours. We've also made them as cupcakes, it's a lot of fun to make and makes the fairly plain but tasty recipe just that little more interesting.

It's also great to get Jono into the kitchen and creating, he enjoyed making these cakes as it was just so different to what we have done before, and he enjoys playing with the colours as we go.

Another great place for GF recipes is omnomicon, the recipe she's got here for the pancakes simply looks amazing, and can be adapted for gfcf very easily. (of course, don't make cheddar ones, but just plain ones if cheese is not on the diet... or change to a soy cheese).

Another great recipe place is Gluten-Free Mommy, this site is a wonderful range of recipes, from breakfasts through to dinners, even multi course meals! In planning dinners week by week this is a great resource for trying a few new recipes to introduce to the family a few new flavours and interests while finding favourites, or new twists on favourites.

If I try something and it doesn't quite work for some reason... well, I have 2 dogs ;)

Pasta Tricks

2009-05-24T18:36:00.003+10:00

I'm trying to do a bt more planning ahead with our weekly meals, and decided to go with the 'pasta' night. I'd found a spinach and ravioli stir through sauce that I wanted to try... but wasn't confident how the kids would go with it. So I made a lightly curried meat and beans to go with it... and debated on keeping some pasta plain in case they didn't like the sauce, but decided to go with the sauce and just see.

When I served up I was very pleasantly surprised by how much everyone loved it... it got devoured! I got Daniel to grab the pot and bring it to the table so we could dish up seconds, which we all enjoyed.

Jono enjoyed it so much, he wanted thirds.. and the pot was a little too far to reach, so he stood up, got up on his chair and climbed across the table to reach it. He stayed kneeling on the table and started dishing himself a spoonful, and then another, and then another... all of a sudden Rob grabbed his plate and dished himself jono's spoonfuls onto his plate. Jono grabbed a fourth spoonful and as he lent over his plate to place it on he realised the rest was gone!

He laughed, a little... 'haaa ha', and went right back to dishing up more pasta!

Rob got his extra, Jono got his extra and we all had a laugh with him at the pasta disapearing off his plate ;)

Happy Mothers Day! (did you bring a tissue?)

2009-05-10T06:33:00.007+10:00

For all the Mums, New Mums, Older Mums, Multiple Mums, Adoptive Mums, Mums-to-be, Grandmums, and just the nice lady that all the kids call Mum... HAPPY MOTHERS DAY!

It's 6:30am here, and I'm the first one awake, I've grabbed my laptop and headed downstairs, it's quiet, the birds are in the backyard on the trampoline, the sun is just getting over the hills and the birdsong is ringing in my ears. I have a cuppa, a water, and am keen to get into my home gym and move my muscles. My children all wanted to sleep together last night so I have 3 kids in the one bedroom, mattresses on the floor and general chaos... they love it.

Yesterday I thought of getting gifts for my children to thank them for making me a mum, for it really has given me so much to be a Mum...to do a reverse Mothers' Day, I ran out of time but the sentiment is there, perhaps this post is my gift :)

My life before kids was a world of difference to what it is now. I have 3 children, which is enough a challenge in it's own right. I had then close together, around 22 months apart, so my oldest was five when the youngest was born, when you are at home, with no car and no friends nearby... this is also a challenge. My second child is Autistic, and yes of course this is a challenge.

Being a mother of a special needs child is definitely a greater challenge, as the 'book' really doesn't have much information covering these type of situations. The needs that occour are different and the ways to handle them depend a lot on how you are within yourself. Are the rewards greater? You know what, Im going to say not really... it's just that you become better tuned at looking for them, and you celebrate the smaller things with more intensity than what perhaps you usually would.

I still remember when Jono was first able to feed himself by himself with a spoon. No, he wasn't holding it right, no it wasn't tidy, but by joves he could do it, he was around 3.

I remember him getting on the internet and downloading and installing games on to the computer, without help, when he couldn't read, and couldn't talk enough to ask us for help, he was 5. We were amazed about this for years.

I remember the first time he came home from school with a piece of paper with his name written on it, it was crude, it wasn't all the letter, but it was his, he would have been 6. Just this year he chose a pair of sneakers to wear on his feet rather than sandals all year long, the confining space on his feet didn't worry him as much, he's now 8.

I've had more than one person comment lately how well I do with Jono, my level of patience, the way I handle him, the way I comfort him. I thank them for the comments, but that has been 5 years in the making. The person I was when I found out about his condition, is a completely different person to the one I am today... and I am grateful.

I am grateful for the lessons to my own heart about what it means to be a Mum, to any child. I am grateful to have Jono in our family, and that we have all 'had' to learn to be more patient with each other. I am grateful for all my children, and I hope they never feel like we 'play' favourites, but that we are treating each one as individuals. I am grateful for my husband, and for his family with their unity and the complete acceptance and love they have for us. I am grateful for my family, my Mother and my brother and the amazing childhood and great childhood memories I have with them.

And I am grateful for my Mum, and the positive heart she always taught me to have, the acceptance of my self and the 'healthy ego', to do more, to try more, to be different and to not be afraid of it. I so hope I can impart that on my children.

So, Happy Mothers Day, to all Mums! May you celebrate your motherhood, in all it's 'glory' and be a better person because of it.

I have to share this, I found it this morning and it's just inspired me so much, I feel it's relevant to every child, to have a mother with this kind of heart, and if you aren't that mother yet, give your children time, they are working on it :)

A PERFECTLY BEAUTIFUL SON

A little boy was feeling sad. He had been born with a disability that made him walk, talk, and move differently from other children. The little boy was sad because some of the kids in the neighborhood had been making fun of him. His mother took him by the hand and led him to the full-length mirror she kept in her bedroom.
“I’m crippled and useless. The kids say I am.”
“You’re my perfectly beautiful son.”
“Mommy, how can you say that when you know how I look?”
“You’re my perfectly beautiful son. You look like your daddy. You’re lucky, my pet. He’s handsome and strong. Can’t you see? You belong. Be proud, my beautiful son.”
“My feet drag on the ground. I fall down all the time.”
“You’re my perfectly beautiful son. And when you fall down, you get right back up. You’ve never stayed down and I know you won’t now. Get up, my beautiful son.” ... continues

You can read the rest here, at the Baltimore Family Examiner.

Words to do with Renovating

2009-05-08T16:30:00.005+10:00

There has been a tonne of renovating going on in Jonathan's life recenelty and more to come yet.
We have taken out half the garage and built a new room - which will start it's life as a gym. While getting the gym done, we decided to get a few last things done to the kitchen... and then after the kitchen looked at the bathroom and started to pull that apart, along with the toilet. Next we are tackling a pool and outdoor stuff.

Meanwhile at school, they are gutting and rebuilding approximately 3/4 of the school buildings as well as putting in new buildings. So he's getting it all over in his life (poor boy). I have to say he has handled it remarkably well, and been very settled throughout, probably a lot less stressed or concerned than what Rob and I have been.

As a result of all the reno's, we have had a few classic moments that I really want to share. The first when we had an electrician here fixing the lighting in the bathroom.

The electrician arrived quite early - around 7am, on a weekend, and Jono was sleeping in. He did all his preparation work, cut new holes in the ceiling for new fixtures and got everything ready to the point he needed the electricity to be turned off. He let us know it was going off, we shut down computers, turned off the telly and let him get on with what he needed to do.

Around 5 minutes later, the electrician came downstairs with a huge grin on his face and a story for us "your little fella is quite funny" he says.

Jono had awoken, and as usual headed for the light switch in the hallway to turn it on (it was 9 o'clock in the morning an broad daylight, it didn't need to be on, but such is his habit). He reached for the switch and 'click'... nothing happened. 'Click', still nothing... 'click, click, click, click, click', pause... then a little voice 'uh-oh'. Another pause... then... 'I can't see, I can't see, I can't see!"

We all cracked up laughing and spent the next few days saying to Jono 'click.. I can't see' and he's been giggling with us. Lovely to see he has a sense of humour about himself.

The other incident that's kept us laughing has to do with shoes. We've had a shoe rack near the front door for years, and with the renos have opened another space in a cupboard under the stairs with heaps of room for schoolbags, lunchboxes, iceskates, and the shoerack.

I moved it in one night when he was in bed, so he wasn't aware it had happened. The next morning when he woke, he came down the stairs and noticed it straight away. "Where's my shoes??"... on top of "I can't see" it's been a great week, both for his intiating conversation, and for the family funny bone :)

Dental Surgery - a.k.a Run Down the Hall Quickly!

2009-04-08T16:22:00.009+10:00

We are in the school dental system and as such, this year it was Jono's turn to go to the dentist and get his teeth checked.

When Daniel hit this stage of life, I wasn't working, I was able to be there with him and I wanted to be with him (first child, I 'have' to be there). Last year Sarah got to go when she was in prep, I was working, and more relaxed about it.. so I let her go in school hours at the time she needed to go, and she was fine.

As I am now working, and Jono is older, and the other two survived going to the dentist, I decided to let him go for his check up with his teachers in school hours. Then the 'fun' started.

The first checkup he did brilliantly, he wore the protective glasses and the bib, he opened his mouth wide, he had no problems with the chair moving up and down, nor with the dentist's mirror, fingers and instruments being in his mouth. His teacher reported all this back to me very proud of him. I was too! Then we got asked to come back for a second appointment.

Second appointment we booked in after school, so I had all three kids with me. He did all as above and was totally comfortable with being checked out. The dental assistant explained which teeth needed work on them and why. He has 5 that need work, 3 with extremely minor cavities, and 2 with slightly deeper cavities, that all need covers or fillings of some sort to keep the 'baby teeth' in place long enough for his adult teeth to grow in with little complications.

Once I had all this explained I gave them the go ahead to do the smaller ones and 'see how they go'. The suction machine got turned on, and that was it.

'No thankyou, No thankyou', pushing it away, wriggling off the chair to get away. I decided very quickly that I wasn't going to make him sit through this as he was actually happy enough to have a checkup, it was just the noise that freaked him out. So we let him go, grabbing the glasses and bib off him and he ran out the door and discussed what the options were. Basically, he has to go to hospital and go under in order to have a few fillings.

Third appointment, with the dentist themselves at the school, same thing - happy to go, happy to be prodded. We talked about whether it was worthwhile to book him in again for the dental assistant to attempt one more time to do the work in the surgery rather than in the hospital. I said it's hardly worth it, and asked them to turn on the suction equipment. He ran for the door and they signed the paper work to get him into the hospital queue, with a 6-12 month wait... but first.. a visit to a specialist.

Appointment Number 4. Yes, I am starting to get tired of visiting dentists by now.

I am on the queue for the specialist appointment, and expect to get in after around a month. I got called two days later with an opening in two days... in the middle of the day. So I organise some time off work and decide 'bag it, I'll take the rest of the day off'. I wasn't sure how he would go and if I went back I'd only get 1 hour anyway, so wasn't too concerned about that.

We get to the appointment a little early, and they have cartoons in the waiting room, which he enjoyed. We got called into the room and once again he's happy about the chair, actually wants the glasses, and is ok with being checked out. They told us his teeth were beautifully clean and the issue is there are smaller fissures in his teeth that a toothbrush can't actually clean that are holding foodstuffs that are causing the decay. It's slow, and they aren't stressed about it, but it definitely needs work.

Then the room next door had a suction machine go in in there... up, out of the chair and running down the hall, but this time towards the noise! He wanted to see what was happening (with his hands over his ears for protection). So, we have him booked into hospital, and are on the waiting list, with one more specialist appointment in a few weeks time to discuss and practice brushing.

And what did we do for the rest of the afternoon? We went shopping, had lunch, got some clothes, bought Easter eggs, and picked up the other two. What a lovely afternoon! Perhaps I should book him in for some more appointments... Hmmmm ;)

The Power of Underestimation

2009-04-04T05:29:00.006+10:00

What, underestmation has a power now? Well, not in and of itself, but in the effects it has on those around it.

I have for a long time just 'done' the things that need to get done around the house... socks on the floor? I'll pick them up. School lunches need making? Puts one hand in the air, while grabbing lunchboxes with the other. Floor needs sweeping? I'll grab a broom, then the dustpan, and then the mop; and so on... oh, yes, you're a Mother too and you've also been there. So you know what I'm talking about.

Around a year-2 years ago we started giving the kids more chores, and just asking them to help out in general... except for Jono. I was happy if Jono was dressed for the day, had shoes on, had clean-ish fingernails, and got into the car happily for school. Because I was more concerned about just 'managing' to get to school and work on time, he got let off the hook a lot with chores and getting ready type stuff. What I didn't realise was how much of an impact this was having on all 3 kids.

It wasn't uncommon to hear Daniel say "how come Jono isn't/doesn't/wasn't". Daniel was seeing it as unfair that he had to do 'stuff' and help out, for a time we told him he was the oldest and just 'has' to do it... then Sarah got older and started helping too. Sarah wasn't too concerned as she has helpfulness built in to her genetic coding somewhere along the line, and for me I just wanted to 'get it done', especially when I went back to work and had to leave the house on time or risk my job, occasionally late - well that's ok, perpetually late... even if due to an Autistic boy having a meltdown, and my boss worked in the education system and involved in special needs children and having all the compassion in the world... it just didn't sit right with me, I had a time I needed to arrive and I wanted to make it happen... ahhhh commitments.

This week, the amazing happened.

Get ready.

You won't believe it.

Are you sitting down?

Jono packed the lunchboxes!!!
By HIMSELF!!!

Are you amazed?

If you have a child with special needs I am sure you are dancing with me... I see you, doing twirls in your kitchen and a boogie step. If you don't then I guess you've stopped reading.

I couldn't believe it, he was around me in the kitchen, I had the lunchboxes on the bench getting them ready as I have every day for the past 'x' years, with absolutely no prompting, asking, or direction from anyone he wanders to the plastics cupboard and found for himself a water bottle, and a lid, filled it up, put the lid on tight and put it into his lunchbox. *close jaw now*

Then Sarah said, "get one for Sarah, Water bottle for Sarah", I told her don't worry, it's ok, he did a good job. Next thing, not only has he understood his sisters directions, but he knew what she wanted, and wanted to help out - back to the cupboard, grabs another bottle, and fixes it for her.

Then he stood beside me and waited. I had the next items ready to go into the lunchboxes, so I handed him 3 and he put one in each box. I get the next items and he does it again. He helped me get the rest of them ready.

Even as I write this I'm teary. He can understand things that need to happen to get ready for a day, he is capable of doing them himself, and it makes sense to him. He can help for other people and not just for himself, and he can do it without being asked. Wow!

So Daniel can not ask the 'why isn't Jono' anymore, and feel that he is being treated quite so unfairly with chores, Jono has just won himself a new job and Sarah, I'm sure will oversee Jono to make sure it's done right. All is well, all is very well!

Autism Awareness Day!

2009-04-02T16:31:00.002+10:00

Today, April 2nd, is World Autism Awareness Day... were you aware? I wasn't either until I heard it on the news this morning.

This is a fairly new event, having been legislated by the United Nations on December 18th 2007, and as such is one of only three disease-specific United Nations Days . The aim of the day? to raise awareness of the condition to the people of the world as a whole and impart the importance of early diagnosis and early intervention. Read more here...

So why should you care? In all reality I don't expect you to. If it's not your child, your family member, your area of work or research or interest I don't expect this to have any impact on you whatsoever.

I was asked on Twitter This morning by @rentedmule 'What is my favourite charity?'
My reply? A tough question for me, of course there is Autism, but there are others and they are mainly for personal reasons. I have a friend whose daughter has Cystic Fibrosis, and that's a big one. I've donated blood and collected money for Red Cross society on more than one occasion, I have a soft spot for Starlight foundation as they grant children with fatal diseases one last wish and I have done Shave for a cure, for people with Leukemia. The article appears here. Do I care about people who are rebuilding after Black Saturday for example... yes, of course, and I have donated to the cause, but they aren't as big a priority to me, as there are so many other things that have personal impact in my life.

I think the idea of Autism Awareness is fantastic, and having it as a UN legislated day shows to me just how much of an impact this condition is having on our world. The other thing I love? They focus on things like early intervention, not on chelation therapies, foods or 'cures'. Simply raising awareness. Wether a 'cure' will ever be found, or its more a matter of people with this condition learning to be able to intergrate better with the rest of us is not something I focus on.

I know there is genetics involved, I know a lot of people say that the 18 months vaccines 'cause' Autism (though personally I'm convinced that is not true, though it may accelerate certain traits), I know there is still so much unknown about the condition. I also know, for me personally, in my life, I have a boy who is bright, loving, smart, has a great sense of humour and is an intergral part of our family, who is Autistic.

Who would put their 10 year old into counselling?

2009-03-27T15:35:00.002+10:00

*puts one hand in the air*
That would be me.

*put up other hand*
And my husband.

It's been an interesting few weeks, we've been delving into 'causes' of our weight gain, and looking at our lives and the things that have caused our bodies to gain weight. A lot of the recent weight changes is just 'coping' with the changes in our lives due to have a child with special needs, and the personal guilt, anger, disappointment, resentment and so on through to the point of being 'ok' with it and continuing on with living in a good frame of mind rather than a guilty one.

So with all of that we have been looking at Daniel and what 'could' have caused his weight gain. We went back through the family photos and discovered that when he was in grade one, he was skinny as.. then from around the middle of grade two onwards he started to bulk up.

When we looked at the photos we realised a catalyst for him in his life has been his grade 2 teacher... she used to yell at the students and he would come home around once every 6weeks saying that she was shouting. At the time we didn't think a great deal of it, and tried to tell him perhaps the kids where being naughty. Wether it was that simple or not, it had a massive effect on him. So much so that when he started grade 3 he was so amazingly scared of going to school, we talked it through and we thought it was dealt with and we all moved on...

This year, with looking back at his life in photos, and talking to him about it we realised how much bigger this was for him. Then Sarah started saying that her teacher yelled at the kids and they would all get scared. Mommy Bear awoke at this point raised her head and decided to take it straight to the authorities... the school principal.

The night before I met with the principal I was talking with my Mother-in-Law about life and talked about this latest realisation we had. In discussion she talked about the chances are that Jono has also had a large impact on Daniel and told me about the times Daniel wasn't coping and would clench his fists in anger about things that jono was doing... At the time I was not able to see what was happening with him and I wasn't even aware of this going on. I've since seen it and talked with him about it.

So... in the principal's office we discussed the grade 2 teacher, the challenges of having a special needs child for us as a family and the difficulities that could be there for Daniel. She said that the school was going to have a counsellor once a week to the school to help children with things like this and would I like Daniel in the program. Half of me said yes, and half of me said 'what am I doing?'. Regardless, I booked him in. The counsellor was due in 2 days after I saw the principal... talk abut timing.

That night at dinner we talked with Daniel that he could have this person to talk to about 'anything', about his teachers, about his family life, about Mummy getting sad, about Daddy getting frustrated, about him getting frustrated, everything was open for him to talk about, and that this person can give him ideas and suggestions to help him out both at school and at home.

He was really interested to understand all about the counsellor and wanted to know everything I talked about with the principal. A few days later he had his first session. When he got home we asked him how it all went. He enjoyed it and was really happy to go, so much so that he asked to go again the next day. I don't know how much he really got to discuss that first day, or if he's just excited to be missing out on school, but I'm happy he's happy with it, and that he has an outlet and an option for him.

We all need support, and sometimes it turns up in unexpected ways.

Daddy Day

2009-03-24T15:58:00.005+10:00

Over the past few weeks we have been having a special outing for Daddy and one of the kids. Three weeks ago it was Daniel and Daddy going to the movies and lunch. Two weeks ago it was Sarah and Daddy going skirt shopping with iced chocolate and muffins after. Last week was Jono's turn.

I'd come up with the idea of taking Jono to a games arcade at the local shopping centre as we had been to one in the city and he really enjoyed himself. Rob was quite excited about it and spoke with Jono about it quite a few times in the week leading up to the day, Jono seemed rather excited about it as well. On the morning as they headed out they both seemed quite happy to be going. I bundled up the other two and a tag-along friend and went iceskating.

After we all got home it turns out Jono didn't really have a good time at all, he spent a fair amount of time in the arcade with his hands on his ears and crying (which he's never done when we all went together in the city). Rob took him to a Macca's and then for a wander around the shops, but it just didn't quite turn out the way he'd imagined it to.

They where ok when they got home, and Jono was happy enough (he really is a very happy boy) but Rob was quite downhearted about how it all turned out and we talked a bit about expectations and reality and adjusting them as need be. He didn't do anything wrong, it just didn't quite go to plan... and that's ok.

I distinctly remember the times for myself where I've had an outing or a plan in mind of what I want to get done with the kids because it's all I have energy for, or because I think they will enjoy it if they just give it a try.. or whatever reason, but having it go wrong, and usually because Jono isnt coping (or more to the point I'm not coping with Jono not coping). I've had to learnt to adjust, adjust my own attitude, adjust the plan, adjust the schedule, decide to not stress if we are late or have to leave early, and above all, to not blame or throw guilt around on anyone... especially myself.

*self hugs*
*and hugs for you too, coz there are days we can all use a hug*

How do you find someone who can't respond?

2009-03-19T16:05:00.005+10:00

We have had 3 major occasions where we have 'lost' Jonathan, as well as many minor ones. The biggest concern for me has always been, how do I find him when he won't respond to his name? Often it's not an issue as he hums while he walks, but lately that is getting less and he is getting more confident.

The first incident was a few years ago now when Rob and Nanna took all the kids up to the local school for a fete. They were in queue for something, and were waiting to buy tickets. Jono was standing behind them with Daniel and Sarah... 'was'... a moment after they turned away, he was gone... there was too many things of interest to look at, and he took off. As soon as they realised (seconds later) they started searching and spent a heart-stopping 40 minutes looking for him, at the rides, in and out of the classrooms, all over the school grounds, get the police involved... and eventually found him in one of the classrooms just having a look around.

He wasn't concerned about being seperated, he didn't know it was good to tell someone where he was going, he just wanted to have a look around.

The second time was around a year ago now, I was taking the kids to Dreamworld for an outing, and Jono decided he didn't want to go. We got into the car, drove all the way there, and he started to panic once we arrived. He unbuckled his seatbelt, threw himself on the floor and started crying... I couldn't get him out of the car, and he just could not move he was so terrified... I still don't know why as we had been there a few times before. To save the other kids being too upset we decided to go to Logan Hyperdome and play in the playground there for a while. They were all happy with that and went into the playground ok.

I had forgotten my phone so said to the kids I'll be back in a second and went to the public phone box to call Rob to let him know where we were so he wouldn't be concerned. In the meantime someone had opened the gate to the kids play area and Jono got out to come and find me... I didn't know he had done this until I got back (2 minutes.. ish). After I realised he wasn't there we searched the local area, got a shop owner to contact the shopping centre guards and fell apart in tears. Daniel said 'well, I guess that's it for Jono' (or something along those lines) and I said 'No, we are not leaving until we find him'. Although in my mind I was thinking 'anyone' could have grabbed him and he could be gone. I was terrified. The guards said they found a boy fitting my description screaming a few shops down the way, we took off and found him, curled up in a lady's lap crying his eyes out.

He simply didn't realise I was at the phone booth and came to find me, at least he knew he was seperated this time.

The third time was last week. We went to the local shops and went to the post office, the electronics store, the toilet, the op-shop and then groceries.. we also had to look at the barber's pole that lit up, the interior water features and the chinese shop. After getting a trolley full of groceries, I decided I would buy that shirt form the op-shop and we went back there. I picked up the shirt, parked my trolley and when to the counter with cash in my hand. By the time I got to the counter, he was gone. I finished as quickly as I could (1 minute) and came back outside to look for him. I recovered my steps in every shop we had been too, and couldn't locate him. With a trolley full of groceries it felt like very slow going to each of the shops to see if I could see him. I was calling his name constantly and got Daniel to check the toilets for him as well... after around 10 minutes my heart was in my throat and I didn't know what to do or where else to look.

I went back up the alley one more time, turned around and saw him outside the shop we were last at... walking along, unconcerned because he knew where we were when he left us, and seemed to think we would be there when he got back. I 'think' he took himself to the toilet, but just didn't respond when Daniel called for him.

So what to do next time? I'm kidding myself if I don't think it will happen again. I had a friend suggest we make a business card for Jono with his name, and my phone number... and he keeps it in his wallet and brings it to the shops or whenever we go out. Great idea, and one I think I'll implement, with a little training this could be a great help and something that can put my mind a little more at ease.

The Affects on a Parent

2009-03-08T06:50:00.005+10:00

30 Kilos... 70 Pounds...

Wow, it's startling when I make it so simple, what affect has Autism had on my life... besides the emotional turmoil, the lack of 'normalcy', the impact on our lifestyle, the types of jobs we are able to choose, and so on, it's also meant 30 kilos.... of extra weight.

It's taken 5 years to put those 30 kilos on, and a heck of a lot of it was comfort eating. Rob and had been active members and leaders of a church group for 15 years, the majority of it in Sydney, after Jonathan was born we wanted to come back home to be with our families, and continued on with the same church group for a while, but after we got a diagnosis (when he was 2), we felt a huge lack of support from many areas in our lives (whether the lack of support was real or imagined or just the effects of the overwhelming emotion we were feeling or a coping mechanism... I don't really know), and we shut down, for 5 years.

In that 5 years we didn't go out very much, it was far too difficult to go to a park unless it had fences all the way around the play area so we didn't have to be on our feet and constantly running after this child who had no comprehension of boundaries and danger. We couldn't talk with people easily as we 'always' had to have one eye on Jono, and the other eye on the other two. At the church we went to, the building was on a main road and we 'almost' had Jono get hit by a car one time as he raced towards the 4 lanes of traffic one time when he slipped away from us. You can read a bit about that time here.

In that 5 years we started playing online computer games, we had a way to connect with some people, we had fun together, and we had an 'escape', we enjoyed the escape a lot, perhaps too much and would often be online all day and then all night... we also stayed up very late and ate junk food... lots of junk food.

In that 5 years cleaning the house went completely out the window, if everyone got fed from clean plates I was happy with that, if they had clean clothes that was ok and if their bed sheets got washed every now and then, that would do. The floors were a constant mess... Jono had no concept of the rubbish bin or tidying up, and I was too overwhelmed to teach him, so he would eat something and then drop scraps on the floor.

In that 5 years I put on 30 kilos.

I have to say that today, looking at all this its a foreign world, we are still working on things from this time, but a lot of it has changed.

Around a year ago the 'fog' started to lift, I got a job with my husbands company painting an office building, 2 stories, every wall, every cubicle, all by myself. I got to choose the colours, I created something lovely out of something disgusting (and I'm being serious, it had been graffiti'd and left in disarray before they took the building over), I could see the changes happening in front of my eyes, and I lost 5 kilos (around 10 pounds). It was the start.

As last year progressed we gave up that online game and started spending more time with real people, I got a job as a graphic designer, during school hours, and joined weight watchers. I was starting to have communities again... and over the rest of the year lost another 5 kilos.

This year so far, is going great and the Affects of Autism are not as overwhelming as what they once were. I've allready lost a few more kilos, and am aiming to lose the other 20 within the next 2 years. We are planning on putting in a pool in the yard, and are getting more focused on health, nutrition and exercise. I'm also changing standards for the house, Today I can even see Jono's floor!

We are getting there, we've been in a pit, a large, stinky, gooey isolating pit, partly due to our own coping mechanisms, but coming out the other side of it I can also see that we have learned, changed and grown...

... all of us.

Dog Poo is Funny!

2009-03-05T16:02:00.000+10:00

Like real funny not just a small smirk out of the side of your mouth, or even a giggle, but the full belly laugh followed by spurts of giggles kind of funny... especially when the dog poo has been found inside the house.

First let me explain, we have 2 dogs, both are Jack Russel Terrier Crosses, and both are outside dogs. At least that's what we tell them around 15-20 times a day, every day... I'm starting to think the dogs are smarter than what we give them credit for.

Sometimes we see a dog poke it's head in the door, looking at us with its head crocked on the side as if to ask "How about now?" This quickly gets followed with an "OUTSIDE" by any family member. Other times we turn around to see the scuttle of dog claws and a tail as they finish running through the house from the front door to the back door, and then other times we have our daughter wake up crying saying their are pigs in her room and we find a dog under her bed... but that's another story.

So these outside dogs have left little presents for us from time to time, and usually in the middle of the hall, this week they left one in the middle of the lounge room floor as we were getting ready to go to school one morning. Jono was having issues with his School shirt and wasn't exactly watching were he was going, I had just seen the Poo and hadn't had the chance to clean it up yet and called out to Jono, "Watch out, Dog Poo, Yucky!". Magically the school shirt was no longer and issue and the "Yucky" was hilarious, the tears that had been their moments before had gone replaced by giggles, then all out laughter.

I had a new weapon!!

Now the reason that Dog Poo inside the house is funny, is simply that it is not meant to be there. One thing that I find is reasonably accurate of people with Autism is that they have a different way of viewing the world. If someone trips and falls down when they were walking, that's funny... not because they fell (and especially not if they hurt themselves) but because it's not meant to happen, people are not supposed to fall over, so when it happens, it's a funny thing to see. The same with dog poo inside the house, it's simply not meant to be there.

For the rest of the week, whenever he was getting sad or overwhelmed about something I would talk about the dog poo, and he would stop the tears, buck up and giggle... and then a few days later a bird did a poo on my car...

School shirt ON!

2009-02-28T08:56:00.001+10:00

So we've been having a battle (again) with the school shirt. It is not the most comfortable fabric, and I've been letting him go to school with another shirt and they have been dressing him there. Last year that was ok, but next year he will be in what they term as middle school and... He just needs to move past it.

So we've had lots of 'no want it' and tears (from both of us) and he's been throwing the shirt away. It's been in the school rubbish bin, over the neighbours fence, out the car window and so forth. We compromised for a while and had him in a regular shirt with the school shirt on top and that was kind of ok until he moved classrooms and there was no air con, in Aussie summers 2 shirts+no air = sleepy child. So he's found it harder to settle in and be able to concentrate. We went to just the school shirt for a while, but that also had issues. Then his teacher suggested we get him singlets. Brilliant!

He chose what singlets to get, and loooves them, he spent the first week showing them off to his teachers (and everyone else) and is happy to put his school shirt on. Such a small thing can make such a big difference.

It reminds me of the advice I give to new parents. Whatever you do regularly, becomes a habit and what they expect, be it good or bad, if you're happy with what you are doing, continue, if not, change it early!

*Takes own advice to heart*

Today, I feel it

2009-02-16T08:34:00.003+10:00

This weekend has been fairly big in a few ways, and today's not going that great so far... Bedsides the fact that it is Monday. We are working on Jono wearing his proper school shirt, and it was going ok last week, but today he's completely against it.

Back to the weekend though. On Friday I took the kids all shopping to get groceries at Coles to help the bushfire appeal. We walked past a games shop and Jono just wanted to stay and watch, I let him for a little while, then we needed to get going. I cajoled, demanded, dragged, insisted and ended up smacking him to try and get him moving past the shop. He dropped to the floor in tears, I realized we weren't getting anywhere so I stopped and hugged him till he calmed down enough for us to be able to move. 10 minutes later we were in Coles.

While there all three kids were being mischievous as the lines were so long and some old guy who doesn't know us from a bar of soap mutters under his breath, but loud enough for me to hear, something about smacking children. Thankyou random stranger for the input. Grrrrrr

Then we went to a new church on Sunday, and a few people 'noticed' the noise emanating from our corner, not pushy or nosy, and not many of them but on top of Friday, I felt it.

I started to think, we will never be 'accepted' as a family, we will always be people who are different. As a child I strove to be different, but on my terms... Being goofy, funny, silly... This is not on my terms and I don't like that.

So today, He can't wear the school shirt, I don't know why, He can't tell us what's wrong with it, and is totally overwhelmed about the whole idea of wearing it... Both of us.
Today, I'm feeling it.

Wait wait me coming drive!

2009-02-04T08:19:00.001+10:00

Finally getting back into routine and last night Daniel and I headed out for ice skating. It's been around 3-4 months since we have been and we were looking forward to it. As we got dresssed and got the socks and shoes, Jono saw us and decided he wanted to come.
He went and got his shoes on then came into the front yard. After we came out the front he put his hand up to make us stand still then started pleading to come with us.
He HATES ice skating, or he did last time we tried, the room, the noise, the cold, it's all too much! So I had no problems saying no... But he didn't see it like I did. Rob came out the front and sat with him and tried to talk about him and Daddy would do something together.
So Daniel and I head out the gate to the car, and just after we open the doors we here him start crying... nothing too major, but he's obviously sad. We head off and have a great time, pretty much wore ourselves out. When we get back Rob told us it took Jono am hour to calm down, Rob hasn't seen him like that in a very, very long time!
In fact those kind of meltdowns happen only around once every 2-3 months now. Well do I remember the days when meltdowns were pretty much daily. It's kind of odd measuring progress by how often he gets upset, but I'm glad to see the progress happening. :)

When No, Means No!!.. and Yes.. and...

2009-02-02T18:20:00.000+10:00

Lately Jono is expressing himself with the word No. He is using it all all kinds of situations.

Are you hungry? No! Put some food in front of him and he will eat
Do you want to go for a drive? No! Tell him to get his shoes on and get ready and he gets into the car happily.
Pass me the drink/remote/phone..etc. No! Then he will hand it over.

I 'think' he is just testing boundaries a little, but it's really hard to tell.. it's hard enough to tell with the other two! Ah well, as long as he eats, wears clothes in public and gets in the car when we need to get going, it's all good.

No want it, school

2009-01-27T08:14:00.001+10:00

Yesterday we were getting the school books ready and Jono happens past the table. He sees what we are doing and pipes up, " no want it, school". We all had a laugh then were quite amazed that he came up with this sentence by himself. He's been extremely chatty the past few months lots of 3-4 word sentences about a whole range of things, it's wonderful.
So this morning he's woken reasonably early, doesn't want 1st day photos taken, won't wear his school uniform, but has put on his shoes and 'seems' ready to go. It's 5 minutes before we head out the door... Wish me luck!

We have the funniest brother in the world!!

2009-01-14T20:51:00.000+10:00

Quoted from Daniel and Sarah.

Yesterday was my last day of holidays with the kids before I went back to work, so we got in to organising school books, clothes, shoes and etc. I had been through all their clothes and figured out what needed to go the day before and had 4 bags for the op-shop. Grandma was in town and rang asking if I'd like some help school book shopping... for some reason I thought this was a silly question... like some? I'd LOVE some! Anyways, I tried to sound fairly nonchalant over the phone but secured and extra pair of hands, arms, legs and eyes for the day.

So, we started by going to pick Grandma up, then went to the op-shop to drop off clothes, bought a few things we needed and a fair few we didn't then went to the shopping center. In shop number one we got most of a set of school books, socks, shorts and shoes for Sarah. I pulled out around 4 pairs for her to try on and we found one she liked that I was happy with the price of.

Jono then decided he wanted shoes... so he pulled out a pair of lovely pink girly sneakers from the aisle we were in and sat down to put them on. I talked him into a blue pair that only had tips of pink... but he wanted the size 3 (he's not quite a 1). I tried to get him over to the boys shoes but he didn't want anything to do with it, no he doesn't need help, no he doesn't want black shoes or white shoes, yes he wants these ones. I left the 3's on him and decided to do the quick swap at the checkouts, which entailed him taking off the 3's, putting them up to get paid for, and lo and behold after touching the checkout girls hands they became a size that would fit! or a better fit at least, and if I got them home and he never wore them again, at least Sarah had some shoes that she could grow in to.

After this we needed food, so wondered off for a drink. We all sat together and then I said I wanted a few quick things from the supermarket, and Jono could stay with Grandma. The other two came with me and we took off only to find Jono racing towards us down the aisles moments later with Grandma in tow. Ok, so he wanted to stay with me, no problems, got some groceries and headed out. So far, we had taken around 3 hours to get this much done.

I wanted to stop in a ladieswear shop to spend a gift card I had received for my birthday but felt the day was moving on. Grandma insisted we stop and I take advantage of the opportunity, so I did. I found a few things I liked and the assistants put them in the change rooms for me, then I went in to try them on. Daniel and Sarah were playing games around the curtains and the entry. Next thing we all know Jono is in the change room next to me taking off his shirt and placing it neatly on a hanger and hanging it on the hook on the wall, then he puts on this lovely tan top with holes cut into the top, and parades around the shop in it.

Daniel and Sarah couldn't contain themselves.. their brother was trying on girls clothes!! After quite a few giggles and "too big Jono"ses he took the shirt off. I had decided on what I wanted by now, so I was in luck, but Jono hadn't yet though. He didn't want his own shirt back on, found a stripey singlet top and went and put that on. Followed by more giggles and more "too big"s he took it off put his own shirt back on and we headed off.

Today's highlight? Jono trying on girls clothes in the fitting room of a ladieswear shop. At least he knew to go to the fitting room... and even tidied up after himself, now just to work on that at home!

He's a Computer GEEENIUS!!

2009-01-13T08:19:00.000+10:00

Quoted from his brother Daniel.

This morning after the holidays and school holidays we are very much getting back into the mode of 'normal' routine and we were putting Daniel's iPod back onto his computer (after the earpieces had been borrowed for something else). Daniel had been storing his iPod and the charger for it in a board game that he had received as a birthday present for the holidays so he knew where it was easily.

We went to the boardgame and discovered Jono had found the game and set up the pieces and had been playing with it, and Daniel's iPod wasn't inside... so he started looking, on the floor, under the couch, move the furniture, lift the bean bag, shift the doonas, move the pillows... ok this is starting to get silly.

I was doing something else so I kept saying just give me a minute and I'll help you look, and he was getting frustrated. So I went over to help him look to no avail.

Just then Rob came in the room and asked what we were searching for, we told him and he said - oh it's over here on your computer Mum... and we looked, and so it was!

Jono has found it in the boardgame, taken the ipod and the charger to my computer, found a usb port, plugged the charger in, and put the iPod on it's dock so it could start charging. No... none of us have actually shown him this before he did it without any help. He 'IS' a computer genius!

I must be dreaming

2009-01-09T08:50:00.000+10:00

I think I'm a little worried about how we are all going to go with going back to school this year, there are a few changes, they all go up a grade, Sarah goes to grade 1 so is in to proper school rather than prep, Jono has one teacher the same from last year, which is great, and we don't know where Daniel's new class is yet.

I was talking to a friend of mine near a park with a bbq, and she was starting to prepare Dinner, I suggested the bbq would be better to use than the stove in her house so we took the food out and started to get organised.. then I noticed it was getting dark and asked her what the time was... she said it was 6:30, and day care closes at 6:00... Panic Stations!! So I took off to go get the kids, when I got in the car I realised her watch was fast and it was 5 before 6, so I still had time.

Then I noticed I wasn't wearing my work clothes, but casual clothes... so if I hadn't worked, the kids wouldn't be in day care... so where were they? I went to the school grounds and found Daniel and Sarah together, not worried, just hanging out, I asked if they knew where Jono was, and he was in the school grounds playing. I asked him where his bag was and he went and got it... and they were all ok... I asked what they had been doing all day and they said they'd been playing and been to the shops. They weren't phased or worried at all.

Then I woke up... what a vivid dream!
What can I glean from this? Don't Worry, they are happy and will watch out for each other...?
Maybe, and maybe I should carry this lesson with me :P

End of School Concert

2009-01-08T11:35:00.000+10:00

Yes I know its next year, but I have been wanting to write this up and just haven't sat down to do it.

At the end of the year is usually a time we measure things by, and reflect and look for growth or change, and nothing for us spoke as much as the end of school concert. Every year the special school holds a concert for all the kids to get up on stage and perform to songs, most of the time just actions. At the end of 2007 Jono didn't cope.. at all. For every practice they had, he would sit in the corner with his hands over his ears, screaming 'too loud, too loud' and crying. He was scared, he was overwhelmed, and not coping at all.

For the end of year 2008 concert, he has just grown soooo much, partly I would say due to his teacher during the year, partly due to him getting older and just being able to handle different situations better. For each practice they did, Jono participated, learned and tried his best to do what was being shown to him. He had a little solo part in one song, and he had 3 songs he did. After every practice his teachers came to me and said they were so proud of how he was doing and were really hoping he would be ok on the night.

Then... once we found out the night of the concert... we were already going out that night and had organised babysitting for the kids, Rob booked tickets months previously for a special event for my birthday... aaarrghghghghgh!!! He's doing so well and it looked like he couldn't go!

Fortunately Nanna was doing the babysitting and when I explained the situation to her she said that if it was important to him, she would see how the kids were on the night and attempt to take them... I thought she was either brave or insane.

So, I co-ordinated with his teacher that she would take Jono's changes of clothes for the night with her, Nanna would take my car for familiarity, and Rob and I would leave early and cross our fingers. We also discussed the concert for a few days in advance, that Nanna would take him, that Daniel and Sarah would be with him and that Daniel and Sarah would be the biggest helpers in the world on the night.

We didn't hear how he did until we got back, but he did brilliantly! Nanna took all three and he had no problems 'going for a drive' once they got there they found the hall easily, and walked in the door to have his teacher find them straight away, take Jono and say - let's go get ready... and he was off for his performances. He got changed for the first one, got up on stage and performed comfortably... he actually had a teacher behind him lifting his hands for the movements with the song, and after a while he kept on backswiping her to get away so he could do his thing... cheeky!

He did another 2 performances with one change of clothes with even a spotlight middle of the stage moment for a 'solo' dance. I think we've watched the video of the night around 5-6 times now and are just soooo proud. From last year where he couldn't even listen to the other people practicing, to being on stage, in 3 performances, doing a solo, and having a few changes of clothes... simply amazing!

We Merry you a Wishy Christmas

2008-12-30T06:32:00.000+10:00

What a great week we have just had. We went away for a week on holidays with the kids to a caravan park. I definitely had some stress and concern about how we would all cope, especially how Jono would do... or is that how we would do with Jono? Anyways, I spent the day before we left packing and cleaning and organizing pets and food so that they would survive while we were gone (many thanks mum who came and fed them for us), and on the day it still took around 3 hours of 'final' packing before we were ready to leave. When we finally got going it ended up being quite a short trip to get there, only 2 hours. I'm fairly sure we went for a swim pretty much straight away and ended up swimming every day.

The first real joy - Jono can swim! All by himself, he can co-ordinate his arms and legs together enough in a dog paddle-type thing to propel himself across the pool, even in deep water. I was free to have a swim by myself without a child holding on to me and without me being on 'guard' in case floaties fell off or someone got caught in a circumstance they weren't sure of. Wooooo!!!

We had the kids all in the one room on a 3 bunk bed. Jono claimed the middle bunk and managed to sleep in it for 3 nights, then started drawing in bed and ended up on the floor with his drawings, his pillow and doona for 2 nights, then back in the bunk. Last holidays we were on years ago we changed the kids beds each night, but this time we didn't bother and Jono wanted the middle bunk the whole time when we offered to change, which was fine as far as we were concerned.

He loves ocean swimming too, I had to be right near him when we went to the bay for a swim as there was a decent undercurrent. It was so great to see how much he enjoyed himself in it no fear, runs out to a wave, gets smashed by it and falls apart giggling, then heads out to the next wave.

On another day we went to a shopping centre (that was packed to the rafters with people) and it had a lot of outdoor fun things for kids to do, little rides, digging machines, a playground, a 'train' which we rode on but Jono was quite uncomfortable about, so Daddy stayed with him, and grandma, myself and the other two took off. When we got back Daddy had him jumping on a car track, and the other two got on with him. The cars on this track where ones that you sat 'on' the roof, and put your legs into the front seat area for the pedals, and the steering wheel was up at roof level with you. We were 'really' unsure how Jono would go, if he would even understand that you needed to put your foot down to make it go, let alone be able to steer. Luckily the track was circular, so it was easy to navigate, and also luckily the cars all had bumpers on them, coz Jono caused a traffic jam at one stage (giggling as the cars crashed into his) but he did really really well! He could steer, he figured out the pedals, and the assistant only had to help him once. Rob spent about an hour after wards saying he was hoping Jono would understand and was thrilled by how well he did.

And once last thing on understanding, Jono now understands money. He understands you need to use money to buy things and this just gives us such hope and joy for his future. The caravan park we stayed in had all the road as shared zones for cars, walkers and bikes. We took down with us a few scooters to be able to zip around, and all the kids enjoyed using these. They got the know their way around the park pretty quick and were comfortable with the surrounds - including Jono. One morning we were fixing up the training wheels on Sarah's Christmas present while her and Daniel were in the Kids Club (Jono didn't want to go in, so he stayed with us), we got quite involved with what we were doing and didn't quite notice where he was for a minute or two. After realizing he wasn't in the cabin I said to Rob I'd better go look for him and headed out the door.

I walked along the road our cabin was on and headed towards the front office and found Jono, on a scooter trying to ride it one handed, with something tucked into his shirt that he was holding with his other hand. I opened up his shirt and there was a can of drink. He had... all by himself... decided he was thirsty, found some money, gotten some transport, headed to the drink machine at the front office, put the money in, chose his drink, and headed back to us.

Wow!
It's been a very Merry Christmas time this year... some perhaps more merry than others with the sugar laden drinks their parents let them have because they can use money :P

Sea Shells by the Sea Shore

2008-12-14T06:52:00.000+10:00

Well... river bed at least.

Yesterday was Rob's work Christmas Party and it was held at a boat ramp with a kids park nearby and bbq facilities, they hired a marquee, and chairs and brought 'tonnnnnes' of food. Great day!

There were quite a few highlights, one for me was waterski-ing down the river (well laying down on a boogie board and holding the rope being dragged behind a boat) Rob went first and found it a little tricky, I saw what he did and tried a few other things, we both have really sore arms today but it was unbelievable fun!

For Jono, he found his fun within the first 4 minutes and 30 seconds. The river was so high from the recent summer storms that it actually came over the top of the embankment and into the kids playground area. 'Just' after we turned up a boat came past and the wash came up even higher... Jono 'somehow' noticed this and went towards it... the next thing we know the kids are saying Jono get out, and he's up to his neck in the river.

We brought swimmers, but no spare clothes, so he spends the rest of the day dropping into and out of the river at random, soaking wet and drying off by playing in the playground until Rob and I go on the boat for the waterski-ing... then we thought we may as well put him in his swimmers.
Daniel and Sarah came on the boat with us, and completely loved the crashing over the tops of the waves, Jono stayed in the river with one of the co-workers nearby and when we came back he was swimming a out into the river chasing ducks, yelling 'look' and pointing at them

So.. what's the deal with the Sea Shells?
For the lunch there was a great range of lovely salads, steaks, rissoles, chicken wings and sausages.. and of course prawns! After a while Jono noticed the prawns and picked one up.. I though he was going to eat it, he took and wandered off towards the river.. I still thought he was going to eat it.. next thing he throws it into the river. We thought he was seting them free... or something like that, he definatelty knew where they belonged. After a while I asked him what they where and he kept on saying Sea Shells.. I think the fish ended up with around 8 friends joining them yesterday.

Lucky Sea Shells :)

School's out... for... EVER!! Untill next year at least.

2008-12-13T05:12:00.000+10:00

It's the end of school, and this week has had some very slow starts, Jono still had his late night escapades and wakes late in the mornings. He's decided he doesn't really want breakfast most days, and as he usually gets up somewhere between 15 and 30 minutes before we have to leave I've decided not to force the issue.

The big exciting news is that next year he gets the same teacher, which I am so completely thrilled about, with her he has grown soooo much, and it also means school will be familiar when he goes back. He is however getting a new classroom, I mean like a 'new' classrooom, they are building it over the school holidays! His teacher has been chatting with him about when he comes back he will go to a new room and it will be 'there', and she points to a grassy area, he seems to get it.

Looking back on the year (as we often do when things come to an 'end'), he has just grown so unbeilably much. We started the year on the school bus and without a school unform... somehow they always seemed to end up over the fence in the neighbours yard, to go through to not coping with the bus at all, to riding in the car with Mummy and wearing the uniform, to taking the uniform in a bag and changing at school.

He's learned to write this year, and he actually wrote Merry Christmas all by himself on the little end of year take home bag that he made for his parents. His counting is outstandingly better, his interest in words has grown again, and he can read small books, and his comprehension of his family and friends is much better. If something happens that he thinks his siblings will want to know about, he will actually call their name and walk around the house looking for them.

He has started being socially friendly as well, he will regularly call out 'hello' to random people on the street (good and bad), and on the last day of school we walked in past his classmates and he waved at them... like he recognizes them for people he knows, and realises he should do something in welcome to them... amazing!

So we have 6 weeks of holidays, we have some time away, in a caravan park with Grandma, we have Christmas, we have parties, we have day care on the days where Mummy and Daddy still have to work (oh summer as a kid, they just don't know how good it is), we have renovations to move on with, and who knows... we may just find some time to wash the alien off the wall in the toilet... we may even get someone to help with that one :)

School Holidays.. Woo!

www.mcds.com.au

2008-12-10T21:19:00.000+10:00

Does this site exist? Highly doubtful, but I am sure we all know what it means. Advertising is so powerful, even a child with limited vocabulary and social interaction is not only aware of it but also capable of writing it... In permanent pen, on the kitchen clock. So the clock has a new look and we went to mcds for dinner the other night .com.au

Good Therapy

2008-11-02T08:50:00.000+10:00

I was talking with my husband the other day about how little I've posted here on the blog this year, and said I started the whole thing for a little 'self-'therapy', a way to have an outlet for myself about what I was going through and how I was coping.

With how little I've posted this year, it looks like this year I'm coping!

It's been a long walk so far, 5 years since finding out and time of grieving, loss of dreams, loss of ability to do 'stuff' normal families do, restricted outings, shortened outings, not sitting down when going out type outings... seeing family and friends has been hard, not because he's 'naughty' but because he's curious, and tactile and has to explore, and feel and touch.

He's older and he's better now, he seems to have grown out of a lot of it... and I think we are just better adjusted to the lifestyle. I think Daniel and Sarah are coping a lot better now as well. They both offer to help him with different things and look out for him more.

A few weeks back we were in the city at a park, and Sarah was holding his hand as they walked along, directing him and watching over him. Just a few days ago we went to a local park, and the three of them took turns on the flying fox, Daniel kind of took charge and said whose turn it was next and made sure it was fair.

Yeah.. I think we've all grown this year, why 5 years to get to this stage? No cotton picking idea, but I'm very glad we've reached it :)

It's Art Week!

2008-10-31T00:37:00.000+10:00

Well, that may be what Jono is thinking at least.

This week so far we have lost 2 bottles of shampoo and one of conditioner down the sink, a can of shave foam, a can of hairspray, 2 bottles of nailpolish (all over the polished timber floorboards) and had a dozen balloons blown up filled with water and thrown outside... unfortunately one came inside and went down the stairs causing a rather large puddle at the bottom - fortunately not near anything electrical.

So, I've given him a few exercise books and some textas and he's doing some amazing drawings, spaceships and planets and night sky and all that kind of thing... then he found one of his brothers paint sets.

Now behind the toilet door is a large picture on the wall, that takes up around half the wall is a painting of a 3 eyed alien, with hands and feet, and a moon crescent behind it.. it really looks amazing, and yes I took photos.... the funny thing is just last week I commented to my husband.. I'm going to get a large bucket of water and some gumption and clean 'all' the walls in the house soon, before I have to get to repainting... looks like I just may need to repaint sooner rather than later.

Its 'almost' Christmas

2008-10-23T19:25:00.000+10:00

Well.. getting close enough now anyways.
We've had a truly amazing year so far. After my last entry I got a 'job' painting Rob's work office building - 2 storys, just the inside. After 4 months of doing that it was time to start lokking for work, so I did up my resume, sent it out, got a phone call 20 minutes later, went to an interview 2 hours after that and started work the next day.

The great thing has been with this company I'm getting to do Graphic Design, which I am confident about, and I get to work school hours only. If I am running a little late due to 'stresses' they aren't concerned, and I have flexibility.. in fact last Friday morning I found out it was a student free day the following Monday, and they were great in giving me the time off to be able to take care of the kids (late notice to find someone).

So anyways, Jono this year.. is going great, his teacher is bringing him so much out of himself, he knows all the family by name and will call out for us... tonight a show came on that he knows his brother likes, so he sat calling out over and over.. Daniel, Daniel... Daniel was already busy watching the show that Jono had just abandoned (2 tvs = good and bad),

We've also had Jono in respite house this year, he goes from Friday arvo to Sunday arvo.. the first one, we took some time for Mummy and Daddy, the second weekend we took the other two out.. movies, dreamworld, iceskating, the things Jono doesn't cope quite so well with... and he went swiming and shopping and such.

We are also currently renovating, which means we've had bedroom walls pulled down in our room and proper ones up to the cieling in the cathedral ceiling area.. he's gotten into all kinds of mischief and I think I'll need to do a full house 'sweep' to see the things he's found and where he's put them.

All in good time, along with painting the walls of the reno's, clearing out the garden for summer, planning the outdoor landscaping, having bbq's and 'stuff'... there's always things to do :)

Back to School

2008-02-12T10:34:00.000+10:00

Its been an interesting start to school this year.

Sarah's first year, and she is thrilled to pieces, Daniel's in grade 4 and 'over' school. Jono in grade 2 at special school, and it's a little different - classes, teachers etc, but still the same - same bus, same drivers, same assembly to start the school day.

In his first week - 2 days were great, then 2 days of tears... we 'think' he may have been tired. His second week was more settled, and this week he's going great.

The extra special thing about this year, he is actually looking at me when the bus pulls out, instead of in the air or at the trees. I've been able to wave goodbye and blow him kisses, and he gives me eye contact, and even blew a kiss back and waved.

I tell you, warm fuzzies all over the first day he did that :)

Today is his swimming day at school, and I got him to tell him, he gave me eye contact and listened well, and I told him - Today Swimming day, at School. So he reached out and gave me the biggest hug. I really wasn't expecting that kind of reaction, but I think it was his way of saying thank you.

He's an awesome boy.

We are normal!!

2008-02-12T09:56:00.000+10:00

Ok, odd title, especially as I haven't written for a while - life, school holidays (3 kids at home for 6 weeks *pulls hair out*), etc.

I've had a few people at our house after the kids have gotten back to school, and they have commented on the general lack or order that is going on.

Our house is currently fairly trashed, I was sweeping up every day, some days multiple times when the kids were home, depending on how many things got thrown on the floor. It may have been food that felt wrong in the mouth, milk that looks good when you pour it on the floor, a hand cream that makes a great paste to write on the walls with, a glass cup that makes such a great noise when you smash it, that its worthwhile to grab another one and smash it before mum catches you.

After the kids have gotten back to school I've made myself a task set of things to get in order, but I'm tackling one at a time, with no time pressure, I'm expecting to take 1 term to get it back in order. The kitchen is generally clean, and hygienic, though the dishes may sit for a day before they get washed the floor is generally tidy enough to have some room to walk on, but some rooms are just 'ewwww', but I refuse to stress about them.

I tackled Jono's room, and gathered the 'things' in his bed, then realized it was taking such a long time to pick up the pieces of lego, puzzles, toys, broken chalk and textas in his bed that it would be easier to simply sweep his bed clean. As I was doing that I thought to my self - yes, you know you are a mother of an Autistic child when you are actually sweeping their bed to clean it. I got a lot of toys and books away, tidied the floor, remade the bed, and said - that will do.

When a child takes 20 minuted to make 2 hours of cleaning, and if you have a shower you know you'll need to come out and get the broom for the next mess, coz your back was turned you reach a point where the mess in and of itself gets ignored, and left for a day when it gets tackled wholesale.

Currently, he has also drawn on his bed, and on his bedroom walls with textas... I'll clean it off, later.

So.. why are we normal?
I saw an article in a magazine by a family with 6 autistic kids, and the biggest thing that got me besides the fact they get glared at in public, run after children with no sense of boundaries, who can't sit still to eat, eat of strangers tables, hum and scream for no apparent reason, and bolt for the door if daddy isn't looking, all of which I all related to and have experienced personally.. but a picture of one of the kids bedrooms. They have no sheets on their bed, the walls where covered in scribbles, paint stripped away in patches, no curtains, and chains and locks on cupboards and doors around the house.

This is me.
I face this daily, and people have no idea, this picture was me, my family, and the things we face, but in an exaggerated fashion to where we are at currently, having only 1 child with autism.

I admire this family greatly, the simple fact they are still married with everything they have going on speaks volumes about their strength of character.

Anyways here's some links to them and their stories.. and I think I'll be buying a few of their t-shirts :)

http://www.deseretnews.com/dn/view/0,1249,660226195,00.html - scroll through the pictures on the right.

http://www.autismbites.com/index.html - their home site.

I am the Beanbag KING!!

2007-08-23T13:05:00.000+10:00

Well, the other night I took my oldest to Iceskating (which I get on the ice with him) and my hubby decided to read some of Harry Potter Book 7, which we have both enjoyed. We put Sarah and Jono to bed before we leave, about 7:30pm and Sarah's head touches the pillow and she's gone (as usual) but Jono settles into his prancing before sleep routine.

I get back around 9pm, and get Daniel to get ready for bed and check on Jono... I asked Rob if he had checked on him lately and Rob said not for about 20 minutes... and as I had just looked in his room, I asked him to come and check with me.

Jono has a bean bag in his room, its the standard shaped one, he's used it as a blanket, slept on it, read on it, and just basically enjoyed it. Tonight, there are beans aaaaalllllllll over the floor in his room, the beanbag is not actually empty tho, it still had at least 3/4 of the beans in it... and a child.

Jono had somehow opened the zipper, climbed in, somehow managed to close the zipper behind him and was standing upright inside the bag... still with lots of beans in it. He thought this was quite hilarious and was full of giggles... we thought he could choke or suffocate. We tipped him upside down, unzipped the bag and put a sweaty boy into the shower. We swept up as best we could, then took the beanbag out of his room. It hasn't gone back in.

The concept of danger seems to be so limited at times and I don't know if its purely a developmental thing or an Autistic thing. It was quite amusing to see a child standing INSIDE a beanbag giggling to himself... and no I didn't take pictures of that one as we were more concerned for his safety, though looking back it would have been funny too :)

As early as 3 months...

2007-07-31T12:46:00.000+10:00

I've been reading a lot of forums from other families with autistic kids lately and a common thing is the 18 month old needles... that their kids were bright, blooming and blossoming, learning to talk, socially interacting, some even have video of it, before the needles and then afterwards, they are... not. (I even remember Jono waving goodbye to people of his own accord at 10 months.. I also remember at 14 months seeing he was 'different')

Now I've been firm in my individual belief that it's genetic, whether the needles accelerate the traits or not.. I don't know; but the other night I was astounded. We were as a family sitting and watching some videos of the kids - it started as me and Sarah watching a bit of Mummy and Daddy's wedding, and then we all came to watch.

In amongst the videos was some footage of Jono at 3 months old in a bouncer, I'm clicking my fingers and calling his name and trying to get him to respond so I can film him - as all parents do with kids that age I am sure :)... and there is a moment, just before he caught the camera and smiled the biggest cheesiest grin.

This moment, and it's really brief, is of him looking from the corner of his eyes. He does it a lot these days, it's as though he is looking at you safely.. if he doesn't look at you or the object directly, then you don't know he is looking at you, and he can decide if it's safe/he wants to get involved... and he still takes everything in.

So I see this moment, of his corner looking at the camera, then he lets out this big grin... at the age of 3 MONTHS! Corner looking (for want of another term) from that age! I didn't notice it before, and sometimes you only see things in hindsight, but this helps me so much with the idea that the 18 month needles had something to do with it.. because from this, I really don't think they do and it helps me to be settled in the idea that it's genetic... and it really is completely beyond my control.

Christmas in July

2007-07-31T12:40:00.000+10:00

The other night, we were in the kitchen and the kids we either with us or in the computer room, Jono was on the computer he prefers and just playing some game.. and we heard singing, a high clear voice in perfect tune, and clear pronunciation of every word... "Jingle Bells Jingle Bells, Jingle all the way, and then it turned to mumbling... but still in tune, coz he didn't know the next words.

We walked in and saw him still singing, but gosh darn it, no matter what we tried we couldn't get him to do it again. This is the new record for the longest amount of words he can string together.. and it was crystal clear, it was Christmas for us in many ways that day :)

Amazing outing

2007-07-21T18:34:00.000+10:00

Like, pick my jaw up off the floor kind of amazing.

I took Jono and Sarah to the shops today.. I usually don't like going on a Saturday at all because of how busy it gets, and usually try and take only one of the kids.. so today I had two. Usually as well when we take Jono we 'lock' him in the seat on the trolley so we aren't chasing him down aisles and wondering where the heck he is the minute we turn our back.

Today, he sat in the seat for a few minutes, then decided he wanted to get out... I already had the fruit and wasn't planning a big shop so thought, ok... we'll walk and if it's causing too much stress, we can leave.. with or without paying for them, I can always come back later if need be.

He got out, and was simply amazing.. he walked near me (around 3 steps away) almost the entire time, and on the odd occasion where he went further away, he came back immediately when I called for him. Sarah was being a good lookout as well. He picked up a few extra things he wanted to have, and amazingly they were all gluten free.. but things I usually don't buy... so we got some different things this week.

The thing that amazed me.. is ... he walked. He didn't run, he didn't scream, he didn't check over his shoulder with a cheeky grin to see if I was chasing him, he just walked... happily and obediently. It was wonderful! I'm so encouraged by his behaviour and feel a lot more confident to do more with him :)

The other wonderful thing was as we left and went to the car, a lady followed us the whole way.. and I was with the: "this way, stop and wait, hold hands, watch for cars, stay close.. etc". And when we got to the car she said, " I want to congratulate you on the way you talk to your children." That was a really nice touch to a wonderful outing :)

Transitioning is hard

2007-07-04T12:16:00.000+10:00

Well, I'm at the point I'm actually labeling some of Jono's behaviors with Autistic terms. Is this another level of acceptance? Who knows.. it's just where we are at.

Yesterday on school holidays, we went out to a local park, Jono had trouble sitting in the car seat properly and preferred to be on the floor (as he had the other day). He's been horribly sick, with a vomiting flu thing and its really sapped him, and has seemed to cause some regression - he went through two days of no talking at all, and even now his babbling isn't as bright and cheery as normal.

So anyway, yesterday we went to the park, and then we wanted to go to the shops to buy something for Daniel, I spoke to Daniel about the chance we wouldn't get it today, depending on whether Jono could sit in his chair or not... How does an 8 year old take that you may ask? Well... it was difficult for him to understand he may miss out because Jono was having a 'moment'... but after he understood that I would not drive for 15 minutes to the shop we needed to go to because Jonothan's safety was more important, he seemed to be ok.

We got back in the car after the park, and I swapped their seats putting Jono directly behind me.. again he couldn't sit in his chair, he wanted to be on the floor. So I put the seatbelt across him the best I could and thought - perhaps I could bribe him, and we drove the few hundred meters to the petrol station and I got everyone an Iceblock. That worked! He sat up for that. So we had 1 boy ok with driving and in his chair properly, and one boy who was happy because we could now go to the shops. So off we went.

At the shops we got a game for Daniel, and some stuff at the chemist, then got back in the car... I bought everyone some drinks on the way out so Jono would 'have' to sit up again and he traveled fine. We got home and started baths, the idea was to have Jono in the shower while the game got installed so that the computers weren't doing something that was too odd. I got Sarah in the bath, and was upstairs when I heard Jono crying and wailing, genuinely distraught.. I came back to see he had picked up the game case and opened it, and I could not see the CD... so.. I start thinking - oh great he's tossed it somewhere, and start searching the front yard, the lounge, the stairs, the back yard.. to no avail. In the meantime Daniel is getting distressed coz the cd is gone, and Sarah is needing to get out of the bath to go to the toilet (never rains!)

So I sort Sarah, help Jono to calm, and then ring the shop... and they messed up, the disc is still there... let me express how I now feel in syllables... GRRRAAAGGGHHHHHH!!!

So, I explain to Daniel that it will have to be tomorrow, the shops close in an hour and I don't think Jono will make another trip today... and Daniel is in tears. I get Sarah through the bath.. and it's half an hour before the shops close.. so I thought.. let's try. I ask Jono if he wants to go for a drive, and he said yes... so we pack up again and head off.

The drive there was fine although busy, they gave us some money back as an apology, and were nice about it... then Jono wanted to stay in the shop, I explained it was time to go.. but he just couldn't. So I drag a screaming boy out of the shops to the car.. in the car he couldn't sit again... I coerced him, and even smacked him a few times to get him to his chair... he ended up standing at the front of his seat and I got the seatbelt on, but he just couldn't sit down. So I got some chips from a drive through and headed off... the 20 min home with a screaming, overwhelmed, scared boy clinging on to my head rest for any comfort he could obtain from holding something familiar was not the most pleasant trip of my life.

The choices are hard some days... I can't hold my other kids back from things they enjoy because one is having a hard day, but we all need to be compassionate and give room where its needed.

And after everything, he slept very well that night.

So sad, I want to pat the fish

2007-06-19T15:13:00.000+10:00

At School they have a little fish tank with a goldfish in it. This morning they told me how the kids have all done really well with it, they take turns feeding it, and they have all gotten past the stage of trying to get the fish out of the tank to hold/look at it.

This afternoon... I turned up to a boy in angst and tears, they said he was upset coz he wasn't allowed to have the fish. He couldn't cope with leaving so we tried to forcibly carry him to the car, he dropped to the ground and lay on the path for a while, then we did pick him up and carry him. We got him to the car but then he couldn't sit in the seat.

After about 3-4 minutes with him collapsed on the floor wringing his fingers and mine, and completely unable to listen, I dragged a seatbelt across him as best I could and went for home. After all it's only 700metres from school.

We got home and he couldn't get out of the car, so I had to forcibly carry him again, though he didn't struggle quite so badly this time. After getting in the gate he wandered around the yard with his hands over his ears for a few moments, then came to the gate and cried "Open, open, open." He really really wanted the fish.

I got him upstairs and into the shower for a bit of relax and desensitize. He's stopped crying, and seems a bit calmer.. I'll see how he is after I get him out, I'm sure he'll be ok in a bit of time, it's just heart-wrenching when he's so upset and there really is not a thing I can do.

This is the biggest meltdown he's had all year, he is tired, he did eat wrong foods on the weekend with the Birthday party he went to, but this is the first time in 6 months where he's lost it so completely. Poor boy, if only he could express what it is that is causing the pain, we could do more about it.

Those Special Moments

2007-06-13T20:09:00.000+10:00

Last night Jonathan was very tired after Movieworld, and a little earlier than usual bedtime he grabbed daddy's hand and dragged him off upstairs... I wasn't sure what they were doing but Jono wanted him and Daddy was happy to go. I went up a few minutes later getting the other 2 ready for bed, and Jono and Daddy were both in Jono's bed snugging together. Not quite sure why, but Jono decided Daddy was to tuck him in.. it was very sweet.

Today Sarah and I were out driving, and she pipes up, "You know what I like about you Mummy?". I said "What?" She said, "When you tickle Jono". I asked "Why is that?", her response... "Coz it makes me happy". I love our kids.

I also wanted to share this with everyone, take a moment to check out these clips, and the comments... bring some tissues.

http://www.whatkindofworlddoyouwant.com/videos/view/id/213154

Movieworld!

2007-06-12T14:12:00.000+10:00

Well there was a long weekend and we haven't gone away or done anything major as a family since Cairns... which was September, so we decided to take advantage of the extra day off and go to Movieworld.

It was a fantastic day out, and everyone really enjoyed themselves.

We started the day with Daniel and Daddy on the Spooky Rollercoaster, this may not have been the greatest idea, Daniel got off in absolute tears he was sooo scared by it all. While waiting Jono, Sarah and I played around on an old horse drawn cart, I sat up the front and Jono just wanted to sit on my legs, in the sun, and hold my hand... it was lovely.

The next ride was the wild west one.. all in a boat river ride, through some dark areas, some sections were backwards, and the end of it a long slide down into water... all 3 kids were crying on this one. During the ride Jono got very scared and wanted to get out, but he let me keep him in, and then put his head down on the bar in front and just screamed and cried. When it ended he was desperate to get off, and after we hit land he collapsed in a pile of tears on the ground... not angry, just... well.. terrified.

We stopped for a snack and gave everyone a chance to calm down then went to the kiddie rides. Sarah and Daniel were thrilled and I went with them on a ride, but Jono didn't like the idea at all.. he watched a slow, level train do it laps for a while, then we had Daniel and Sarah queue up for it. Once they got off, and seemed to be happy about the ride.. Jono was queuing at the gate.

He had a go on that, then a pirate ship style ride.. 3 times, then we went to see a show. We came back to the kiddie area, and Daniel had a go with Sarah and Daddy on the Rollercoaster. Daniel and I went to Lethal Weapon earlier, and I told him 'When you are scared, really scream loud and chase the fear away'... but we couldn't go on it coz he's not quite tall enough yet. So when he was on the kiddie coaster he remembered this and screamed his heart out... and LOVED it, he came off with such joy and wanted to go again. Sarah, was in another pile of tears, it was too scary for her.

After that I took Jono and Sarah on the train again and the pirate ship.. I let them ride by themselves on the ship, and Jono was a bit scared at first, but I made sure he could see me and he handled himself really well.

The last thing of the day was the Shrek show, Jono couldn't handle going in there.. and he did that very clearly every time something like that freaked him out, he just grabbed me or Daddy's hand and forcibly pushed in the other direction.. not desperate, just determined. So Jono and I went shopping on the main street while the others saw the show.

An amazing day, everyone really enjoyed themselves and we came home exhausted... school the next day was a bit of a challenge, mainly getting people out of bed. I think we may get a season pass for there for Christmas and go a few times, so we can go when it's not such a big day and take the time that suits us :)

School is a great success

2007-06-12T14:04:00.000+10:00

Choosing for Jono to go to Special School was definitely something difficult, but it has well and truly paid off. We are still waiting for words to bloom, but he makes his intentions known better than before, and is picking up body language a little better.

He really enjoys himself there and has made a few friends... or at least he has peers who know his world. We've had one of the boys over for a play day with his Mum and Dad, Jono and his classmate didn't really play together very much, but it was great for us to see another child in similar circumstance and be able to speak to parents who understand.

We have been invited to a birthday party with one of the other boys this wekend, and that is something special as well.

I've had a couple of clashes with his teacher, but we've spoken about it more in depth and have a common ground now. She'll make a quick statement about a behavior that she sees as important to work on for his capacity for acceptance and social comprehension for both him and other people... I take it personally, thinking.. you're the teacher... teach.. but after talking it through I see where she is coming from and how we can work on it at home. It really is a 2 part process, if we are all walking on common ground it makes a difference.

School Dramas

2007-04-12T19:44:00.000+10:00

So, 2 weeks before the end of School last year, the special education unit asks me to come in to discuss what will work best with the funding and teachers they have for Jonathan for Grade 1.

They explain that the government supplies 1 teacher aide for 5 hours per week for each child with special needs. If they apply for more hours they can get an extra 2... or something like that. So out of 5 school days Jono was able to receive 1 day of support.

Then we discussed Jono arriving at school a little later, and they said that he would be able to stay up until first lunch... so around 2 hours a day.

Frustration is a good word for how I felt about this.
I then went to the Special School across the road and talked to them, they said that their would definitely be a spot for Jono if he was eligible, but to be eligible he needed to be Intellectually Impaired. 'Great - another label' was my thoughts.

Back to the school guidance officer, and they said the process to get a child who is untestable qualified for special school takes about 2 months. and as school is ending in 2 weeks, its unlikely they will be able to sort this before next year.

Next stop, our paediatrician, and an assessment from them with a letter recommending them to go to the special school.

After that, back to the guidance officer who calls in their supervisor and talks to the principal of the special school.

Then we arrange an appointment with all parties to see Jono in his class environment and how he interacts with other children and his capacity for mainstream school.

Say it with me.... Tearing my hair out!!!!
So, in this narrow timeframe, there was a heck of a lot to organise, and I just wanted to know where he could go and where was best for him, and I didn't want to label him as I didn't know what adverse effects that label may have for his future endeavors, as well as the stigma it may carry. There where a lot of tears and trials in getting this organised.

Then, on the second last day of school we met with the area supervisor. When she came her first question was... where do the parents want him to go? The absolute relief of dealing with someone who was willing to work with us on what's best for our child was just... so hard to put into words.

There were many tears along the way, feelings of inadequacy, and just the short time span. But we got it organized, he is in Special School now, and thriving. The teachers are great, if he's 30 min late because he didn't want to wear his shirt this morning and took some extra time to resolve it... they don't mind. If its swimming day and putting shoes on when you wear swimmers doesn't make sense... that's ok.

It's just freedom, and a chance for him to grow and learn at the pace he is able.

So, on our holiday

2007-04-12T19:34:00.000+10:00

Which was a while ago now >.< Life gets busy :)

We drove the 1700km's to Cairns with all three kids in the car, and it was fun, we took 3 days up and 2 days back and stayed in hotels. It really was an adventure, we are just lucky that our kids enjoy traveling I think.

We stayed with Grandpa for about 8 days, all the kids piled in with us, and we drove each other nuts. Jonathan's lack of concern for special things was a minor stress to Grandpa, and the lack of things for the kids to do at his house was a minor stress to us. We did go out a lot, but Sarah still needed a daytime nap, so it took a bit of organization. I'm glad we drove up because then we had a car to drive around as we wanted.

We took all the kids to Kuranda, and decided to drive up as we thought they would cope better. On the way back Sarah and I rode the Skyrail, while Daddy took the boys on an army duck. Jono spent the entire trip with his hands over his ears for the noise, but seemed to enjoy himself.

We visited the Butterfly farm, and all the kids really enjoyed it, Jono was just prancing up and down the paths, while Daniel had a butterfly attach it self to his shirt for the entire tour. Then we also visited the Bird Sanctuary with these amazing Macaws that you could hand feed near the froont... these really grabbed Jono's attention, and he constantly wanted to feed them, even when they lost interest. It really was a wonderful time.

We visited quite a few play spaces while we were there, and the local Golden Arches saw us a bit. Once we moved into caravan parks we spent a lot of time in their playground and pool, as well as just chilling in front of the TV with the lego's. It really was just a great time away from home. We were also very glad to get back home at the end of it and have a little more space and 'routine'.

Well... we got busy...

2007-02-20T20:10:00.000+10:00

We went away to Cairns (the top end of Australia) for a holiday in September, and I had no Internet access... so the blog got put on hold :)

We had a great 3 wks, Jono was very forthcoming to people in the swimming pool, and jumped wholeheartedly onto complete strangers backs, fortunately they were very relaxed up there and it didn't cause issues. There was also a moment where some kids were running races and tried to get Jono to join in, I explained he was Autistic and didn't understand but thanked them for trying to include him, two minutes later they were getting him to do high fives with them.

Sarah and Daniel also enjoyed being away from home, and loved Grandpa's dog. We all had a really good time, and I think Jono only melted down once or twice. We drove the whole way there and back 1700km's, with the three kids, and they all coped really well... Rob and I were quite amazed.

Towards the end of the year, Jono plateaued, he didn't really progress in speech or school, and I think he knew school was finishing as he got more difficult to direct. The last two weeks of school, I had lots of concerns and dramas about where he should go for this year, as I wanted him in special school, and he had to be intellectually impaired to be able to go. More 'labels', stress, choices, decisions, questions... it was hard, but we got through it, and he is now in Grade one at special school.. and he is doing wonderfully! More on that later.

We also had an very interesting summer holiday, it was too long and not long enough, but we all did very well... and more on that later too. Nice to start blogging again, he is my special man, and life is busy, but good :)

Strange Hurts

2006-09-19T15:13:00.000+10:00

Last Sunday at Church, he needed to go to the toilet before church started. Nothing unusual in this, he knows where the toilets are, he can toilet himself quite well now... so off he goes.

A few minutes later the cries of frustration start ringing out... so I head in to see whats wrong. He's standing at the bowl, but nothing is coming out... I'm not sure if he has allready done anything, but he is very distressed.

I went and got hubby to see if he could encourage him to go... a few minutes later I head back and nothing has still happened, and he is still standing there frustrated. Daddy has to do some things, so he heads out.

30 minutes later of sitting on the toilet floor next to my distressed crying son, I am thinking to myself... why do I bother going out, why bother trying to get to church, if I spend the time in the toilet there is no point in coming... WHY is my son Autistic?!?!?

There are moments of clarity I get about our situation. I've heard Autism called 'and invisible disability'... and they are right... I can't 'see' anything wrong with this child... yet there is so much 'wrong'. The brain synapses don't connect in the usual fashion, the world around him is a foreign and sometimes scary place, seemingly simple things can get out of control easily. Yet it is no-one's 'fault' not his, not ours.

It just is.

And yet, it is not the sole controlling factor of our lives... and I should not let it be in that place, even if on some days it seems as though it is.

Birthday Jumping Castle (sisters)

2006-09-19T15:03:00.000+10:00

Well... his sister turned 4, and we finally had the Jumping Castle Party we have been talking about for 6 months.

*Note: Jumping, outdoors, trampolines, all these kind of things he just LOVES*

When the castle turned up, Daniel and Sarah where fascinated, watched every second, where almost on the castle before it finished inflating, and squealing with joy about every small thing that happened while the pump was going.

Jonathan looked at it and cried.

Then he squirmed to get out of Daddy's arms, ran inside and closed every door possible between him and that 'thing'.

We let him calm down, then I took him out and forced him on and made him do a few jumps (squirming and crying the whole way.) I let him go and he hightailed it indoors again, closing all the doors on the way... so I took him up for a bath.

After some water play and calming down, Daddy took him on... and then we couldn't get him off.

New things are scary for most of us... and the fear can often overtake to the point of the irrational (he's never closed so many doors in such quick succession) but I'm very proud of him for facing it, overcoming it and loving it... we are thinking of getting him one for his party next year now :)

Sleeptime Troubles

2006-09-01T23:21:00.000+10:00

I don't know how many of you have troubles with getting your kids to get to sleep in the evenings.

As far as I know, most Autistic people either go to bed really late, or get up in the middle of the night and do stuff - just restlessness... I'm not quite sure why.

Jono used to have dance parties in his room from around 1am to 3am, in the house we are in now we have wooden floorboards.. so that makes things very interesting of itself... we also put a lock on the outside of his door, for safety. If he was up at 3, and went into the kitchen and accidentally put the stove or oven on, our house wouldn't burn down.

Anyways... he's grown out of the dance parties now, and just has trouble getting to sleep, most nights he doesn't crash till around 10pm or so, even tho he gets put in bed 7:30 ish. He's usually up around 7:30 am... so I really don't know how he is coping on so little sleep for his age.

Tonight, he got put in bed at the usual time... I checked on all the kids about 20 min later and both his brother and sister were snoring, but he was still pacing in his room. My hubby and I settled in to watch a movie, and when the movie finished I went up to check on the kids. Jono was not in his bed.. nor in his room... this was very unusual, so I started searching.

I didn't have to look far.. his brother was on a mattress on the floor tonight, and I found Jono on his brothers bed... and as his brother and sister share a room it was very sweet to see all 3 in the one room... awwwwww shucks :)
Now just to get him to actually get to sleep a little earlier ;)

Thanks to the inquiring public

2006-08-23T15:36:00.000+10:00

How can you explain to people what things you deal with, and what things your child goes through.. when they look like there is no issue at all? How thick should your skin become? Things I have been pondering the past few days.

On the weekend, his older brother had an Akido demonstration, (Japanese martial arts) we turned up early, for him to rehearse, stayed for everyone's presentation, and for the medals at the end... around 4 hours all together.

After 1 and 1/2 hours he got very overwhelmed, cranky and lost it... started crying, so daddy took him outside for a bit. He calmed down and came back in and was ok. After another 20-30 min I wanted him to sit next to me for some food. A lady was sitting to the left of him, and had her shoes off and on the floor next to her. Jono was a bit distressed and fidgety, and kept bumping this ladies shoes. After a few bumps, instead of moving to the left, or picking up her shoes and moving them, she protectively covered her shoes and glared at me... /sigh

Then yesterday I wanted to get some sandpaper from Bunnings, so after picking him up from school, we drove through Macca's to get chips. This was an issue.... we don't go Macca's very much, and when we do we usually stop and play. So he broke into tears, and started panicking - 'this one, this way, turn, play '... and so on. He calmed a little so I decided to brave Bunnings, and thought he could go in the playground there. He was very very sad when we stopped, and didn't want to get out of the car. I got him out after a few minutes, and he didnt want to walk along. I got him into the store (still crying and panicing... but I thought I only want one thing, we'll be quick) I took him to the playground to give him a chance to play... but by now he had no interest. Then we found the water fountains... and they has rocks around them - this provided much joy for quite a few minutes.

After he had calmed right down I thought he would be ready to move on, and tried to get going. but he just couldn't cope... the routine had been broken and he was just too out of sorts... so I decided that the stress on him (and me) was not worth it and went to the car. As we loaded up a man came past and made a comment about Jono being tired... I said 'No, he's autistic, and this is out of routine and he's not coping'.

He was literally screaming the store down, people were looking at us, and I'm sure more than one thought 'what a bad mother'. Ahhh just one of those days.

Pack up Time

2006-08-23T15:30:00.000+10:00

He has recently (for about a week now) taken a great liking to this phrase. He uses it a LOT, at some times it seems reasonable for the use.. at other times, just plain out of sorts.. I'm not sure if he just likes the sound of the words, or has a hidden meaning to them.

I took a video of him the other day in this mode, he is doing pacing on a trail in the front yard, while his brother and sister play in the background... he gets distracted by our cat 'Abby', at the end.

http://www.youtube.com/watch?v=CnJSUAsw36I

Come into my world

2006-08-11T18:43:00.000+10:00

Today I took the boys to a playground near Jonathan's school, and it has a fantastic flying fox in it... I can vouch for it being fantastic as it can handle adults :)

So Daniel took first turn, and had about 4 goes, then I said it was Mummy's turn, so I had a few goes then called Jonathan over saying it was his turn. He had a few goes, then I said it was Daniel's turn again - so Jonathan, in sensory mode, goes to the middle of the path and waits for the flying fox to come careering at him so he can then fall down in a pile of jelly as soon as it touches him.

He loves doing this, if we have marbles or a powered toy car, he will go to the end of the hall and lay with his head on the floor waiting for you to throw it directly at him, giggling madly as he gets out of the way at the last minute.

So.. after Daniel had a few more turns, I said it was Jono's turn again, and Danile said that it was his turn to stand in the middle and wait for the flying fox to come at him and he would fall down. Jono loved this. Not only was his big brother sharing, but he was doing what Jono likes to do.

After a while they they went to the helicopter (that you climb into and have to pedal to make it turn), they couldn't get it working at first even though both had a go. Then Jono went elsewhere and Daniel managed to get it going... so he Called to Jono "Come, come"... Jono wasn't ready just yet and kept saying "No!". A little while longer and Jono did go to his brother, and climb all over the helicopter, when he was slipping Daniel held him and helped him up on top, then made the copter turn in circles with his brother sitting on top of it.

It was very special to see them really enjoying each other's company (tho they usually do) and more so that they were taking turns, and Daniel helping Jono, and being involved in the things that he likes, even if they do seem a little strange.

Its a really, really, really small world

2006-08-04T19:03:00.000+10:00

I started this blog with the thought of getting some more people I could talk to who perhaps understood some of what I was facing and going through with having a special boy... and to give me an outlet to be able to talk about what I feel.

Since starting this I have found people near me in physical location, as well as people I have known for a while in different places. I play an on-line computer game, which is fantasty based, and have been a pink-haired gnome for a while in one of the locations, 2 of the players in that location, while across the world, also have kids who have either asperger's or autism.

I have also had a friend at church who has a friend who has a child who is autistic get in touch with me this last week, and her little girl is a year older than Jonathan, but she 'knows'where I am coming from about stuff. I have also started doing step classes at the gym, and just found out that the trainer there has a boy who has aspergers, who is 11 years old... and who's name is also Jonathan.

Then... one of his teacher's aides at school has a son who has aspergers, and he is 18... and one of my long-term friends has a boy who is great friends with our older boy who is starting down the diagnosis trial for apergers. I truly am amazed at just how many people there are around me who actually have some understanding of where I am at, and that we can be a support for each other.

The most encouraging story for me out of these recent people is Jono's teacher aide. She was telling me things she does to help her boy to be able to calmly and appropriately behave and interact, and counting seemed to help a lot, and she counts with Jono... eg, Sit on the mat ...1 ... Cross your legs ... 2 ... and rarely does she need to go to 3, but 3 is him getting taken outside and missing out on the class activity.

But anyway... her son, who is 18, at Jono's age was also pretty much completely non-verbal, just like Jono and had did lots of rocking, where Jono is more a pacer and a flapper... is now a university student doing a double degree in IT and secondary teaching, then he plans to do a degree in Law. May I just say... WOW!! What a great hope and vision for Jono's possible future.

I am also a little stunned by all these people at this particular time of my life, but I am sure it is because I am ready. I have grieved, I have turned to chocolate for comfort (and gained 20kg's), I have gone through disbelief, shock, anger, denial, guilt and so on... and on some days those feelings can come back, but for the most part, I am moving forward, I am gaining confidence about Jono's abilities, and realising more and more a lot of it is really not in my hands anyway. One day at a time, being grateful for what I have.

School Excursion

2006-08-04T18:31:00.000+10:00

Well, we had our first school excursion this week, a walk to the local shops approx 500meteres from the school, to talk to the shopkeepers and see how to pay for things and stuff like that. The school asked for parent volunteers, and after explaining to the teacher that "Literally, Jonathan's life will be in the hands of whoever walks with him," I was put in his group.

Unfortunately, due to the lack of routine about the excursion, it was difficult for him to understand what was going on. Usually, I drop him to school, and then he doesn't see me again till the middle of the day when it time to go home or go to Special Ed Classes. On the day of the excursion, I dropped him off, took his sister to day care then came back. He didn't see me for a while as they were busy getting ready to go... once he did actually see me, then we had some troubles.

Firstly he wanted to go to the car.. we tried to explain we were walking but that didn't make sense, then we said we will go shops.. and he was happy with that, but couldn't understand why we couldn't go in the car.

He walked, begrudgingly, complaining, crying and distressed halfway up the first street and got a piece of the [GF and CF Free] chocolate bribe. He kinda calmed a little, then continued walking and sobbing to the traffic lights, we went round the corner and part way up the next street and then decided it was too much for him... he was just so out of sorts and out of routine/comfort zone.

So we went back to the car and drove the 500m to the shops, he kept crying and was uncertain until he saw the other kids and the teacher aide... after a minute or so we got out of the car and joined his group. We went in 2 shops and looked at what they sold, the other kids drew things, and we had some money to hand to the shopkeeper to buy some food to take back for morning tea.

He got a little more distressed in one of the shops coz we were there a while, but after more bribe food we went and sat outside for a minute. We drove back to the school and had morning tea there.

If he was just a little older, I may have been able to explain it better to him and he may have understood better, if I had met him at the shops that may have been better... but I know him and his complete lack of understanding about roads, and wasn't willing to let him walk with someone else just yet. But you know what.. he went... he got to go on an excursion with his schoolmates, and that's a wonderful thing.

Plants do not belong in pots

2006-07-28T20:35:00.000+10:00

Just a view of things I have noticed that 'make sense' to Jonathan... or perhaps make him feel good.

For myself, when I was a child, having a drink of milk... more particular flavoured milk, could only be really done in one way to truly savour the experience. The cup has to be plastic, kinda thin, and fairly tall. The mixing of the favour has to be done with a long spoon, and then the same spoon must be used to drink the drink, one spoon at a time slowly sipped. It is better again if you are sitting on a couch with your knees bent up around your ears. Since becoming an adult, the knees around the ears are not so important, but flavoured milk still tastes best from a spoon.

Jonathan seems to have similar feelings about certain things, and I just wanted to share a few. People who see me drink milk think I am odd, but it brings me comfort (the same as eating a meat pie... crust removed first, then eat the middle with a spoon, then eat the bottom.) the things that seem 'normal' or 'make sense' or 'bring comfort' to Jono seem a touch more abstract than these, and I hope he may choose to explain them to us better in time, even if just to give us a smile.

The Television.
It cannot be turned on or off, have the channel changed, or have a movie started while I am in the room. If any of these occour, I will rapidly exit the room through the back door, or up to a bedroom and close that door, or head downstairs (or on odd occasions complain about the change saying 'finished'). Once the show has commenced and I am comfortable about the change that has occoured I will return and watch it.

Car Travel.
If I am in Mummy's car I must sit in the front passenger seat, (unless 2 adults are in the car which I will sit in the back) Toy Story Number 2 must be in the CD player ready to play, and I will turn it on before I sit down. The volume setting is to be number 11, and I will adjust it accordingly myself... no... I dont need your help.

The Fridge
I will happily raid the fridge and (most times) take apples, carrots or other fruits. I will usually eat 3/4 ish, and leave the other 1/4 on the floor... what rubbish bin?

Pot Plants
Plants do not belong in pots, on the odd occasion where mummy brings one home, I help her by removing them from the pot by bashing, grabbing, turning upside down, and often leaving the plant on the front pathway. More recently she brought home 2 plants, 1 I took all the leaves off the plant first before taking it out of the pot, the other one I removed, took the plant and the pot to the back stairs, turned the pot upside down and put the plant on top.

I was thinking to myself the other day... one day Jonathan will read all this... I wonder what he will think of what I think of what he seems to be thinking. Although really I am writing more for me... to be able to voice how I feel, and to find others who may understand me some :)

All in the family

2006-07-23T13:53:00.000+10:00

First, a little background of the location. Our church rents a hall, that is located next to some office space on the edge of inner city, on a very busy main road. In the past we have had Jono run straight at the road oblivious to traffic, and been able to catch him literally 1 foot away from the oncoming cars. We stopped taking him to church for about 6 months after that, as his comprehension and ability to stop when told wasn't great at that time.

He is much better at understanding and obeying now, he is older and comprehends much more, though streets are cars are still a big fascination.

Today.. he disappeared for a few moments (as he often does), so I looked in the usual spots. The boys toilets, the offices, checked the gate to outside... and couldn't find him anywhere. I grabbed my husband's arm and said firmly "Help Now" (at the time we were having lunch and his older brother was sitting acroos the table and saw my face). We found him.. UNDER a table in the other corner.

About 10 minutes later, his brother came up to me and simply said "I'm helping Mum". He then told me that he saw my face and how worried I was when I thought I'd lost Jonathan, and he wanted to help me to keep an eye on him so we don't lose him.

There are times I worry, what if I die young, who would take care of my children, and who would have a chance of understanding Jonathan's needs. Today I was shown that there really is small need to worry, because there is someone there who really tries to understand and cares. In thinking, his sister also spends a lot of effort in guiding and directing Jonathan. So really.. we will die one day, and it may be young... but he has people who will be his helpers, as best they can. *warm fuzzies*

Any response is a good response.

2006-07-17T17:44:00.000+10:00

The other day Jonathan was in the backyard (his favourite place) and I needed to get him ready to go out, So I called for him, saying 'Jono come... time to go in the car', usually, I just call a few times until he starts coming to me to get ready to go, and he will often echo back 'come' or 'car'.

This time.. after a few calls.. he practicially yelled.. WHAT!!?!?!?!

I have never been so excited to hear a child talk back to me. I've told a few friends, and we all agreed, any other child would get some discusion about the right way to respond, for Jono, it was just exciting that he responded at all.

School Holidays

2006-07-14T16:09:00.000+10:00

Well, it's been a little while, we've been busy! Painting - brave or foolish.. 3 children, mutliple paint pots and brushes; crafting - making a dragon out of egg cartons; stuff around the house, and an overnight stay at a hotel.

Jonathan has had a bunch of foods he really shouldn't ... and is actually coping really really well with it.

When we went away overnight, we went to a hotel that was catered for kids... playrooms where you signed your kids in for activities and stuff (and a playgym and pedal go-karts) , outdoor play gear, and 5 heated swimming pools!! We actually went swimming in the middle of winter.

However, the highlight was Jonathan and the ocean. When we arrived the queue to book in was too long, so we went to the beach to go for a walk for a little bit. Jonathan tried soooooo hard not to go into the ocean (which just a few short years ago he was frighteened of)... but failed miserably after a while.

We saw some antics that inched him ever closer to the water... trials in the sand on his bottom, prancing, but the draw of the water was too much. One minute he was at the edge, the next a wave crashed over his legs wetting his shorts.. the next a small red jumper crashed down into the icy ocean.

He loved it, and froze to pieces in the cold cross breezes when we pulled him out again. We let his older brother go in as well, and amazingly neither of them got very sick from it. We stopped his little sister going in, and she got the sniffles for a week or so after.

I'm not sure what the big drawcard is about water play for him... not just swimming, but play.. he'd watch a tap turned on to a trickle for hours if we let him, and just watch it over his fingers, rocks, spoons, whatever is close handy. It must just be soothing to some extent, or maybe those cogs are going at 100 miles an hour figuring it all out. One day he may get around to telling us (says me - water baby from her youth... maybe I do have an affinty after all)

Water, water everywhere!

2006-06-19T20:31:00.000+10:00

Jonathan has been getting much more into water play again athe moment... it's just a shame that its winter here and he has a chesty cough.

Anyways, he decided that the upper floor of our house needed a water feature... so proceeded to pour 2 litres of water onto the couch... it seeped through the couch, the floor boards, the lining... and through a light socket in the downstairs roof.

The waterfall was quite spectacular - albeit dangerous - and after a mad scurry for towels, and leaving the light off overnight, downstairs dried quite nicely. He was somewhat shocked when he came downstairs and saw it dripping through the lightsocket.

Yes, he did get a smack on that one, it's just too dangerous to have him doing that on a regular basis.

It's funny though, he just wanted to put some (read: a lot!) water on the couch... no idea of consequences... I don't know if he really understands now either... but the couch was in need of a clean anyways :)

Writing

2006-06-14T19:12:00.000+10:00

Today I found in Jonathan's school bag 3 pieces of paper with his name on them... one was tracing over dots in the right shape, the others freehand.. they were very child-like.. I'm not sure if he did them himself, or if he had someone holding his hand and directing him - I shall find out. [Edit: he had help to write them.. but he really understands that a 'J' with some scribble after it is how to write his name ]

But.. I showed them to him and praised him on writing his name.. he was well pleased.

I get amazed at times by his progression, it seems to 'normal' and at other times it seems so restricted. Some areas he functions exactly like any other boy or girl his age... and there are some kids in his class whose language is almost as restricted as his, yet have no special needs.

It's so hard to gauge just what he is learning and understanding.. at times it seems like he knows everything around him, he just doesn't want to tell us about it. Other times he is waaay in his own little world and its hard to break in... is he simply daydreaming...? I honestly couldn't tell you.

Oh, and this winter's big news.. he is actually staying under his doona, last winter it was not something he wanted and we just dressed him extra warm and hoped for the best.

With his often restless nights it seems to be getting harder and harder to get him out of bed now in the mornings... especially when the doona gets ripped off him, and he fumbles around for it then drags it back over his entire body like a cocoon.... toooo cute!

Food Glorious Food

2006-05-29T15:48:00.000+10:00

Well.. I said a while ago that I would talk some more about food, and last weekend we had a couple come to dinner who has an Autistic child themselves, and we ate as well as discussed food :)

For a lot of kids with Autism, diet is looked at with the recomendation of Gluten and Dairy free being good as theit bodies cannot cope with certain things in those foods, and the nutrients don't get digested as well and blocked from being sent to the brain, so brain function is more difficult.

For us... they make a BIG difference.

When he was 2 and 1/2 we went to a Hungry Jacks (aka Burger King) with some friends... we had just recently reduced his diet, except we still let him have cheese, coz he just loved it so. It was HARD, he couldn't sit in his own chair, tried to steal food off other tables, and wouldn't play in the playground.. I think we lasted 35 minutes before giving up and going home.

We decided then to take him off cheese and just see. Two weeks later we were at the same HJ's, and he sat in his chair, ate his food, and played happily. So... we gave him an icecream as a treat, we were so pleased. He spent the next 4 days under his bed... quite literally - he just could not be with us or be at our level.

Then we have gluten. At day care last year he had a bunch of specific 'free' foods just for him, which was wonderful. However, one of them thought we were wanting wheat free and preserrvative free.. so got a rye bread especially for him (GLUTEN!!!). We were not aware, and in the two weeks they gave it to him (only 1-2 pieces every other day) he regressed massively in multiple areas of his life. Socially he stinted, words dropped off, and he stopped going to the toilet in the toilet... we were back to him doing poo's in the back yard, as he could not cope with sitting on the toilet... it had been 6 months since he had done that! Once we found the culprit and stopped it.. it was about 2 months before he was back to the stage he was prevoiusly at.

Mind you - being completely GF and CF free these days is possible, there are so many foods available - soy products, tofu cheeses, goats, rice.. etc. But we find it hard still - with 3 kids, parties, friends... so we aim for 80% plus.. and then don't get stressed if he has something he shouldn't... coz if we were too focused on it, it would truly be a burden.

So... if any of you have heard of these things for your child... please try them.. just give it 2 weeks and measure for yourself, then make you own decisions about continue... coz habits are hard to break, and good habits can be a challenge to get into :)

(Says me who hasn't been to the gym in 5 days ... ooops!)

Pointing : Stage 2

2006-05-19T19:54:00.000+10:00

Well, the pointing has given Jonathan such a new lease on life.

Wanting to take full advantage of this stage I ask him to direct us when we are going in the car to and from the Special Ed unit. He points and I ask "Which way?", and he now actually replies with "This way" rather than just echoing me.

Unfortunatly, we also had a meltdown about the car not going the direction he was pointing.

He Goes to Special Ed 2 afternoons a week atm, and on a day he wasn't meant to go, he really, really, wanted to. So as I turned the car towards home, he started crying out "this way, this way, this way!!" and pointed in the opposite direction. I said a few times " Home today" but it didn't get through... after all, he had the power of the finger!!

Being only 700 metres to school it wasn't a long trip, and once I got home he continued in his frantic requests. I unbuckled his seatbelt, and he didn't want to get out. I kept trying to coax him, but he just wanted to go... he even crawled up on top of the dash board pressed himself into the windshield and kept trying to point and say "this waaaay!!!!"

After quite a while he got out of the car, but was very distressed. He went to the side of the house and sat amongst the path with the pebbles and started putting them into a container and out again. He just needed soemthing tactile. He then had a few other things happen that also distressed him and it ended up being about an hour before he calmed down. :( poor boy.

The next day was a day for special school, so that seemed to make things a bit better.. the power had returned! I think he's just testing his boundaries again.

Today tho, his older brother (who is 7 1/2) asked me "when is Jonathan going to be unautistic?". That was a big conversation, with a few tears on both sides, mine mostly when Daniel cried saying " but I want to talk to him." Ahhhh we are all growing through this experience.

LOOK !!!!!

2006-05-08T20:54:00.000+10:00

With a flourish of a finger, and a joyous phrase, we enter a new phase for Jonathan.

In the past few days, he has started pointing, with his finger at various things that excite him. Tonight it was the 'Wombles' (old BBC tv show) Dvd playing on the TV. He ran up to the TV, pointed at it and almost shouted in excitement.

"Erm... most children point at things" I hear you say. "True", I reply... "most children do, usually from as early as 15 months". [By 15 months most children: Walk without support, say a few words in addition to mama and dada, move arms and legs to assist in dressing, wave bye bye, communicate by gesturing and pointing, finger feed self, and begin using a spoon. http://www.laxfamilyresources.org/child_development.htm]

We are at 5 and a half years and just now seeing some consistency with some of the basic developmental abilities for most children - of course, it delayed due to it's relation to the social aspect of life.. the constant 'boundary' for autistic people.

And just looking at that list I linked, he walked at around 14 mnths, had maybe one other word than mama and dada, rarely assisted with dressing (from fuzzy memory here.. never really took notice on when that changed.. perhaps at 3 yrs-ish), he was waving bye-bye occassionally, which inadverntandly stopped at around 18mnths for perhaps around 2 yrs, and he had no problems feeding himself :) .

Also... another delight, I have yet again to thank the makers of 'Toy Story'. I purchased a CD for the car, basically a script from the movie with a narrator over movie voices. A month later... I had tried a few times to change the CD, but he always refused... only that one would do.

This morning, as we arrived at school... he held his hand over the on/off swicth so I couldn't turn it off, I waited for him (while his sister also got her shoes on) and after around a minute the bit he wanted came on... he then proceeded to amaze me by repeating 'word-for-word' around 6 sentences from the script, in time with the recording. Not just a few words, but almost a full paragraph. (of course... it's echolalia, it's not him saying a paragraph himself... but that definately will be coming!)

Things like this just give me hope for him for the future.. I have no real gauge to measure him by. He is his own man and developing in his way, I don't know how much language he will aquire, how well he will read, how he goes with maths... I see high school being especially difficult for him - let alone the adult world, and besides, we have grade one yet to tackle. {Moderate sigh}

It's too far ahead to be looking in some ways, but it also helps us to be better parents to our other kids. Be YOUR best, do all YOU can, excel with the gifts YOU have... fair advice I should be taking for myself too ;)

"Mum, look at this"

2006-05-03T14:27:00.000+10:00

About a week ago now, we were at the computers... The two boys on one computer, and me on another... when Jonathan says, clear as a bell "Mum, look at this".

He was holding up a piece of dirty paper.. and wanted to show it to me.

The amazing things about this were:
HE initiated... he chose that he wanted to tell someone something - and in this case it was me he wanted to tell.

He had an objective.. for me to look at the paper.. and HE chose the right words to achieve that.

He spoke a sentence... with no prompting, modelling, initiating, he just ... spoke.

Wow!

Just a quick definition

2006-04-21T09:24:00.000+10:00

After writing that I have a disabled son, I thought I should clarify... most of my friends and family would be likely to say - no, that's not disabled... he is able bodied, and smart as a tack.

Which is true - he is. His dexterity and love of climbing has been the cause of concern on many an occasion - 2 storey house are very interesting.. but we worked on that, he has trees he can climb in the yard, and we made a tree house, as well as a baby gate on the outside of the stairs going to the balcony, and some netting under the edge of those stairs - it all helps :)

And - he is smart, he knows exactly what you are talking about most times... you can tell, by his behaviour, and that cheeky smirk that often develops when he knows he's pushing the boundaries, he also has great interest is stars, the universe, words, and other things.

However, what I am referring to, is the fact that he will need assistance, probably for most of his life. Assistance in getting ready for a day, in achieveing, having direction and focus. I know a lot of that could be for any child, but let me explain. He is currently at prep, the year before grade 1 at school. The first term of school her had one teacher assisting him get into routine, so I wasn't really aware of how involved it is. At the end of the first term, I was asked to come and help as that teacher won't be available for the hours she was previously doing. Because, for example, he has trouble in the routine of sitting and listening to a teacher... if it's not directed directly to him, he would prefer to get up and pace, which disrupts the rest of the class, and he has tanty's about not being allowed to do what he wants... coz at home, there was no rigid defined structure.. he has lots of freedom to do whta he wants when he wants.

For him to do a simple activity, like a collage... he needs someone sitting next to him, to help him cutting, to show him gluing, to help him focus, and to help him stick the things down. I did this at home the other day - his 3 yr old sister was fine... he needed the assistance, because he was more fascinated with how the glue had little bubbles in it when you squeezed it onto the paper, then actually putting something onto the glue to stick it down. Now really - it was interesting what he was doing, but not the object of the exercise... and so it will be that way at school, and so he needs assistance, and so he is not capable... and so disabled (or perhaps unable would be better?)

Whatever the case... it has really brought home to me that he has extra needs, and we as his parents need to seek ways to assist him to get those fulfilled, without impacting too much on us, on our capacity emotionally, on our capacity of time for each other, and for the other children... and you know what... I think we will likely get the balance right 1/100th of the time.. the rest of the time, it's purely grace assisting our family along.

Some of the 'facts'

2006-04-17T20:20:00.000+10:00

Well, after finding out we had Autism in our family... we went 'researching'.. and very quickly got overloaded, there is LOTS of information about this condition.

I always boil it down to simply, a lack of ability to socialise. Of course - it's a heck of a lot more involved than that.. but that's the nutshell I tell people. In that nutshell come behaviours, things people may think are rude.. yet to someone with autism, it makes sense - why do I have to look you in the eyes? I can hear your voice without that - yet 85% of our communication is by body language, and facial imagery.

I recently came across a story of people researching human faces and gestures - they came up with approx 3,000,000 various faces - most of them non-descript / silly / pulling-a- face, and boiled it down to 3,000 definitive expressions that show emotions and what the other person may really be feeling - including the 'micro' expressions that are on someone's face for 1/10th of a second, but show how someone really feels... scared when trying to be brave... 'poker-face' when trying to lie.. etc.

So, to someone who can't 'read' faces... and doesn't want to necessarily look you in the eyes all the time - how much are they missing out in communication? Tonnes! No wonder they have issues socialising.

From another site "Autism is a neurobiological disorder that affects social connection and intellectual comprehension, becoming apparent by age three, although many people are diagnosed years later. People with autism have unusual and repetitive behaviors, and absent or peculiar speech. They’re often plagued by sensory overload, during which competing streams of thoughts, sounds, lights and noises flash simultaneously through the brain. It can be like living in a casino, multiplied by fifty. It has no known cause, and no cure. Autism is a spectrum disorder, ranging from mild to profound disability."

This word has only hit home in the past few days. For the past 3 years, I've been living a life of someone who has a child who is fairly normal.. just a little delayed (he's 5.. and we have yet to hear a full setence from his lips... he can just put 2 words together comfortably... only recently do I have any idea of what his voice may be like... for up until now, it's been mostly babble, and the occasional favourite phrase 'To infinity and beyond', thankyou the makers of Toy Story - we have a common ground for our son.

So... I have a disabled child - brought home more clearly to me from the fact that he isn't coping with a full day at pre-school, and they have asked me to either cut his days, or come and be a support person for him in the school grounds. At first, the 'I will do anything for my child' came out - of course I will support him, he needs to be here for the best chances for him for socialisation. Then came the 'I need as well' - I need my space, I need my time for me, I need some time without my children... I am swamped and overwhelmed.

Then came the acceptance 'I have a disabled child'... me... I personally have a child who is not able to do things other children do, who cannot manage a regular routine, who cannot focus, who needs assistance to get through a day. Then... gratitude 'How many other parents get asked to come and spend more time with their child by their school?' Seriously.. its a responsability and a thrill. Of course.. if I hadn't been retrenched in the beginning of the year, and allready working from home part-time, we would also be faced with the 'one of us needs to be at home full time for this child special needs'... another thing for me to be grateful about.

Ahhhh so many emotions about a simple thing - I'm convinced it's genetic, 2 generations back, my Great Uncle was known for beiing a tinkerer - always in the back shed making things - not socialising... invented some amazing things. Autistic traits... from what little I have heard about him - yet who really knows, they weren't diagnosing such things back then. My Aunt, has Bi-polar.. thought originally they thought it was Asperger's - the speaking cousin of Austism. My son, diagnosed a year ago, and my nephew - also diagnosed, yet his parents are still in denial, he recently turned 8.

I think one of the hardest things about Autism is the not knowing - we don't know exactly why it happens, and it's so easy to look at ourselves and say - am I defective? There is no 'cure' its' genes, and it's not up to us to manipulate these things. There is also so much guilt by association, it's hard to look at this child each day and rejoice in them, yet rejoice we do.. in every little word, little phrase, in every beautiful light-up-the-whole-face smile. Tonight, after dinner... we had friends over for a bbq, we were just sitting and chatting, and this boy sitting beside me just started singing - twinkle, twinkle.. and sang pretty much the whole song, with all the words... the first time I've heard it from him so clearly... and that was a moment of rejoicing.

Reality Strikes

2006-04-14T13:32:00.000+10:00

Firstly a little background, we have had knowledge of autism in our family for almost 3 yrs now... life before knowledge and life after are very different.

At the time of the realization... we were married almost 10 yrs, had 2 beautiful boys, 2yrs old and 4 yrs ... and our 5 month old girl. Our 2 yr old we had been questioning his behaviour for some time... he seemed to not hear very well - so we went through a battery of hearing tests, with all clear being the results every time.

We had also been to speech therapists, and a variety of other experts with no answers... he just seemed a little delayed in speech and in learning. He also had little capacity for social skills, and didn't look us in the eye much, didn't desire to talk, couldn't point at things to express his interest or desire, he was very happy... just off in his own world.

Finally a peadatrition suggested we attend a university project workshop which was addressing children with delays in learning and social skills. The first day of the workshop didn't mean a great deal for our family... just information about what it means to communicate, and how we go about doing it.

Day 2 of the workshop started the same as the last day... not much that I felt was really relevant for us. Then we saw some videos of Autistic Children and how they interacted and played. The shock was immense - we saw our son in these videos... this is what we had in our family.

We did lots of research into different hings in those early days and months - to the point of oversaturation. One thing I definitely hold to and will for all his life is food... gluten and dairy make a HUGE HUGE HUGE difference for his capacity to learn, socialise, and understand, but I'll go into that more later.

I think we went really well for about 3 months... then fell over, and now we are 3 yrs down the track... and finally coming to terms with what we are really facing, what needs, desires, expectations, and abilities our child has... from speech, to social interaction, to crowds, to events, to schooling.. its an on-going adventure... but I think I am finally ready for the next step.

We have just celebrated our 13yr Anniversary and our kids are now 7, 5 and 3 years old.

I've never written a blog before, and I have no idea how often I will update this, but I'm writing this blog... for 2 reasons.
1 is for me - to have an outlet, and a chance to get some of these thoughts I'm dealing with out of my head.
2 is for you - the other families who have autism in them somewhere.. and just want to know you are not alone, esp on those days where you feel it the worst.