Autism means Literally...

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.

Can I Cuddle a Koala?

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.

What is this Daylight Savings?

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

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 :)

We love Babies

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

Where's Tv Mum?

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.

Dance like you are 'unaware'

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 :)

Autism Awareness Day!

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.