I Don’t Like You

My oldest boy L has autism, an intellectual and a visual impairment. He’s 6 now, but when he was about 3, he started pushing, scratching and pinching others. Sometimes it was because they got in his way, took his current object of desire from him or that curly girly hair was just calling out to be yanked. Other times it was an attempt to connect with another child or adult and sometimes it was just for attention. Well it has certainly gotten him a lot of attention over the years!

Way back when it all started, I called on the experts. How could we head this behaviour off at the pass? I was told to give him a positive statement of what to DO as opposed to a negative statement of what NOT to do. ‘Hands down’ was the statement that was selected as most appropriate at the time. This, along with diversion, sensory input & breaks, environment management etc, etc, etc. It’s been an ongoing challenge. One that has got the better of me at times. It’s pretty hard not to react when he’s gone to scratch a baby or shoved some random toddler over at the playground.

Like most autism parents I’ve gotten pretty good at dealing with the dirty looks, the comments, making a quick apology on his behalf and depending on the situation, giving a short explanation for his behaviour – sometimes to the parents but always to the kids.

Little kids are generally very accepting of difference. They don’t really care if another kid is screaming or flicking a ribbon or not using words or doing funny body movements. Sometimes they ask questions but once answered, they just get on with the job of playing.

For younger siblings though, its different. They live with autism just like you do, but they don’t have the understanding or reasoning that help them to negotiate their way through the complexities of neurodiversity. Over time, these sibling relationships grow to become the incredible heart-fueling relationships that can keep our autistic children connected to the world and to people from their own age group. Like this delightful pair of brothers in this short film that I came across recently.

Meanwhile back in my current reality, 3yo (N) is just getting to that point where he is asking questions about his older foster brother. We go to a ASD playgroup on a Saturday morning and he calls it the Pinchy Playgroup even though no one else who attends is a ‘pinchy boy’ like our L is.

Fair enough too. He has been on the receiving end of quite a bit few pinches over the years. He’s been pushed, had his hair pulled, been scratched as well as being pinched. He is one of the most important people in L’s life, but recently he has had enough. He’s saying things you don’t want to hear and asking difficult questions that are hard to answer.

The ‘I don’t like him’ statement has been coming out more and more frequently in recent weeks. ‘L doesn’t love me’ is another one I’ve been hearing. It’s complex and I’m trying to explain it to a 3 year old, so I try to keep is simple.  Me: Are you good at talking? N: Yes. Me: Is L good at talking? N: No. Me: L loves you very, very much but it’s hard for him to tell you that in words. He shows you by sitting next to you, copying the things you are doing and playing with you.  There’s a lot more that we discuss, but that is the general gist of it.

With N’s birthday coming up he’s been so excited about choosing a cake and inviting friends, practising singing the birthday song, telling people how old he will be turning. Today I heard him talking directly to L – something he doesn’t usually do a lot of. But he crouched down, looking for a connection and said ‘do you want to come to my birthday party L? It’s going to be lots of fun!’

So maybe he likes him after all.

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Rain, Mud, Flood

Two years ago , just as the new year started our river city copped it with an incredible downpour. After years of drought and water restrictions it was overwhelming. Then the river began to rise. And rise. Flash flooding which took cars, houses and people. There were people stranded on rooftops, people who lost everything, including loved ones.

The Brisbane Flood 2011image credit: University of QLD

The Brisbane Flood 2011
image credit: University of QLD

I have friends who were affected, their houses flooded up to the eaves and all their belongings a sodden, muddy, stinking pile of unusable mess once the water subsided. It took most of them until very recently to get back into their homes, back to their lives, after recovering from the trauma, then cleaning and re-building and dealing with the endless paperwork of insurance claims. So when the rainy season kicked in this year, no-one thought it would happen again.

The rain kept coming courtesy of a tropical cyclone which slowly worked it’s way down the entire coast of our state, then kept moving southwards impacting more and more towns, cities and people.

We have a long weekend in late January. It’s the last weekend before the kids go back to school and the thought of being stuck indoors with three little boys after six weeks of holidays – lets just say it was not blowing my hair back.

So I made plans to take the kids up to the property where we sometimes go to get away from it all. The kids can have some boys own farm fun, I can get a bit of a break as the hosts Chris & Karin help out and support me in my effort to remain sane (tough gig!).

On the morning we were due to leave I had a chat with them. The rain was coming down quite fiercely at this point but the roads were still open so they said, if I was game, so were they. Off we went and arrived there without any trouble at all.

The property is right in the foothills of the Great Diving Range, with views to forever. Not that day.  The boys were really happy to be there though. They didn’t care about the views.

Forecast? Rain

Forecast? Rain

In the photo, you can see that Chris got his tractor going – much excitement and quite a bit of terror from one of my boys. Luckily he parked it where the kids got a great view of it from the veranda – so lots of tractor talk.

As the day went on it became clear that some towns were being severely affected and many people were having to evacuate. It still seemed hard to believe that we could have another flood in the city. Being out in the country you feel a little removed, but the rain kept coming and so did the winds with very strong, cyclonic gusts of 100k’s plus/hour.

I knew we would be fine. We had a tractor for one! But on day two when I started running low on nappies/diapers and it looked like we might get stuck, we decided to pile into the 4WD and go and take a look at the situation. Could we get into the local village?

This is what we found at the bottom of the hill.

A lot of water on the one road out

A lot of water on the one road out

Still not worried. The local farmer had a couple of little kids, so we dropped in to their place and I borrowed a few nappies and promised not to return them. All good.

Then we lost power. OK. Facebook was running hot at this point with friends keeping each other informed and family checking in as the situation in town was looking more and more like it was going to flood. Friends were packing their belongings, sandbagging their properties and doing whatever they could to help. The charger in the car was very handy at this point, keeping the phone powered and the kids even sat in the car and watched a DVD (thank you Wiggles for that 30 mins of respite).

Chris & Karin are extremely organised and got one of their generators happening and lent another to some neighbours. There was no telling how long the power would be out.

The following day the rain started easing, the cloud started lifting. Although many people had been flooded out in some of the towns to the north of the capital, the city held on. Collective sigh of relief.

Forecast: rain easing

Forecast: rain easing

We decided to go for another drive to see if it was going to be possible to get back home. We got through the areas which had been raging with deep water the day before. At the end of the dirt road you can turn left or right. This is what was we found to the left.

uprooted trees carried miles downstream, blocking the road

uprooted trees carried miles downstream, blocking the road

There was one of the local men there with a bulldozer (as you do!) clearing the road. There was still a LOT of water coming over the road. Amazing amounts of debris – trees, big rocks and mud!

mud galore!

mud galore!

The boys were amazed and awed by all this nature. It was still quite dangerous though, with fast flowing water and unstable roads. In the other direction, it was even worse! A whole bridge had been taken out and the electrical poles were on the ground, running through the water.  The power wasn’t coming back on anytime soon. What had been a small creek and become a massive, erosion zone the size of a football field. Nature is powerful.

We decided to go back to the house, pack up and attempt to get back home. As we were packing, I looked back towards the range and this amazing rainbow was dancing across the foothills. You can’t really see this in the photo, but there were enormous landslides. Massive areas where the trees had been washed down the range and through all that bushland to end up on the side of the road, stripped of all their leaves and small branches, naked.

Rainbow on the range

Rainbow on the range

We made it back. There was a bit of 4WD’ing in my two wheel drive car, but we got through and made it back home safe and sound. It was an eventful weekend, full of natural wonder and human challenge. It certainly made the preparation for back to school a breeze. All the screaming and noisemaking I had been enduring from my big boy calmed down and for that, I was extremely thankful. I was also very thankful that so many, especially those friends of mine, were spared the pain of another flood.

 

 

 

Kryptonite

My middle boy is about to turn 3. He can’t decide between a spider cake (?) and a butterfly cake (??). He wants a watch for his birthday. A Dora watch. He asks me the time about 5 million times a day so hopefully, the watch might take a bit of the pressure of the situation.

it's almost cow o'clock

it’s almost cow o’clock

He is a delight. It has been amazing to see him develop, taking on language so easily, singing songs at the top of his voice, enjoying having stories read to him, having meaningful but circular discussions about motorbikes and doing so many things that my oldest boy has struggled with or is yet to achieve.

Although some things have come easily to him, emotionally he faces many challenges. For many kids in care, this is their kryptonite. It makes them vulnerable. It makes them act out. It makes them seem immature for their age. It holds them back. It’s scary stuff.

I recently read an hilarious list from Jason Good about 46 Reasons My 3 Year Old Might Be Freaking Out. It made me feel a bit better to see that some regular kid is freaking out because the inside of his nose smells bad or his hair is too heavy. But when a child experiences trauma, the freaking out comes from a very deep place. So deep, it has a Latin name – the amygdala.

This little corner of our grey matter is like an obsessive gatekeeper with an incredible memory for detail. It processes our experiences, emotions and memories and tells them where to go in no uncertain terms. When our experiences generate a fearful response our amygdala is telling us to freeze, fight or fly, based on the things we have learned about life.

the amygdala at workimage credit: Dan Butenko

the amygdala at work
image credit: Dan Butenko

We do all this from the get go. Little babies learn very quickly how to minimize themselves in a fearful situation. Some internalise their feelings, and will even go to sleep as a form of protection. Others may scream and scream and scream – fighting their fears.

We’ve got a few changes going on at home with the demolition of the old kitchen and the construction of the new, autism friendly kitchen. It has been difficult for my sweet, almost 3 year old.

‘Put the old kitchen BACK’

‘Are the guys here? Are they going to use their tools?’

‘STOP!! Don’t move that fridge, put it back NOW!

Of course, we’ve done a lot of things outside in the back yard and we’ve been doing a lot of pretend play with his own personal set of tools (excellent Christmas present Aunty S!) and a LOT of talking about things that are scary.

Pass me my drill please!

Pass me my drill please!

 

monster trucks & mud

monster trucks & mud

They say (yes ‘they’ do) that the experience based blueprint we create during the first 12 months of life takes many more years of unlearning when there is trauma involved. It can be done. Kryptonite’s power can be overcome and rendered neutral. We are working on it Superman.

The Autism Friendly Kitchen

There is nothing wrong with my kitchen, except that it doesn’t have a fruit slide!

Love this fruit slide! Totally want one image credit: soaskdesign.com

Love this fruit slide! Totally want one
image credit: soaskdesign.com

It’s fine for an adult who enjoys cooking and likes to display some of the kitchen paraphernalia they have collected over the years. I have cooked thousands of meals in here, entertained friends and family, personally introduced the world of food to seven babies, fed countless toddlers and perfected the art of one handed cooking (the other holding a baby).

My oldest boy, who just turned 6 and is autistic (with a dash of visual & intellectual impairment) has been getting bigger and stronger. More and more he has started exploring the world outside of his ribbon (a passionate, committed, long term relationship). He has become more and more interested in things that are hot.

It started out with a fascination of exhaust pipes. Yes, of cars. Going shopping? Random checking of exhaust pipes as we slowly move our way through through the car park. No idea if they will be hot, cold or somewhere in between.

don't touch!

don’t touch!

Then I would find the knobs for the cook top & stove, turned up full blast. Every time I turned my back. The oven is a great source of mystery and intrigue for my little boy. And the gas burners, well they are just so beautiful he wants to reach out and grab them.

don't touch!

don’t touch!

The kettle? Yes indeed. Enormous fun turning it on and off as often as possible. And the microwave. Please don’t touch! But the worst? Water! By far, the most aggravating – turn that tap OFF! And the most dangerous – boiling hot water. Turn around while he’s having a bath and – flip – hot water blasting.

don't touch!

don’t touch!

So my perfectly fine kitchen is being re-done with safety in mind. My goal is not to keep my boy out of the kitchen. In fact, I want him in there as he learns the important independence skills that are based in the kitchen. I do however, want to keep him out of danger, so safety is the main design feature.

So here, dear reader are my autism friendly, kitchen design considerations for your perusal. If you have any more to add, please do, but it’s more or less too late for me. As the kitchen goes in this week.

  • Carefully choose who you will be working with on this project: If you are using a kitchen design company, make sure they are flexible, have a good range of options and are willing to solve any problem for you, listen to your ideas and work WITH you.
  • Let them know that your top priority is safety and that all your decisions will be based on safety features. Ask them to talk you through whatever safety features they may have to offer.
  • Benches – height and depth make a difference. Get your bench set as high as is comfortable and make it as deep as possible. It gives you more opportunity to keep things out of reach. I have set the tap for the kitchen sink into the bench behind the sink. If you do this, you will need to make sure that it comes withOUT a tap hole pre-drilled
  • Choose a tap set that does NOT have a flick mixer, if it can be avoided. That flick is all they need to get a terrible burn, they are harder to manage than a regular tap.
  • Kid safe magnet locks for every door. They do not supply them for drawers (apparently) but if you have the choice of a cupboard over a drawer, go for the cupboard. The magnet lock system uses a master magnet ‘key’ which frees the lock. You may choose to keep one cupboard accessible – in here you can keep the items you child likes to use. That way, they are learning where to get things from and where to put things away – safely. As they become more and more responsible, you can gradually free/unlock the doors.
  • When you choose the hardware – handle or knobs, ensure that they can be secured with safety devices (if you aren’t able to get the magnet locks.
  • Cupboards: like most people you want as many as possible for the space, but for a different reason. You want every thing behind closed (locked!) doors. Set the upper cupboards as high as is reasonable.
  • Pantry: make it as big as possible! A space where as well as food, you can keep medical/safety supplies (I keep a fire blanket & fire extinguisher in the kitchen), small appliances, sharp knives and whatever else you need to keep safely away. I will also be putting a lock on this door. The beauty of a pantry is that with one door, you can keep your child safe from so many things!
  • Appliances are coming with more safety features these days thank goodness! I have chosen a dishwasher where all the controls are inside the door. There is nothing except a digital window on the external door, plus a child lock.
  • With the stove & cooktop, I am moving from my stand alone unit, to a wall oven and an induction cooktop. Good bye gas (sob). I am having the wall oven set as high as possible and the microwave, set above that. Again, the oven I have chosen has a ‘quiet’ design style, with minimal buttons and a discrete handle.
  • The induction cooktop has a range of features that will help to keep my little boy safe. This is a very fast form of cooking and there is no ‘hot’ element. There is also a child lock on the controls.
  • Electrics – I had a really good discussion with my electrician about the location of power outlets and the use of isolation switches. I am putting the power outlets under the overhead cupboards where that is possible. I’m putting an outlet in the pantry, so that I can charge any re-chargeable small appliances in there. I’m also putting in a high shelf as a changing station for the phones/ipad etc., so will have an outlet there as well.
power, I will have it!image credit: myhomelookbook.com

power, I will have it!
image credit: myhomelookbook.com

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  • Finally, the layout. Every kitchen is unique but most have the main work space against the wall or on an island bench. I have created a space with a single, limited entrance with a dead end where the oven & cook top are located. It means that when I am in the kitchen I can limit access to some extent. If necessary, I can put a gate at the entrance. I also wanted to have a safe space away from the equipment/appliances where all my kids can learn about cooking, so this has been incorporated into the design layout.

I’m almost there! The kitchen is just about cleaned out and we are now dining out on the back veranda. It’s actually quite lovely sitting out there in the early evening. I’ve got the bare minimum I need to do basic cooking and feed the kids – it’s a bit like indoor camping!

hmmm.....what would be a SAFE colour?

hmmm…..what would be a SAFE colour?

Now, colours? That’s just a whole other post!

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