With Flying Colours

This image came up on my Facebook feed today. It’s the kind of list I like. As the parent of a child who gets measured against all kinds of lists of skills and then classified according to his deficits, this is my kind of list!
I’m happy to say that my little boy is doing very well in most of these areas.
That makes me very proud of him and his progress towards a life rich in experiences, relationships and wonder.

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April = Autism Acceptance

It’s that time of the year again. Time to break out all those posts I’ve been working on in my head and actually write them down to share the with you. For the last few years I’ve done what I call my Autism Blogathon – a blog a day for the month. Brace yourselves for the onslaught!

Day One

It’s Tuesday. That means we’ve been up busting a move to get fed, dressed and out the door. I scoot through the morning traffic like a rally driver to arrive on time at L’s speech therapy appointment. Just made it today. I just make it every week.

Speech therapy has been a part of our weekly schedule for many years now. It’s also part of our daily lives as most of the therapy is done at home. Our lovely speechie Judith sets the tasks that we work on throughout the week. Over the years I think I may now have done almost as much study as her! I’ve done courses, learnt Makaton (a sign language), I’ve read and practised. I’ve repeated and slowed my speaking style. I know what a preposition is. I’ve perfected simple instructions. I’ve left space for processing and response. Years and years of it. Thousands and thousands of dollars.

It’s paying off.

It’s so exciting to hear the new sentences, the questions and the answers. L is following directions (miracle!! right there!!!). I can negotiate with him. I can help to calm him with words. He can wait, knowing what is coming next. We no longer live in the world where it’s instant gratification or the sky is falling. It’s a wonderful thing.

I was never certain that my boy would learn to talk or choose to use the spoken word as his form of communication. He is learning and he does choose. Every day.

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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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Summer…you’re standing in it!

It’s summer! Oh boy is it summer!

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A snapshot of the weekend. (conversion for our fahrenheit friends is 45 = 113, 32 = 89). Lucky we don’t live in Birdsville!!

There’s two more weeks of school and then…holidays for 6 weeks. So I’m trying to plan, to make sure we all stay relatively sane (especially me). I’m booking L in for some vacation care, mostly as a way of easing him out of the school routine and then easing him back into it prior to school starting. So I get a week of grace in between school finishing and Christmas and a week of space before he heads back to school.

It’s a specialised vacation care for kids with special needs and best of all – they run it at L’s school. So there will be many aspects of the day will be familiar to him. I’ve only used this service for a couple of days in the middle of the year but I was impressed with their carer to child ratio, the relationships these carers were able to build with my little boy in that short time and his happiness levels in going along to this program. Fingers crossed that will continue.

I’ve got a couple of goals for the holidays. One is to get some good down time for me. The other well…

I’ve been really inspired my a UK blogger whose autistic son Alfie participates in a surfing program. Firstly, kudos for going surfing in the cold old waters off the English shores – brrrrrr! Secondly, amazing!!! Thirdly, this is a great blog so click through and have a look at this great kid who is doing amazing things.

Coincidentally, I happened to see this great poster. I was initially pulled up by the fantastic wood cut style graphic and then I saw what they were promoting…

wish we lived closer...

wish we lived closer…

Then, another blogging friend at It’s a Wunderful Life sent through this link for the Surfers Healing non-profit who provide surfing therapy for kids with autism.

Are you sensing a theme here?

Rainbow Beach....ahhh! (credit: Paul Thomas)

Rainbow Beach….ahhh! (credit: Paul Thomas)

So, I’m going to try to see if I can make some connections for our trip up to the beautiful Rainbow Beach after Christmas. Hopefully, I’ll see if my darling boy L can get his grommit on and hit the waves.

Under Siege

I know! I’ve been a bit slack. But I’ve been under siege. Since coming back from my weekend away in Darwin it’s been payback time for mumma! Things are just starting to settle down a bit now – two weeks later.

My 5yo L has been screaming. SCREAMING!!! Screaming in the morning, when he wakes everyone up in the pre-dawn dark of early winter. Screaming relentlessly throughout the morning routine of getting ready for school. The other day I had to carry him kicking and screaming to the bus. When he gets home from school? Let the screaming begin! (again). It is a form of torture. The weekends are worse.

I’m trying everything. All my tricks. He’s getting lots of attention, lots of positive praise when he is not screaming. Lots of outdoor fun. Plenty of food and water. I draw the line, I warn, I time out, I time myself out. I document to see what I am not seeing. But the screaming combined with the opening/closing door compulsion, the light switch compulsion, the need to find every dangerous or hot thing to touch, the climbing, the stripping, the scratching, pushing and of course, the pooping well, I’d be lying if I said it wasn’t bringing me down.

On the upside, I’ve been inspired by Lauren over at Hike Blog Love. She’s always getting her kids out into the great outdoors. So, I’m going to be following her lead and I’m planning on setting up a special needs & friends bushwalking group. We will get together once a month on a Sunday to go for a walk and commune with nature.

I’m in the process of testing out our first couple of walks – which will be pram & wheelchair accessible. Anyone can come along and join us. I think it will be lots of fun and at the very least, it will give me a break from the screaming. If you are interested, let me know.

Here’s some photos from last weekend’s efforts. It was our first taste of the cold!

The Mean vs Your Kid

Day 20: Autism Awareness Blogathon

It would break my heart to see my child bullied. He’s little, light framed, vulnerable and trusting. Why would anyone want to hurt him? Did you know that research (Little 2002) showed that 90% of children with ASD are bullied? What a statistic!

Today I went to a dynamite one day conference which featured Prof. Tony Attwood & Dr Michelle Garnett from Minds and Hearts,  a clinic specialising in services to the autism community. Bullying wasn’t the only topic covered today but it is the topic I want to write about tonight.

Coincidentally, the other day I read an incredible gut-wrenching post by one of my fabulous bloggy pals about her experience of bullying in high school. I hope you go over to ProfMomEsq to read it. She nailed it when she called the whole experience The Mean.

We know our kids are easy targets and if your child is in a mainstream educational environment, then they might as well have a target pinned on the back of their shirt and ‘victim’ tattooed across their forehead.

When bullying enters the picture, all the years of good work we have done in integrating our kids dissolves away as they become even more socially isolated, depressed, unable to learn because of high levels of anxiety and lashing out aggressively when their limits are reached, often resulting in suspension or other penalties.

So we need to be vigilant for our children, but not vigilantes. We need to keep an eye out for the signs of bullying:

  • lost or damaged possessions
  • torn or dirty clothing
  • bruising or other injuries
  • heightened anxiety
  • interrupted sleep
  • school avoidance
  • unusual explosive responses
  • paranoia
  • changing of special interest areas to the protective (guns, weapons, violence & retribution)
  • mimicking bullying at home with siblings

Sadly, bullying is ingrained within our culture. It is not restricted to the school yard. Bullying rears it’s ugly head in the workplace, in our social lives and even in our own homes.

It’s incredibly depressing just thinking about it. What do we do? How can we change this situation? We’re already fighters, survivors, warriors. We haven’t sunk into the muddy trenches yet, even though sometimes we just allow ourselves to feel the weight of the battle wash over us. So yes, this is another fight we must get through. We must!

What a relief it was to get to the section of the presentation today when they finally gave us some good news. There is something we can do. There are strategies that can be introduced to reduce bullying.

Ideally, the whole school needs to get on board with a zero tolerance for bullying in policy AND it’s practical application. Staff education, consistent application and an agreed concept of justice and appropriate punishment are all vital ingredients. There are good books, workbooks and other resources available to assist with that including:

  • Gray’s Guide to Bullying, Carol Gray
  • No Fishing Allowed, Carol Gray, Judy Williams
  • Perfect Targets, Rebekah Heinrichs
  • Being Bullied, Nick Dubin

You can create a Map of Safe and Vulnerable Places for your school. This identifies the locations where bullying is most likely to occur – areas where there is limited or no supervision like hallways and bathrooms. It also shows the safe havens for our kids and this is where they need to be in their breaks. Places where there are other kids (witnesses!) and that are supervised.

Most importantly, all children in the school need to become aware that they have a responsibility. If they see bullying and don’t do anything about it – then what does that say? The ‘silent majority’ of kids do not bully or condone bullying, but they need to do more than that. Why? Because what made a child one of the 10% who didn’t get bullied? Friends.

Buddy systems, where a group of 3 – 4 kids who are willing to come on board, learn about autism, learn about your child in particular and be there to help out in a range of situations: a social buddy, an academic buddy, a sports buddy. Promote good examples of where someone has stood up to a bully as an act of heroism. Create the opportunities for disclosure and value it when it happens.

You also need to help your child learn how to recognise and respond to bullying. Ignoring the situation will only make it worse, so help them by practicing role plays where they have a script that is assertive, constructive and true to them. Practice self calming techniques. Do not let them believe that they are the abusive words used by bullies.

Create a Grievance Book where issues or incidences are recorded and copies provided to the Principal, the Teacher and also kept at home.

Create a Boasting Book to record your child’s successes in dealing with this issue.

Last but not least, involve them in a sport or marshal art where they are able to learn about defending themselves (but not attacking others).

Well, I don’t know about you, but I’m emotionally exhausted after that!!

Note: I’ve used some of the information from the presentation today in this post – so acknowledgement to the wonderful work of Attwood & Garnett. 

You Are A Saint

Day 8: Autism Awareness Blogathon

Actually, I’m not. Anyone who knows me, knows that I am most definitely not a saint.

a book I don't have
image credit: Jossey-Bass

From the outside looking in, you may think that I am doing something extraordinary. Actually, I’m not. I’m doing something that lots of people do everyday. It’s called parenting. I’m parenting a few more children than the average bear, but not all at the same time.

I am often asked why I became a foster carer. This is what I tell them:

When I started out as a foster carer I was keen to contribute to my local community. I figured that if I wanted to live in a community that cared about me, then I needed to do something that demonstrated and contributed to the values that are important to me. These days, it’s more about the practical reality of being a foster carer. It’s become part of who I am and how I live and it’s incredibly satisfying despite the challenges.
For those people who think ‘I could never be a foster carer, I’d get too attached to the kids’ I say ask yourself if you’d be willing to care for your brother or sisters children if there was a family crisis? Would you love them despite the hardship of the circumstances? And would you be willing to hand them back to their parents once the crisis was over? Yes, you get attached to these little people who come into your life. You don’t stop loving them because they are no longer in your care. It’s good to know that someone is able to help when there is a need and I am happy to be able to be that person when it comes to the kids in my community.

When I became a foster carer, I knew that there was a likelihood that some, if not all the kids would have ‘special needs’ – you don’t end up in foster care for nothing. But like most parents, having a child with a disability is not usually on your wishlist.

I have travelled a similar road to the one that birth parents do when they learn that their child has a disability – overwhelming love, heartbreak, fear, hope, acceptance.

I also feel lucky. I’m lucky to have these kids in my life. They give me so much that I also tell people that I get far more from fostering than the kids get from me. Of course, I give them everything I can, but they give me so much more.

So I’m actually a selfish, lucky and thankful parent of a child with autism (and a couple of other little darlings as well).

The Wednesday Girls

Day Five: Autism Awareness Month blogathon

Part Three of my autism mum story. See part one here and part two here

The Wednesday Girls were a group of new mums that I fell in with when L was a few months old. We got together every Wednesday at one of our houses or would go on an outing – swimming, playgrounds, bus rides. The kids had all kinds of fun and we would get to download, debrief, laugh, cry and work our way into some really solid friendships, sealed with the fire of a shared journey.

There were times when I felt like these women were saving me from drowning. None of us were perfect mothers by any stretch, not that there is such a beast. Some had been through fertility issues, others had horrible gestational conditions but here we were with these beautiful children. And over the years, the number of kids has grown quite considerably.

L was the oldest of this crop but only by a few weeks. So when the other kids would reach a milestone before him I was aware but not overly concerned as I know that every child has their own schedule to follow. The regular professional support I got through the Narby playgroup was reassuring. The therapists who see so many children come through the school, advised patience. It was going to take a little longer for my boy.

I do remember seeing one of the boys quickly moving through the crawling, pulling himself up to stand and then walking stages. I said to his mum Abby – your boy is amazing! He is so advanced! I can laugh now as I think back to this comment. Because of course, he was just totally normal, doing what most kids do within a month or two of each other.

Gradually, all the kids in the Wednesday Girls playgroup overtook my little darling. He wore the knees out of a lot of pants crawling for a full 12 months. I eventually had to get him some knee pads as he ended up with big callouses on his poor little knees. Still he was a happy, laughing boy with an engaging personality. Because of that the Wednesday Girls kids have become a wonderful neurotypical friendship group for L.

Wednesday Girls kids

It was around this time that his obsession with string began. He would gravitate towards anything with a string, anything that looked like or resembled a string. He had a particular way that he liked to fold the string and would do this over and over. My sister in law had given him a beautiful toy that was a block of wood, painted yellow and shaped like a wedge of swiss cheese. Attached to the cheese by a string was a little mouse. You could thread the mouse through the holes in the cheese. Not my boy! He got very attached to it and wanted that stringy mouse in his hand all the time. So as he would crawl along, the wooden cheese would swing through the air and thump down beside his hand. That was the start of me modifying toys for him. Of course I detached the string from the cheese. Oh happy day! That little mouse went everywhere in that pudgy little hand of his. Sometimes, being an extremely oral boy, he would pop that little mouse into his mouth to the shock and horror of some, who thought it may have been an actual mouse.

I had gone back to part time work as an arts bureaucrat. As L got a little older and it became obvious that I needed to give him as much as I could during these early years. I was juggling the work commitments, where the demands on the limited time I was in the office became increasingly overwhelming and a little boy who needed everything I could give him. Priorities!

I arranged to have a year of leave without pay.I knew that it would make a big difference to both of us. So it was with enormous relief that I was able to stay at home and start ramping up on L’s development.

I’ve said in other posts that I am the kind of person who likes to push the envelope a bit. I’m never shy to get in there when something needs doing. So, true to form I put my hand up to care for another child during this time.

Just before L was about to turn one, I had provided some respite care for a little baby girl who was waiting for all the red tape of the adoption process to be finalised. It was only for a few weeks, but I just loved doing this. So the week after I finished work, as I sat there twiddling my thumbs (!!) I took a call asking if I would be willing to care for a ‘pre-adoptive’ baby. She’d only just been born. She was a few weeks premature and was up in the hospital waiting for her placement with a foster carer while the adoption team did their thing.

I guess you know by now how I responded to this request. I was up at the hospital lickety split. It took about another 10 days before she was able to come home, but I was up there every day, giving her lots of love, feeding her, bathing her and giving Baby E as much as I could.

Some people questioned me taking on another child when L had a lot of special needs. Being one of five children myself, I felt that the benefits of having siblings far outweighed any possible negatives. I still think that I made the right call there. It’s why I have three kids in my care right now. But back to the topic…

At this point L was almost two. We had a wonderful Christmas that year in our steamy sub-tropic city. Lots of water play and backyard fun, visitors and family.

Assuming the position, post Christmas lunch
my sister and baby E

The new year started off great. L was finally walking and he was on a mission to make up for lost walking time. We walked every day. He refused to go in the pram. He just needed to walk, so we did. Sometimes he’d walk up to 3 kilometres before finally slowing down and stopping. We’d walk right past the playground – not interested. At all. Didn’t want to stop and look at the ducks or the water or the trees or the cars or the flowers or the dogs. He just wanted to walk.

At the Narby playgroup, they were able to access what they called ‘visiting teachers’ who have specialised skills in various areas. They organised for the teacher who specialised in autism to come in and meet L and myself. He wasn’t convinced that L was autistic as he was quite a social boy, especially with adults. But despite this, he was a great support though that year when a few more behaviours emerged and we started down that well trodden path of behaviour management.

I remember saying to one of the therapists in the middle of that year that I was pretty sure that he was on the spectrum. At that point, I had done quite a bit of research and I knew what the indicators were and the criteria was a pretty good match for my boy. Now that he was two & a half plus, the evaluation process could begin and the evidence gathering and doctors appointments became an even bigger part of our routine.

It may sound blasé now, but I didn’t care if he would be diagnosed as autistic or not. I knew that a diagnosis would not change him. He was still my little darling no matter what. I figured that if he did get the diagnosis, then great – we know what we are dealing with and can get on with it. If not, then also great – he’s not autistic, fantastic.

It would take almost a year before a diagnosis would be made.