Carrot Cookies!?

Many autistic children can suffer a range of food intolerances or allergies - our family is no exception. They are intolerant to salicylates, which are found in almost all fruits and many vegetables - symptoms may range from skin rashes to (most commonly) extremes in behaviour, notably intense hyperactivity and rage. They must also avoid many preservatives. I find most people are extremely sceptical about the concept of food chemicals (particularly "healthy" fruits) causing issues - I used to be one of them. I like to suggest feeding my kids commercial garlic bread containing preservative 282, and watch the results for themselves. Most recently we've discovered that Dairy seems to be the cause of their many gastrointestinal troubles, so are now dairy free as well.

For loads of information regarding food intolerances, the best place to begin is Sue Dengates FedUp website. The Royal Prince Alfred Allergies Unit also has a great deal of easily digestible (sigh) information, and they publish a terrific cookbook called Friendly Food.

I need to make almost all of our food from scratch, and one of my lunchbox staples is Carrot Oat cookies! It is dairy free (if made with Nuttlex) and low in salicylates - they're also DELICIOUS. If you can tolerate spices, add some cinnamon and they taste like carrot cake. I usually make a double batch and freeze for school lunches. It's incredibly forgiving so you can modify the ingredients to your hearts content - grated pear is lovely, carob chips make them interesting, or bake as jam drops with a blob of pear jam in the top.

Carrot Cookies

Melt together:
170gm Nuttlex (or butter)
2 tablespoons Golden Syrup (or honey)

Combine:
1 cup self raising wholemeal flour
1/2 teaspoon bicarb of soda
1 cup oats
2/3 cup brown sugar
1/2 cup grated carrot (I just grate two carrots)
1/2 cup dessicated coconut
1/2 dark chocolate or carob chips (leave out if you like, or just put a single chip on top)

Mix the melted butter into the dry ingredients. It will be a coarse and crumbly mixture.
Squish spoonfulls and form into balls - press onto your cookie tray - they do not spread much, so press flat if you prefer flatter cookies.
Bake 15-20 minutes at 180 degrees celsius.
ENJOY!

Tacit Does It

I was able to get out after dark for a few hours recently as I received my first ever Government Respite break - in the form of two young, nervous nannies. They visited on an previous day for a short meet and greet session with the kids, which did not go well, however that is a whole other story - suffice it to say that it was an excellent training experience for them.

Aside from meeting my four autistic children, I gave them a tour of the house and a general rundown of what they'd be required to do. Despite my efforts to keep it brief and avoid information overload, I was struck by how difficult it was to succinctly convey the bare-essential household needs, even for a babysitting session that would only be about two hours long before the children would be in bed for the evening.

I'm currently studying a Graduate Diploma of Library & Information Science, and one of the topics I'm covering is "Knowledge Management". Explicit knowledge is something that can easily be expressed, written down or stored, and passed on to someone - such as mealtimes, favourite toys etc. Intrinsic knowledge are things that you just... know. In my case, this might be the ability to determine from a kids posture that they need to go to the toilet. This is closely linked to Tacit knowledge - which is the knowledge that people have that can not be readily or easily written down, usually because it is based in skills. Tacit knowledge is extremely difficult to pass on to others, without them spending time with you and observing/learning hands on.

DS1 needs to wee. At the moment, I'm the only person who can notice, and read his subtle clues and come to that conclusion. How can I explain the sequence of events that lead to my understanding of his needs, to another person? Even if I could articulate all this sort of information, what about the endless and 'odd' needs for each of the other three children? If some of their foibles are misread or ignored, an autistic meltdown is assured.

What's IMPORTANT? So, I began a bullet list note of major points. The order they receive their dinner. The chairs they sit at. The colour of everyone's plates. The amount of food on their plates. Washing hands after dinner. No TV/Computer. The process of getting everyone upstairs. The order they use the toilet. The order they undress. The order they enter the shower, wash, leave the shower. Who needs help getting dressed. The process of teeth brushing. And so on...

My bullet list spanned two pages by this point. I realised how unrealistic this was for someone else to deal with, and also how much routine and endless individual requirements I was tacitly catering for each day! So, I kept the entire list to three short paragraphs with key times, and hoped that the older DS1 and DS2 would fill in the blanks without too much drama.

Off I went, into the night - I can't remember the last time I left the house alone, in the evening! It was 30 minutes before I got my first phone call from a frustrated Nanny.

Overall, the Nannies did cope well - however I was surprised by the amount of difficulty they had. And there were two of them - I am but one. My children are able to adjust to having strangers around, however are highly dependent on routine and have many obsessive quirks, and autistic likes/aversions spanning sounds to textures and order which I've identified and catered for, generally without concious planning, it's just WHAT WORKS WHEN IT'S NEEDED.

I briefly considered making a Family Manual - perhaps a Wiki? Time and motivation is against me, however it would certainly make a good essay topic for my Library degree. Better solution: make that clone of myself I've always longed for!

Rewarded to Fly

It is difficult to find thing that motivate my children, aside from television or computers. Over the years I've tried many standard techniques, reward jars, reward charts, stickers, motivational gifts (aka bribes), chocolate, you name it, I've probably tried it, without success. Anything with small parts like magnets or star shapes is particulary futile, as they just want to collect and hide the pieces. They seem to find the concept of a reward for accumulating an arbitrary (and meaningless) number of items is too abstract.

Saying "if you are tidy at dinner, you get a star. Get five stars and I'll give you a new book" has several problems for my autistic children - the star is boring. It doesn't relate in any logical way to dinner. The passage of time is fairly meaningless, they have difficulty understand that it is one star per day. And most importantly, despite loving books, they forget that the book is the end reward (I couldn't leave it in view as they'd steal it), and it also fails to relate to dinner, or stars on a chart. All in all, the idea simply doesn't make SENSE to them.

How to motivate?

I realised that one thing they do like - is the reward charts themselves. They're not motivated by the outcome of "getting five stars", but they are motivated by the STARS THEMSELVES. I've been pondering for quite some time how to use this realisation to come up with a new approach, and think I've got it figured out.

The reward chart, IS the reward.

I came up with the idea of using a paper airplane printable, and marking each section on it with a number (ie. 7 sections, for 7 days of the week - whatever number of reward 'stars' you need). I tend to keep time periods for rewards short, usually five days.

When the child accomplishes the task/goal for the day, they can colour in a section (or perhaps put a sticker on it, whatever floats their boat). I find it important to have the "reward time" at the same time every day. When they reach their final goal, they can cut out the plane, make it, and fly it!

An example of a printable plane:

There are all sorts of printable origami crafts, masks, flowers etc available - my boys are particularly interested in planes, so this suits their interests. Any sort of craft would work, as long as you can clearly define "sections" to use as "star spots", and you may need to find a craft that relates directly to the goal you're trying to achieve - a toilet cutout for using the bathroom? Hand shaped crafts for washing hands? A box to represent tidying up toys?

My daughter would love a butterfly craft: http://www.magicalkingdom.co.uk/craftlisting.htm

How about little paper boxes, bags, or tags to colour and hang on things? http://familycrafts.about.com/od/creativepaper/Paper_Craft_Projects.htm

Origami! http://www.origami-fun.com/

There are so many possibilities. This has worked very well for us - you can use virtually any sort of paper craft, as long as the end result requires some effort (cutting, colouring or gluing) and can be played with or used in some way. In fact, I've been amazed at how effective it's been as a motivating tool, and certainly a LOT cheaper than the endless array of other motivational aids I've tried through the years.

It's all about the eyes

I get so caught up in making it to the magic 7pm bedtime that often I overlook incredibly simple things I should have done to make things run more smoothly. One thing I've done very poorly is integrating visual aids into the day - there's always an excuse. Not enough time to design them, it's too much effort to find and setup the laminator, and invariably the blasted printer is completely out of ink.

I need to do this!

Visual aids are so helpful for ASD kids. They frequently have difficulty expressing themselves, perhaps they cannot string the right words together, a phobia prevents them from verbalising a particular need, a meltdown prevents them from focusing or even being able to identify an issue. My 6yr old DS1 has a chronic bowel issue - it means he wears Pullup's constantly, and frequently has involuntary toileting accidents. He's often unaware this has happened, and if he is aware, will never tell anyone and will never ask for assistance to get cleaned up. He has had a history of dealing with ill-informed and uncaring adults in the past sadly, I fear this has a great deal to do with his continued reluctance to approach adults for help. He has a discrete bag of supplies in his school bag, but the current 'system' relies on someone identifying that he needs to be changed and proactively taking him. This rarely happens unfortunately. I'm somewhat ashamed that it's taken me so long to figure out a solution - and it's so simple.

In five minutes I printed (in B&W, still haven't replaced the colour cartridges!) a simple business card sized note that briefly states his name, his medical condition, and in bold print "Could you please help me get changed! Thank you!" with a smiley face clipart. In lieu of the pesky laminator I taped it inside a zip lock bag, and attached it to the outside of his toiletry supplies bag. Now he doesn't need to SAY anything - just present an adult with his bag and show them the note. He was absolutely thrilled with this idea. We'll see how it goes.

Sometimes it's the simplest things that are the most elusive.

Countdowns

It has been very interesting for me to realise how differently my kids need to be handled, compared to "neurotypical" children. As all my kids have ASD, I'm often completely oblivous to the fact that challenges we face daily are not ones encountered by others - this has become very evident over the past few weeks as our Day Care Carers have been asking, no, pleading, for advice on how to handle my kids.

One of their biggest hurdles involves Transitions. Throughout the day, people face endless transitions - from moving between rooms, stopping one task to begin another, thinking about a different concept, eating your veggies before other food, planning about what you'll do in the next hour, talking to one person before switching to another... the average day consists of streaming transitions. People with ASD typically struggle with transitions for many reasons - they may be unable to shift their mental space to a new thing, they may not have completely finished their current activity to their satisfaction, the transition may result in a frightening situation (ie. socialising), sensory deficits may make them avoid walking onto the concrete or into sunlight... and so on, the list is endless. The key is, that every transition, no matter how seemingly insignificant, will almost certainly cause some difficulty.

It is very difficult for a busy Daycare Centre to provide a great deal of time and energy in persuading or gently encouraging ASD kids to engage in the daily life there, it's simply not feasible. They can provide basic supports but ultimately we need to streamline the process! In an effort to make explanations as simple as possible for Daycare staff, I've tried to make the most concise list of advice possible:

1. Firstly, accept that changes will make the kids seize up - but they're not being deliberately difficult.
2. Give forwarning of any changes - announce the intention in simple terms (I suggest "caveman speak") about 5 minutes in advance.
3. Give a second warning about 2 minutes in advance.
4. Move on to the next activity. If my child refuses, say something like "Ok, we're all doing painting now, you can come with me and join in when you're ready. If you need to, you can also use the quiet corner."
5. If my child refuses, walk away and proceed with whatever the activity/task is. Invariably they will eventually sidle over and join in "on their own terms".

If it's an important task like going to the toilet or moving to a different room, we simply state the need again "I know you don't want to, however we must change your nappy now as it's dirty." and start a countdown to three "We're going in 1.... 2.... 3...." and physically take the child if necessary.

The countdown gives the kids an extremely simple, always understood mental trigger for switching their thinking into DOING. We use countdowns a LOT at home. I go to sleep at night counting to three endlessly in my head. It's obviously important to nurture and provide understanding to these kids, however Life around them must go on and it's rarely never possible to spend 30 minutes negotiating or working up to a transition.

Park Life

My kids won't play 'correctly' with toys, do organised activities, or otherwise spend their time in a peaceful fashion. What they DO love to do, is run around outdoors. Our best days are spent at a park (albeit with many toileting challenges), and despite the packing and preperation required, it's the one time they're at their happiest and most content. I dream of one day having a huge leafy yard and a home devoid of any toys, especially small Lego.

We had such a day recently. It was a much needed Good Day, after a very Challenging Week.

We are fortunate to live near the Bay - a childrens paradise with tidal mud flats and sand. I must confess I don't make enough effort to take them out regularly - I should try harder.

The previous week was filled with record breaking autistic meltdowns and an overstressed, overworked Mum. Not a good combination. I again resorted to Google in an effort to determine if I am indeed an utter failure as a parent, or if others have gone through similar situations - of course, many have. My Google topic this week was how to handle autistic meltdowns in public - we had a doozy at an allergy clinic where I dragged the two big boys for testing. A brightly lit, shiny, enclosed allergy clinic full of strangers. Unlike me, despite knowing we'd be there for a couple of hours, I was woefully unprepared with no snacks, bribes, or iPads. It was about 20 minutes before the signs of overstimulation started showing. An hour and a half later, DS2 began stimming in earnest - flailing around and yelling with a vacant expression, much to the horror of the full waiting room and staff. When you're in this sort of public situation (and with your other ASD children), it's really impossible to follow the general rules of meltdown-handling such as 'put the child in a safe place and wait it out', 'offer comfort items that you FORGOT TO BRING', and the top recommendation 'Stay CALM'. What you really need is a tranquilizer blowgun and a wheeled trolley to capture the beast and remove them to the privacy of your car, where a chilled glass of wine is awaiting.

A few days later it was very gratifying to read through these forum posts and see how many others face similar situations on a regular basis:
http://blog.autismspeaks.org/2011/02/22/totw-meltdown/

Revelations

I had a revelation today.

I visited a friend at her home yesterday - it's rare that we are invited places, or get visitors ourselves, so it was a nice surprise. The kids played so well, except for Z who was disgruntled for most of the visit - overtired and more hungry than usual. However, I knew the general illusion of normality would disintegrate when it came time to leave, TRANSITION time. I gave the kids warnings 10min then 5min in advance, however I could see that things weren't going to go smoothly. When it was time to go, the screaming started. They screamed and screamed, kicked and flailed, cried and hit me. I managed to get them all into the car, then noticed my friend - she was bewildered.

"What on earth is going on!?" she exclaimed. "They seemed totally fine before!? The screaming is unbelievable!". She couldn't believe her eyes. As with most people, they see the "normality" and don't typically witness the "autism". I explained that this sort of behaviour was normal for transitions, especially ones at the end of a busy day, and I keep ear muffs and ear plugs handy at home and in the car. She was clearly quite disturbed.

The next day I got a message from her, saying how awful it was, and how she'd love to give me a break if I ever need it. This was deeply touching as people who witness my childrens multiples-meltdowns tend to run and never look back, family included.

However, it led to my revelation. Every single day for almost seven years, screaming children's meltdowns have been a part of my life. Every morning upon waking, most transitions during the day, every sibling disagreement, every trip out of the house, every trip back to the house, every single bath time. Screaming. Times four. It's just part of my life. A miserable part, but inescapable. However I suddenly realised that it's not part of anyone elses. My friends children may have the occasional tantrum, sibling battle, or anger at not being able to do something, but they don't SCREAM, for hours every day. Ever. I have four... it's been 7 years.

I don't think I've ever felt quite so alone. And isolated.