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.