Lisa Maree Domican

Guest post: From the Developer of Grace App - HIS STORY!

2012-01-18T20:13:00.000Z

Growing Up Geek: Steven Troughton-Smith

Originally posted by John Turi on engadget, Dec 23rd

Welcome to Growing Up Geek, an ongoing feature where we take a look back at our youth and tell stories of growing up to be the nerds that we are. Today, we have a special guest: programmer, app designer, artist and geek, Steven Troughton-Smith.

I was born to be an artist. I was always the kind of kid that doodled when bored in class; I used to spend hours creating the most intricate symmetrical robots or plotting maps for world domination. Somewhere along the way I realized that the thing I really wanted to design was software, and I'd really have to learn to start programming to be able to make what I saw in my head exist.

As a child of four I was exposed for the first time to a computer -- a Macintosh IIsi. When I wasn't playing SimCity 2000 or Spelunx, I was dabbling in Photoshop 3.0. I was fascinated by the Mac and would spend hours learning all the intricacies of how it worked. I discovered an Amstrad 286 in our attic at some stage -- my mom's old work computer -- and set to work trying to figure out the arcane incantations to show something more interesting than a DOS prompt onscreen. (Eventually I found some Windows 2.03 floppy disks about the house and forcibly upgraded it -- it wasn't much better off for my efforts). Then, in 1998, I met RealBASIC.

I know kung fu

RealBASIC blew my mind, because suddenly I could create software just as easily as plotting a town in SimCity; drag and drop buttons and views into a window, double click them and paste in a snippet of example code and boom! You have an app. Of course, it would take years before I'd built anything more interesting than a Notepad clone, but the seed was sown.

In early 2002 (late to the party, I know), I managed to get my hands on a Mac OS X v10.1 disc. I'd 'borrowed' an OS X Developer Preview 1 CD from my dad's work a couple years before and happily installed it on my PowerMac G4 (the first computer I had that belonged to me), only to erase it in disgust a couple hours later. The early Developer Previews of OS X I found horrid; I remember thinking 'this is too much like Windows' at the time. Now, a couple years later, OS X was on the shelves, and was like a completely different OS to what I'd tried some years back. I chose to go all-out on OS X from the get go, and RealBASIC had been updated to create apps that could run on both OS 9 and OS X from the same binary so it continued to take up all my hobby time.

Before this point, I hadn't really realized that there were more OSes than Mac OS and Windows out there. With the OS X release, I had been reading a lot about NEXTSTEP, and my curiosity led me to virtualizing all sorts of OSes in Virtual PC: BeOS (one of my favorites!), Solaris, Red Hat 5, QNX and every pre-release build of Windows I could find (these were the days of Longhorn, filled with grandiose visions and crazy new features appearing every other month). I learned to appreciate all the differing takes on what an OS should be, and I pulled them all apart with gusto trying to learn as much as I could.

Meanwhile, I stuck with RealBASIC until I was sixteen when I finally reached the limits of what I could do with it, and conveniently Apple had just released Xcode 1.0. I had been putting off learning how to make Cocoa apps, but this time I had no choice so I decided to delve head first into Xcode and not come out until I'd figured out how to recreate everything I was doing in RB. Before long, I'd crossed the point of no return; although everything was that tiny bit harder to do, everything I was making was a hundred times better than before. For the rest of my school days I made all sorts of Mac apps, even posting some online, but never going as far as selling anything.

It's a UNIX System. I know this!

Then, the iPhone happened. It was my final year of school, and I'd been rocking a Nokia 6630 for three years at this point. Little known fact: I was a complete Symbian fanboy up to 2007. I had started with the 7610 and had two N-Gages before the 6630; it was a real OS, with real apps, running on a phone. The mere idea of writing apps for it was thrilling, but unfortunately writing anything for Symbian at the time was a nightmare. I was the kid who sat in his dorm room compiling an open source Symbian toolchain for OS X for hours just to try and create 'Hello World'. After several failed attempts I'd given up trying, but then, halfway through my final year, Steve Jobs stood up on a MacWorld stage and announced Apple had built a phone, with a touchscreen, and it ran OS X. The concept blew me away -- OS X! On a phone! I was fascinated by it, and followed all iPhone-related news closely, hoping that someone would be able to hack it and create their own apps to run on it.

A couple days before the news broke, a hacker friend of mine sent me a screenshot showing a 'Hello World' app running on his own iPhone -- it was possible! I tore the OS apart, put together my own toolchain, and set to work on reverse engineering just enough to figure out how to build an app. It stunned me how similar this was to desktop OS X; even though everything was different, it was still built in the same way, still had all the same design patterns. I already knew how to write for it! It was going to be months before I had an iPhone or iPod touch of my own, but that didn't stop me; I emailed a copy of my app to a friend in the US who would see if it ran, screenshot it, then send me the results ('remote debugging'). I would go on to build several apps and hacks for the iPhone that year (including a popular one you may know called 'Stack'). The final puzzle piece came in 2008, when Apple announced the App Store; finally, I knew what I wanted to be -- I had a professional career in app making ahead of me.

End of Line

That first year of developing for iOS before there was an SDK (or sample code, or documentation) left me with most of the skills I value today; learning to disassemble and reverse engineer code, designing for a limited screen, and focusing your design for a specific-purpose app instead of trying to do too much. In recent years I've expanded my knowledge (and apps) across a variety of other platforms (I'm on everything-fanboy: Mac, Android, WP7, webOS, MeeGo Harmattan, Symbian, BlackBerry PlayBook, and so on) but iOS will always be home to me. The iPhone is my blank canvas, and I've always thought of it that way. It's not a computer, it's not a phone, it's a software appliance; it's only bounded by your imagination. I couldn't imagine working in any other profession.

You can check out Steven's work at High Caffeine Content and follow him on Twitter (@stroughtonsmith)

Guest Post; Functional Behaviour

2012-01-17T11:12:00.001Z

Today I have a rather scientific guest post from my friends at ABA Ireland.

ABA Ireland started as a Facebook Group to link and promote the use of Applied Behavioural Analysis across all settings and to support students, therapists and tutors. They have also run a number of "Fun Days" for families of children with autism and are now getting set up with as a charity with a website. The group is INCLUSIVE - in that they want to encourage anyone who wants to increase their understanding of evidence based education to join and learn more about it.

After my recent posts on behaviour which were written from a parental point of view, I asked the group to contribute a slightly more formal explanation of Functional Analysis - which is what you need to do when you have an inappropriate behaviour issue going on. Niall Conlon very kindly agreed to write this. If you have any questions, please post them in the comments and I will get Niall to answer them. Lisa

"Firstoff, thanks to Lisa for giving me the opportunity to let her readersknow a little bit more about Functional Behaviour Assessments (FBA).It is important for the parents of children with special needs to knowabout FBAs because they're one of the most powerful BehaviourAnalytic tools available for dealing with challenging andinappropriate behaviour. In the US, the effectiveness of the FBA has been acknowledged by legislators who made the use of the FBA mandatory for children with disabilities who display challenging behaviour in schools..

Whatis a Functional Behaviour Assessment?

FBAinvolves an examination of how the child interacts with theirenvironment, and aims to discover specifically when where and whyproblematic behaviour arises. It's not always easy to recognise thecause of any particular behaviour and it can be particularlydifficult to identify the function of challenging behaviour inchildren with special needs because they may also have difficultiesin communicating. The benefit of the FBA is that it helps us to learnmore about the causes or functions of challenging behaviour and thisknowledge can then be used to formulate an individualised effectivetreatment for your child's challenging behaviour. .

Whatare the functions of Challenging Behaviour?

Thefunctions of behaviour can be divided into those that are maintained by positive reinforcement and those that are maintained bynegative reinforcement. Positive reinforcement involves accesssomething. For example, the function of the a self injuriousbehaviour might be to attract attention from a parent, or it might bean inappropriate way of requesting a preferred toy, activity or snack.It could also be automatically reinforced by the release ofendorphins within the body which can cause pleasant physical sensations. Negative reinforcement typically involves stopping, avoiding orpostponing some negative condition. For instance, a child might runaway to escape a barking dog, or they might scratch their skin toremove an itch.

What happens during the Assessment?
Inan earlier post, Lisa described one of the most common tactics usedin Functional Assessment; the use of ABC data collection sheets. Itis one of the more common tactics used because it provides a lot ofdata about direct observations of challenging behaviour that can thenbe used to develop an intervention designed to reduce the behaviourof concern. However, the FBA is not restricted to the use of anyparticular form, test or checklist. It is an ongoing process forexamining behaviours of concern with a view to putting in placeeffective behavioural interventions based on the function of thebehaviour.

There are two main types of FBA: DescriptiveAssessment and Indirect Assessment. Descriptive Assessments involvethe direct observation of the behaviour in a natural setting. The ABCsheet that Lisa described can be used in direct observations, or youcan use alternatives like scatterplots, or specially designed datacollection forms. Some methods and measurement techniques are better suited to some behaviours than to others, and there are other practical considerations to take into account, however your Behaviour Analyst can guide you to select the most appropriate option. Indirect assessments get their name from the factthat the data they provide is based on recollections of the behaviourrather than direct observations. Indirect assessments are generallyused in conjunction with forms of Descriptive Assessment. There aremany interviews, checklists and rating scales that have beenspecially designed for Functional Assessments that can be carried outwith parents, siblings, teachers or other significant people in thelife of the child which can be used to identify behaviours of interest, guide direct observations and develop support plans.

What Next?

Once a behaviour analyst has enough information about the circumstances in which the challenging behaviour occurs, he or she can form a hypothesis about its function and put in place an intervention designed to decrease its frequency. Some challenging behaviours have single functions while others may have multiple functions and any intervention will be individualised to the needs and capabilities of a particular child, so every intervention will be different, however all behavioural interventions will pay particular attention to the function of a challenging behaviour and will seek to teach replacement behaviours that match its function where possible.

About the Author:

Niall Conlon recently completed the MSc Psychology (ABA) in Trinity College Dublin. Niall is a graduate of the TCD Post Graduate Diploma in Applied Behaviour Analysis. He is a student committee member of the Psychology Society of Ireland’s Division of Behaviour Analysis. He worked for three years as an ABA tutor at the Applied Behaviour Analysis School for Children with Autism in Kilbarrack Dublin and is currently employed by St. Catherine’s EDC as a behaviour support worker.

For More Information

If you would like to know more about functional assessment, contact your local Behaviour Analyst by visiting www.bacb.com or go to www.aba-ireland.com for more information about Applied Behaviour Analysis.

Guest Post from Clive: The Autism Assistance Dog

2012-01-13T10:09:00.002Z

Today we hear from Clive the Autism Assistance dog and my good friend Fiona.

Fiona's son Murray went to the same state autism school as Grace and Liam from 2004 -2008, when we left to go to Saplings.

Fiona and I have kept in touch sharing lunches and yes, a few boozy dinners with the group of Mums that I met at that little school in South Dublin which did our best to improve.

So it was with my heart in my mouth as I first read this post on Clive's blog and tears in my eyes when I finished reading it. You will see why...

Murray and Clive

" This has been a very special week in the House of Clive. We have had a really 'magical Murray moment'.

Murray is 12 and Clive has worked with him for the past five years as his Assistance Dog.

In that time there have been many wonderful moments between the two of them - lots of new adventures, lots of places travelled and most importantly lots of progress with Murray. He communicates so much better, is far more independent and more responsible now that he has Clive . He is much more willing to try new things, attempt new situations and is trying hard to learn more skills all the time.

Each one of these achievements we have noted, particularly those that have involved Clive, and we have delighted in all that Murray is achieving.

But this week, something truly special has been happening ....

Murray has really stepped up and has thrilled us with new found independence and confidence. He is, for the first time ever, capable of and happy to take Clive out for a walk on his own.

It began a few days ago when his Mom asked him to take Clive for a walk! She has asked a lot of times believe me and Murray has never been able to do it. His Mom or Sorcha has always had to go with him. He knows the route we walk like the back of his hand - we do the same walk every day twice a day with Clive! We have neighbours along the way that would watch out for Murray but still we could never get him to try and walk on his own with Clive.

Probably we still would have worried about him doing it up until the last few months when we have seen such progress in Murray's communication skills and independence that we felt we really had to push him this further step and get him to go on a 'short' walk with Clive on his own.

This might seem nothing to a lot of people, anyone with a 'normal' 12 nearly 13 year old might wonder why we have got so excited at this. But this has been huge for us all!

It began on Monday when Murray's Mom asked yet again "will you take Clive down to the green for a little walk, just a little walk Murray?"

Murray got Clive's lead and took a 'poo' bag out of Clive's jacket that was hanging up in the utility room and smiled a real 'Murray' smile and said "Okay, Clive - walkies". Murray's Mom nearly collapsed in shock!! After months of working on this, asking and cajoling Murray but him never having the confidence to agree and actually looking terrified of the prospect of going out on his own with Clive, he suddenly agreed.

Murray put Clive on the leash and off they went. Murray's Mom thought she would never be able to stay back in the house and not rush down the road to check if everything was okay. But she knew she had to stay behind and let Murray get on with this - his first walk on his own ever with Clive. Sorcha had to calm her Mom down and keep talking to her and telling her if would be okay.

We rang a friend and then another friend - neighbours along the route to make sure they saw Murray and Clive passing by their houses and to ask them was everything okay??? Murray and Clive went to the green, Murray let Clive off the lead. Clive ran around for five minutes, did a poo, Murray picked it up in his black poo bag, put it in the bin, put Clive back on the lead and walked home. They were only gone for 10 minutes but it was the longest 10 minutes in his Mom's life.

But when they got home, after the relief had subsided - it was then pure delight and excitement that Murray had achieved this. An independent walk with Clive. Never has a simple walk been celebrated with such joy!

It was a very magical Murray moment that was been repeated each afternoon this week. Murray has taken Clive out on his own again on Tuesday and Wednesday and Murray's Mom is learning to relax and Murray is so proud of himself. He really knows that he achieved something BIG this week and you can see the delight in him. He keeps smiling that special Murray smile at his Mom and his Mom keeps smiling, big happy smiles back"

- Clive & Co

For more, please go and visit Clive at Assistance Dog for Autism. I am going to keep sharing other people's personal stories here, so please, if you have one to share email me.

Toilet Training Part I

2012-01-08T19:01:00.000Z

I recently joined a new facebook group for Parents of Autistic Children in Australia who are trying ABA. The old chestnut: When to toilet train? came up and it reminded me to repost this advice:

Don't be pushed into it!
You have to be ready to persevere with it so make sure there are no holidays, or house moves coming up, or any kind of disruption to normal life as it will set you back.

Prepare by making a visual social story laminate the pictures and put them in the toilet where you can point to each step as you prompt them to do it.

You can also make a little book of pictures to represent each step - to read together.

These days you might be tempted to do a story using an App but please be warned - if you want it to be accessible during the toilet routine, you are setting yourself up for a water (and worse) accident with your iDevice.

Make it out of paper using pictures from any of the free image sharing websites listed below*
Adapt it to your child's needs and cognitive level to be very clear about the expectations. You might need to get a brown or yellow marker and color in some of the pictures if you know what I mean.

I also used a picture of clean pants and dirty pants. Use a pictogram rather than a photograph or you might find that they go from wearing pull-ups to being fixated with one color or style of underwear that you have to drive all over town to stock up on. A drawing is easy to generalise. A photograph can become a fixation.

Next, do some frequency charting. Take a piece of A4 paper and write the time in 30 minute increments along the margin. Put it on a clip board and store it where you do nappy changing. Write a W (for wee) and P (for Poop) and tick the one you find to give you an idea of when to expect things. Take data over a couple of weeks to get the weekends recorded too. Kids will often have a very different rhythm in school.

You should also start preparing your rewards. These have to be JUST for toilet training so they are going out of circulation for any other activity. Something small and edible is just great as you can hide it and hand it over very quickly as soon as they are finished "performing" and washing hands of course.

Again, there is a temptation to give them access to iPads, iPods or even a mini-dvd as a motivation or reward. I suggest you start with the tangible treats and leave that in reserve. Unless you are prepared to ONLY give them access to the device after a successful toilet visit - and be prepared to fish it out of the toilet or hand basin (and replace it) then don't even think about it.

I would also suggest purchasing a large training potty. There is a model in the big toy shops that has a removeable tray, a base that converts to a step and removable booster seat. They can practice sitting on it in their pants and nappy while you read the social story booklet, until they get comfortable enough
Sitting high on a toilet for the first time can seem like sitting with your butt over the Grand Canyon, and want them to feel calm and secure. They may also develop a fascination for the water and flush before you even get started - so a nice big secure potty is a way to avoid that.

Start with it in a room they feel comfortable with, and then move it slowly towards the bathroom. When Gracie got comfortable with using the potty, we were able to take it apart and use the booster seat part on the toilet and the step so she could climb up herself. This is called pairing.

If they are at all interested in you when you go to the loo, you can start with the potty in there and do a little duet sitting a couple of times a day. Don't hang around waiting for a movement or wee, if they do one Great! Give them an instant reward, if they don’t, just get up and put the pants back on, wash hands and get on with the day. Don't build stress into the exercise, for either of you.

I also recommend the Bear in the Big Blue house "Potty time" episode on DVD or YouTube.
There are a couple of songs on it to learn and you can teach yourself to sing them to keep the whole event fun. Gracie loved this show so much she used to go and get Ojo, the little girl-bear and bring her to the bathroom with her. When Ojo appeared, we knew it was time for Gracie to do a No 2. so we followed her and supervised proceedings using the social story and picture cards.

Often around the time you start teaching your child with ASD to remove their nappy to sit down, they learn to remove it at other times - sometimes when it is full and they do a little bit of painting with the contents. This is incredibly stressful but do not feel alone. It happens with typical kids too but our kids may do it again and again. Remember the post on Behaviour? It is often your reaction that will fuel a repeal so remove the child from the event while keeping a straight face and put them securely elsewhere. If they are messy, by all means clean them up but don't be "giving out" while you do it. Just wipe the hands or whatevers and then give them something to do while you go back and clean up the mess.
They can actually find the big clean up reinforcing as you may not have spent as much time with them up until that point, particularly if you are running around after another child or just busy running the home. So don't let "making a mess with poo" become a means of getting your exclusive attention!

You should also start securing the nappy so they cannot remove it when soiled. Dungarees with difficult buckles, a neck to knee swimming costume (easy to get in the Summer) or once of those sleep suits that do up in the back are a good idea. Give up the toilet training until you have time to watch them closely - perhaps for a few hours each day.

There is no shame in giving up and coming back to try it another day. Don't let anyone pressure you into "getting them out of nappies." - there are far more important goals to be going on with and you might be better getting the fundamentals in place before you start.
For more about Toilet Training and Communication; Go here.

And now a word from the Bear himself: (no he does NOT do it in the woods, he uses a potty chair)

*Free Picture resources, click on the links or copy and paste into your address bar.www.dotolearn.com www.freeprintablebehaviorcharts.com www.visualaidsforlearning.com/products/index.htm www.abaresources.com/free.htm

B is for Behaviour

2012-01-03T13:59:00.000Z

Once upon a time my little Liam was a biter.

Still is but he has learned to bite his own hand* in order to stay out of trouble.

We didn't teach him to do this, but the consequences of biting other people taught him to try and stop himself, by putting his hand up to his mouth. He used to bite a lot of other people. A lot.

Biting is such an effective way to get someone out of your space, to elicit a reaction, and to get sensory input when you are angry, threatened or excited, that it comes naturally to many children, not just those on the autistic spectrum.It comes just as naturally for the victim to squawk or scream in an amusing fashion, back off and leave them alone with whatever they were doing before you got bitten. No wonder it works.

So, how do we put an end to it?Well the first thing is not to react. Very difficult when your beloved 3 year old has just nipped you on the c-section scar (a convenient height when you are 3) and you are in white hot pain meltdown. But stifle the scream, as it just increases the likelihood of a repeat.

At the time when biting first occurs, you will hopefully be stronger than the child so you can move them firmly but gently towards a pre-planned time out zone. A time out zone removes the biter from the situation and protects the recent victim from retaliation. It also helps everyone to cool off.
Please don't smack, hit or bite back. You are bigger so it's not fair and it will not solve the situation.

For reasons of compliance the time out zone has to be more than just the “naughty step."
A sophisticated child with ASD is just not going to stay there alone. You need a room with no toys visible, (lock toys in a cupboard or toy box when they are not in use) or the back porch if you have an enclosed yard with a glass back door. And you have to be within sight or sound of the biter. This is about separation, not isolation.Only a short time is needed so stay nearby and don't forget about them! You are pretending to ignore them. Pretending. So whatever space you come up with, make sure there is nothing there that they can wreck or tip over to create further mayhem and regain your attention.

You have to be able to leave them safely alone for a few minutes.The younger they are, the less time they need.If Liam bit his sister I would put him in the back garden and stay at the glass porch door while comforting Grace visibly. Liam soon learned that this was not a way to win friends and influence people, and the behavior ceased.
At the same time I started trying to teach him ways to get my positive attention.

Once you come up with a Zone you need to do an “A.B.C” (here's the science part)

Just get a piece of A4 paper and draw 3 columns, put it on a clipboard and attach a pen.
The first column stands for Antecedent; what happened before you observed the behaviour,
the next is the actual Behaviour, come up with a standard description so others can fill in the chart too,and the last is Consequence; what you or others did afterwards.

When a behavior happens, put them into the "time out" zone and grab the clipboard. It will help to calm you down if you're angry or hurt, and you are less likely to do anything unreasonable if you have to write it down.I am not judging you, we have all done it when pushed, and I'm prone to roar my head off when under pressure, but I regret it straight away.
Seriously, forget about threatening to smack too, as they will soon learn whether you mean it and it is pointless and unpleasant for all.

Make threats by all means, but make them about things you will do.I threaten Liam with putting his DVDs in a suitcase and taking them to St Vincent de Paul. As I did do this with all his VHS videos he believes me. (he no longer has a VCR player at home as a result)

Mean it, and Do it, if you have to.Once you have filled one side of an A4 page, I guarantee you will be able to see a pattern. In either the Antecedent or Consequence column there will be a row of similar activities.
It's a bit like writing down everything you eat and drink for a day - you will see very clearly why you cant zip up your jeans any more. Once you have an idea of what it is then you can have a go at changing it.

The ABC will teach you to take control and change the consequences which may be inadvertently rewarding the behaviour, and it will quickly show you which activities or situations make it most likely to occur.

Remember - your child might be finding something that you intend to be punishment as a good reason for repeating the behaviour again and again. Mums say to me: "but I give out to him and he still does it"
Unfortunately the sound you make when "giving out" might be hilarious to your child. I once witnessed an Asian friend reprimanding her son in Urdu after he tipped a bottle of washing up liquid on the carpet. The sound she made was so enchanting I was tempted to tip a bottle of honey on top of it just to hear it again!
So your yelling and gesturing might as well be in Babylonian for all the good it's doing. Just make a poker face and remove the child to their time out zone, then write the behaviour down.

If you find that the behaviour is happening in the same situations - the antecedent- take steps to change those situations and make them less challenging for your child. Communication strategies are usually the key although sensory issues may also need to be taken into account.

This is where we do a functional assessment of what the behaviour is achieving and then find a more appropriate way to get the same thing. A job for another day.

xx

*Liam's hand chewing has so many functions that it is the work of a team of behaviourists to try and reduce it and fortunately it's not doing too much harm, as after 14 years he has a hardened area of skin where he tends to chew.
If your child is hurting themselves badly in order to get a reaction then you need to advocate for professional help immediately. Contact your local area health services or advocacy group and ask for an urgent referral. The smaller they are, the easier it will be to do a structured professionally supervised behavioural intervention that will save them from long term harm.

New Years day + 1

2012-01-02T15:53:00.001Z

My boys in the new pub in Greystones: "Mrs Robinsons" a nice way to encourage Boo to take a walk. xx

Guest Post - Professional Apraxia-EZ app review

2011-12-31T12:51:00.000Z

I'm sure it seems a little hard core to be posting a product review on New Year's Eve, so let me explain; Like many people, I like to think about what the new year might hold, and what I can resolve to do to make things happen.
I don't smoke, I'm not too bothered about diet because at my age I find if I don't eat the right things, my body quickly tells me to cop on - and the regular visits of the wine fairy will be addressed later in January.

What I do resolve to do is get a bit more of a handle on Gracie's vocal approximations. When typical children learn to speak they move through the sounds like Bababaaba, Dadadaddda, and there is a natural progression as the baby talk eventually turns into speech.

Gracie did not say any babble and as you know, did not produce a recognisable word until she was six so her mouth did not "learn" to make each core sound.
She had little or no clinical therapy for many years, and access to a speech and language pathologist on a consistent basis was rarer still. I did what I could as a parent; but it takes a professional to identify and correctly reinforce the right approximation consistently, while supervising everyone else in her environment to do the same. This is called an Apraxia program. You can't do this at home! (but oh boy did we try!)

Thankfully, this year we had the exact combination of quality speech therapy and the right behavioural reinforcement in her ABA school; and with regular measurement and sharing of data she made great progress.

And then the Therapist got a promotion and left. (story of my life!!)

When I heard that there was an App for implementing an Apraxia Program I was very curious. I asked an old friend, who has a speech therapy business to take a look at it and do a review.
Disclaimer: Marijke who has written the review below has worked with Gracie in the past and knows her issues well. However, she has assessed this in relation to her current practice and as you can see, across a number of clients, not including Gracie.

As I said, this a skill set that you simply cannot acquire from a book and I find all the shorthand symbols on Gracie's reports difficult to follow and the therapists had to translate them for me phon-et-ic-ally.
I would still be very interested in seeing if the parent App was more user friendly.

But what follows is a truly professional review.
Best Wishes to all of you for a progressively improving 2012.
Lisa xx"

Apraxia-EZ app review

Reviewof the Speech-EZ®iPad Application “Apraxia Picture Sound Cards APSC Pro”

MarijkeMorris, Speech & Language Therapist

The Apraxia Picture SoundCards APSC Pro was developed by a Speech and Language Pathologist. The app was created for individuals with Childhood Apraxia of Speech(CAS) and severe phonological disorders. This version is theprofessional version, designed for speech and language therapists tocreate multiple entries for different students.

The pro app costs $299.99and is mainly designed to support the Speech-EZ® Apraxia Program. It is mentioned in the app description on the app store and thedeveloper’s website that it supports the Program. The parentversion costs $179.99. I am reviewing the professional version ofthe app from a therapist’s point of view. The only differencebetween the parent and the pro version is that the parent version isfor a single user and with the pro you can track multiple students. I am not a certified Speech-EZ® Apraxia Program practitioner, butwas informed by the developer that if I purchased the manual, I wouldbe able to use the app in clinical practice.

The target population isquite small, which means this app is not appropriate for frequent usefor therapists, unless they have a specialised caseload of CAS andsevere phonological disorders only.

The picture flashcardsare very clear and colourful. When you press on the picture, thepicture flips over to reveal the text. A few children found itreinforcing to look at the text and were motivated to activate theflip themselves. Some children were often more motivated to flipthrough the pictures, and needed constant supervision to say thetarget word. It would have been useful to have a recording facilityon the app, for children to self-monitor, and for therapists andparents to share feedback.

The therapist cues andelicits the target words and rates it on the app out of 3, using asmile, neutral face or frown symbol. Parents may find it difficultto rate their child’s speech accurately and this needs to be takeninto account if the app is used as part of a home programme. If atarget word needs to be repeated, it also skews the data of thesession, as the rating is only connected to the sound position, notthe target word. The data can be stored and emailed to the parents. This was usually very effective in tracking data, but I found thatthe data was completely incorrect for one of my therapy sessions, somanual back-up data is also recommended for therapy tracking.

Target sounds can beselected for the picture cards on their position in the word, whetherfinal or initial position. Target sounds are not available in themedial position. Tap-to-play audio is also available, but it shouldbe noted that it is in an American accent, not suitable in the UK andIreland. Some target words are also American vocabulary, for example“pail” instead of “bucket”.

The hand cue cardscontain video footage to demonstrate the hand cues and would beuseful if you are not using a different set of visual cues in therapyalready.

AppSummary

Skill(s)Targeted

Target speech sound practice within words

Age/Grade LevelsTargeted

Children

How to Activate

Isolated finger point

Type of Device

iPad

Cost

$299.99 (excl. manual)
Manual $95 (required)

Would you recommendthis App?

No – the price makes this app poor value for money. There are other cheaper apps that can be easily adapted to serve the same purpose. It would not be suitable in a core vocabulary approach. The target words and audio are American, and not suitable for children outside the US. (This could easily be rectified with localisation, as done by other app developers).

Happy Happy to you!

2011-12-24T10:36:00.002Z

This year, Gracie is saying "Happy" when prompted to give a seasonal greeting.
So Happy Happy to all my friends and supporters. It has been a huge year for me and my company. A lot of hard graft but also a lot of lovely feedback and that is what keeps me going on the difficult days.

My lovely Gracie is doing great at the moment, lots of unique requests* and interaction. Lots of giggles and fun so we have nothing to complain about.
Liam has made a huge list of DVD box sets that he wants. Like everyone, Santa was a little bit short of cash this year but he managed to find a few of them and a few surprises too.

To make it easier on ~~parents~~, Santa, Aunties, Uncles, Grandparents or really cool supportive friends who want to help you get the gift of independent communication, you can now get Grace App for €20 or $25 which is the average value of an iTunes Gift Card, for the next few days.

Even if you don't have a device yet, you can download the app on your iTunes account and use it when you do. (if you are in Ireland, go here for a great way to get a device)

And have a Happy Happy from all of us. xx

*You can see what she is up to on my Facebook page each day. (I'm also doing a giveaway so go like it)

UPDATED 30/12/2011: THE SPECIAL IS NOW OVER.

Salutations of the Season

2011-12-19T15:04:00.000Z

Liam made this lovely picture a few years ago, inspired by an episode of "Bear in the Big Blue House" or "Arthur." Note: the Colombia Tristar™ inspired winged horse pulling a carriage. Last time we were in Ballarat he had my sister find him a Menorah in an antique store. And my sister was delighted to find a lovely neon blue Krishna light that she plugged in on the deck to add to our ecumenical holidays that year.

So whatever you celebrate, I want to wish you a wonderful season. And please, if you have any trouble sorting out your priorities with regard to obligations, always put your immediate family first. You will never have cause to regret the time you spend with your kids doing what they like, whatever that is.

xx

Beautiful Boy 11/12/1997

2011-12-10T22:49:00.002Z

It is my Liam's Birthday as of 5 am on 11th December.

Still as beautiful to me as he was when I first held him in my arms 14 years ago.

And at the noodle market last weekend.

PS. It's also The Grace App Wizard's 23rd Birthday today. Go and wish him a Happy Birthday here

My Grace App on iPad2

2011-12-08T00:43:00.001Z

Here's a lovely new video made by Grace App Developer Steve Troughton-Smith.

For your interest, it explains how a person might request a particular DVD featuring our favourite little red monster, ask for help with choosing a chapter, request a snack, and a particular drink all using the features built in to the App. In essence the idea is to explain how Grace App gets you whatever you want.

xx

You (used) to have mail

2011-12-02T00:05:00.003Z

Just watched "You've got mail" with the previously quite adorable Meg Ryan and always loveable (to women at least) Tom Hanks. (why do men HATE Tom Hanks so much?!?)

So it got me to thinking about all the things that have changed since this supposedly era defining film was released.

* Big super store putting small personal but obviously much more expensive shop out of business.

Ok. This happens. It happened when we were all rich but we wanted more stock and we wanted more STUFF like coffee and muffins AND books at the same time. It also happens in small villages where a big shopping centre with a roof and free parking opens up out of town and suddenly your rainy parking officer infested main street becomes a pain in the butt. Then it becomes a dog shit footpathed, pound shop & thrift store boarded up wasteland.
However, when was the last time you went into Easons/Borders/Angus&Robertson to ask if your favourite author had anything new, and was told "no, but if you like her you will love this because it's the same style/genre" ?

Long time heh? Unless of course you have long deserted Easons/Hughes&Hughes/Barnes&Noble for Amazon. Where a computer suggests what you might like.(and rarely gets it right!)

Conclusion: my local village still has an independent bookshop. I make sure I buy stuff there. I often pay a few euro more- but if they don't have it they order it in and they don't charge me postage. And I can't get a book signed and stalk/annoy/question my favourite author on Amazon.
(incidentally, all the big book stores are now in deep shit because of Amazon/Kindle)

* Email!
20 years ago. Okay, 25 years ago I finished High School and moved to London. I kept in touch with family and school friends by writing letters. I was lonely, I missed home and I poured my heart out on paper, week after week.
One of those friends came over to London and she told me she kept my letters, because they formed a kind of narrative. I've lost touch with her, and I doubt she still has them but if she did I probably couldn't bear to read them. But they are an historical document of an 18 year old from a provincial Australian town moving to London with no money, no qualifications but a lot of chutzpah and working to live.
5 years ago I opened up a new correspondence with another old school friend by Email. We hadn't spoken in 20 years. We were best friends, then fell out (over my intense swottieness during the last year of high school) and we had gone our separate ways.
But once "reunited" by that olde website "friends reunited" - ironically put out of business by "The Facebook" - we emailed DAILY. Sometimes even more than that with emails going back & forth so quickly that it was like a conversation - and then we would even gmail chat. All while I sat upstairs with my laptop putting Gracie to bed, and my best friend reunited sat at his work desk on the other side of the world.

I haven't spoken to this dear friend for 9 months. When I started blogging, I did both. Bit of blog writing, bit of emailing. Then more blog. Then it was "social media" tweeting and facebooking and "micro-blogging"
I started my own business. I started to use social media as part of that and blogging began to fade. When I had a thought that I used to spend a whole evening writing about & sharing, I would just put it into 140 characters and spend the rest of the evening directly engaging about it.
Emailing was dead (except for work)
Blogging was dead (except for profound but rare posts like this ...*gag*)

One new thing pushes another thing aside and....

Albums become Tapes. Tapes become CDs. CDs become Mp3s and the arse falls out of the music industry.
Bookshops become Amazon and eBay. Real books become Kindles. Kindles don't go anywhere because they don't take up beautiful rich and telling space in a bookshelf. Or get donated to your local MAIN STREET charity shop to be bought, by me, for a dollar.

Where is our oral history in this? When the lights go out, the apocalypse comes and we are left fighting over a can of peaches while the geeks try and get us back on the grid, What are we going to do of an evening if there is no electricity? How we gonna recharge our kindle/nook/iPad/tablets?
How we gonna entertain ourselves with no internets/facetweets/YouTube+ to engage our short attention spans?

I think we will tell stories. Stories about ourselves. Stories we read in a book once. Stories we watched maybe.. I know a great story about 6 friends who lived in New York and they had great hair and 2 of them were in love, but they were on a break... Oh wait. That's not my story.

I guess I will tell my story. I'll listen to yours, and when I meet new people and we can share a can of peaches I'll tell them both our stories.

Our stories will sustain.

Xx

Good News and Goodish News

2011-11-18T11:28:00.003Z

Remember how I said the Tabloids wouldn't cover "Life With Autism" because they couldn't find a negative angle?
Seems The Irish Daily Star did.....

Don't worry, I am using that "Selfish" headline on Mr Hammie every time he fails to bring me tea or a glass of wine..

I was also kind of perplexed to see a thread on a Special Needs Discussion board saying how sad it made them feel??

I was heartened to hear from the producer who said that the show had got HUGE viewing figures and she was delighted. I had hoped that this would mean the media could start telling positive stories about disability and special needs without losing ratings.

As the show is no longer on Real Player you can't watch it but hopefully someone might get it uploaded to vimeo so you can watch it yourself and judge.

In any case I had some really good news to share. I made it on to a Beauty Blog!

I was in the chemist on Monday night getting Gracie's prescription filled (at the last minute) and the Pharmacist very kindly offered to make up the first week while I waited. So with 10 minutes to fill I wandered over to the make-ups (as you do) and found this:

A quick google connected me to The Golden Hat Foundation which as Kristie from Beaut.ie explains:

"comes from Kate’s involvement with an Icelandic family, the son of whom, Keli Thorsteinsson, Kate met when she narrated a documentary on autism.
Non-verbal at the time, a poem Keli wrote contained the words ‘the golden hat’, and the issue touched her so much she created a foundation following the documentary" Lancome are donating $150,000 to the foundation as a result of the collaboration."

I was already in the market for a highlighter as my wintery skin needs a lift but traditional blusher seems to bring out those "20 years in the Australian sun" brown spots. Two good reasons to buy. When I explained to the girls in Sam McCauleys Greystones that I was the mother of 2 children with autism, they gave me a half size night cream as a gift!

The edit includes a magnificent rouge absolue for my blog sisters, Wolf and WendyB but I would encourage all of you to seek it out and support it if you can. Everyone loves a good lippie, or:

Kristie has also given a great rap to Grace App and the "iPads4Autism.ie" recycling campaign for Autism Ireland in her post so I would encourage you to go over and thank her.

Lancome have been in touch (the power of social media!) and are donating some beautiful goodies to be raffled at the Keith Duffy Masked Ball in aid of Saplings and Autism Ireland. I'm going (advantage of sleeping with a member of the IAA board) and guess who will be buying loads of raffle tickets?

xx

God Love Ireland!

2011-11-06T22:15:00.003Z

In case you hadn't heard, The Domican Family (aka; Boo, Bratty and Mr Hammie et al) appeared in a television documentary last week called "Life With: Autism"

It was part 3 of a series of programs which demonstrate that life with a serious condition can be just as joyful and rewarding as any other, sometimes more so. We took a risk taking part but have to say that while the experience of filming and being interviewed was quite stressful, the final result was wonderful.

Gracie in her little nest

If you are in Ireland you can watch it on the above link. If you are outside of Ireland you have to wait until we can get it uploaded on to something else. When you do watch it you will get to meet not only my children but my other half, who finally gets to tell his side of the story. It was so positive in fact that the press department of the TV company had trouble getting any additional media coverage for it. Seems it is easy to latch on to a hard luck story like: "My Autism Hell" but when a family are coping and getting on with life with two very challenging but brilliant children - the red-tops just aren't interested.

Anyway, they followed us around for 2 days at home and at school and as a result they followed us to Glendalough, the scene of many a happy forest walk en famille. Gracie actually had a mini-tantrum while they were filming, but the producers honored our request to leave that out as we did not want that that to be the "snapshot" representing us and potentially upsetting a family who had only recently been diagnosed.

Well today if you were in Glendalough, you would have caught the Directors Cut with as previously un-seen footage of Liam having a major meltdown....

Liam had a difficult summer, as many of our kids do and as a result I put him back on the Abilify - a medication which helps with impulsive and irrational behaviour. But it can cause weight gain and as Liam is a teenager with the appetite of a small platoon anyway, there are health implications. With the shorter days there are less opportunities to run off that weight safely, so I have taken him off it, for now.

Anxiety isn't always a rational thing and while Liam had been offered a good incentive for engaging in exercise; traffic and delays in parking at the Upper Lake had contributed to him working himself up to a bit of a frenzy as we were arriving. When we finally found a parking space I got Gracie out and was quickly lead off to investigate the chocolate opportunities at the kiosk; while Bill got Liam out of the car.

When Gracie and I met up with them on the edge of the car park, Liam was squealing and struggling with Bill as he tried to get him to wear his shoes properly before we got on to the path. I could see that physical strength wasn't working as Liam was "in the red zone"where rationality didn't figure. Bill being as strong as Liam was holding on but Liam was overwhelmed, he was frightened and his body was telling him to bolt. We were literally between a rock, a busy car park and and a rushing, freezing cold stream. Letting the boy run it off was not an option.

In practiced form we did a quick switch and Bill took Grace off towards the lake while I tried to talk Liam down. Please note that in these situations, the physical is pointless. Liam does not learn through pain. This kid has had his finger trapped in the centre of a DVD more times than I can count. (in case it happens to you, run it under the cold tap and apply moisturizer to the finger until it slips off)
If you leave him alone with a coke can he will alternate between getting his finger caught in the hole (this time you can use wire cutters while running it under the cold tap) and ripping the can apart with his teeth - resulting in a cut lip. Then he does it again. And again.

The only way to reach him when he is that stressed is through contingency. I make a reward contingent to the desired behaviour; which in this case was a promise to sit in the living room and watch "School of Rock" as soon as we got home from the walk. So I broke through the melt-down by asking him if he still wanted me to sit with him at night-time. He would calm for a second so I could hold his palms, maybe move in for a tight hug, and then he'd remember how stressed he was and start getting ready to bolt again. Bit by bit I began to calm him down and start walking, firmly towards the lake.

The whole time this was going on we were on a really busy path that lead from the car park to the walk to the Upper Lake. It was the first sunny Sunday in a long time and dozens of people were passing us as Liam squealed and pulled against me. We must have been quite a sight. I am 5'4" and weigh in at just under 9 stone. Liam is now 5' 6" and could lead Leinster Rugby out of the ruck, he is a sturdy fellow.

But nobody interfered. Nobody made a face or a disapproving noise or stopped to jeer at the kid who was "going mental" in a very public way. People just stood aside or steered around us and I was able to gain control of the situation quite quickly without creating a huge scene.

We are lucky to live in Ireland because in many other countries we would have been judged, mocked and maybe even vilified to a tragic degree. I know parents who have been in situations where the police were called when their child wasn't co-operating, and once when we were home in Australia, a stranger in a local coffee shop actually smacked Liam - for bumping into him in his boisterous way.

But not here in Ireland. In Ireland children are allowed to be seen AND heard. In Ireland you actually tolerate a good bit of eccentricity and are not so quick to judge or mock someone for being a bit strange.
As my Grampa, who is not Irish, has never been to Ireland but who inexplicably says;
"God Love Ireland!"
Because today it made a really difficult situation pass quickly and without incident. And so we live to enjoy another day - with Autism.

xx

In the news..again

2011-10-29T15:40:00.005+01:00

From The Irish Daily Mail - "You" magazine, October 29th 2011.
A few corrections: The kids were in state autism schools from 2002-2008 and I ran an after school ABA program with Saplings Tutors. In 2008 first Liam, then Grace were accepted into Saplings Rathfarnham where we started playing around with the iPhone as a communication device.
While O2 supported our development process and donated 6 iPhones, Steve was totally responsible for coding and listing the App on iTunes where it was approved on March 11th 2011.
And if you can collect 85 old mobiles you can trade them in for an iPod Touch Gen 4. (not an iPhone)
If you collect more you can even get an iPad - go here to get involved.h

what have I been up to?

2011-10-24T19:49:00.006+01:00

I need a Dollar Dollar, a ~~dollar~~ euro is what I need...

This is our Taoiseach (Prime Minister of Ireland) Enda Kenny and yours truly. I had just asked him for a few billion euros....

Nah, not really. I had just been awarded the Elevate program by Social Entrepreneurs Ireland which will give me up to €35,000 of mentoring and structured business support and I thought I would grab a pic with our gracious leader.

The three main winners of the Impact awards are to share in €600,000 of grants and structured support and the Taoiseach made a point of how inspiring they are in their respective fields.

Congratulations from me to the lovely (really lovely) Sean Love of Fighting Words Creative Writing Centres.

Niamh and Michelle from Women for Election (kicking unequal representation's arse) and

Micheal Kelly of Grow it Yourself whose speech made me want to go out and build a plastic tunnel in my backyard and start growing Bok Choi.

I also have to share with you the amazing work of Dara Hogan of Fledglings one of last years awardees who is making a huge impact already by offering early years education in some of Dublin's most disadvantaged communities. I got quite tearful watching the video of Dara's work. Look it up.

Next morning I was off to London to do some presenting and training with Grace App Communications. I also found time to to do brunch with fellow blogger Kate of Make do Style. We had a fine petit dejeuner at Laduree in Harrods which I highly recommend. Yummy pastries, jams and excellent people spotting in a cafe as pretty as a box of chocolates. We went for a walk around Knightsbridge afterwards and did a bit of thrifting. So nice to meet up with a virtual friend in person and find you have a lot to talk about.

Two hopeless Nespresso Addicts collared in Knightsbridge

So it was back to earth today, catching up on emails and coming up with Plan B for bringing Grace App Communication to the next level. (Plan A was winning a share of the €600K)

I'm still really committed to bringing the message of independent expression to everyone. My speaking engagements are starting to kick off (I was in London to do some of that) so while it was a bit of a disappointment not to win the big prize, I am in a great network of Social Entrepreneurs and with their help I will continue on my path to World Domination!

So I have got some plotting to do. In the meantime why don't you watch the SE Ireland Video - maybe YOU have an idea that could change the world?

Social Entrepreneurs Ireland, established in 2004, is a privately funded, not-for-profit organisation that believes that innovation and social change in Ireland will be driven by exceptional people with exceptional ideas. They have developed a support model that helps these social entrepreneurs grow their ideas from concept to reality and have invested over €3.7M in 142 social entrepreneurs to date. For more information about Social Entrepreneurs Ireland, visit www.socialentrepreneurs.ie
DCC are the flagship sponsor for the Awards selection process and provide critical funding and support to Social Entrepreneurs Ireland alongside other funders and supporters.

Two Steves who changed my world

2011-10-19T15:19:00.006+01:00

I was terribly sad to hear of the passing of Steve Jobs; before you ask - yes, I read about it on Twitter, on my iPad as I was having my first coffee of the day.
Yup, I'm an Apple Fangirl but unlike the many others who took a bite of Apple Artistry and found they wanted more, I came to iWorld by a different route.

You see I am the mother of 2 autistic children who have both had severely delayed communication and as a result, extreme behavioural challenges in their lives.
Both eventually learned to communicate their needs using "pecs" which stands for Picture Exchange Communication System. To put it simply; when someone is not talking they often develop other techniques for getting what they want. They might start by leading you to the fridge or cupboard to get them a drink or snack, but if they can't get your attention they can try grabbing, dragging, pulling hair or biting you or themselves. Your natural reaction to quickly get what they want reinforces the negative and pretty soon you have a very challenging and frustrated child.
The picture exchange system teaches them to hand you a picture of a drink, which you quickly reward and little by little you replace that negative behaviour with a vocabulary of different pictures for different things, all of which have huge value to the child. At the same time you are pointing to the picture and saying the name of each item in order to encourage the development of speech. My son learned to do this at age 4 and within 3 months he had started speaking without the pictures and no longer needed the prompts.

My daughter who is a year younger than her brother was introduced to it at Age 3. She took to it well and by the age of 6 had over 400 pictures in her vocabulary - but could barely say a word. Her pictures were stored in a book that I had to carry everywhere, or risk the return to tantrums and it was a huge commitment that was difficult to keep up.

Then I met my first Steve;
Staring out of the window of our car as we paused at the lights on the Stillorgan Dual Carriageway, I noticed a huge O2 advertisment on the side of the 46A. It was the iPhone but what grabbed my attention was the little pictures on what appeared to be a glass screen. And I wondered if it would be possible to put Gracie's pictures on that little screen..
I was lucky enough to meet the CEO of O2 at an autism event shortly after and blagged myself this wonder of technology with the little glass "touch' screen. I admit, I was afraid of it at first. I knew Windows and could do a bit of Word etc, but could not be described as a "tech" person in any sense.

However, the real wonder of it was that as soon as I had worked out how to turn those 400 pictures into jpeg, put them in an album and transfer them to the iPhone, Gracie could access them.
She didn't care about the ten years of research, development, prototypes, company takeovers and new CEOs.

All she wanted was a croissant and at the squeeze of a home button and swipe of a touch responsive screen - she could point to the picture and get one. Simple. Useful. Beautiful
Now instead of carrying a giant ugly A4 folder of crumb covered velcroed pictures everywhere, or deal with the tantrums if we didn't; we just had my iPhone. The pointing, the prompting and her developing vocalisations could now happen consistently wherever we went. And Gracie's world began to grow.

Many people would say that this would have happened eventually anyway without Steve Jobs Apple but I don't agree. Yeah, there were touch screens available and the technology to install stuff on them but they were draggy to use, the programs were expensive and inflexible and not very inspiring.

Steve Jobs was the one who brought the best out of the designers and engineers, who told them to start again when it wasn't beautiful, and useful and simple and perfect. Steve Jobs was the inspiration for the millions of fan-boys and girls and devotees who wanted to take this new world of Apps and become part of it themselves...

And that's where I met my second Steve; The (VERY) young iPhone games developer who was only 10 when Gracie was born, who got his first Mac for his 7th birthday and who read my email asking for help. He met me, listened to my story and seemingly intuitively interpreted my vision for a single app to replace that big picture book.
Steve Troughton-Smith coded and co-created the Grace App that has genuinely given her a voice of her own. Steve Troughton Smith was the first person to tell me about this "Tablet" thing that was coming that would be perfect for teaching younger children to use pictures to communicate without anyone ever having to photograph, print, laminate and velcro a picture to create a sentence board again.(And Grace App was one of the first iPad Apps in the store on the DAY that iPad was launched)

Yes, Gracie might have learned to talk using the old pictures eventually. But my interest, energy and commitment were waning and we were not prompting her consistently where ever we went.
Yes, Gracie might have learned to take photos and ask for things independently on another device, but the navigation and interface were lacking in everything we tried up until that first iPhone - and she couldn't make a sentence with the pictures.without the dedicated App that was named in her honor at the suggestion of Steve.
Gracie might just be saying "Drink" and "Chocolate" and "TOAST" instead of;

"I Want - Vegemite, Toast, 8 Triangles, (and) Apple - Drink"

But the best part, the part that made me sit in my car and cry as I listened to Steve Job's Stanford Address on the radio on Thursday morning ; was when I was in Australia in February for my Grampa's 90th birthday and calling home to check on Daddy and Gracie back in Ireland.
Daddy held up the phone for Gracie to hear my voice and for the first time, after 11 years of waiting I heard: "I want - Mummy"

Farewell Steve Jobs. We will miss you but thank you for inspiring Steve Troughton-Smith who along with all the other inspired and gifted "Steves" will continue what you have begun. xx

©lisa domican October 2011 - First published for The Antiroom

Me at the United Nations World Summit Awards in Abu Dhabi demonstrating Grace App.

Vale Steve

2011-10-06T08:43:00.001+01:00

Without Steve Jobs, Gracie might not be calling me Mummy. He truly changed our lives. Rest in Peace Steve, we will miss you. xx

I won!

2011-09-27T08:39:00.002+01:00

Women Mean Business made me their 2011 "Big Idea" Award Winner for Grace App Communication.
Women Mean Business is a magazine for business women in Ireland and the event held at the Shelbourne Hotel - very nice; was attended by some real movers and shakers in industry.

My super friend, the lovely "Mrs Doyle" collected the award at 2:30 pm and gave a lovely speech on my behalf - while I queued to get off our Aer Lingus flight at T2 Dublin.

But Mr Hammie rushed me to the Shelbourne where I caught the second half of Dragon's Den Hilary's keynote to the Women who Mean Business.

I had tea afterwards with Mrs Doyle (of course, Tea Tea Tea!) and a lovely catch up. Lovely goody bags too. Will post links etc later but for now, thank you all xx

Last day of our holidays...

2011-09-25T18:23:00.002+01:00

We are going home tomorrow, after 3 weeks of rest and relaxation. Grace is delighted to see the suitcases, Liam is looking forward to seeing his favourite tutors at Saplings. Me? I could live here. For another month at least..

Zoom in for a look at a rasta guy with a rasta dreadlocked dog. Seriously.

Using the front facing camera without my reading glasses. Holiday hair. Nice.

Ever so kooky cat lady and husband. The cats all came running from everywhere when she arrived.

Very nice husband with beer in Rustica Italian Restaurant on Carabeo - which overlooks the Balcon. Nice nephew was babysitting back at Casa Roberta.

Bratty Balcon

2011-09-22T18:55:00.001+01:00

I am sitting here, where are you?

2011-09-20T18:37:00.001+01:00

If there is a better place to download an update & restore an iPad - I wanna know about it.

Liam Domican

2011-09-19T18:40:00.001+01:00

WORDS

Words.

A word is good or bad.

Capistrano - another reason to love Nerja

2011-09-18T11:27:00.002+01:00

I'm posting this from the new Blogger App for iPhone so apologies for the layout.
It's nice to be able to live blog though- give you a feel of why it is possible for a family with 2 quite severely autistic children to enjoy a holiday in the sun abroad, with plenty of local culture.

The "urbanisation" where we rent a house (in Ireland you would call it an estate) is called Capistrano Village. There are lots of whitewashed stone terraced houses with gardens, access to a beautifully landscaped communal pool and a lovely pool bar. I prefer a communal pool as private pools are rarely fenced and i don't think i could sleep knowing one of the kids might wander in.
There is a little supermarket and a large part of the village is paved and pedestrianised- so I can let go of little hands and let Boo & Bratty run free.

We book privately through an owner's agency called Spainaway - choosing whatever house suits our timing. We try and go out of season and fly on quiet days, never a Saturday to Saturday for us. My only stipulation is safe windows - and preferably an older house that makes use of natural breezes. We stayed in a modernised one 2 years ago and it was boiling hot, will never do that again.
With our own garden & sun terraces - we only walk down to the pool to swim and then walk back to lie in the sun at our leisure. The kids have their own space in the house and their own stuff so they are pretty content.

A top tip this year was getting a couple of local sim cards for the iPads.
After suffering from YouTube withdrawal, Gracie is now enjoying Teletubbies in Danish and the "Columbia tri-star home entertainment previews" repeatedly for only €3 per day with Yoigo.

Huge thanks to Pat Phelan from Maxroam for that advice which came via Twitter.
If you are travelling with autistic kids and iPads, get a maxroam sim and save yourself a lot of hassle. I can take Liam out to cafes with wifi but Gracie has limited tolerance for change so we need broadband access at the house. It's a small thing but it makes her feel less homesick and that equals a better holiday for all of us. And a note to Henry at Spainaway: get your owners to install broadband. We would pay extra for the privilege and probably stay even longer.

xx

Via Nerja

2011-09-16T19:05:00.003+01:00

Some iPhone images from The Balcon de Europa during the "passagio"-
I don't know the Spanish word but in Italy passagio is the time in the evening when everyone walks around and has the craic in a central place like the Balcon. I love it.

I can sit with a glass of Rosato and a dish of olivos while Boo uses his little netbook N130 to surf the internets (free wifi) to his hearts content. He is so happy and secure; I can even walk around a bit to take photos.

You get oldies, families, tourists, locals, A LOT of kids dancing around and trying to pet the cats. Yes. Cats.

I think the cats own the Balcon. Vale. xx

When I asked these ladies if I could take their picture they agreed- but wanted to see the results. After I published and went back to show them they said: "Vale vale!" pronounced "var-lee" - it means "okay!" I love it. Xx

Mummy Time

2011-08-16T09:33:00.015+01:00

The folders and Laptop say: "Social Entrepreneur"
The Havaianas say: Bludge Time!

In case you didn't know, I was recently selected by Social Entrepreneurs Ireland to be one of their 8 finalists in the Social Impact Program.

By the end of October 2011, three of the Social Impact Finalists and their projects will be selected to share in €650,000 over 3 years in investments, grants and professional support.

Pretty serious stuff. A chance to take Grace App to the next level in my plans for world domination and making sure you all understand that EVERYONE HAS THE RIGHT TO SAY WHAT THEY WANT... Muhahahahahhahah!

But it aint about the chaching chaching - it is actually a process of mentoring that takes you through your current business model - in my case "Making it up as I go along" to something that investors will be interested in, in order to expand your social impact.
Even if you are not one of the Chosen Three - by the end of the process you are fitter, more professional and much more focused on what you need to achieve your goal(s)

As you can imagine - it is really hard work. Especially in July and August when you have two special needs kids who are out of school, out of routine and bouncing around in the 16 hours of daylight that are so helpfully provided at this time of year. Oh and did I mention I work from home??

Luckily I am also part of the CreateIreland.ie programme for Digital Start-Ups and Fred from CreateIreland very kindly organised a hot desk for me in the Digital Cube in Dun Laoghaire.
So, for a couple of hours a day I get out of the mad house and get through my tasks without being interrupted 57 times an hour. (like I am now)

My Hot Desk is on the second floor.

gah, where was I?

Oh yeah, yesterday, I finished the first draft of the O.C.A.P or Organisational Capacity Assessment Programme and nearly fell off my chair at the final questions about "Work/Life Balance" ....

Yes, these guys really care about the quality of life of their candidates - they know that resilience and sustainability are equally valuable in the Social Entrepreneur, but boy have they tested the theory this summer!

I have to confess that during this process I have been so busy balancing the work bit with the Mum bit that the Lisa as an individual bit has just disappeared. Lisa as someone who walks down the street on her own and has a sandwich and a mochacino alone has vanished.

A nice place to sit and have a mochacino - if I had a mochacino....

She will return next month when we take our holidays, hopefully.. but I've not even been much of a fun mum to be honest.

So today I am going to leave the xl spreadsheets and powerpoint business plans and just 'Be' with my Boo. We are off to the Zoo which is a nice place for a long walk without cars and some scripting. Boo has a list of Animals by Continent and Habitat in Alphabetical order for us to follow and I get to walk around in the fresh air a bit.

Will post you the photos later.

And now a word from JesseJ herself....

Beautiful Pictures - From HP Photosmart

2011-07-28T15:20:00.006+01:00

This is a review of the HP Photosmart eStation that was loaned to me to try out in my capacity as a "Mom-blogger" - It is my choice to write about it because I like it - if I didn't I would just say nothing!

So I guess you are wondering, why would someone dedicated to eradicating the printed picture cards that her daughter used to use and replacing them with Apps be asked to test out a printer?

Well the answer is - there is no escaping the needed for printed visual supports in Autism.

Sure an App is super dooper when you are asking someone to tell you what they really like. It is also really handy for helping them to organise a familiar task like getting dressed, even handier when you are giving them token reinforcement, or creating a detailed social story.

(These are Grace App, First, Then and the iReward and My Pictures Talk by my fellow moms with apps)

If I can get away with using an App for something I will. But when there is a chance that said schedule is going to be thrown at me then I prefer it to be made of paper or cardboard.

So yeah, I still need a good printer. As a Special Needs Mum-preneur I also need to be able to scan and quickly copy a lot of stuff. I've actually won wars of appeal based on my ability to keep and re-produce paperwork. Seriously. (read this to learn why)

But to be honest I really thought we had reached the stage when printers couldn't do much more and were often cheaper than the ink it took to run them- perhaps soon to be a gift with purchase?

As you might have guessed, the HP Photosmart eStation All in One C510a has kind of changed my mind. (click link for specs)

It makes copies in color or black & white with one click whether your computer is connected or not. It prints documents and flyers from your desk-top really nicely too. And it scans stuff that you have signed and need to send back to people (which I have to do a lot)

But the best bit is that it can receive all print jobs via email. So in a house with 3 laptops (one Mac, two PC) 2 netbooks and 2 iPads - we can all access the printer, without even being in the same room.

Using the iPads with the printer is especially handy as like a lot of people I have many many photographs stored on my laptop in no particular filing system.

Opening them to look up one that I need is an exercise in trying to remember what I was thinking about the day I saved it - and I often end up just taking a new photo.

However if you have an iPad you know how appealing the photo albums are, and how easy to use. Especially handy if you have a lot of very similar looking photos but want to choose the one that:

A) Shows the App/iPhone/iPad

B) shows Gracie interacting with the App/iPhone/iPad

C) makes me look young but genuine

And it is much easier to do that from this screen,

which you then click and send as an email directly to the printer

Like this.

The printer comes with a little Zeem thing, an Android Tablet that is detachable for surfing the internet and using apps etc. I'm not mad about it to be honest as I am such an Apple Head I find it difficult to navigate - took me weeks to install my gmail account on it. However my autistic son Liam loves it.

But I am very fond of the printer. Will miss it when it goes back. xx

Good Coffee, Wine and Chocolate - The Why of the Social Entrepreneur...

2011-07-28T10:32:00.000+01:00

I recently got accepted into the Social Entrepreneurs Social Impact Program and, as a result I was invited to join the finalists at a Residential Workshop in Louisburgh County Mayo.
I actually wrote: “Good Coffee, Wine and Chocolate” on my "Dietary Requirements" form for the weekend.

And it made me realise why I do what I do.

You see Social Entrepreneurs do not wake up and jump out of bed one day shouting:
“I’m going to be a Social Entrepreneur!” and then start looking for a Social Issue to Entrep about.

Nope, most of them just find themselves noticing or often personally facing a social issue and instead of complaining - they come up with an idea to solve it.
But it is not just an idea - it is usually a niggling itch that just won’t go away until they sit down and come up with a plan and start scratching it.

Well, that was my experience anyway. I’m a fussy person, I like to have what I like in the way I like it - so I particularly identified with my daughter Grace and frustration at not being able to get what she wanted, in the way that she wanted, when she wanted.

My own experience is that it is best to be clear about your preferences and not be out of sorts when you are only offered things you don't particularly like. And I realise that being autistic must feel like that all the time. With limited communication and understanding of social cues, it can be difficult to get people to understand your preferences, which must be very frustrating.

When I am presented with instant coffee for example, I feel very uncomfortable about drinking it. (I can barely type the words instant coff-ee without making a face, GAH!)

However, in most social situations it is considered very rude to refuse it - so I just leave it to go cold in the cup (and suffer caffeine withdrawal) or discreetly make my way to the kitchen and tip it down the sink while furtively making a cup of tea.

In other words, rejection, then helping myself to find what I really wanted would be the option.

Remind you of anyone?

In order to attend this residential workshop I was given the opportunity to choose what I really wanted in writing - making it clear. Yes I realise that the organisers were expecting us to notify them about Peanut Allergies or a decision not to eat anything that used to be gamboling around the hillsides before being arranged in a convenient rack on our plates.
But good coffee is important to me. I don’t function well without it.
I was delighted when I got to the wonderful house where we were doing the workshop, to find strong sensory cues that I would be getting an excellent brew of freshly ground coffee: An empty packet, a good smell and the tell-tale plunger pot. I relaxed and accepted and was able to concentrate on the task ahead.

It was a different story at the B&B. I don't know if you have ever been to an Irish Bed & Breakfast but they are run by families who live on the premises and offer exactly what they say; A bed, a shared bathroom and in the morning, breakfast.
You are totally dependent on the Irish Landlady; a kind of substitute Mammy who offers you tea and cupcakes on arrival, 15 different kinds of cereal in the morning, a full Irish breakfast with fried everything and when you get in at midnight, she will be there behind the door with more tea and some freshly baked scones.

There is no chance to make a visual request. No access to the kitchen to help yourself and if you are nervous about coffee quality; no way of making sure it will be okay. So I meekly accepted tea while refusing the 27 different versions of breakfast (I only eat chocolate and fruit before 11am) and went on my way.

I'm pretty sure the landlady didn't like me much. She probably thought I was rude for not accepting her hospitality and piling up the toast, bacon and eggs while letting her pour me more tea. I could easily have become isolated and withdrawn in that environment. But she would have seen a much more relaxed and sociable me over in the Big House at 10 am with my coffee, some chocolate and a keen mind ready to learn.

Again, does this remind you of anyone?

Given the opportunity to access my preferred choices I found it easier to relax and integrate with my surroundings. Denied of access and independence I preferred my own space.

Because I needed this:

And this:

I'm not being critical of the Landlady - she is an Irish Mammy after all and probably believes that if she wasn't there the world come to halt as everyone stared at the empty tea cups and unplugged kettles in dismay.

And I was amused to see members of our party were very comfortable with it - but I am sure they were still capable of looking after themselves if need be. (Being Social Entrepreneurs and all)

So that is why I came to create The Grace App. I know how it feels when you can’t get what you want, and I wanted to make sure my daughter Grace was always able to express her wants. Being able to share it with other kids and adults is a bonus. Being able to convince the world that all people with a communication disability deserve the right to express what they want as a priority would be even better.
If that makes me a Social Entrepreneur or as I like to say it
“A Snum-preneur” (Special Needs Mum Entrepreneur) - well I’m proud to be it.

Everybody deserves the right to say what they want. My Aim is for them to get it.

© Lisa Domican July 2011

Pictures and Words

2011-06-30T14:51:00.004+01:00

Last weekend as you may have read here I was at The Autism Show in London.
It was a big deal; my first trade show as a Snumpreneur (Special needs Mum Entrepreneur) and I paid for it all out of my savings. I also schlepped 2 suitcases of display gear across London from Heathrow to the ExCel Exhibition Centre in Docklands on The Tube and DLR. which meant 3 changes from West to East.

And when I got to the Exhibition Centre my stand looked like this:

That is the two suitcases that I dragged on and off the tubes and up and down lifts as I changed from the Piccadilly to Jubilee line and then on to the DLR.

BUT OH BOY WAS I EXCITED!!!

Thanks to some wonderful help from my friends on Twitter, like @nmcgivney @GreenClouds4 @ian_kenefick of Millitech Digital - I had a very professional looking "roll up" poster with photo provided by The Ireland Funds photographer Aengus McMahon.

Having spent every spare cent on the Stand hire, accommodation and transport costs it made a huge difference to have professional copy written, a commercial standard art layout and great value on-time printing. I also got the screen shot graphics from my developer wizard Steve Troughton-Smith

And a lovely quote from My friend Petunia

When it was time to leave the building I had made it look like this. You can see my giant iFoam there from the wonderful www.madeinhollywood.ie - who specialise in giant props that look real.

Next morning I arrived bright and early and added a few more personal touches. A little stack of business cards, some A4 flyers of my poster art for people to take with them.
I even had a little book of pictures on the desk for people to look at "while waiting" with some flyers from my fellow Special Moms with Apps

We have a pact to "Banish Velcro" from the lives of people with Autism (and their parents)
Good Karma Apps do a wonderful App for making visual schedules and Grembe have several good ones for Social Stories, Choice Boards and Reward Charts (token boards)

I added some treats for demonstrating the App in Action and set up a VDU screen connected to my iPad2. I hoped that people would see it when passing and be encouraged to stop.

Then I snuck out for an iced latte. I had barely slept the night before; worried that no one would come to my stand...

where I could see there was a nice little queue forming at the entrance to the show...

Doors opened at 10 am

So I rushed back and got ready and then...

PHEW!!!!

I seriously did not stop from shortly after 10 am until Jane Asher arrived to give a key-note in the afternoon in the auditorium area. My business cards were gone by 11 am. My sweet little pile of colored Grace App flyers had gone by lunchtime. I had to put up a "back in 10 minutes" to rush down to the loo, then the business centre and make more copies!

I decorated the stand with A4 sized glossy prints of Gracie using the App in different situations. Absolutely gorgeous prints that I did myself using the HP Photosmart eStation printer I am testing at the moment.

You can connect it and print normally from a computer with USB cable. Or use "the cloud" to email to the printer itself directly. Very handy when most of your stuff is on an iPad.

The beautiful A4 sized prints told the story to anyone listening - Grace App is discreet, age appropriate and enables this little 11 year old girl to be out in her community asking for chicken nuggets or a crunchie bar like any other kid - with an iPhone.

I was also able to tell the story of how I came to be such a fan of the Otterbox Defender Cases - as each photo included a case that had failed and cost me a lot in repairs. I had some samples of Otterboxes on the stand that I could have sold 50 of by the end of the day. People were writing down the make and taking photos of it to order when they got home. (Amazon or Ebay are the best value I find)

(something to do with my flinging my iPhone 3G on the ground trick* )

Next day was just as busy but I had my lovely friend Katy from Limehouse there to help me - she even helped people search for and download the App while there. So thanks to everyone who helped me with this huge step in my business development. It has taken me about a week to recover (remember I had to clean all the double sided sticky-tape off the stand and schlepp all the stuff BACK to Heathrow
afterwards!) but it was an excellent experience and is going to be invaluable at helping me to plan out the next step - becoming one of Ireland's newest Social Entrepreneurs - so stay tuned. xx

*Disclosure - it is my choice to demonstrate how Grace drops her own iPhone everyday. If you choose to buy one it is up to you how you use it.

** pinched some photos from ABA Ireland Facebook Page and the Lovely Casdok - Mother of Shrek

http://www.hpshop.ie/products.asp?partno=CQ140B%23617

Are you Going to the autism show? ExCel London 24-25 June

2011-06-20T18:27:00.000+01:00

I will be there in all my Smumpreneur glory - (Special Needs Mum-Entreprenuer) on Stand D5 in the "Communication Matters" Zone.
Entry is only £12 (cheaper if you book in advance)
There are a lot of safe, fun activities to do WITH your autistic kids - and the fun starts on the Docklands Light Railway - on the Friday at least.

If you are a member of the National Autistic Society you probably know about this already - So please share it with all your friends in the U.K and tell them to come and meet me. I'd love you to link to me in your blogs, facebooks and tweets as much as possible too. This is a really big deal for me to be showing at a major Trade Show for the first time, and I want to meet as many people as possible to spread the word about Grace App.

Hope to see you there, Love Lisa xx

The 12 Steps to Being an Autism Parent: making amends

2011-05-28T17:57:00.005+01:00

Remember my Steps to being a special needs parent? - recently I had cause to return to the theme and examine the following three steps:
Step 8. Made a list of all persons we had harmed, and became willing to make amends to them all.
Step 9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
And 10. Continued to take personal inventory and when we were wrong promptly admitted it.

For years now I would have been in the camp of wanting everyone else to make amends to me. Sorry but when you find out you have not one, but TWO kids with intensive behavioural needs you very quickly find out who you can count on and who will spectacularly and hurtfully let you down.

After 10 years - I have learned to let go of some of that feeling.
Some of the people have apologised.
Some of the people have made up for it in other ways.
I guess some of them have realised what a selfish mongrel they were until they had their own children and realised how difficult it was with normal kids, and what they would do to protect their children.

There are one or two who have never acknowledged what a let down they turned out to be. But then they are in denial about a lifetime of inappropriate behaviour - me and my kids are just one chapter.

I’ve also learned to let go of some people. I would call them acquaintances now as they were never really my friends.
Burn me once, shame on you. Burn me twice and I will never have anything to do with you again.

Recently however, I had cause to think about how I might take inventory of my own misdemeanors.

I’m being careful about this because I do not believe in the “I’m sorry but....” apology where you go on to explain that you were totally justified in doing the wrong thing and hurt the person all over again.

If you are still angry say nothing until you can calm down and apologise properly - for what you did. Explain how you got that way, but don’t use it as an excuse.

Rather than losing face, a good heartfelt apology can make the person you harmed respect you even more. When someone knows they messed up, recognises the harm and wants to make up for it I think they are brave, honest, constructive - and above all admirable.

My epiphany came during the long Easter Holidays in April when I was having a tough time with Gracie. She does not do well in the holidays as she likes structure, routine and somewhere to go each day. For the first week she did surprisingly well and I thought a new visual schedule explaining that there was no school each day was helping, so I was tweeting about it, as you do.

In the second week Gracie lost it and there was an increase in repetitive obsessive ritual behaviours where she will she bring you something, like a Dvd or book, and have you hold it in a certain way about 25 times before she can calm down enough to put it back in her room. - Or open then close a window, adjust a mirror, a quilt or turn the tv on and off.
After a week of staying home with just Mummy, (all our Angels were on holiday) she was going into the red zone of OCD. The only escape is to put her her room and lock the door, which I didn’t want to do (yet) so I was letting off steam on twitter. There are other parents in exactly the same situation for the same reasons and it helps to have their empathy.

Then someone who I had been following for a short time sent me a direct message asking if I had read a book by a Chiropractic physician who “treats” the symptoms of ADHD.

Pause.

This might not be in the Top Ten Things not to say to a parent of a child with autism - but it should be.

No I did not read the book about the Horseboy/Playboy Model /Ayerverdic/Homeopathic/Snake Oil /Bat whisperer who cures children with autism.

And I am not going to.
Because I find that ten years of attending courses and listening to people who actually work with autistic children and use evidence based behavioural interventions and teaching methods that are individually tailored to my children's needs actually work.
It is just that my children are people and from time to time we all need a break from each other.

And I responded to this well meaning tweeter along those lines. I was actually super super angry but since my internets were not working properly I was unable to add any more choice comments so I just packed up my computer and took the two of them out to scream in the woods for a while.

When I got back I had a message of apology in my in-box. I told her not to worry about it - I was just letting off steam but when asked what would make up for it I flippantly suggested chocolate.

2 weeks later this arrived from Australia.

I expected a couple of Cherry-Ripes, which are my favourite Australian Chocolate. I got cherry ripes, and more cherry ripes and dig down for even more cherry ripes. I also got a meticulously chosen selection of other exclusively Australian treats. The box was almost too big to carry with two hands and had been AIRMAILED all the way from Australia.

She also blogged about it here - with an explanation as to why she had made her well-meaning suggestion and it is probably the most effective apology I have ever heard - and accepted.

And it got me to thinking - who have I wronged with my rage? How often have I been wound up tight as a coiled spring waiting for some poor soul to say the wrong thing so I can explode.

Because rule one of Autism Parenting is NOT to get mad at your kids. It is NOT their fault they have a disability which affects their ability to process sensory input in every aspect of their lives.
No matter what they do you always forgive them because you have to. We evolved that way.

Instead I practice a kind of mental displacement where I get mad at "The System" that lets us down, or "People who should support and help us" or eventually some poor bystander who looks at me the wrong way when I am being prompted by Grace to hold her hair for the 15th time.

Or a well meaning child behaviour consultant who remembered a book that someone had once told them was helpful - and shared it.

So here is my apology: it's not you, its me. I'm sorry I hurt your feelings. I'm sorry I was intolerant. I'm sorry I am annoyed and jealous of your easy life, your capable kids, your ability to plan for a future where they will be independent and may even end up looking after you.

I'm sorry I'm such a crazy prickly person to be around sometimes. I'm also sorry it has taken me this long to realise what to say when I get an unhelpful suggestion. This will change from now on.

Chocolate and Wine helps.

xx

For Nathalie - A Class Act.

Travels with Autism Redux - Time to Prepare!

2011-05-06T15:11:00.006+01:00

At this time of year you might be lucky enough to be planning a holiday. And some of you, thanks to a negative experience in the past might be having trepidations - I have some advice that might make it easier and more enjoyable for everyone.

Firstly, don't feel you have to stay home. Because if it rains for 10 of the 14 days you have booked, you may find yourself cooped up in a holiday house with no broadband, no cable and the prospect of hanging around the local Supermarket for entertainment.

D'amusements do not work for people with high sensory needs, and they are expensive anyway. And Long walks in the Rain followed by an Irish Coffee in a local pub are for romantic weekends away. Not a family of 4 with no clothes dryer.

So take my advice and go somewhere sunny for your holidays. And fly!

1. Two Words: SELF CATER!

You will all be much happier.

Where I come from, Full Board is something that you surf on at the beach, so I find it perplexing to hear anyone complaining about taking meals in a busy dining room full of people who do not understand their child's behaviour. - Give up on having "The Dinner" at midday and just grab what you need at the supermercado, fill the fridge and let everyone eat when they want.

There are literally hundreds of great websites for choosing a villa or apartment to book yourself.
We use Spainaway or Owners Direct but go on line and shop around. Great Bargains, Great Flexibility in travel times (traveling on a weekday is much quieter) and in this climate you can make an offer to the booking company for an even better deal.

We stay in Urbanisations with a mixture of terraced houses and villas, all with gardens with a high stone wall and lockable gate. Leave the windows and doors of the house open, put on a video or dvd and you can lie on a Tumbano in the sun in the garden while the kids amuse themselves in the house. Add a garden hose and an inflatable wading pool, fridge full of snacks and you need only leave to go for a dip in the communal fully fenced pool. Then back to the house for more lounging.

You do not have to shop and cook every night. The great thing about holidays outside of Ireland is that you can feed the whole family in a restaurant for less than it costs for a dinner for two here.

Look out for outdoor cafes where a mess will be not only tolerated, but expected and the other diners will be families as loud and raucous as yours - maybe more!

You can also get excellent take-away like pizzas or asian/curries and my other half likes to take our son out for Tapas in the evenings, then bring home a take away for Gracie and me. Dishes go in the bin!

And if you book accommodation and travel independently you can organise your own transfers, by hire car or taxi and not be tied to waiting around for a tour bus that will stop at every resort en-route. Many of the booking companies will recommend or even organise transport for you. Just ask.

2. Prepare: With Social Stories,

If your child can read then write a story on the computer, double-spaced and with pictures to represent each stage of the journey. Make sure you build in rewarding activities to do along the way.

1. Drive to the Airport

2. Take the bags to the desk and get a boarding pass, then go to McDonalds!

3. Then go to the big gate and take off your shoes…..etc

Your child will go through each boring step in order to get to the next interesting step.

You can read the story together several times before the trip and ask teachers and other carers to read and talk about it too.

Finish with a photograph of the villa or apartment that you will be staying in, which is easy to obtain from the web. And the mantra “Holidays are Fun!”

For a pictorial social story go here to the Autism Support Website Guide to planning your journey.

You can even download a story to your smart phone or iPad - here and here

3. Packing: Bring home with you!

I am not mad, I just mean bring a few choice items that the kids particularly associate with home such as their favourite characters on duvet covers and pillowslips.

When you get to the villa or apartment or even hotel room, go straight into the bedroom and put the pillows in the pillowcases and a sheet inside your covers.

In the early days I actually took them straight off the bed so they smelt like home - important for our sensory sensitive kids.

I also take a couple of story books, and as many kids magazines as they have (CBeebies, Peppa Pig or Disney etc), as you can leave those behind at the end of the holiday.

Bring familiar toys to scatter around and look for 'Beanie' versions to save space when packing. Choose one toy each for the plane and put the rest in the hold.

Also pack as much of their favourite snack foods as you can - if you know you can't get it in spain. We bring vegemite (of course) and Cadbury's snacks for Gracie and then ration them. She does have to eat local foods too - but it helps when stressed to have something familiar.

4. At the Airport - Get the Card

If you are traveling with special kids, it really helps if you have an Autism ID card, as it can be hard to explain to someone that these beautiful children have special and very challenging needs.

Remember, the airport staff would rather facilitate you than face the risk of a meltdown, so please have a thick neck and ask for help.

Top Tip: Book with a good airline that offers seat reservations and priority boarding for special needs.

Cheap fares are fabulous - for singles and couples with no children, NOT FAMILIES!

It is supposed to be a HOLIDAY so spend a few extra bucks and avoid nightmares.

Online check-in is also a fantastic idea. Less queuing. Happier kids.

When it comes to security, please be considerate of other travelers and have all your gear packed into the recommended sized bags. Ask your partner to empty pockets of coins and offer to remove shoes as you approach security.

Open bags and remove laptops and make sure liquids are in regulation see through bags as requested. Be cooperative and grateful for the help and thank everyone afterwards.

5. Bring an activity to entertain them at the airport AND on the plane.

Laptops, Mini Dvd players and the iPod/iPad and iPhone are our friends!.

Pre-load your iDevice with movies and apps before leaving and keep them as a surprise for maximum amusement.

Go to the gate early so the crew can board you ahead of anyone else, so don’t dillydally in the shops for too long. However a lot of walking prior to boarding is a good thing..

Top Tip: when Booking Your Seat Allocation: - Mark Your Man!

If traveling with 2 adults and 2 kids, don't put the kids in the row of three and allow your partner to sit across the aisle.

He will ally himself with the other passengers and put on the "Headphones of Invisibility" that block out all sounds of turmoil in the seats across from him while you struggle with the kids alone.

Book 2 on 2 with the Seat Kicker of the family (there's always one) seated behind a family member. Match one parent to one child from the moment you reach the airport and stay on them until your reach your accommodation or home. Transfers must be agreed to by both parties and only in case of emergencies like going to the toilet.

If you can book the back row even better - you'll have 'em surrounded!

Top Tip: Bring a hard cover copy book and colored markers to draw on until after take off when you can bring down the tray table . Don't assume that you have to wait until the seat belt light is off before switching on the Portable DVD players. When the plane levels off and the Flight crew are moving about the plane - ask.

The sooner you get the entertainment started, the better the flight is for everybody

Just be sure to incorporate the need to switch off the entertainment, into your social story.

6. On board food, drink and other stuff.

Bring a selection of small snacks individually wrapped to hand out during the flight. My daughter will only drink one brand of apple juice in a carton - and with the restrictions on liquids so we bring these in a clear bag through security with Doctor's letter explaining her condition.

Top Tip: If you are considering pre-flight sedatives, get a doctor’s advice as Phenergan and Valium can have the opposite effect. And test all meds at home 1-2 days before the flight.

Go easy on the fizzy drinks or salty/sugary snacks as they can induce hyperactivity or nausea. Bring a towel or sarong/pashmina to use as a blanket or clothes protector in case of spills.

Also; anti-bacterial hand gel is useful as the toilets can be a bit manky in the airport and on the plane. And Bring Wipes!

Light clothes in layers are best - as the children will not thank you as they swelter at the baggage carousel in Malaga in their best “traveling clothes." - but bring a light jacket for the homeward journey.

Sandals are great as you can get them on and off easily if your feet ~~smell~~ swell. (just don’t wear socks with sandals or you will be stopped by the fashion police)

7. Safety.

Make sure the children have I.D, on their person. God forbid they should get away from you, but if they do, be sure they have their name, age, condition and your mobile phone number on their person.

I dress the children in bright tee-shirts with the name of their AUTISM school in large lettering. Stripes are also very easy to see from a distance and easy to describe if god forbid, you do need help to catch a runaway. Liam also has a mobile phone on an "Irish Autism Action" lanyard around his neck. I ring it if I can't see him.

Wearing the school tee-shirst really helps with "the Look" that some people give you, and makes strangers a lot kinder.

8. Enjoy yourself when you get there!

The great thing about holidays in Latin countries is that children are very visible. Spanish children seem to be more indulged and we often find ourselves in the happy situation where the boldest children in the café are not ours!

But follow your child's lead. Day trips and "adventures" are to be avoided as you need to establish a routine that makes your special needs child feel safe and comfortable. Make a visual calendar that shows each day and where they can expect to be - with the trip to the airport on the last day.

If your kids are verbal, teach them to say Hello, Please and Thank you in the local language and prompt them to use it wherever you go. Tip well, use the same cafes or coffee shops regularly and you will find you are welcomed back and indulged next time.

Give each other a time out where one parent looks after the kids and the other goes shopping or for a hike or Tapas and beer. Then swap.

Because that really is the main thing. To E.N.J.O.Y. yourself."

spinning the wheel... for Mr Thorne Does Phonics iPad App

2011-04-30T11:46:00.001+01:00

and the winner of the Mr Thorne Does Phonics iPad App review code is Cynthia. The icons were allocated in the comments on the previous post. Video uploaded live to Facebook. I did not have the attention span to install a randomizer widget - so I hope this unscientific method suffices!

Everyone else - buy the app! its brill.

xx

Holiday Giveaway - Mr Thorne Does Phonics iPad App

2011-04-26T21:58:00.001+01:00

Many people are surprised to find that both my kids can read. Yes, they are autistic as the day is long but Liam has been reading, AND comprehending what he reads since he was 3.

One of Liam's favourite games when he was little was reciting the alphabet; As a Hanen exercise he would give me eye contact in return for me saying each letter. He also loved to request that I draw an animal for each letter and as a result I think I know every animal in the world that starts or includes the letter X!
When he began using picture exchange I had to make a card to represent the word "Zoo" as we were going there on a "lets stimulate some language" trip. As you can see my drawing of a lion in a cage was so bad that I knew he couldn't tell what it was - but the first time I showed it to him, he very clearly said "ZOO" - and I knew he could read.

I can also tell that Gracie knows the order of letters in the word "Elmo" and how to type them into a search engine; so it will give her a drop down box to scroll through and find a website or YouTube clip.

However - Gracie is not so hot on the sounds of letters. And she needs a lot of help with this as the Phonetics of the alphabet are very important for developing her oral motor skills and improving her articulation.

So I was delighted to see that Mr Thorne - of the very popular "Mr Thorne does Phonics" YouTube channel has developed an App for iPad.
It is basically everything that is already available on his website but with touch screen usability, ready for sharing off-line wherever and whenever you like.

I find that sharing a computer based activity is much easier with an iPad - you are not fighting for control of the mouse or touch pad and you can encourage hand on hand navigation of the pages, fading your support when needed.

Mr Thorne is a primary school teacher so he really knows his stuff and how to teach it. Unlike a mainstream classroom however, you can tailor the lessons to suit your learner, and pause or move on to suit their pace.

It also has the all important "Blue Wiggle/Spencer/Sportacus" factor where the presenter is quite nice to look at.

I have a code for you to download Mr Thorne Does Phonics Free.

Leave a comment and I will draw you out of an actual hat tomorrow night.

It is only 6 bucks anyway so if you like the look and you don't win, buy it anyway. Great little learning tool.

xx

In the interest of full disclosure I should point out that Mr Thorne already gave me a free download but if I didn't like the app I would have just said nothing - ignoring all his emails. I get offered a lot of JUNK to promote on this blog and I ignore most of it.

Testing Times: Nespresso vs Teenage Boy, Day One

2011-04-22T11:31:00.001+01:00

Day one and the first thing I heard was Liam asking for the vacuum cleaner - never a good start to the day as it means there is a huge mess in the kitchen.
However, knowing I could have a quick coffee before I had to tackle the mess I actually bounced down the stairs ready to face anything.

Including this ↑

Ironically caused by this ↑

The little coffee pod I left out last night ready for my first cup. Alanis Morrisett couldn't write this.

Thankfully the lovely Sandra at Nespresso's PR packed a selection of extra pods for the mother of the Teenage Boy (In the background preparing his next mess)

But fortified by this - I was able to clean up calmly without any fuss.

Important when you are facing into a long day of 2 autistic kids vs one parent.

The machine is a Krupps Pixie with 19 bars of pressure. The coffees are going to be a choice of these:

Gotta love a drink that comes with a colour chart like a box of choccies!

Today I had an Arpeggio - intense and creamy but a bit cold because I did not follow the instructions and make a first cup with steamy water to tip out. The second was "Rosabaya de Colombia" and boy it hit the spot. I used to drink lattes then feel a bit sick from all the milk. With crema this good you only need a tinsy drop of milk.

Yep, I am loving this. I have a feeling that the machine I am reviewing is one of the dearer models - the cheaper ones I've looked at online were only 15 bars of pressure. And some of you might think that the parent of special needs kids should be saving their money for therapies and diets etc.
But hang that, I NEED good coffee and I need it at home BECAUSE I have 2 autistic kids. I don't have time to be messing around with inferior technology.
Speaking of which, where's my Dyson? It appears Liam has finished his popcorn....

xx

Invasion of the pod people

2011-04-19T14:34:00.001+01:00

It is Easter School Holidays and the Kids are off school....

The tally so far is brand new sliding shower door: Nil
Liam: 1.

So he has lost Wednesday Treat Day.

He is out for a walk trying to get a star for Friday Treat Day

As you can imagine - I am a bit strung out at this time of year. And I need my coffee more than ever.

Mr Hammie and I are daily espresso drinkers and the average affordable consumer coffee machine is made for people who only use them on the weekend. (and drink that satanic poison INSTANT coffee during the week, Gah!)

Our coffee machines therefore get about a year's use in 3 months - and tend to die at 13 months - just outside warranty!

Our latest - the much loved Gaggia Dopio retired exhausted late last year.

So today I am taking it to live on a coffee farm where it can chase espresso cups and steam away to its hearts delight. (Sshhh - that's what I am telling it. I am really taking it to Bray Recycling Centre)

At the moment we have a temporary replacement that is a bit crap to be honest. I won't say the brand as it was so cheap. So I am treating myself to Costa's several times a week. (at least) - while I "save" and survey what machine to get next - very bad economy.

However, on the weekend Mr Hammie and I got a 24 hour release pass and stayed in a hotel, which had one of these:

And not since the launch of iPad have I felt as in love with a piece of machinery! It only came with 4 of the little pod yokes so I didn't get a chance to figure out how to make the kind of coffee I like. But I really enjoyed the little lungo I did make - in a highball glass! and Mr Hammie was suitably infused and enthused with the espresso.

So I am really keen to try one out. The best part was the neatness and effiency. I often leave it to after the school run to make coffee with our current machine as it is such a hassle! and I know that's why I often steer the car towards Costa's on the way home. It would make ME more efficient to get that first kick of the day quickly and not be fannying around Greystones Village half asleep as I contemplate the cake stand at Costa's.

It would also eliminate this.

This does not live in the garden either. It lives on the kitchen counter where Mr Hammie bangs the coffee filter arm to remove the last cup's used coffee grounds every morning, scattering them everywhere.

Oh I would not miss that one bit.

So, Who of you are Nespresso devotees? What do you recommend? What is the minimum I should spend to get good crema on a Cafe Lungo or Espresso (don't need a frother)

Please give me your feedback as I step out now, to become a pod person......

Talking to Red Symons of ABC Melbourne Radio 774 in March

2011-04-04T14:15:00.000+01:00

Red Symons was the lead guitarist in Skyhooks - a very cool aussie band in the 70's. He then went on to be the "Simon Cowell" of a talent show on Australian Television.

It was lovely to meet him in person and explain where and how the Grace App came about.

I am just awful at film editing, but I hope you can enjoy these home movies mashed together on iMovie which was the easiest way to put up the MP3 to share.

I seem to have a thing for Radio Presenters who used to be in bands....

Grace App IS free for World Autism Awareness - and updated

2011-03-22T11:57:00.008Z

The app is set to free again. And updated!

Celebrate World Autism Awareness Day Download Grace App for Free on iTunes - while it lasts!

Many kids with autism or speech delay use pictures attached to a board to ask for what they need or say how they feel. These boards are stored in a book which they have to carry around with them. Even if and when they begin to say a few words, they may be difficult to understand and so they rely on a growing picture vocabulary which can become very unwieldy. As the mother of a severely autistic little girl with a few words but many pictures, I wanted to keep supporting her speech development by prompting her to use her own voice - with the support of her pictures anywhere.

And that is where the Grace App for Autism came in.

Grace App replicates the picture exchange system by storing a basic picture vocabulary of Foods, and things the user might need or want with a function for making a sentence.

It can be used on iPhone, iPod Touch and iPad. On the smaller devices you tilt and the cards are enlarged for you to point and read together. iPad works on Landscape or Portrait view with the pictures big enough to be read easily without enlargement.

There is also a facility for finding, taking and sharing photographs of all the other things that you may need or want. You can sort the pictures into categories, delete those you don't need and teach the child or user to add their own independently-:

Giving them power over their communication choices.

It is a simple and portable means of prompting communication and mutual understanding -

which leads to trust.

Grace App was created with the support of O2 Telefonica and developed by Steven Troughton-Smith.

Thanks to the support and feedback of the wider Autism community, Grace App has been improved and we are delighted to be launching a major update.

And to celebrate World Autism Awareness Day on 2nd April, we're setting the App to free. Anyone who uploads Grace App on the day will own it forever and will get all updates free.

For more information and to download the Grace App System Manual, please see our website www.graceapp.com

You can also support the drive for collecting old 3G iPhones and iPods/iPads at The Thinking Person's Guide to Autism -including our own MyCharity Link

Everybody deserves the right to say what they want. Listen and you will also get to know what they like and need, and maybe get to know them a bit better.

Down Under Again

2011-03-15T22:46:00.003Z

Got back from Aus last week. Forgive delay in posting as I managed to smuggle a cold back into the country - in my own head.

So a little photo diary of the trip:

First stop as always was Singapore. We flew Singapore Airlines and I simply cannot overstate how important it is to fly with a good airline when you have special needs kids. We get our priority seating choice, we get priority boarding. We get treated like Royalty when we do board and Liam gets to settle comfortably for the hour or so it takes everyone else to board and secure their hand luggage. We get our child meals and we get the worlds most fantastic economy service. Yes, I wish that they would fly direct out of Dublin - but they don't so we go via London Heathrow or Amsterdam..

This time I booked night flights and that was also wonderful as I got a good nights sleep prior to leaving and a full day to fuss around with suitcases and prepare. Also good to arrive in Singapore in the evening and get a good nights sleep in the Beautiful Crown Plaza at Terminal 3. Imagine this after a 16 hour flight:

"With a link bridge from Terminal 3 at Changi Airport, you'll reach Crowne Plaza Changi Airport in seconds. We can escort you from plane to hotel. You can check in to your outward flight from our Lobby and leave your luggage with us. Book for a night or restful daytime stay"

Lovely bath, lovely room, lovely internet access for Boo. Plasma TV and for Boo; non-stop American Reality show

We checked out at 2pm the next day but since we had another late flight I checked our bags into the Lobby and caught a cab to our second home in Singapore, The Zoo.

Liam is watching a trained Hornbill swoop across the auditorium, in the "Rainforest Fights Back" animal show. In a country that banks billions in De-forested Unethical Trade Earnings - this was irony beyond belief.

It was also totally Craptastic!

Very Urban Chinese Malaysians pretending to be indigenous tribesman. I think they work in Starbucks usually. I was cracking up from the first beats - and actually cried laughing when the "Bad Guy" who was dressed like a member of a Color Gang appeared with a chainsaw - I definitely saw him working in the Apple Store at the Airport later....

When I got to Melbourne my first goal was to get to my Grandpa Mick Johnston's 90th Birthday and have it go smoothly..

Which it did thanks to my nephew Deco who sat with Boo in a corner of the RSL where he could peacefully play with his computer, iPad, eat Pringles and drink coke to his hearts content, while I caught up with all my sisters, cousins, nieces, nephews, uncles, aunts and Gramps and Grandma.

While still in Ireland I organised with the lovely Jamie at Spirit of Carlton - my Gramps' lifelong Australian Rules Football Team, to get a card signed by players past and present:

which I presented to Gramps at the party. Click on the image to enlarge.

While in Ballarat I was invited to be interviewed by ABC Statewide Drive, and the Melbourne Breakfast Show with Red Symons. (my Little Sister Gab set these up - My new P.R.)

Which meant a trip into the Capital to visit the Australian Broadcasting Corporation Studios on Southbank:

(Home of the Bananas in Pyjamas don't ye know)

After that I walked along the Yarra and marveled at how much Melbourne has changed.

And not - these clouds yielded rain, but it was sunny enough to tan and really chilly at other times. Very typical Melbourne day.

It really is a little slice of Europe - The Block Arcade Coffee shops between Collins and Bourke St.

Where the staff greet you as you pass - I kept looking around to see if they actually knew me..

But I forewent the charms of inner-city espresso and caught a train back out to my Grandma's in Altona for a lovely quiet visit - and chat.

And these:

Chocolate Royals!

After that I met my GBF - Micheal, under the clocks at Flinders Street for a walk, a drink in a fancy pub, some shopping and a lovely dinner. But since he's not a blogger we didn't take 100's of photos of ourselves - we just enjoyed each other's company and talked A LOT.

It was a rather perfect Melbourne Day. Which put me in mind of this:

My thanks once again to my Big Sister and her husband Len, Deco, Harry (for giving up his bed) and Amanda for making Liam and I so welcome.

School of Rock

2011-02-14T13:52:00.002Z

I have a confession to make;
I just cried at a Jack Black movie.

No, not at how bad "Gulliver's Travels" was (which it was) but at School of Rock when the kids play:

I love this movie, and watching it again on Film 4 I just realised why.

You see, when I was in High School in the 80's - I was kind of in a band.

It's okay, nobody let me sing. Or play anything really. But I wrote a song and my English/Music/Video Making Teacher Don Kerby liked it enough to make everyone in the class with any real talent play and record it.
He was in a band too.

Another Lisa - Lisa Widgery, sang lead vocal. Robert Bell was on Lead Guitar. My friends Helen and Mandy played flute (one of the few flute solos of the 80's) and I may have got to hit a xylophone during the recording at Redwood Studios
I cannot be sure that my few donks of a xylophone made the final mix. But the video made by the Video Making Class of.. I wanna say 1994? was on Glen Ridge's Channel Six Music Show.

I don't know where any of those people are now. Well, I think Don Kirby is still teaching Music and Drumming at Ballarat High.

But that's not what this post is about. It is about why watching a bunch of acting school kids in a Jack Black movie making music, being talented, defying their parents expectations...made me cry.

Because I realised that in the 25 years since I wrote "Cold Day" and had it played to the school assembly of Ballarat High School - my expectations for my life have adjusted.

The music that is sweetest to my ears is that of my daughter Gracie, saying:

"I Want App-ell" :

And then spending almost an hour cuddled up playing with Sesame Street Apps, Youtube clips and the Drawing Pad- with loads of language.

Or my son Liam, waking up and telling me it's "Valentines Day in Saplings School." No preparation, no prompting, no anxiety either. He just knew it is the 14th and he knows that there will be a craft theme. (I will add picture of Boo's Valentine later tonight)
And it's all good.

So we change, we adjust and we get on with it. Its only sometimes that it catches me out.

Happy Valentines Day xx

Just because it rained after you put the washing out - doesn't mean you made it rain..

2011-01-25T13:45:00.002Z

I have been wary of discussing a certain ex-Medical Doctor and his faked and fraudulent evidence to prove that Autism was caused by toxicicity of anything a parent may have done to protect their child from preventable diseases. Not because I ever believed it - no Sirree! I have two beautiful and very healthy children who happen to have Autism.
But because any discussion of the above topic will usually bring on a hail of Trolls whose only mission in life seems to be to believe just about anything that cannot be proved. The Earth is flat, and it was made by a Guy riding a Cloud in 7 days, and You Know What causes Autism - they believe it.

I can see where the myth starts, and for that I forgive the parents who were bamboozled into believing it.
People talk about Autism "kicking in" suddenly at the age of 18 months or so. They also talk about "Degenerative Autism" which is not a real thing. What they are experiencing is actually increasing visible coping behaviours that come as a result of lack of intervention.

I mean, if you don't do anything about an ingrown toenail - you can probably expect it to get worse. But get it diagnosed, get it treated and you will find that your toe starts to improve. And it will not have to be chopped off.
By the same token, get a diagnosis, get a referral for the appropriate evidence based interventions to support sensory issues, communication and life skills - and you will find that "The Autism" stops 'degenerating" - and you can see your child as an interesting little person who is worth getting to know and understand.

Because if you see your child as a person to be respected and understood, you are less likely to spend their valuable resources of tolerance on quackery and uncomfortable "cures."
A few years ago I was trapped in a Parents Meeting and forced to listen to a woman telling us that that the reason her son giggled on the way to school in the morning was because of "all the yeast"

When I could see by the state of her that it was probably more to do with her shoes. And hair. I mean, if this was the way she dressed to present at a Parents Meeting, imagine how she looked on the School Run?
I would be pissing myself laughing every morning too.

Of course, when this woman had put her son through Homeopathic Yeast Extraction Therapy or whatever hogwash she was promoting (I chewed through my own leg to get out of the meeting so I missed the rest of it) she would have Credited the snake oil for her son's "cure" - and completely ignored the months of incremental improvements achieved by his dedicated and patient teachers and tutors in that school that he giggled his way into each morning.

It is easy to try and believe that whatever you have invested the most into; is what has worked - but the truth is often somewhere in between.

And you should also be ready to accept that a lot of it is down to YOU spending a lot more time learning about your child and getting to know and understand them.

And nothing to do with the Dolphins, Diets, Mongolian Horsemen or Plinky Plonk therapy that cost you €5,000.

Now I have to go put out the washing - Or not, it looks like rain! xx

Smoothing the way

2011-01-04T14:14:00.003Z

The parable of the chest of drawers.

Every year around the start of the cold damp weather, I have a drawer that keeps sticking.
It's in a Tall-Boy bureau I keep in the attic, very close to the skylight so I guess when I forget to close the skylight, some moisture gets in and warps the timber a bit.

This year it was my sweater drawer.

At first, I just tried to yank it out with force.

I brace my foot against the base of the unit and yank it out with two hands, jiggling it until it gives.

Then I tried a quick fix with a bit of candle wax rubbed along the draw runners and more yanking. The runners were not the problem so I then tried to get around it by pulling out all the sweaters one by one and put tights in there.

Then I could just pull the tights out of the small opening. Of course it eventually reached the point where I didn't know what was in there and I kept running out of clean tights. Not useful.

I went back to force and after falling on my backside one day with the drawer still firmly wedged in the dresser, I decided it was time to sort out the problem - properly.

First, I did an analysis of the situation, removing all the drawers one by one and stacking them on the bed. Then I ran my hands up and down the inside of the unit where I discovered the single plank that had warped inwards, ever so slightly.
It ran the length of the dresser so one drawer was going to become all of them if I hadn't finally done something. Further reducing my access

So I got out my trusty Black and Decker Mouse Sander and smoothed down the warped side of the timber making the situation a lot easier.

Step by Step I kept fitting in each of the drawers slowly working out where the resistance was.

Turns out that some were an easier fit than others so, rather than:
force them where they didn't want to go, I put them where they were most comfortable.

I still had to do a little bit of sanding down on the sides of some of the stickier drawers and then
I was no longer having to force things.

Finally I had all the drawers back in place and I began to rearrange my clothes into where I wanted them.

I decided I was going to make things easy for myself. So I picked out all my shorts and summery things and put them in a storage bag - why take up time and space on something that doesn't really matter at the time?

My smalls are in the top, tights next as I need them every day in this weather, then my make-ups and pretty things are at seat level as I have just set up a dressing table beside the bureau (luxury!) and then my sweaters and tees etc.
Jeans in the bottom drawer as I rarely wear them in the winter.

Gracie came in halfway through my putting away and she began to help me, bringing over armfuls of tights and sweaters. You see, she really appreciates order too.

And this is where the parable is explained.

Gracie never used to dress herself for school. She was capable of it as she would come downstairs in amazingly put together outfits with teeshirts on backwards and inside out leggings, when
She Wanted To Go Somewhere.

But for school I would have to just dress her myself with her passively sitting or even lying there ignoring my verbal instructions. If it was not a school day, and she did not know where she was going,
I would often have to dress her against her will, forcing the clothes on as she objected.

While this may seem to be the solution when they are small. forcing our kids to do anything physically is a road to now where. Firstly, because you are taking their power and the powerless have nothing to lose. So they kick and fight back harder and harder until one day they are bigger than you and you can't force them anymore without one of you getting hurt.
And people wonder why Autistic Teens and Adults can end up in Care Facilities under restraint - because all their life everyone just kept pushing them around and forcing them to do things without choice, until all they have left is their physical strength and behaviour.

So I did not want to go there. I could see by Gracie's daily school reports that she was doing well with her dressing tasks, so I decided to copy what they did and introduce some visual supports.

First was the analysis - what steps did I need to include? I knew she had the skills to put on clothes, but she needed support with putting them the right way round, in the right order.

So I got her a large dresser and made sure each garment group had its own drawer where everything was clean and the right way round.

Then I printed cards with the Grace App clothes pictures on them, laminated and velcroed them to each drawer.

Yep, I still use printed and laminated pictures.

I also adapted Gracie's wardrobe to suit the season. She has a simple uniform of a longish dress over a long sleeve tee and leggings for winter with socks, boots and a hoody for warmth on the really cold days.

Why make her fuss with accessories and jeans with zippers etc when it doesn't suit her needs?

Then I put a corresponding schedule on her iPhone using the same graphic pictures from the Grace App which included her final grooming tasks like brushing hair and putting in a bobbin.

Every morning I pick up her iPhone from beside her bed; where we charge it overnight, and open the schedule with her, using her finger to point at each step while we say it together.

The difference is incredible. With each point she gets the garment from the drawer and puts it on. I forwards or backwards chain the minimum of support, which just means helping her get started, or finishing it off the right way, according to the skill the garment requires.

Without the schedule she is like a stopped clock, looking at me blankly while I try to tell her which garment is next.

With the schedule she even tolerates hairbrushing which she really hates, in order to complete the schedule.

I don't have to force it.
Because this schedule is my agenda, I don't use the Grace App itself. Yes, Grace App has First, Next and Then cards to use when explaining a quick change of plans.
But the Grace App is designed to be controlled by the user, it is Their Agenda.
I am not going to use Gracie's "voice" to tell her what to do.

I also want to be able to store and back up these regular schedules so I had a look around for a separate app.

First I tried iPrompts which came very highly reccommended by a number of friends. It comes with a pretty huge vocabulary of images that you can use along with your own to save and store many schedules.

It is kind of fiddly to set up and has a lot of functionality that I didn't really need. (for the price) But it works well and certainly did the trick for Gracie.

She points to each step and moves the screen along while I prompt and she says the word. (we practice vocalisations at every opportunity)

However, I recently found an app that suits my needs better in the excellent First and Then by Good Karma Applications. At only $9.99 (less in euro) it is also more affordable and a great add on App for the parent who is using the phone for other things.

It only takes one step to add your own customized or saved pictures and took me about 4 minutes to set up once I had it installed.

Janine from Good Karma is a parent of an austistic child and fellow Mom with App - And she has given me a promo code for a free download of the App to give away here on the blog. The code is valid in ANY country so just leave a nice comment explaining what schedules might mean to you and how you plan to use it.

Be honest if you haven't bothered with them before and you might get a chance to try this one out for FREE!

I will judge and award a winner at the end of this week - 7th Jan.

Look forward to reading your entries. Big Thanks to Janine and to all the Moms (and Dads) with Apps for their support. Here is to a Smooth 2011.

xx

International m-Learning & Education award for Irish iPhone app

2010-12-28T19:34:00.000Z

From the Excellent Prosperity.ie Blog

Originally Published as an Ezine on  8/12/2010 

Written By Elaine Larkin

An iPhone app developed in Ireland has been awarded a WSA World Summit Mobile Content Award this week in Abu Dhabi.
Lisa Domican, a mother of two children with autism, travelled halfway across the world to collect the award for the Grace App for Autism which was recognised alongside apps like he Guardian, Marks & Spencer and Angry Birds.

Organised by the International Center for New Media (ICNM) in Salzburg, the World Summit Award Mobile is a global initiative within the framework of, and in cooperation with, the United Nations World Summit on the Information Society (WSIS), in collaboration with UNESCO, UNIDO and UN GAID. The WSA-mobile is the only ICT event worldwide, which reaches the mobile community in over 160 countries and is able to promote the best mobile content and innovative applications out of this huge selection.

Developed by well-known app developer Steve Troughton-Smith, with input from Domican its creator, the app was inspired by the needs of Domican’s daughter Grace.
The Grace App for Autism helps autistic and other special needs children to communicate effectively, by building semantic sequences from relevant images to form sentences.

The WSA World Summit jury found: “Grace serves as a superb example of real-life benefits that only mobile technologies can bring to enhance the learning process.” It also said that “the application’s grounding in real-life experience, its usability, and simplicity and, at the same time, customization/personalization features are what make Grace an excellent example of mobile technologies’ contribution to the learning process, one for others to emulate.”

Domican explains that before the Grace App for Autism was developed she had pictures Grace used to communicate loaded onto the photo album of her first iPhone. “Gracie was using it but the correct way to use Picture Exchange is to put the pictures in a row because you’ve got three or four pictures on the screen. Because no one had an iPhone three years ago no one really knew how I could do that.”

The making of an internationally-recognised iPhone app

So how does one find someone to do that? At the time, explains Domican, she was doing social media for Irish Autism Action and regularly read Damien Mulley’s Fluffy Links blog which mentioned Steve Troughton-Smith, a very successful – and young – iPhone app developer. Domican contacted him via Facebook. “I described the project and he said ‘this is a good thing, I want to do it.’

”He was able to develop the app the way Domican wanted it to be developed. When they met, Domican had Grace’s big plastic A4 folders of pictures, what she had tried to do as regards a portable book and had also drawn what she had thought of in diagrams. “I was kind of embarrassed I didn’t have a big enough piece of paper so I went into Boots and got a Boots shopping bag and ripped it open so it covered the whole table.

He said ‘this is perfect because I have to have everything joined together so I understand what you want.’ He went home that afternoon and created the prototype.”
They had a long way to go from there – for example they had to source original artwork – but it was a quick start. The graphics had to be tested on children with autism through trial and error to ensure each image portrayed to them what it was supposed to.

Organic growth of an app
Then the app managed to grow organically through Grace’s use of it. “When we set up the prototype and Gracie was able to put her pictures in a row, I realised I could use the iPhone camera to add pictures on the spot. I would go out of the app to use the camera, take the picture and then be able to move it across.

“Gracie got hold of the phone one day – she’d been watching me do this – and she had found an old toy on eBay that I had donated to charity about three years before, it was a Teletubbies toy. She was holding the phone I could see that she was trying to take a picture. I realised if the picture was inside the phone she knew that I knew she wanted it. She could have just pointed to it on the screen but she was putting it in the app.”

Another little girl did something similar in her trial of the app so Troughton-Smith incorporated the feature to take photos from inside the app.

This facility teaches children with autism trust that they can express themselves and that a parent understands what they are expressing.

The Grace App is available on iTunes and a fund has been set up to help bring iPhones and iPod Touches to children with autism whose family cannot afford to buy them. To learn more about how you can help see:

http://graceapp.com/
http://www.mycharity.ie/event/i_want_my_iphone_for_autism/

Grace App - For Autism. My Youtube video from the U.N. World Summit Awards

2010-12-19T11:01:00.001Z

Video produced by Stansilav Miller for the World Summit Mobile Awards 2010

So, where have I been? ABU DHABI !!!!

2010-12-08T21:11:00.002Z

Receiving a World Summit Award - Mobile for m-Learning & Education from Dr Peter Bruck

at the Gala event in Abu Dhabi 6th December 201

My Fellow winners from right to left (I am in the Arab World!)

The Team from BBC Janala - Bangladesh, Sophie from Tickle Tap Apps - Canada,

Dr Peter Bruck from WSA with yours truly giving a speech, The Boys from Drona - India who are behind Dr Peter and Shadi from Hesabi (which means "My Math" in Arabic) from our host country, United Arab Emirates.

Rather than competitors my fellow winners turned out to be extremely encouraging and supportive and very very good company for the last 5 days. Thank you WSA for choosing Grace App and giving me the chance to be here.

and now, it's time to come home. xx

Five Powers of Awesomeness for Super Special Parents

2010-12-04T00:46:00.002Z

Found out that someone else is using "Extreme Parenthood" as a theme for Special Needs Parents finding their power. So I'm gonna go back to an old favourite - Using your special powers.

Like all super heroes you have to go through turmoil to find your true awesomeness as a special needs parent. But when you do, you can wear your all in one Lycra jumpsuit with pride.

Here is a summary of how to get there. Ripped off from my own, "12 steps" with abbreviation to 5 in the spirit of my own favourite power - impatience!

I will list my own 5 powers of awesomeness at the end. I want you to comment and add yours.

Step One: Admitting you are powerless

The first, is to admit, to allow yourself to believe that nothing you did caused your child's diagnosis to happen. That you had no power to stop it.
My other take is to do the opposite to step one.
REALISE your own power. Once you get through dealing with the shock and have time to adjust your expectations, you have the ability to become your child's best advocate and consultant. You will have to call on resources that you never thought you had, and develop such strength and stamina in the face of the challenges you are about to face. And all of it will be real.

Step Two - Came to believe that a power greater than ourselves could restore us to sanity??

Not necessarily “A Higher Power” in a religious sense.
But if you can employ the basic principle of the golden rule
"Do unto others as you would have them do unto you" Put good out into the world and then have it come back to you when you need it.
So the “Higher Power” therefore, is that of our COMBINED efforts to manage and support our child's disability.
You gotta have friends. You gotta network. You cannot do this alone.

Reach out, ask for help and when you are ready (it can take 2 years) go out and do some good in the world yourself. You will have learned a lot and have plenty to offer. But for now you need to let the others who have gone before you help.

The best diagnostic, therapeutic and educational services are always parent driven. There is also an informal network of support groups lead by parents and if you need it, formal

Parents who have gone before you, who have fallen into the traps of waiting for non existent services, of pursuing the false gods of expensive treatments.
Parents who know how awful it is to hear the news and walk out of the clinic with that piece of paper that confirms your baby isn't perfect.
Parents who will never tell you to "offer it up" or indeed give you the old "God Help Ye" and "Sure, you'll be grand, you have your OTHER kids"

Please reach out, relinquish absolute control and accept the help that can restore you to sanity.

Step Three:
Made a decision to turn our will and our lives over to the care of a
"A higher power" as we understand "them".

This just means that you cannot control everything. A lot of people will be happy to let you if you have that tendency but they will also be quick to point out where you have failed – so don't try to do everything yourself.

Be prepared to turn some of your will over to relevant experts and follow what they suggest.
Not just folks in white coats with clip boards and degrees, but folks who have gone before you and tripped over; and are telling you to watch out for that pitfall as you pass by now.

You don't have to give ALL your will up. A lot of the stuff you learned from being a parent/brother/sister/auntie or babysitter will apply. But you will need to re- learn some of it and adapt it. And for that you have to learn to listen and change a bit based on the experience of others.

Step Four: Made a searching and fearless moral inventory of ourselves.

Shortly after my kids were diagnosed I was watching the news one night and saw an image of refugees, who had sailed halfway around the world in a very small boat, being taken on to a large commercial tanker. Mums, Dads, even very small Children being passed up a gangplank to safety and hopefully a better life.

At the time I felt quite keenly how vulnerable they were, and yet how resilient they had to be to get into that boat and survive until rescued. And I got to thinking of what we all might be capable of, given the circumstances.

You see, Autism Parenting can put you in an extreme situation. So I would have some understanding of the levels of inner strength you have to call on in extraordinary situations. You learn things about yourself that you shouldn't have to. But you also learn to call on the most incredible strength and tolerance. If you have it.

So look inside yourself, look for your strengths but don't be afraid of your weaknesses either. If you can see them you can look for help. And focus on what you can do. Just be honest about it.

Step Five: Get a Sponsor!

Just like AA there is going to be someone further along the road to diagnosis and treatment than you are. You can only take in so much information at once so making contact with someone who can tell you what you need, ...

Some resources: www.autismireland.ie

www.autismsupport.ie

www.facebook.com/lisadom.irishautismaction – A "virtual" support group

And when you are ready, reach out and be someone else's sponsor.

My Five Powers:

1.Facetiousness
2.Tenacity
3. Impatience
4. Determination

5. Sulking. (if the above 4 don't get me what I want)

What is Autism? from my point of view.....

2010-11-16T18:20:00.000Z

I am not a psychologist or behavioural specialist or a Psychiatrist.

(I'm not Elmo either but he is here for a reason)

So, I am not going to talk about the triad of impairments or assessment scales etc etc.

What I can tell you is that Autism is a sensory disability in which everything a person sees, hears, feels, tastes and smells is distorted.

They may see every strand of hair on your head individually with more detail than a dandruff commercial, hence the need to push your hair off your face.

They may taste food in individual components that make the slightest change to the recipe seem like an entirely different food.

Touch can be too light to feel or too intense to bear, or both!

And sound most unfortunately can be very distorted, either because they hear everything and cannot tune in to what’s important, ie. your voice, or because they only hear the higher sounds or the lower sounds that are in their environment.

There are a myriad of variations on these “Unders and Overs” and no two children are alike. (Believe me I have a sample of two!)

So, imagine if you like, that having autism is a bit like being in a very busy foreign capital city where you don’t speak the language and everyone is too busy to give you directions.

You can’t read the street signs and you cannot understand what people are saying to you, or even pick up on any kind of pattern in the words they are using, as everyone talks too fast.

The traffic is loud, it is really hot and you want a drink; but you don’t know how to ask for it and nobody can understand you.

Eventually you are going to recognise which shops are likely to have drinks for sale, but you will probably going to feel more comfortable going into a place where you can get it yourself.

When I travel to places where I don't speak the language, I quickly learn the written word for supermarket (Alimentari, Supermarche, Supermercado)

And the sign or word for Bathroom:

However, it takes me a long time to pick up on what people are saying as they speak their own language so fluently with an accent, that can make no sense to my untrained ear.

So I go where I can get things for myself

until someone has the time and patience to teach me "Please may I have THAT thing - Thankyou!"

That is how our kids feel.

That is why it can be really hard for our kids to say their first words, but really easy for them to type "Elmo" into a search engine on the computer!

And why when they need something, they lead you by the hand to get it, or climb on things to get it themselves, rather than asking you for it.

And they are often not going to see the point of learning to imitate you speaking.

(my in laws have been going to Spain for about 30 years and have NEVER spoken Spanish once)

You See: When a child with autism looks at you out of the crib, they are being bombarded by such a range of sights, sounds and sensations that they are not going to pick up on your reactions.

They may appear to have picked up a few words, which they use randomly, but will not necessarily; notice your reaction to the words.

A typically developing child will realise that you react and praise the first time they chance on a sound like "mamama", and do it again. The child with autism may be distracted by the fantastic prism the light is making through the window, or the pins and needles sensation they get whenever you lift the quilt off, or the sound of the leaf blower down the road which you cannot even hear.

Anyone who has tried to carry on a conversation in a busy room, with several people at the same table, with perhaps a band playing or some kind of noisy sport playing on a widescreen above them, can imagine how difficult it is to focus and pick up on what is being said.

Then multiply that and add fear and anxiety caused by not knowing how long you are going to be there, and where you might be expected to go next.

Now imagine that the people you are trying to listen to have started using signs or subtitles, a visual cue that you can follow while learning the sounds. The t.v is turned down or off. The band have gone for their break, and the loud mouthed guy roaring at the football has gone home.

Slowly you will begin to pick up on a pattern to the language, and equate certain sounds with getting your needs met. You can repeat these sounds: "Coke!" or "Beer!" and someone will bring you a refreshing drink.

"Pizza" and "Chips" get you something nice to eat. Suddenly you are finding this talking thing a bit more rewarding, worth repeating.

That is how we must breakdown the skills our kids need in order to communicate, so they can learn.

But they don't all like Beer and Chips.

Some of them want the t.v turned back on; to Thomas the Tank Engine or Peppa Pig.

Some of them will want to listen to the band again, and some of them will be more interested in sorting through or tearing up the coasters.

The point is that it will take intensive analysis to understand what is important to each one, and how to use that to get them to learn all of the skills they need to participate in the world, as independently as possible, on their own terms.

I myself would be delighted if my local pub gave up showing Football, and instead put on a little Charlie and Lola or Arthur, but I suspect the other patrons might object.

However, you could probably come up with another reward to get me to participate in the social engagement,

Originally posted by Lisa Domican to Irish Autism Action Blogspot - on December 8th. All text is copyright.

Irish iPhone App for Autism to be honoured with United Nations World Summit – Mobile Award for e-Learning and Education

2010-11-12T22:42:00.001Z

Irish iPhone app “Grace App”, conceived and created by Lisa Domican, a mother of two children with autism, and developed by Steve Troughton-Smith ; with the support of O2 Telefonica, will be awarded the United Nations World Summit – Mobile Award for e-Learning and Education. Grace App chosen was chosen by a jury from the best mobile contents and applications out of over 400 nominations from nearly 100 countries.

The World Summit Award Mobile (WSA-Mobile) is a global initiative to select and promote the world’s best in mobile content and innovative applications within the frame work of the United Nations.

The Grand Jury of 20 internationally recognized experts selected the global winners from over 400 nominations from nearly 100 countries.

“The Jury members hail from all continents and they worked to award visible great m-content, no matter whether it originated from,” explains WSA Chairman Prof. Peter A.Bruck. “The World Summit Awards therefore represent what is top on the global plane.”

The App was designed to replicate the existing Picture Exchange Communication System used by parents and educators of children with autism – which allows them to build sentences using a book of laminated pictures attached to a board by Velcro. As the child learns new words through pictures, they are added to the book, reflecting the child’s growing vocabulary. However, while the existing system is very effective in the home or classroom, it is not very portable for everyday situations outside of these settings.

The Grace App which is available for iPad, iPhone or the iPod Touch is more discreet, portable and convenient in public situations. It supports Independence, Consistency in Communication and Social interaction for the user.

“This is an extremely important project to me, and I am honoured to have been recognised by the United Nations World Summit,” said Lisa Domican. “For many parents, this is a new opportunity to give their children a voice. I would like to thank O2 Telefonica for their support and Steven Troughton-Smith who developed the app for the iTunes App Store worldwide.

The App has already won an Irish Web Award 2010 for best mobile app.

Grace App was nominated by the National Expert for Ireland; Martin Casey of Arekibo Communications, a prominent Internet Consultancy.

Martin says "Grace is an extraordinary product created with passion and determination. It stands out as a brilliant combination of technology and innovation with real purpose. It's wonderful to see its success in the WSA awards and reiterates its brilliance."

Lisa will travel to be presented to the world at the United Nations WSA-mobile Winners’ Gala, Conference and Expo in Abu Dhabi from 5 to 8 December.

Grace App is available for download from the iTunes store.

For further information, contact Ger Kenny (My Publicist)– 087-2488393

By the way, I am flying to Abu Dhabi with Ethiad - Direct from Dublin. I am looking forward to checking out the service for future trips to Aus with Liam. And I am totally open to the idea of upgrade. Just sayin' xx

Happy Halloween!

2010-10-31T10:45:00.003Z

If only......

2010-10-25T23:36:00.000+01:00

Irish Webs Awards 2010... WE WON!

2010-10-22T19:46:00.002+01:00

Yep, Grace App was joint winner of the Best Mobile Application – Sponsored by O2

Of course - I couldn't even have entered without the magical work of Developer

Steve Troughton-Smith

That's me, along with the lovely Vinnie Coyne with his winning Eirtext app and my

Made in Hollywood Giant iPhone 4

(yep, my mascara was smudged. They were calling me Halle Berry afterwards)

It was an excellent night and I would like to thank all the organisers and generous sponsors,
And Mr Damien Mulley.

Big thanks to the host Rick O'Shea who was very supportive when I was dissolving into buckets of tears waiting to do my speech, AND he gave a little shout out afterwards to get everyone to donate their lanyards from the Most Excellent Goody Bags!

The lanyards are used to make shoulder straps for iPhones to be used with Grace App

A big thanks to everyone who sent their congratulations via Text, Facebook and Twitter - I was really quite tickled.
The Mansion House is an excellent venue - the band were fabulous, sets amazing! (well done Fran Hollywood) amazing little snacks and don't forget the Icecream Van at the end.

All the Winners and Hosts

Oh and big thanks to MisiJenkins, Sinead and Dave from Redfly and the girls from Kanchi for minding me in my partnerless state xx

Photos are from Entertainment.ie "Caught out"

Harder, Better, Faster, Stronger.....

2010-10-05T05:22:00.000+01:00

Being a Parent is Universal.
We all give birth or adopt a new life with the feeling that someone gave your heart a pair of legs and sent it out into the world to cope for itself. You do whatever you can to keep them safe while allowing them to grow to their full potential.

Sometimes that little "Light of Our Heart" has extra challenges that mean we as parents have to be smarter, more creative, have more stamina, patience, adaptability and acceptance

Grace App Communications goes live...

2010-09-10T08:52:00.002+01:00

Head Space

2010-08-10T21:27:00.005+01:00

So yeah, about that regular blogging thing I talked about.. PHEW! this has been a challenging holiday and I apologise once again for my absences. It simply isn't possible to be pulled in all directions all day while sitting down intermittently to write anything eloquent, articulate - or you know, my usual shit.

I did find a little bit of time to go and visit my most favourite radio show to meet the lovely Tom Dunne on Newstalk 106 and talk about holidays with autism. You can listen here
Just go to Monday 9th and the start of Part II if it doesn't play.

Then it was back to the coalmine.

Since it's now 4 years since our last decent summer, my plan this August was to re-read all the Harry Potter Books in reverse order while sitting on my home made couch cushion tumbano on the deck drinking home made Australian Iced Coffee (with ICECREAM) in the sunshine.

Because F.F.S we are OWED a good summer!

Re-reading works when you have to keep giving your attention elsewhere. You know exactly where you are in the story and can easily slip back into Hogwarts when you have finished cleaning up the cereal / bathwater/ something you don't even want to know about when you get back.

But the summer didn't work out that way so for the sake of my mental health I resorted to that stalwart of closure and control; Home Improvements.

Seriously, when I am stressed and feeling pulled apart and jagged and frazzled and caught up in a Tsunami of behavioural amplification that happens during any long holiday from our Blessed School, I find clearing things out, moving furniture and finding new places to put things to be immensely comforting.

It must be something to do with taking control and seeing a project to fruition from start to finish that refreshes my mind and keeps me sane enough to get through a few more days. I'm not being flippant here. I am seriously conscious of maintaining strong mental health. In any situation where you run at a constant level of unusual stress, your body actually becomes accustomed to using a lot of adrenaline. And you have to find a safe way to wind down.

When we rented I use to move furniture around because what we owned didn't always fit what we were renting. As a home owner I have stopped that most of the time - partly because it freaks the kids out and partly because I have eventually bought the right stuff to actually suit the house we have.

But a couple of times of year I might decide to replace stuff, move other stuff around and then work out better places to put stuff. And this is what I have been up to this year.

Boo took over the Attic almost completely, so we moved Gracie into his corner bedroom, and I took over the smallest room to be my office/spare room. I've been making little trips to Ikea with measuring tapes and then returning home to rip out skirting boards and adapt the spare bed gaining another ten centimetres of space for my planned new wardrobe.

Downstairs, I cleared all this crap out from under the stairs and put it in the bathroom:

While a nice polish fellow called Eddiss came to our house for an afternoon and 'e did this -:

The drawers are custom made but Eddis wouldn't let me photograph ours until we had it painted so you will have to make do with the snapshot I pulled off their Facebook page -:

Yes folks, I actually clicked on one of those ads that pop up on facebook which for once it wasn't Breast Aug or Hair Removal - and I bought it.

And now I'm spending many happy hours rearranging all the things that are stored there.

(while sneaking a lot of the other stuff down to Vinnies in Greystones)

I will post photos of the spare-room wardrobe project when that is completed. Still got 9 days of these "holidays" to go.

Ahhhhhhhhh. That feels better. xx

Getting to know you

2010-07-28T17:25:00.001+01:00

Sorry for the huge lack of original content lately but July and August are like Kryptonite to Creativity for this Mum. I have my beloveds home with me full time now for another 26 days before they go back to school and I can hold a coherent thought in my head for more than 16 seconds.

While glancing over the news from Autism World via Facebook I came across another one of these "Shock Horror - Autistic Person Demonstrates they can Think!" Youtube clips which I always have to say "Der!" to.

I mean, why is it only when the autistic person finds a way to reach the "normals" that those normals can accept that they are fully functional intelligent human beings?

And I couldn't help but wonder....
Why aren't these parents learning to understand their children before they exhibit these so-called savant characteristics?
Are they waiting for them to be fixed before they will truly connect?

This isn't a new thought for me. Since working on my Grace App and communicating with a large number of parents and teachers about the ways in which they can introduce virtual picture communication with their kids, I am realising that many of them seem to have no idea what their kids actually like. They know what they want their kids to like, and seem determined to impose this upon them.

This is not a problem unique to Autism or Special Needs. It is no different from the Dad who wants his son to play with cars and trucks, and cannot cope with him preferring The Pink Power Ranger.
Or a mum that wants to play Barbies - and keeps imposing that anatomically impossible doll in all her permutations on her daughter, but refuses to buy her the Lego Set that she really wants.

Well, one day that little boy is going to make a lot of women happy (by designing their shoes?!) and that little girl might just be the next I.M.Pei or Frank Gehry.

For the record, I absolutely lived for my Barbies! I could play for hours, designing cardboard dream homes and making hankie-chief bikinis that fell off when she went in the pool. But Gracie has never so much as looked at a doll. She likes Muppet toys with their easy to read faces.

Boo has owned a baby doll (that someone gave us for Grace) and started carrying her around when his tutor had a baby. He named her "Eric Bana" and we collected a car seat, buggy and various feeding spoons and bottles before he lost interest.

Like a lot of kids with autism, neither of my kids seemed to know how to "play" when they were small. Boo used to line up animal toys in formations, and chew the wheels off his cars and Thomas Trains; Grace was a "collector" walking around picking up tiny bits of litter like sweetie wrappers and drink straws and putting them all in one place.

My Dad followed her around the playground once watching and stopping her whenever she picked up a cigarette butt, but otherwise letting her do it as it seemed to make her happy.

You see, the key to reaching out to my kids wasn't the hundreds of euros worth of "Imitation" play toys that I bought at the toy shop for Santy to deliver. They had usually lost interest before we had got them out of the packaging.

It was following what they liked, and then using it to get them to include ME in THEIR play.

Boo's first love was animals - Even-Toed Ungulates to be exact as I learned when I watched him googling; or Antelopes, Impala, Ibex, Springbok, Bonteboks, Bongos, and Wildebeest to you and me.

So I learned to put on Attenborough documentaries and watch them WITH him, taking note of which bits seemed to interest him most. Then re-enacting the Nile Crocodiles Ambushing Wildebeest while crossing the Mara River scene - or a row of tinfoil spread across the living room floor with all his plastic animals arranged appropriately as it was in our case.

I also watched and learned which nursery rhymes and fairy tales he liked, learned to recite them WITH him on demand and slowly started to correct his grammer or make adjustments to the intonation he was using, in order to develop his speech.
To this day I can still manipulate Boo into coming for a walk around the Botanic Gardens in Ballarat, by telling him we'll see the Iron Giant (which is really a statue of William Wallace), because these days he likes films.

Grace has learned to role-play beautifully via her Muppet and other TV character toys. She has a huge collection of Teletubbies, Tweenies, Hoobs, Fimbles, and everything Jim Henson ever invented and they all live up in the Attic with Boo and his Wild Animal Toys.
One by one they get brought down for a sleep over, or to watch themselves on Video, or even at one crucial stage; to go to the toilet or brush their teeth. Grover, Cookie, Groove, Ivor, Elmo and Tula all have mouths encrusted with old toothpaste from this phase. Ojo the little girl bear was mercifully left on the floor during the toileting stage, but we knew when she was being carried to the bathroom that is was time for Gracie to do her "thing". And she did it happily thanks to Ojo and Potty Time with Bear.

She also learns to make her toast, dress herself and is able to identify her body parts via her interest in Elmo, Oswald and Cookie Monster et al.
This is the application of the analysis of her interests, or ABA.
You see ABA is a science that informs everything we do with our kids, and not a "thing" like a game of checkers that you can stop and start (or be told to stop and start.)

We are always looking for what matters the most to our kids, and using it to teach them all the other things they need, in order to be a part of our world. Because our world is a much better place with them in it.

So I guess the message here is that our kids learn best by doing what THEY like. So why not sit down and watch their shows with them, or have a go at playing on the websites and games prefer; so that YOU can make the connection with them, and create a means to communicate on their terms.

If you want to learn more about using your child's real interests to teach them everything - email me for a reinforcer inventory on graceappforautism@gmail.com

xx

Tales from the World of Extreme Parenting - H is for Holidays

2010-07-19T22:59:00.005+01:00

However

As a mother of two children with severe Autism, I have travelled from Brisbane to Barooga, Dubbo to Dublin and beyond many times in the last 13 years.

At this time of year, some of you might be lucky enough to be planning your summer break - and perhaps dreading it after a negative experience in the past.

However, if you prepare and plan properly, taking into account your child's special needs, then it can be an enjoyable experience for the whole family.

Firstly - don't think you have to stay local. With a strong likelihood of rain for 10 out of the 14 days you have booked, you may find yourself cooped up in a holiday house with no broadband, no cable tv and the prospect of hanging around the local supermarket for entertainment.

D'amusements do not work for people with high sensory needs, and they are expensive anyway. And Long walks in the rain followed by an Irish Coffee in a local pub are for romantic weekends away. Not a family of 4 with no clothes dryer.

So take my advice and go somewhere sunny for your holidays. And fly!

1. Two Words: SELF CATER!

You will all be much happier.

Where I come from, Full Board is something that you surf on at the beach.

I find it perplexing to hear parents complaining about the minefield of taking meals in a busy dining room full of foods and table settings and people who frown and complain about the noise.

There are literally hundreds of great websites for choosing a villa or apartment to book yourself. We use Spainaway or Owners Direct but go on line and shop around. Really good bargains to be had and you need not be tied to Saturday to Saturday. Book your flights on the days that suit you (traveling on a weekday is much quieter) and then make the booking company an offer on the number of days.

We stay in Urbanisations with a mixture of terraced houses and villas, all with gardens with a high stone wall and lockable gate. Leave the windows and doors of the house open, put on a video or dvd and you can lie on a Tumbano in the sun in the garden while the kids amuse themselves in the house. Add a garden house and a wading pool, fridge full of snacks and you need only leave to go for a dip in the communal and fully fenced pool. Then back to the house for more lounging.

Look out for outdoor cafes where a mess will be not only tolerated, but expected and the other diners will be families as loud and raucous as yours - maybe more!

2. Prepare: With Social Stories,

If your child can read then write a story on the computer, double-spaced and with pictures to represent each stage of the journey. Make sure you build in rewarding activities to do along the way.

1. Drive to the Airport
2. Take the bags to the desk and get a boarding pass, then go to McDonalds!
3. Then go to the big gate and take off your shoes…..etc
Your child will go through each boring step in order to get to the next interesting step.
You can read the story together several times before the trip and ask teachers and other carers to read and talk about it too.
Finish with a photograph of the villa or apartment that you will be staying in, which is easy to obtain from the web. And the mantra “Holidays are Fun!”

For a pictorial social story go here to the Autism Support Website Guide to planning your journey.
You can even download a story to your smart phone or iPad - here

3. Packing: Bring home with you!

I am not mad, I just mean bring a few choice items that the kids particularly associate with home. I always pack a few favourite duvet covers and pillowslips.
When you get to the villa or apartment or even hotel room, go straight into the bedroom and put the pillows in the pillowcases and a sheet inside your quilt covers.
In the early days I actually took them straight off the bed so they smelt like home - important for our sensory sensitive kids.

For the first trip away I actually took the covers off their beds, so the smell would come with us as kids tune in to the familiar. I also take a couple of story books, the ones that you like to read to them, and as many kids magazines as they have (CBeebies, Peppa Pig or Disney etc), as you can leave those behind at the end of the holiday.
You will be particularly glad of these if you are going abroad. First trip to Spain I had to read “We’re going on a Bear Hunt” every night for 14 days.

Bring familiar toys to scatter around but look for Beanie versions to save space when packing. Ask friends and family to look out for these 'doppleganger' toys in charity shops or check ebay. We make them choose one toy each for the plane, and put the rest in the hold luggage.

4. At the Airport Check In, Security and when Boarding: Bring your Brass neck!

What I mean is, don’t be shy in coming forward when it comes to telling people you have a child with special needs. We get there early, but approach a member of Airport staff and tell them that the kids “don’t do queuing” and they generally help us through.

It helps if you have an Autism ID card, as it can be hard to explain to someone that these beautiful children have special and very challenging needs.

But remember Autism comes from the Latin, so you will be understood in Spanish, French and Italian.*

Remember, the airport staff would rather facilitate you than face the risk of a meltdown, so please have a thick neck and ask for help. You will be better off asking the Airport staff for help, rather than check in staff, especially if you are flying a "cheap fares" airline.

Better still, don’t fly with cheap fares airlines. Go with someone who offers pre-flight seat allocation so you can choose seats that will suit your family, Before you travel. Those cheap fare airlines are fabulous for singles and couples with no children, NOT FAMILIES!
It is supposed to be a HOLIDAY, so spend a few extra bucks and avoid nightmares.

Online check-in is also a fantastic idea. Less queuing. Happier kids.

When it comes to security, please be considerate of other travelers and have all your gear packed into the recommended sized bags. Ask your partner to empty pockets of coins and crap before you approach the security queues. Approach the staff and explain your situation and offer to remove shoes etc without being asked.
I send Mr Hammie through the metal detector first then each child whom he catches and I go last after stacking everything on the security belt. Open bags and remove laptops and liquids etc in the regulation see through bags as requested. Be cooperative and grateful for the help and thank everyone afterwards.

*In Ireland the Airport Authorities understand Autism and will give you the help you need, where you need it. In some other countries we've found ourselves brought through to the front of the queue, only to wait for 30 minutes with the other patient but mobility impaired folks on the flight. Sometimes it is better to make yourself known to the desk check in staff, then go off to walk around with the kids until the flight is actually called, rather than queue too early.

5. Bring an activity to entertain them at the airport AND on the plane.

Laptops, Mini Dvd players and the iPod Touch are manna from heaven for the family on the move. . You can purchase and download a movie on your iTunes account once, then load it on to up to 5 devices so sync' it with your iPhone/iPod and the Laptop to rotate and use when queueing at any stage.

Your social story should include a treat that will be purchased in the airport. Whether that be a coke, book or Dvd you should honor that and ensure that your child is happy to travel again.

It is important to get to the gate early so the crew can board you ahead of anyone else, so don’t dillydally in the shops for too long. However a lot of walking prior to boarding is a good thing..

When Booking Your Seat Allocation: - Mark Your Man!

If travelling with 2 adults and 2 kids, don't put the kids in the row of three and allow your partner to sit across the aisle. He will ally himself with the other passengers and put on the "Headphones of Invisibility" that block out all sounds of turmoil in the seats across from him while you struggle with the kids alone.
Book 2 on 2 with the Seat Kicker of the family (there's always one) seated behind a family member. Match one parent to one child from the moment you reach the airport and stay on them until your reach your accomodation or home. Transfers must be agreed to by both parties and only in case of emergencies like going to the toilet.
If you can book the back row even better - you will have the kids surrounded!

My best tip for onboard entertainment is to bring a hard cover copy book, and a some colored pencils. (Markers and pens tend to leak in the pressurized cabin)
The hard cover is for the time before you are allowed to pull the tray table down, which if you are queueing on the runway before takeoff, can be AGES!

Just make up a story with their favourite characters and write it out together while drawing simple pictures.

And finally, don't assume that you have to wait until the fasten seat belts light has gone off before switching on the Portable DVD players. Usually it is just after the plane levels out and you can hear the flight crew getting out of their seats. Press the buzzer and ask a Flight attendant to be sure, but don't be shy. The sooner you get the entertainment started, the better the flight is for everybody.
But be sure to incorporate the need to switch off the entertainment, into your social story.

6. On board food, drink and other stuff.

This is really hard with the new restrictions! We have a doctor's letter to explain why Bratty would only drink one brand of apple drink which is not sold at the airport or on the plane. We put a 6 pack in a clear plastic bag with the letter which the Airport Authority advised us to get, and we place it outside the carry-on bag on the security belt.

If you are considering pre-flight sedatives, get a doctor’s advice as Phenergan and Valium can have the opposite effect. And test all meds at home 1-2 days before the flight.

(Getting a little something to keep your partner calm and happy is also a good idea I find!)

Crisps and things in a packet are still fine for bringing on board. Bring lots of little snacks, but try to limit the additives and sugar content as you do not want a pukey hyperactive child in a packed aeroplane.

Bring a towel or even better a sarong or shawl to cover up if the child does get pukey. There are no extras like blankets on cheap flights these days. You can tuck it around the kids to encourage sleepiness or wear it around your waist to cover up all the food stains on your trousers as you disembark.

Also; anti-bacterial hand gel is useful as the toilets can be a bit manky in the airport and on the plane. And Bring Wipes!

Light clothes in layers are the best idea, that you can add on when you are leaving home but remove and put in a bag on the plane and when you get to your destination.

The children will not thank you as they swelter at the baggage carousel in Malaga in their best “travelling clothes."

Sandals are great as you can get them on and off easily if your feet ~~smell~~ swell. (just don’t wear socks with sandals or you will be stopped by the fashion police)

7. Safety.

Make sure the children have I.D, on their person. God forbid they should get away from you, but if they do, be sure they have their name, age, condition and your mobile phone number on their person.

On the advice of a friend I dress Boo in stripes, which are easy to see from a distance. It is so easy to become engrossed in something in a bookshop or at the duty free, only to look up and find they have wandered off. And there is no guarantee that they will be able to tell a stranger their name or yours. Be prepared!

For long journeys I actually use an indelible pen and write my mobile phone number on Boo's arm. I also dress them in World Autism Day or Saplings School for Autism T-shirts. It can actually help with "the Look" that some people give you, and makes strangers a lot kinderl.

(I have yet to find a "Obsteferous when Moved" T-shirt for Mr Hammie

8. Enjoy yourself when you get there!

The great thing about holidays in Latin countries is that children are very visible. Spanish children seem to be more indulged and we often find ourselves in the happy situation where the boldest children in the café are not ours! Seriously, the child lying on the floor having a tantrum outside the supermarket is going to be Someone Else's!!

If your kids are verbal, teach them to say Hello, Please and Thank you in the local language and prompt them to use it wherever you go. Boo orders his own food in the cafes and kiosks where he thinks all the waiters are called "Gracias".

If our break coincides with the local school holidays we sometimes find ourselves surrounded in the pool by Spanish kids who don't realise that Gracie can't talk much and who just want to play. I use a visual sign to prompt her to say "Hola" and she gets along great with them.

In the Mediterranean countries I have visited, you will always see parents with their children. Not just lying on a sun lounger and glancing up occasionally but actually in the water splashing about. So, exuberant behaviour in a public place is not so frowned upon. And everyone including people with special needs, gets to enjoy themselves.

Because that really is the main thing. To E.N.J.O.Y. yourself."