Friday, April 17, 2015

Autism and Tech: Here's what you can do with your old iPhone



A couple of weeks ago, my daughter Grace lost her iPhone. Grace is a 15-year-old with a diagnosis of autism and a severe speech delay. Some people would call her "non-verbal" but she can say a few words and if people don't understand she shows them a picture.

When Gracie was small, she used to have to carry a big book around to hold these pictures, but then the iPhone was invented and a very kind person gave us one to try. I was able to transfer all her pictures onto a folder on that phone and whenever we didn't have a picture, we could take a photograph and add that to her collection. Grace is considered to have an intellectual disability but she had no trouble navigating that iPhone, and she carried it around with her everywhere in an especially strong cover to protect against accidents.

With the help of a young Irish gaming developer called Steve Troughton-Smith, I was able to create an App to store and sort those pictures and in honour of my daughter, he called it Grace App.
These days Gracie, like many kids, has an iPad in school, and we have one at home for games and videos. Her iPhone, in its strong pink case with the shoulder strap, is kept purely for communication when she is out and about. No games, no YouTube, no internet - just the App that she helped to create and still uses every day.

So a few weeks ago, she comes home from school, goes upstairs to change and put her phone away (I thought) and then came downstairs to enjoy the long St Patricks day weekend.

We don't really use the phone at home as she has the iPad so I didn't notice it was missing until the night before school when I start sorting out lunches and charging up iPhones. I looked everywhere in the house, tipped up washing baskets, dug through school bags and generally pulled the place apart with a rising feeling of anxiety. It was long flat so I couldn't ring it and I couldn't recall the last place I'd seen her with it.

There was a meeting at the school so I messaged her teacher to ask her to check, but there was no sign of it anywhere in the classroom. She must have lost it somewhere over the weekend, but where?
So I took to social media, posting a photo of the phone in its lovely pink cover, the area it might have gone missing and a request to share. I simply couldn't believe that someone had stolen it, but maybe someone, somewhere had picked it up and didn't know whose it was.

The response was enormous, 15,000 shares on Facebook and countless retweets on Twitter. Everyone wanted Gracie to have her "voice" back. Not all tweets were kind, one guy actually laughed when he saw we were looking for such an "old" model. But when I challenged him, he apologised profusely when he realised that "old" iPhones were very valuable to people like Grace.




And then several lovely people got in touch to offer me their old iPhone.

One guy when he discovered that Gracie was "the Grace" of the Grace App and I was its co-creator, asked me if I knew of any other autistic kids who could benefit as he actually had four phones to donate.

I sure do, I said. You see, as a sideline to being a mum to two teenagers with autism and an app co-creator I also collect old iPhones for iPhones4autism.ie.

How does iPhones 4 Autism work?

It's not a charity as we don't really want cash, but a way to ensure that your old iPhone goes to a person with autism who really needs it.
With every new iPhone release, we keep an eye out for anyone talking about upgrading and encourage them to consider donating the old one, to us. We've had about 20 old iPhones and 2=two iPads donated in the last four years. I restore them to factory settings, put them into a strong "Defender" case donated by Otterbox Ireland and send them on to a new home.
There is a lot of people who can benefit from an iPhone, but really cannot afford them.
iPhones come with expensive contracts and it can be hard for some parents to even imagine that their child could use such a thing, until they have seen it for themselves.
Some like Gracie are non-speaking and could use it to communicate more independently with an App. But there are others, like Murray, who can speak and be understood, but need support in the community. Murray has autism too, and attends a special school about a mile away from his house. When he turned 16 he held his mum to a promise to let him walk home from school. As a result of having an Autism Assistance dog, Murray has very good road sense and can navigate his way independently to and from the local park. But this was a risk for him - as the dog cannot spend the day at school - he would have to do this on his own.



Murray's mum decided to take a leap of faith and let him do it, but spent each day waiting and worrying - from the time school finished until the moment when she would see him turn the corner into their cul-de-sac.

I suggested that she set up Find My iPhone on her phone and watch him make his way home. She could text or call if he was taking too long, and teach him to text her back to reassure her. All she needed was an iPhone for Murray. I put him on my 'waiting list' for a donated device.


When Gracie lost her iPhone, I never imagined it would turn out this way. It was found (under a quilt in the soft play room in school) but she now has an identical spare and last Monday, I set up the second donated device for Murray and showed his mum how to watch where he is on the real-time map. He is already sending texts to his mum and she has the peace of mind of knowing where he is.



Find My iPhone allows you to send a loud signal to the device regardless of whether it is on silent or the user is wearing headphones. Very useful if your child goes out of your sight in a crowded place and you need to find them quickly.

Will any old iPhone do?

The phones don't have to be perfect - they just need to be working, and able to load iOS6 or above.
Many of the devices come in with cracked screens which are easily repaired. Murray's phone has a dodgy home button, but he is well able to manage it and I've got one with a broken power button that will be used for self-care reminders by a teenager who can plug it in himself each night.
They will be wiped and restored to factory settings, then placed in a shockproof/waterproof and a life-proof cover donated by my friends at Otterbox before going out to their new home.
So please don't feel guilty for lusting after that new iPhone 6 or 6+ - your 'boring' old iPhone 5, 5s, 5c, 4, 4s or even your lovely chunky 3GS can do a very good turn for someone who will really benefit from it.
It could open up a whole new world of independence and security for someone with autism and special needs. Now wouldn't that feel good?

Thursday, March 5, 2015

Keeping on top of Laundry- how I do it

Some of you may be wondering whats "Laundry" or doing the washing has got to do with Autism?
Well, quite a lot actually. We would be amongst the busiest parents around so efficiency is super important if you want to have time for all your kid activities.

Those of us in the spectrum ourselves recognise a need for order and control. Personally I feel very anxious when the washing pile gets too big.

And, as a proud Mammy, I want my family to have clean and nice smelling clothes.

Well, I was on Twitter today when a media friend who works from home while raising her very small children tweeted a picture of her clean washing pile with the caption "Thinking of joining a nudist colony" -:


I was at home with Liam and looking for a diversion so I offered to tweet her my system of staying organised and she replied "YES PLEASE!"

So for working Mums, new Mums and anyone who has to manage a home and family while still trying to have a life, here is my system for staying on top of the washing monster. No nudism required:

Simplify

Being autistic, both my kids have a kind of a "uniform" of similar sets of clothes that follow a theme. This is because there's comfort in the familiar and it helps to have garments that they can put on as independently as possible to support their confidence in daily living skills.

At the moment Grace is wearing boxer type undies, dark cotton fleece trackpants, a pull on sports bra, white vest, a long sleeved stripey tee and a hooded zip up fleece every day.




Grace's labeled drawers


The clothes are stored in one drawer each, with a pecs picture on velcro to say what is in each drawer. This facilitates a dressing schedule where they can independently remove each picture and match it to a visual list. These days I use an iPad to do this when needed.





Liam's Autumn/Winter look is  a vest, polo shirt, long khaki cotton drawstring trousers and a zipped hoodie.



Liam can't wear soft track pants outside the house as they make it too easy to access his "trouser snake" and too obvious when the snake is feeling happy. (And we have to sit in the car doing math problems until it subsides)

Jeans with zips or buttons make it too difficult to access when he needs to do a wee. (and dangerous, have you seen "Something about Mary" ? Frank and beans indeed.)

I deliberately choose garments that make it easy to tell what is the front and back. Boxer type underwear is easier to navigate and doesn't ride up whichever way you put them on . Zip up hoodies are impossible to put on back to front.

It's just common sense and saves intensive step by step teaching of "clothes skills" that are really not that important in the big scheme of things. Gracie's IEP goal for dressing was pared right back to putting her stripey top and track pants on the right way.  Everything else was too baffling.

(Since my Dad passed away I have been wearing the same 2 pairs of jeans, vests and cashmere turtle neck combo with runners. Some days its the brown turtle neck with skinnies, some days the black one with flares. I find it really comforting in a world that has been very out of control. So I understand how my kids feel.)

Wash by Weight
As well as sorting clothes into lights and darks, I sort them by fabric weight. This means that everything dries at roughly the same time, and you are not bringing in half a wash while leaving out the heavy things that are still too damp. Today was windy but with big dark clouds promising rain, so I did a light wash of tee-shirts and boxer shorts:

Not a very promising day, but I still got some line drying done
I don't like wet washing draped on radiators all over the house. Don't like the way it looks or smells. And in case you were wondering, I also avoid using the electric tumble dryer. Gracie does not like the sound of it and gets very distressed, almost as distressed as me when I see our electricity bill.

Indoor drying leaves your clothes wrinkly and twisted and in need of Ironing, which I don't do.

And here is why:



That is my "hot press" folks. The cupboard in every Irish house where the hot water tank is situated below several badly made wooden shelves. It is warm, from the radiated heat from the tank and ideal for drying the damp off almost dry washing. Usually it is piled high with a twisted pile of crushed, creased but clean laundry. Mine has a hanging rail from IKEA.





My other trick which I picked up from my systemising sister in Australia is to use Octopus Sock hangers, also from IKEA. Or Soctopuses as I call them.


My sister's drying system in Australia

They go out on the clothes line too, attached with that wire meant for training climbing plants, so they stay on in our wild seaside winds.


And then I play chicken with the rain....

Because I am a Stay-at-Home Mumpreneur I can keep an eye on the weather while getting on with work.

Its a challenge, because you want to leave the washing out long enough to get blown dry at least, but not so long that it gets saturated in a downpour. Too early and you have to get it dry enough for the hot press. Too late and it has to go back in to be spun.

(Remember, Autism sensitivity means no tumble dryers)

So I wait and get ready to grab. I even prepare the hangers if it looks like it is getting close:




Sometimes, If the weather is being particularly fickle I bring it in and wait to bring it back out. I have curtain rail hooks just inside the back door for this:



From there, at around 80 - 90% dry they go up to the hot press. For the sake of my husband I must stress that they be at least 80%. (wet washing goes MOULDY in there)


I don't wash on potentially very rainy days and if someone else does (!!) and wet washing has to come in, it goes up in the attic on a clothes rack until most of the moisture evaporates. I can live with disorder up there. (okay, it bothers me a little bit but I try and block it out)

The beauty of washing by "theme" is that it makes sorting, folding and putting away very easy. I save my sock sorting for evening when it is accompanied by TV and a glass of wine.



I deliberately threw out all the odd mismatched sock pairs and bought 12 pairs of identical socks for each of my family members. 
My local St Vincent charity shop got a bag full of fabric to recycle (they sell it for industrial rags) and I got at least 30 minutes of my life back each week. 


Liam's favourite socks.

Seriously, sock folding now takes seconds rather than minutes. And if I end up with an odd one left over, I put it in the orphan sock bag to wait for a mate. One of my favourite things is to check it and match the pairs.
Ten seconds later. Only rule is that the coloured tops must not match.


From the hot press, the clothes can directly back into their drawers which are less than 10 feet away. If I don't have time to sort and store, they stay here, neatly waiting behind the closed door of the hot press for the boy who wants his pink polo or the man who wants his white lycra v-neck tee.
Ordered, clean and efficient.

Sometimes clothes get to live here for a while. That's okay too.


Having a system like this means that I get to spend more time doing cool active stuff with my kids. Like feeding the Ducks in the park, walking in the Wicklow mountains or going for Sushi in Town.




I just don't "get" people who make a meal out of doing laundry.
Because ain't nobody got time for that!

Monday, February 16, 2015

Holidays in Autism Land






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.


Where I live on the island of Ireland, it can rain for 10 of the 14 days you have set aside for your break. No matter how scenic the location, you do not want to 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.

The usual indoor amusement centres 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 as a COUPLE.  Not a family of 4 with no clothes dryer.


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

The other good reason to go somewhere "foreign" is the fact that it will take you away from all the local news.

By separating yourself from all that, you can see your kids for who they are, not how society wants to portray them. No bad news on the car radio, no negative newspaper headlines (that you can read) and no need to weigh in on the latest Help/Stop/Restore campaign on social media. Put the tablet and smart phone away and read a book. A happy book.

So here is my advice for traveling independently:


1. When booking your accommodation I have 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 "Rent in Nerja" and "Spainaway" as we know exactly what we want.

Please but go on line and shop around. Great Bargains, Great Flexibility in travel times (traveling on a weekday is much quieter) and you might find some you can make an offer on a few extra days if you are not doing the traditional 'Saturday to Saturday' booking.

Liam walking safely to the pool on the footpaths at Capistrano Village, Nerja.


We stay in a lovely complex with a mixture of terraced houses and villas, all with gardens with a high stone wall and lockable gate. You can sit in the sun reading a book in the enclosed garden while the kids are indoors safely amusing themselves watching DVDs or playing on iPads/computers. At regular intervals we go swimming so it is not all screentime!


Happy to amuse himself typing his stories on his tablet indoors while I read in the sun.

Self catering doesn't mean you haveto 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!



His regular spot at el Merendon on the Balcon de Europe, Nerja.



Kronox Cafe for diet coke and a toasted ham sandwich. (with iPad)


You can also get excellent take-away like pizzas or asian/curries. Dishes go in the bin!

Liam eating Pad Thai on the balcony in the apartment. Delivered by motorcycle delivery guy.

If can be brave and book accommodation and travel independently you can organise your own transfers by hire car or taxi. Private transfers mean you won't be tied to waiting around for a tour bus that will stop at every resort en-route which is a lot less stressful for your kids.

 Many of the airline and booking companies will recommend car hire companies, taxis 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 photographs of the villa or apartment that you will be staying in, which is easy to obtain from the web. Include photos of the pool, the beach and the places you know your kid will like best. And the mantra “Holidays are Fun!”

For a pictorial social story go here to the Dublin Airport website for a downloadable 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



Traveling is much simpler with the regulation carry on bag only. And the essential "Autism" tee-shirt.

If you are traveling with special kids, it really helps if you have a way to identify them. I always dress my son in a school teeshirt that has "Autism School" on the back. It makes it easier to spot them in the crowd too!

You can ask also your Autism professional or school principal for a letter explaining that your child has Autism, or obtain an "Autism Card" from Autism Ireland here.
(apply for the card well in advance as they can take quite a while to be printed)

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. People can be ever so helpful and in Ireland, not at all judgemental.

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. We have also started travelling with carry-on baggage only. On arrival at our destination airport we can skip the queue at the baggage carosel and go straight to the car hire desk.
It does mean you limit the amount of liquids you can carry, but you can always buy more shampoo, bath gel etc at the supermarket when you get to your holiday house.



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 iPads and make sure liquids are in regulation see through bags as requested. We carry a letter from our doctor explaining that our kids have autism and that Gracie will only drink the one brand of apple juice. I carry 6 of this juices sealed, and offer them to security for checking. 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. 

Laptop, tablet AND a seat back TV means a very happy traveller.

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 entertainment.

Bring a selection of small snacks individually wrapped to hand out during the flight.
While I have to carry the exact brand of Apple juice for Grace, we always let Liam order a diet coke as it is part of his reward for flying. 


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)

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.








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 write my mobile number on my kid's arm with a sharpie marker.

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 an old iPhone which he knows how to answer. I ring it if I can't see him.
Wearing the school tee-shirt 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. People are very warm and friendly and very aware of Autism and special needs.


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 a photo to represent each activity eg. Beach, pool, cafe etc. Follow what your child actually likes and don't force them to live up to anyone else's expectations of what a "holiday" should be about.

Doing the same thing every day actually works well. They know what to expect, you get to relax.


Liam's daily aperitif of coke and a ham sandwich in Cafe Anahi

Liam always gets his favourite table in El Merendon, the outdoor pizza place.







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. People love it when you make an effort.
Tip well, use the same cafes or coffee shops regularly and you will find you are welcomed back and indulged next time.



You can even practice ordering in Spanish (or French or German) yourself using Grace App. Download the App and Follow the guide on the website here. You can switch it back to English when you get home.

And Be sure to 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. Enjoy yourself. xx



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