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 accomodation 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.

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

Liam is not that keen on sun so he is perfectly happy to play on his laptop or iPad inside while I lounge around in the sun outside. When we need to cool off, we walk down to the communal pool for a splash. Then back to the house for more lounging.

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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Friday, January 23, 2015

Goodbye Dad

My Dad passed away after a really nasty battle with cancer on Monday 19th January, 2015.
He is at peace now but I feel the loss keenly, especially as my family circumstances mean that I couldn't make it to the funeral today in Australia; although I do feel very blessed to have been there for his final Christmas. And that he knew I was there. 

Losing a parent brings up a lot of conflicted feelings. As a teenager, then young adult you might have decided that the way that they lived their life wasn't for you and you would follow a different path. Make your own way.

You go through life, you find obstacles and you find success. You have children and decide that you will raise yours differently, be a different parent, you'll do it better, determined not to make their mistakes. 

And then you realise about halfway through a life that has been full of challenges and mistakes, that actually you do a lot of things that are just like your parent. And that a lot of them are pretty good

I can now see that a lot of what has helped me be who I am has come from Dad,
whether through genetics, or absorbed over endless lectures on those Saturday nights when he had had a few too many glasses of cheap wine and wanted to share his wisdom.

"I'll give you the drum" 
he'd say as he told me that if someone told you to reach for the moon, that you should reach for the stars instead. 
That when you have a choice, you should always do the right thing
even when it was the more difficult thing.
That you should face problems head on, and do something. He couldn't stand to do nothing and behaved like there was always a solution.
 "Whatta you want me to do?"

That there was no such thing as "nothing to do" 
and if you had nothing to do you should pick up a broom or clean something, until you did have something to do.

"Look the part"  
Advice I have lived by as I am so often asked to do things for which I am vastly under-qualified, but very stylishly dressed.

That you should accept every opportunity and work out how to do it later. (and if you want to look like you know what you're doing; see previous advice)

That when you do try and it's a mess its actually "Good Practice" - Good practice for what? 
Nothing you tried was ever a waste of time, even when it didn't work out.

He taught me to be the salesman, the comedian, to be honest about mistakes and by admitting to them and apologising; to learn.

He taught me that even when you are feeling low, that pretending to be happy would lead to actually feeling that way. Even when you have to go into work with the worst cask wine hangover, smile anyway and eventually everyone will start smiling back at you. And then your smile will be real.

These are the things that live on when a person is gone. These are the things that keep you remembering and keep their memory alive.

Goodbye Dad. xx
14th January 1990
My thanks to my little sister, who let me wallow a bit via Facetime even though she is running around doing all the organising, so I could feel part of the funeral today. 

Thanks also to my most favourite radio DJ Tom Dunne who played a dedication to Dad for me tonight. It's here at Part 2 of the Thursday night 22nd show 3 minutes before the end of the show.

Tuesday, November 25, 2014

In the red tent

Today I am going to write about puberty and girls, specifically one girl who has autism and is now 15.

Before you get all cross with me, if I thought there was ever a chance that Grace could read this, then I would be asking her to help me write it. Because this is something that Mums (and Dads) need to know.

And before you get squeamish - I'm not going to be writing about the practicalities of managing a period when you have autism and a learning difficulty. You can read all about how our ABA school team managed that here on  "Girls, Autism and Menstruation" which I have put up as a permanent page on the top of my blog.

Our excellent Behavioural supervisor Ann-marie Donovan has written a full guide to how she and her team created a task analysis that taught Gracie how to handle that aspect of her life with privacy, dignity and independence. (which started 2 whole years before her period arrived)

No, this is about that other aspect of being a teenage girl. The maelstrom of hormonal changes which can completely change how she is experiencing Autism.

The "Red Tent" I refer to in the title isn't the kind you read about on "Upworthy"
that is; the practice of "banishing" women to the outskirts of the village during menstruation which sadly goes on today in less developed countries in Africa and Asia. This and the lack of adequate protection and sanitary disposal affects the lives of many women and I'd encourage you to read up about it Here and Here.

No, the "Red Tent" I imagine is a very comfortable one. In my mind it is full of cushions and orthopedic designed recliner chairs with back massagers built in. There is a fridge full of Ben & Jerrys icecream, a medicine press stocked up with Ponstan and a discreet but well stocked bar. (for the Mammys)

It would also have full access to Netflix and an on-demand cable provider with good wifi. There is soft mood lighting with optional white noise sound effects via state of the art headphones and a hot press full of hotwater bottles in fluffy covers. Climate control would be available in zones to allow those experiencing a hot sweat to cool off while others cosy up under feather and down duvets.
There would be a number of marble tiled bathrooms, each with a step in sunken spa bath and rain shower. And black toweling dressing gowns on a warming rail.
Communication would be by text or instant message only (with a 'do not disturb' option)

For too long, women and girls have been encouraged to the point of expectation to ignore and overcome their periods. With discreet protection came an obligation to roller-skate in fountains while wearing short shorts. We are supposed to do gymnastics, compete in diving competitions and give the winning presentation at that board meeting.

Depictions of being curled up in a ball groaning wearing a bulky black tracksuit that barely disguises the giant surfboard sized sanitary napkin are as rare as red ink in period advertising world.
Women have fought to be considered equal and of course I embrace that. But sometimes you just want to put on your black yoga pants and retreat.. to the Red Tent.

And for the last 12 months I have observed that Gracie would like to do that.
12 months ago her medication stopped "working". She wasn't sleeping well every night, her OCD came back and she started having MASSIVE tantrums.
We tried different meds, we tried more meds and in the summer, by accident we tried NO meds. And it made no difference. Well, she lost 9 kilos but experienced exactly the same level of extreme behaviours and mood swings so we decided to keep her off the meds, for good.

Her psychiatrist (who happens to be one of the world's most respected Autism Experts) was perplexed. She told me there is next to no research into how female body chemistry and medication interact and exactly ZERO into how this impacts on Autism and related conditions.

So I began to take data. (the refuge of the behaviourist!) Rather than the complex ABC rating scales that our Psych had given me, I used a simple traffic light system that I could fill in every few days. Green meant it was a good day on recollection, nothing to report. Yellow or Amber (depending on which pencil I had to hand) was an okay day, with maybe a few incidents of screaming or behavioural loops like OCD, and Red was an all out awful day. I also tracked the days of her period in red marker over the shading and drew a blue moon for the nights of sleep disturbance.

Because Sleep Disturbance has been the hardest part of this. Grace was never a good sleeper pre-meds but when this new phase started she began to have 4-6 nights of almost no sleep. She would pace, jump, bang her heels into the wooden floor and on one particularly awful night she got stuck in a loop kicking the radiator. By loop I mean an incident of compulsive behaviour that she is powerless to stop. She wasn't "Self Harming for Purpose" as it says on the rating scales, but just unable to stop performing an action that was leaving her bruised. She wouldn't eat much other than ice cream at these times and she seemed to have difficulty going to the loo. Oh and she would cry a lot. Real heart racking sobs that could go on for hours.

After a bad night she would be so exhausted  that she would sleep the next night, but on day 3 it would start all over again. As you can imagine it was really upsetting. Not just for me being kept awake by the noise. But because I can't seem to do anything to help her to alleviate her distress.
So I changed the environment (my other standby solution) I covered up her radiator with cushions and padding. I moved her bed and put a jumbo beanbag under it to absorb noise and covered the floor with mats, and a couple of old single mattresses inside duvet covers.

I installed a one way video baby monitor that I bought on a buy and sell site and then attached a rubber seal all around her bedroom door to stop it rattling. I even bought a few extra memory foam bathmats for her ensuite to stop her stomping on that floor all night and bruising her feet.
And then, when she was in the "bad zone" I just put her in her room to rage safely.

3 months into taking my data I began to see a pattern. By happy chance school had gone back and I made arrangements to meet a good friend for lunch. One of those friends I have had for years who I can catch up with every 6 months and chat like we saw each other yesterday.
During our lunch we discussed our respective teenage daughters (she has a son with Autism and a very grown up neuro-typical daughter) and I had a revelation.

Maybe this wasn't just about Autism. Maybe this was about BECOMING A WOMAN.

You see, my friend's daughter, like many mid-teens also has rather horrible periods. You forget this when you are 46 but those first few years of finding a rhythm can be bloody awful (pardon the pun) Cramps like a boa-constrictor is crawling around your fallopian tubes, anxiety, hysteria, tension and a tendency to burst into tears.
It was when she told me that her daughter, who plays a popular team sport, gets sent off at least once a month for "taking the head off the ref" (as we say in Ireland) that I realised what was going on with Gracie.

She doesn't have the words to pick a fight with me or her brother once a month. She doesn't have the language to express her anxiety, anger or depression appropriately. She still can't really describe pain.

So she stomps, cries, rages and slams doors. Her anxiety and tension manifests as OCD. This and her body temperature fluctuations and tummy cramps make it impossible to sleep. And since it was all new to her, she didn't know what to do about it.

You know that feeling when you have a horrid cold and are in a lot of pain and you go to the Doctor to be told that it ISN'T JUST A VIRUS, IT'S A REAL INFECTION AND YOU NEED ANTIBIOTICS!
And you feel so much better before you've taken a single capsule just knowing, that you were not just being a giant sook?

Well, Grace doesn't have that. Because she doesn't understand why this little body she has lived in comfortably, as comfortably as her Autism has allowed her; has suddenly decided to up and change on her.
She was able to take the extra body hair, the body odour, even the monthly inconvenience of bleeding in her stride.
But she simply doesn't have the receptive or expressive language for all this other stuff.
Grace is staying off behavioural meds for the forseeable future. We are trying the pill next month to see if that will reduce her cramping and make her more comfortable. So we have a "swallowing a pill in one go" program task being planned by her school behavioural director.

Good news is the number of green squares in each month are increasing. (we all have our 'bad' months)

If you are still with me, and you have any particular insights on this, I would love to hear them. Especially but not limited to other females who are on the spectrum and who have experienced a change in body and mind chemistry as a result. There needs to be a lot more research into this for all of us, autistic or not. Because it is not always about Autism.

Tonight she sleeps. xx