Door opens to reveal......

Oh, did I mention this was an iPhone?

xx

Cancelling Christmas - Guest Post

Guest Post: Mr Hammie Writes.

Thanks to last minute preparations for the Secret Project;  I have been flat out like a lizard drinking working on that, the Work Blog (yes I get paid to blog) and the website/facebook etc etc. 

So my other half has paused from his regular trolling, posting on Boards.ie and Facebook to step in and keep the blog fires burning. 
Enjoy......

I haven't posted for H before despite being asked to on many occasions. When I texted her this photo on Sunday, she asked again and so here I go.

Firstly, sorry about the dismal title as it is somewhat at odds with the photo. This is Boo enjoying his coke and crab claws on the sushi train at Yo-Sushi Dundrum.

We had a lovely afternoon together, starting with a walk in the Glen of the Downs, then drove to HMV to buy a DVD and lunch at Yo. He likes to try new things as long as some constants accompany them. The constant here of course is his favourite beverage. He doesn't really get the train idea totally. If he sees something he likes, he feels it's okay to sample and leave the half empty plate on there while I stretch to retrieve it. But he's happy and relaxed and so am I.

I doubt anyone dining or passing would even suspect that we were anything other than a normal father and son having a Japanese lunch.

As he shops for his DVD in HMV he is so focused on what he's doing, he hardly notices anybody else to the point that he needs to be followed closely. Otherwise he will barge and bump people as he devours title, credits and information on the DVD sleeves. They see him reading the titles, etc and surely think that he is just badly behaved.

As long as the crowds are reasonably thin, it's all manageable and we have a lovely afternoon together.

It made me think of several posts I had read on facebook where parents of kids like Boo were dreading some outing or social event that was on their calender and the pressure that comes with such dread. From experience, I know that this dread often becomes something of a self fulfilling prophecy.

The dread becomes anxiety and then tension. Child picks up on it, behaves as expected, things break down, everyones head is wrecked.

So I can't stand up and say "hey, this is how we do it. We're the autistic Waltons.''

We've had as many bad days as anyone. But what I can say is that, so often these problems are not you

or childs fault at all. You have tried to bend and change to suit someone else's standards and conditions.

They have made no such allowance for you and your family.

The church is uncomfortable, people are mumbling solemnly, the pub has so many confusing smells and noises, I could go on.

Many of us remember Christmas Days where allowances were supposed to have been made but weren't.

We've had the looks of scorn because we tried to finish our dinner or glass of wine and things broke down.

Some even kick you while they're at it to get attention for themselves and their own kids. Sound familiar anyone?

So this year, I cancelled Christmas.

Boo and his Mum are off to about as far away as they could go. He understands Christmas and hopefully where he is going they will accommodate his understanding of same.

Bratty and I will do whatever, walk in the woods, go driving. Unlike previous years the dread and trepidation that came with Christmas is not there. There is no anger there.

Sadly this has not always been the case and I have by my own admission; shagged Christmas for everyone. Dealing with that I came to a sad resignation that Christmas is not for us this year.

It just isn't.

Mr Hammie.

It's all in there - we just have to find the right combination.

It's not a puzzle with pieces missing or lost.

It's a high school locker with a combination lock - and we have to find the right sequence to open it up.

Inside we will find the specialty subjects that interest us most, and the ones we find challenging.

But if there is someone there to use the ones we like, the ones we could think about all day long - to make the difficult ones easier, we'll soon catch up.

You might have to learn a bit too - quite a lot to be able to help us.

No one says it's going to be easy, it will be very challenging. But very satisfying.

But just because we know the combination to this one - doesn't mean it will open the next.

Everyone of us is different. Some will open easily, some will take a bit longer, a few more tries.

You might even need to go ask someone else how they did it, and see if it works for you.

But we are all worth it. All we need is the right help.

xx

Get down on it

A couple of threads knitted together for me today. I have been responding to a number of "Why do they do this?" type queries on the Facebook page for Irish Autism, along with helping someone else to secure the help they know their kid really needs, and helping to celebrate something significant and wonderful for another parent - something that the normies wouldn't really "get".

I was also reading yet another one of these "Autism is an epidemic, we must prevent it/find a cure" type of posts too. That always gets my goat.

And I couldn't help but wonder.....

Could it be said that the kids whose parents have acceptance, tend to have better outcomes  than the kids whose parents get stuck on the denial-blame-curebie setting?

Of course, to accurately compare this you would need to set parameters of just what is a "better outcome".
And it would be very subjective as the "Acceptors" would be noticing and recording little things like:
learning to play with a new toy, in the way it was designed, getting a joke, telling a lie, or even; swearing very appropriately from the back seat when someone cuts you off. (ARSEHOLE!).

At the same time they know why food shouldn't be touching, and why the salt and vinegar crisps in the green packet taste better than the ones in the blue. AND they don't freak out and have a breakdown whenever there's a "Poo incident" - hey shit happens! (pardon the pun) 

Now please don't misunderstand, Acceptors are not Surrenderers!

Surrenderers are those folks who just put themselves at the mercy of the system and don't try to change anything about themselves, their kids or their environment in order to adapt. They remind me of those road signs you see at intersections in Ireland. In Australia we have a "Give Way" sign where you pause to allow traffic to pass by but you don't have to come to a complete halt.

Whereas in Ireland, the "Yield" sign always makes me think you have to get out and lie prostrate on the ground with your arms spread wide - ready to be trampled....

Surrenderers seem to be like that. Whatever happens during their kids lives isn't up to them. It's not fair and it's a little sad when you see it, but they can sometimes attract rescuers and people willing to take on what they won't bother with themselves. But that is their choice.

Whereas Acceptors seem to "get" their kids and let them get on with their groove, while trying to educate themselves into being better parents.  Sure they have the bad days when they wish life was different. But for the most part they are able to imagine what it is like to see the world through autism, and really try to make things fit the way their kids like them. At the same time helping their kids try on the rest of the world on their own terms.

On the other hand the "Denialby-Blameby-curebies" would be looking for nothing less than total normalcy.
"This is not happening, I do not have a kid with a disability. I am going to stamp this thing out whatever it takes!"

No flaps, no stims, no laughing at something that I can't appreciate is funny. Total and utter immersion in the mainstream, in a normalcy purdah.

Denialby-Blameby-Curebies can achieve amazing things with their force of will and determination to stamp out autism and all that is associated it with it. Fair play to them, because others will benefit from the improvement of services and education that such tenacity brings.

But sadly, when all that can be fixed about autism is fixed and the child is still autistic - does this mean the parent who hates autism will find it hard to love the child they have? I hope not.

Any good relationship counsellor will tell you that for this thing to work, everyone has to be willing to  change. And it shouldn't always be the parent OR the child. A little bit each way.

So watcha gonna do? Do you wanna geddown.....



for A.J. the marble roller!

Soldier of Good Fortune

From The Iron Giant (1999)

General Rogard: You realize how much hardware I brought out here? You just blew millions of Uncle Sam's dollars out of your butt! 

This is Boo practicing his Halloween Costume for tomorrow's school Halloween dress-up and party.
He made a late switch from Woody (from Toy Story) after the girls from Hamleys painted his face in camoflage on Sunday in Dundrum - Woody doesn't wear make up see?

Hamleys Girls Offering Face Painting as part of as the Centre's fundraising activities supporting the Marie Keating Foundation Breast Cancer Awareness Month!

This was a relief as I have a rule that I only do home-made costumes and the cowboy boots with a cow hide waistcoat were proving difficult to source.

Whereas combat pants, a safari style shirt and camo-raincoat came to €15 in Enable Ireland.

General Rogard is a "Baddie" according to Boo. So appropriate for a Halloween costume and during my Wiki search I found he has the best lines too.

And though you may not realise it - we are looking at a vision of imagination, of ability to follow a theme, to make independent choices, and to "pretend" - he even does General Rogard's voice.

For anyone who ever believed in The Impossible - this is my Boo! xx

To Stephen Gately. We will miss you. xx

We are very sad to hear the news of Stephen Gately's passing today.

I met Stephen  and watched him perform a live concert with Boyzone for my charity; Irish Autism Action and my kid's school; Saplings Rathfarnham,
at The Keith Duffy Masked Ball in December 2008

It was a difficult economic time. The banks were in trouble, companies were going to the wall and no one wanted to be seen spending money. But the promise of a Boyzone concert ensured we sold all our tables and helped keep my kids'school going for another year.
All the Boyz and their families were there for the dinner and auction, just one table away from ours.

I think at one stage they were bidding against each other in the Auction to get the prices up.

And Boy did they put on a fantastic show at the end.

As sad as this is for all of us, our heartfelt condolences must go to his husband, his family and dear friends.
Stephen, may your spirit be in a good place. Thank you for the good you brought to the world.
We will miss you. xx

Working Girl

Sorry for the recent hiatus but I am back workin' on the irishautismaction blog, social media AND my secret project.
I would love to tell you, but then I'd have to kill you. So here is a hint:

But I promise I will be back soon

Why I love NERJA!

Photo from Life Adventures, Nerja

Every May the Hammie family get on a plane and head for Nerja, a little town about an hour east of Malaga, on the Costa Del Sol.

We have done this every year since 2003 after I swore I would never take an Irish Summer Holiday again.
I know I know - when you get the weather there is no better place.
But my souvenir of our week in Kerry in 2002, was a weather proof jacket.
So Slan to the South West and Cead Mile Costa!



Being an autistic family, we went to the place that the 3 generations of Hammies had been going to for 20 years - Capistrano - And we keep going back.

The first year we booked a package. But after that found it easier to book a villa independently through Owner's Direct, and found that flying on scheduled flights, and renting a car privately at the airport was a whole lot better than the package and waiting experience for our kids.

We usually go in May, because it is pleasantly warm, and not too busy as everybody else is still in school. (this year it was delayed thanks to the attic grant situation)

Nerja has no high rises and no night clubs. In fact it was dropped from most budget travel packages years ago. It is popular with young families and the sort of older couple that has raised their family.
Poolside you get a lot of permatans, stretch marks and unwise speedo action on older men - but it does make one feel a bit young and gorgeous, in your €1.50 Tesco Bikini and sarong.

One of the three enormous swimming pools. Boo is the small black dot.

Bratty enjoying one of her 3 daily splashathons in the Top Pool. Our Villa was about 15 metres away.

When the weather is fine but not too hot, Boo and I enjoy a daily walk down town to Anahi, a cafe near Riu Monica which now has wifi!

Best order is the Anahi Burger. Australian Style burger with everything including a fried egg - but no beetroot. Boo has the Sandwich Con Jamon sin Queso (toasted ham sandwich) a big bowl of EXCELLENT chips and lashings of coca cola light.

He calls the waiter, "Gracias" - you can guess why.

The view up the Balcon de Europe - a natural cliff that forms the town centre and place to meet.

There is a beautiful church on the Balcon; El Salvador -which is very popular for Irish Weddings apparently. At Capistrano we would see Irish Families over for a weddin' with the tell tale red shoulders. Factor 30 next time dears!

The Balcon has a number of touristy hotel cafes with elderly but efficient waiters, fine views and set menus. On our last day I sat alone at one of the cafes and enjoyed a negro y blanco, a combination of ice cream (helado) and coffee. Yu-um!



The Passeggiata takes place here each evening with local spanish families joining the tourists to enjoy the breeze across the water, eat ice creams and give pennies to the mostly awful street performers and moving statue people.

Boo loves moving statue people - But he teases them ruthlessly until they move on...


Excellent Pizza and Pasta place off the square too.

There is also a number of carriages awaiting the tourist with €35 to spare..

Boo just jumped in here - the Jarveys didn't make a cent out of us!

Now you see the hat

Going

Going..

Gone!
And no I didn't climb down to retrieve it.
Those little dots on the beach are people, there are a LOT of stairs.


Everyday we take the kids swimming, several times. Then Daddy and Bratty go to Almunecar to McDonalds for some chicken nuggets and chips. And a Cafe Helado for Daddy.
It's about a 30 minute trip there and back along the mad coastal roads, but it keeps a little girl happy, and I think Daddy enjoys the drive.

Sometimes Boo goes too.

And there I will leave you for today. We had a lovely break, amazing how long a week can be without all the home stresses. Plenty of holiday stresses too of course but at least it was in the sun!

I did do some re-runs while away which did not come up on google reader. So you can check them out here and here and of course here which includes our little mishap in 2007. Would love to hear your comments on those edited posts.

For now, Adios!
xx

The photos are a mix of 2005 and 2009, I actually found an old disc that I had not got round to printing.

Holiday re-run; Reality is shaped by our senses

Bratty enjoying some sensory time in the pool

Boo and a hose in the little splash pool in the back garden of the villa


Boo underwater - pretty much the whole time he is in the water, he is under it!

Bratty´s version of LaLa - July 2008

Another Holiday Re-run, from July 2008; Reality is Shaped by our Senses

My Year 10 English teacher once said "reality is shaped by the senses"

He wanted us to think about how our reality might differ from another, depending on our perception.

And here I am 25 years later, trying to understand it in relation to my kid's autism.

I am not a recent convert to this idea. My Boo's first good teacher tried to explain it to me a bit when we were going through the clothes and shoes stage.

Boo was very keen on wearing a pair of riding boots which were at least one size too small, and at the same time preferred to be naked from the minute he walked inside our flat.

He would wear clothes to go out, but we had issues with sleeve lengths and types of clothes.

This teacher - Minnie, explained that having autism could feel like having "pins and needles" all over your body, all the time. Or it could feel like you had been to the dentist and had a local anaesthetic which made you want to feel your lip all the time- except the numbness would be in your arms and legs or all over.

The tight shoes would make him feel his feet so he had an awareness of himself. Whereas taking his clothes off would make him feel at ease in his own skin.

It made toilet training very challenging.

I remember using builder's tape to hold Boo's nappy on him as we were renting and the houses were always carpet. I think I graduated to dungarees with a walking harness over the top, and the neck to knee swimming costumes with the zip at the back.

Oh dear, I feel bad about it now.

I've talked about this before. But I decided to do a whole post on it as I am reading an excellent book which describes it very clearly in an approachable way called Dasha's Journal which is written from the point of view of a family cat.

Now I hate cats. I am allergic and having grown up in a house full of cats that pooped everywhere, I didn't find the premise particularly appealing. But I am really enjoying the book.

Unlike many so called "autism professionals" Dasha the cat knows that people with autism see, hear, smell, feel and taste things differently, and it shapes their views of and interaction with; the world.

Judging them as intellectually impaired because they cannot pass a standard IQ test, is like saying blind people are rude because they ignore you when they enter a room or deaf people are ignorant because they don't listen!

It is hoped that most people would know to announce they are there when someone with a visual impairment approaches them; and to be sure to be face to face when speaking to someone who is hearing impaired.

So perhaps it is time we began to appreciate the sensory perceptions of auties; and reposition ourselves where necessary, to make life more comfortable for them.

To begin with I want to deal with the so-called Triad of Impairments.
According to the National Autistic Society website and many many autism "professionals" Autism may be diagnosed in someone if they have difficulties with Social Interaction, Language or non verbal communication and difficulties with Flexibility, creativity and imagination.

By that definition you would have to diagnose every tourist who ever visited Paris, France.*

Think about it. Imagine you wake up one day and find you are living in Paris.

You may have some french which you learned at school or from your skincare range (I speak fluent Clarins) but the minute you try to talk to anyone in this city they will seemingly set out to misunderstand you and make big Gallic shrugs or hand signals to imply your ignorance.
= Difficulty with Language

Being misunderstood or ignored and finding yourself treated like an idiot all the time is going to make it difficult to interact with others = Difficulty with Social Interaction

And not being able to ask anyone for help or understand directions will make you very nervous about getting around.

You will probably work out one way to get from A to B and stick to it, so you don't get lost = Difficulty with Flexibility

As for Creativity and Imagination? Who is going to be creative in those conditions? I think you will spend most of your time imagining what it will be like to get on the plane and go home where people can understand you.

That is how our kids feel. To judge them on those so called impairments is not only unfair; it is usually inaccurate as one or another of the three is contradicted by what you as a parent can observe.

In the early days, we will kid ourselves or indeed are kidded out of the diagnosis of autism when we have experienced love and affection from our children or "social interaction" with us. Or we have seen them role playing with toys, (imagination) or cunningly problem solving in order to overcome an obstacle (creativity).

We had that situation in the doctor's office with Boo.

Being told to leave it a bit longer, to give him a chance to start talking as he so clearly loved and connected with us; he couldn't possibly be autistic.

When we did get Boo into a school, they told us without hesitation that he was VERY autistic.

It was just the Paediatrician's criteria that was wrong.

So to judge our kids on that INFLEXIBLE criteria is pointless.

It is just as unfair to expect them to pass the standard IQ tests in those circumstances and judge their intellectual capacity on those results. I am reminded of the White Australia Policy of 1901 which was designed to limit non-white immigration.

The test required a person to write out a passage of fifty words dictated to them in any European language not necessarily English. When one guy passed in a number of languages they resorted to Scottish Gaelic to keep him out.

To really understand our kids we need to open our minds and try to sense the world their way.

Imagine now that I have dropped you in Southern Spain. (not so hard to imagine here, hee hee!)
Even with your very limited grasp of "Sesame Street" Spanish, you suddenly find that everyone is making an effort to understand you, however bad your accent or pronunciation.

You may have to resort to gestures or pointing but people TRY and to work our what you want and go get it.

Slowly you begin to feel more comfortable in the environment and branch out, learning a bit more of the language and customs which in turn helps you to fit in.

You might still feel more comfortable in "your own world".

At the end of the day you probably want to relax and read an English novel or watch B.B.C. News on cable, but the difference is you can choose to relate to people in Spanish, when you need to.

That is the place we want to take our kids to. Where we can appreciate what sensory distortion they have to overcome and make it easier for them to learn our ways; without being treated as fools.

Because we all have our own little sensory differences.

But for now. Buenas noches Mon Amigos. xx

1. Today's picture is by Bratty! Drawn freehand and independently on the 17th July 2008 at the age of 8 3/4.

She has never willingly drawn anything up to now, only scribbles or really aggressive coloring of worksheets. She has however been observing how things look as you can see by this perfect picture of LaLa, and her Ball.

Will I send it to the Guggenheim or Tate Modern?

*2.By this reference I do not wish to defame all French people. You can drive an hour outside the capital and find perfectly nice people who do not seem to be pissed off by your very existence.

A different shade of normal.

Another re-run: from the webcafe on Ria Monica. Originally published February 08:


I was having brunch with a friend again today; and yes, I do love a good brunch (or lunch).

We were reflecting on how much progress her son had made since diagnosis and the beginning of acquiring "a service".
She was remembering a time when they couldn't go anywhere as a family as they might potentially come across any of the obsessions that her son had, and couldn't prevent him from indulging. Whereas now, with some structured intervention, huge progress in their son's development and an improved understanding of his diagnosis themselves; they had more flexibility in their life.

They were, in other words, a whole lot closer to a grade of normal that most people with typical children take for granted.

I was really happy for her. No matter how mild or severe a child's autism or other needs are, they are the worst that you have ever had to deal with and we must always make allowances for that.

I don't take this realisation for granted. I have plenty of friends and acquaintances with only one child with special needs, or a child whose needs are balanced out differently to my kids. Maybe their kids sleep all night, or toilet trained easily, or they have good communication skills. In other word comparatively speaking when they are with me; I could say that they have it "easy".
And let's be honest, I can trump most people in the "my life is harder than yours" card game; at least in Autism World.

But I don't, because that is the difference between being a parent and being a professional working in special needs. We only have to cope with our own level; whatever that is, and it can seem bad enough.

So as a fellow parent I have to keep my Full House or Straight flush to myself and be empathetic to the other parent. You see, whatever is going on in their lives; It is not the shade of normal that they anticipated, and it is therefore confronting and at times, shocking.

Now, I didn't get to this Zen like state of acceptance and understanding on my own. I have a 10 year old with Autism. Which means that 6 years ago when I arrived here I met a lot of people with older kids who had received little or no intervention to begin with and years later, were getting the slimmest of services on a drip feed.

They were calmer than me, they were WAY more accepting than me and they very quickly taught me that I was lucky. As you know my kids only have autism and ADD.

Back in the days when autism wasn't so well recognised, we spent an awful lot more time in the "mixed special needs" community. And it has to be said that meeting parents dealing with congenital disabilities resulting in both physical and intellectual challenges; who are doing it with style; really teaches you to get on with it. And so I did.

Yes, the kids with ASDs are often "the baddies" of the mixed special needs community. Our kids are aloof and do not interact easily, they may be displaying inappropriate behaviours, they won't come up and give you a hug. But it is only autism; and with structured intervention they have a good chance of overcoming a lot of their challenges. So it is important to be mindful of this.

A sideline; I have long been a little in awe of the parents of kids with Downs that I come across in special olympics and special needs swimming camps, etc. They appear to be so positive and really seem to have their shit together as parents, which is amazing when you think of all the genuine medical health issues along with educational and therapeutic needs that they have had to deal with.
I still marvel at these parents and their gorgeous kids but I have come to realise; one of the reasons they seem to be so "together"; is just that they have had a lot longer to get used to it.

They have had to face up to the different shade of normal from birth, even before birth in some cases. That doesn't lessen the pain and confusion and anger and guilt and the sharpest heart piercing grief that they have to face. It just puts it a little further into the past.

So back to Brunch.
There I am istening to what it is like to be 12 months into "the journey" and understanding quite clearly what the improvements plus the perspective can equal in today's brand of Autism at 4 years of age.

And then it strikes me; If we were on the Orient Express of normal; my friend was still on the channel ferry at Calais,and I was in Venice, heading for Istanbul.
My level of "normal" is on an entirely different setting to hers.

I love that my friend has "come on so much" as we say in the trade. I am not the slightest bit resentful or jealous. Delighted for her.
But I did have that little jarring reminder of what normal could be; IF I both or even one of my two children were typically developing.

In the world of autism a typical sibling; can be a HUGE advantage; But also, would you believe, a liability .
Having that golden example of typical development in your family can be a great help. I always say about the older brothers and sisters, that with a bit of forethought and planning I should have had that. "Here's one I made earlier" as I flourish my typical child and all their fantastic "third parent" features and benefits.
But it does not work that way. With that help comes the responsibility to ensure that the typical child does not smother under the burden of their special sibling, that they receive adequate positive attention from their parents and get to have something approaching A NORMAL life.

That's right. Having other kids means you have a bigger anchor in normal, because You Have To, for their sake.

Compare that with MY enormously freeing situation of living in The House of Autism, 1 Autism Street, Autismville.
Mum, Dad, Boo and Bratty are all in the spectrum and behind closed doors we get to rock it our way, for as long as we like, without anyone to say Don't.

Even outside the front door I have a hide like an eight and 1/2 stone Rhino and I try to only go to places that either accept us as we are, or just accept our money without caring what we are.
Sure, there are bad days when one of the kids is acting up and I get "the look". But one kung fu kick and The Look is quickly extinguished and we move on.

(okay, I am not writing this from Jail so what I tend to do is say "He/She HAS autism - so mind your own business you old binney!)
I will let you decide if I really say that last bit out loud; it depends on the day.

But sometimes I do venture outside this comfort zone of "my normal" and I am confronted and challenged and hurt.
I have to understand that I need to conform a bit more to fit in and accept the pressure that puts me under. Ouch; do not need that.

But I also feel as many adults with ASDs do; why can't you try and fit in to my world? Get a little closer to appreciating MY shade of normal yourself?

I was at a meeting last year where the topic of chit chat between the health and education professionals and parents for the first 15 minutes was "sleep overs". (Where a pre-teen girl has a number of classmates over to her house to stay overnight.)
I stayed shtumm obviously, having nothing to contribute. I have two kids with autism, they do not integrate socially, and we have no possibility of play dates let alone sleep overs.
But eventually someone tried to include me in the conversation asking "what about you, how do you manage sleep overs?"

A little stab in the heart with a shard of normal in other words.

I replied with as much dignity that I could that I would gladly settle for my own children sleeping through the night and there was no question of asking anyone else to share our nightly adventures in sleep deprivation.

Luckily I had my repair shield back in the car and I was able to reapply my shell of hardness and coping after the meeting.

So what do you think? is our own reality shaped by our senses, our experience and therefore only comparative to our own expectations? Should we go outside that; or is it safer to stay within our safely shaded world of normal, as we know it?
What do you think?

Hammie
xx

P.S. as I am on holiday I am experiencing our different shade of normal in a mediterranean context. People look asw my girl splashes and sings her little perseverative songs (ah ah oh oh, ebiyadi-oh)
but I rarely explain because none of us speak the same language - which puts Bratty on a level playing field for a change!