Magnum

What else would you do on a beautiful summer's Saturday afternoon but to enjoy a Magnum ice cream in lovely Leitrim (we did have to light the fire:), having browsed previously through the obligatory Leitrim Observer.

I forget what it is like here when we are in Dublin. So quiet, so beautiful and carefree. That the mobile signal is terrible and I'm having trouble uploading these incredible pictures is all part of the deal. No rush. Enjoying the Magnum by the fireside. In August!

Art

It’s incredible how art can, literally, move people. Even out of wheelchairs. There was an art installation in Germany that invited visitors to interact with some really famous pictures. And someone who had not really got out of their wheelchair did just that. Aren’t these incredible things to happen? And the fun and excitement are palpable!

Sitting in the airport waiting to catch the plane back home. Over the past two days, I visited one of Europe’s largest and Germany’s oldest and most experienced organisations working with disadvantaged and disabled people. It was like an intensive course on how an organisation grew, what it did to provide the services, the work they are doing today and what their plans are for the future. – About 10-15 years ago, they started to realise that there was a big gap in services provided to persons with brain injuries and have developed several models. We can build on that experience, on what worked and what didn’t.

One of the really significant lessons they said they learned is that it is not advisable to work with large groups, large being around 25 persons. So, our idea to start small seems to be spot on. As is the plan to integrate and ground the project in the surrounding community.

PS: There is an interesting article, written by Tom Clonan, about his view on what the State does for the so-called ‘disabled’, like his son. His conclusion is that he’s had enough. He calls for a “Yes Equality” campaign for our ‘brothers and sisters disabled by the State’. Of course, he has a case. If one thing is missing, it is the idea of how exactly he proposes to get this campaign off the ground and a few more details, like what, exactly, does he want to achieve and, exactly, for whom. I suppose, what I’m thinking is – there are tons of people (and dozens of ‘disability’ organisations) who’ve had enough and who’ve called for a campaign of some sorts; to succeed with what sounds like a huge campaign potentially we have to know, exactly, what we are looking for and for whom. To give you a taste here’s an extract from Tom’s article (it’s also worthwhile reading the comments):

Personally, I’ve had enough. Ireland is the only member state of the EU that has not signed the UN Convention on the Rights of People with Disabilities. Would Irish men and women tolerate a State that detained citizens on aircraft because of their sexuality or sexual orientation? Would Irish citizens tolerate a system that demanded 24-hours notice of travel of the LGBTI community? A State that confined over a thousand LGBTI citizens to an Irish style gulag archipelago of nursing homes? No. So, why impose this on the so-called “disabled”?

I say no more polite lobbying for the “disabled”. We need a radical transition to a rights-based approach to the rights of our fellow citizens who are disabled by a discriminatory State. I’m up for the fight. I would ask all of our citizens, including the LGBTI community, to support us in this fight.

In other words, as a father to a boy who is different, I am asking my fellow citizens to support a call for a Yes Equality campaign for our brothers and sisters disabled by a State that actively discriminates on the basis of physical and intellectual need.

Is Leo Varadkar – Taoiseach for those who “get up early in the morning” – prepared to vindicate the rights of early risers like my son?

Tom Clonan

Swatch

In Germany, exploring possibilities to work with a large organisation on the An Sao Project.

Back home, Pádraig today decided it was time he got a watch. A Swatch, to be precise.

Take a moment and think about what that means and what it means for him to wear a watch… a swatch!?

Dog

We just wanted to keep her. Even Pádraig who hadn’t been to keen on our previous ‘man’s best friend’ seemed to really like her. The got on pretty well with each other. She isn’t really a therapy dog but to me it looks like as if she so enjoyed that role. Wouldn’t you agree?

This ‘therapy dog’ is Pádraig’s music therapist’s dog and she brought her along with her for the first time ever, in many months. Let’s hope it wasn’t the last time:)

While Pádraig and the dog enjoyed their time together, I had another meeting in Dun Laoghaire looking at possible premises for our An Saol Project. When I came back, my head was spinning. There are really significant opportunities to develop something substantial if the right people got together.

I’ll be getting up at 5 am tomorrow to go to Germany for two days and to meet s

Wound

There is a wound that is raw and open. You just touch it and it hurts. A lot. It doesn’t really seem to heal. Maybe it’s a bit more manageable. But it’s always there.

Each injustice touching it sends shock waves through my body. My instinct is to keep the exposure to injustice to a minimum. There are enough reasonable people, those causing even more hurt can be avoided.

The pool Pádraig attends is still closed, probably for another 2 weeks. We’re trying to compensate with longer walks – though in this early autumn weather I consider myself happy when we can go out without getting wet.

Dreams

It’s if I had slept all weekend. A long bank holiday weekend. It took a while to recover from last week. So many things happened. There were so many meetings, people to talk to, things to think about and to consider.

I asked Pádraig today whether I would read him the article I got published in this German OT journal and he said yes. At the end the two of us were crying. It’s just the enormity of what happened over the past four years and the normality of today. A normality none of us had ever imagined. At the time of the accident, when we thought he’d survive, our biggest fear was that he would have to spend the rest of his life in a wheelchair. We just didn’t know what it meant to suffer a brain injury of this gravity. And that was a good thing.

I still have dreams. Real dreams, In the morning, when I’m only half asleep. I can see into the future, or just imagine it. Free of trouble. No need to worry. All one.

Although we were both sad, both Pádraig and I liked reading the story of his journey into  his new life. And into my new life. A journey we are making in the best of company. On the dreamboat.

(Pádraig had two visitors today who volunteered to translate the article into Gaeilge and Béarla over the next few weeks.)

Effectiveness

Tonight, I read a German version of Aesop’s Fable about The Wind and the Sun. Here is the English translation – the moral is the same: “Kindness effects more than severity”.

The Wind and the Sun were disputing which was the stronger.

Suddenly they saw a traveller coming down the road, and the Sun said: “I see a way to decide our dispute. Whichever of us can cause that traveller to take off his cloak shall be regarded as the stronger. You begin.”

So the Sun retired behind a cloud, and the Wind began to blow as hard as it could upon the traveller.

But the harder he blew the more closely did the traveller wrap his cloak round him, till at last the Wind had to give up in despair.

Then the Sun came out and shone in all his glory upon the traveller, who soon found it too hot to walk with his cloak on.

During the summer we had a bit more time assisting Pádraig with eating and drinking. We discovered that he was well able to eat food that was not minced – especially cakes. He also managed to drink larger quantities of liquid, it just needed a bit more time.

Well, today was the first day he managed to drink sufficiently himself that he needed only one additional ‘portion’ of water via his PEG. If he continues like this, very soon he won’t need the PEG at all. Not only will that allow us to get rid of the last artificial opening into his body and thus eliminate another potential source of infection, the fact that he is now taking significantly larger quantities of liquids orally also has had a pretty dramatic effect on the mouth and throat flora: much much less thick saliva and irritating dry mouth and throat feelings.

I will never forget how hard we had to fight to get the tracheostomy removed because we were told he could choke to death without it.

Couldn’t get much more dramatic. And our insistence, and Pádraig’s gentle perseverance, more effective.

TurningHead(s)

When we are sitting in the living room and chat or watch the TV, we have a monitor that allows us to hear and see Pádraig in his bed. One of the things he started to do some time ago when he was lying on one side was to turn his head to the middle. After a while or when he had problems breathing and swallowing he wanted to move it back to the side but couldn’t do it. That’s when we went in and helped him to re-position his head into a comfortable position.

When this happened tonight, I went down to his room as usual to help him.

Only that tonight by the time I got to his bed he had managed to move his head back by himself. And this time he did that, literally, in his sleep.

I think this happens to all of us at times. We do the right thing without having to think about it, it’s like a reflex, something in our sub-consciounce guiding us.

Tonight Pádraig recovered a very practical aspect of this, one that is working with his motor movements.The other part, telling him what is right or wrong, what makes sense and what does not, he never lost and has been sharing with us for more than four years now. And the world is that little bit better for it.

Know

We checked the balance today: what is left and what we can do with it. We have a good feel for the premises that are available and I believe that by the end of next week we should be able to firm up on what we will go for. We discussed the kind of services we’ll deliver, how we’ll make sure that they will be delivered in the right way by the right people, and how we’ll ensure that the An Saol Project will deliver the best possible long-term inclusive and comprehensive targeted rehabilitation programme to persons with an sABI.

As so often, the highlight of the day was a provided by Pádraig.

One of his regular visitors asked him whether he got bored of their stories and tales and readings. Using his tongue (right for ‘yes’, left for ‘no’) there was no doubt about the answer: it was a clear and resounding ‘yes’. Followed a second later by a huge big smile.

Think about it. The complexity of the thought that lead to his initial answer followed by  this very brought smile, and the multi-layered message behind that answer.

That is the Pádraig we all know.

MT

In my previous life ‘MT’ meant ‘machine translation’. In my current life, it stands for ‘music therapy’. And I have learnt that it truly can take your troubles away.

Second last day of the week that I’ve been travelling around the city and the country to give the An Saol Project a big push forward. It feels like a small eternity.

By the end of tomorrow, An Saol will have a pretty grounded evaluation of what its options are in terms of available premises. Early next week, I expect to take a decision and to start implementing our plans.

Perhaps, not surprisingly, I am drained and exhausted and completely fired up.

With all the positive stuff going on, I should mention that since our return from Germany the coverage of Pádraig’s agreed care hours has got worse than ever. There are situations, and this is one, when things are not getting better over time but move in the opposite direction. There is funding to pay for Pádraig’s care, but the agency charged to provide that care cannot source suitable staff to provide it – not just for a day, or a few days, or a few weeks, or a few months but the best part of a year. I am thinking about what to do next – what do you do if someone takes on a job and isn’t able to do it?

I want to finish up with a really brilliant piece of news, an absolutely highlight of the week. Watch it!

When I saw this – it took away all my troubles because it reminded me that this is what is important. My ‘troubles’ are just a sideshow and completely and absolutely ridiculous, not worse a second thought. And whatever causes them, I will not give any importance either. Whatsoever.