And the band played on

The rain changed everything. Two days, two events. On Saturday B and I spent a sunny afternoon at a small community event in East Wall that featured a local band. We watched and danced and laughed.


On Sunday we went into town to go to a heavily advertised country music festival in Smithfield Plaza. But it was raining. After weeks and weeks of blue skies and hot sun, the weather broke, the skies turned grey, and the rain fell steadily all day long.

A bit of rain never stopped us, and we didn’t think it would stop anyone else either.

As we neared Smithfield, I told B to listen to the music, as you could hear it very clearly. Too clearly, I thought.

I was right to wonder, because as we turned into the Plaza, a sea of damp grey cobbles stretched in front of us, with just a handful of diehard and bedraggled music fans awkwardly tapping their toes in the empty space in front of the stage. Their cowboy hats droopy and soggy, their boots piebald with rain. Plus a couple of families huddling under umbrellas. And us. Of course we enjoyed it. Not my usual taste in music, but this was live music and that alone makes it special. And it was free too!

 

Perhaps that was the problem. If you don’t pay, you can stay away, especially if it rains. And stay away they did.

But you know what? It was a privilege to be there. They were professional musicians. They could have been playing to 20,000 people instead of 20. They chatted to the very small audience, joked and played and sang as the rain tipped down.

In a way it was awe inspiring. It can’t have been easy for them. But they just kept on playing anyway.

 

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The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018

 

The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.

 

The fun begins… At least for us

The crisis cauldron boiled over on Friday and put the fires out, at least for now. So life has been a bit calmer here, which is a reason to be cheerful in itself, but there’s more. Last Saturday was St Patrick’s Day, as I’m sure you knew! But the significance for us is it means waving goodbye to hanging out in warm, dry snow free shopping centres, and hello to lots of festivals and other entertaining events that will pack out every weekend from now until November.

Of course we were promised the son of beast, and the weekend was indeed cold, and snow arrived on Sunday, putting a chilly damper on our plans.

But Saturday went well. Really well. My new secret parking place in Swords remained undiscovered, and we only had a ten minute walk to the meeting point for people taking part in the parade. This year, we were offered the chance to ride on the little train with the children from the Snowflakes Autism Support Group, and to my surprise there was a compartment at the rear of the train with a ramp for wheelchairs.

So B rode the train past cheering crowds doing her best princess impression, and enjoying every minute.

Princess B, St Patrick's Day, Swords Parade

And I thought how lucky and blessed we both are.

I was reminded of that thought on Wednesday at a focus group I attended about community living for people with severe/profound disabilities and complex medical needs (a horrible mouthful, I know).

I’ve often wondered, silently and out loud, why I never see other people like my daughter in public. I’m beginning to get some answers.

One reason is scarcity: there’s probably no more than a few thousand people in the whole country with a similar level of disability.

Then there’s the problem of incontinence and the lack of changing places toilets, that I *may* have mentioned before. For us that means we only leave the house for 3-4 hours at a time. For others, it means they barely leave the house at all.

Food can be a problem too: some people need a mashed or liquidised diet, which can be difficult to find (I have resorted to mashing up McDonalds chips in emergencies!), others are tube fed or peg fed, not very compatible with leaving the house.

Children and adults with complex medical problems such as intractable epilepsy may be at risk without their medication or specialised equipment, and may rarely venture far from home, school or day service.

Others display behaviour that doesn’t conform to social norms, which may mean they are not happy out, and are happier staying at home.

Sadly, the conclusion of the focus group was that community-based living may never be a practical option for some disabled adults, due to the huge costs involved of making everywhere suitable for everyone, the huge education requirement that everyone has a basic understanding and acceptance of every disability, and the dangers posed to those whose health is fragile.

So I counted my blessings once again, that my disabled daughter can enjoy life in the community. And it means I can too.

R2BC at Mummy from the Heart

 

My PR career as a carer

It’s true that events management was not my favourite part of public relations. But organising my disabled daughter’s activities beats the mind numbing bum wiping and form filling parts of being a carer any day.

During the winter it’s a no brainer: there’s her adult programme during the week, and regular weekend activities for her and her brother. I’m on auto pilot preparing for them.

It’s different during the summer months: her club organises a summer project but there is still a lot of event management required from me, as the only parent of a young adult who needs a wheelchair.

So I found myself sitting at the kitchen table on Wednesday morning organising our first trip on the urban train (DART) to an out of town seaside resort (Bray) to visit the Sea Life aquarium with our friends from the Rainbow Junior Arch Club.

9am – I checked all the following:
Disabled parking at or near the station
Working lifts at both stations
How to wheel the chair from the platform onto the train
Accessibility of the aquarium
Availability of a disabled toilet (no changing places toilets, obviously as they are still a novelty in Ireland)

9.30 am – Make a packed lunch for myself and B – in case we couldn’t find anywhere that served mashed food – though I have mashed chips in an emergency. Pack buggy with every conceivable item we might need. No point in taking the wheelchair because (a) the weather, (b) no portable tray (c) not enough storage and (d) only the buggy reclines so I can fix her up after she uses the toilet (I had to lift her on and off, and my back survived this time, but MY DAUGHTER AND OTHERS NEEDS MORE CHANGING PLACES TOILETS).

10 am – Half an hour to help my daughter use the toilet (including hoisting), put on a fresh nappy, get her into her outdoor clothes, and wheel her outside and up the ramp into the car. Phew!

But it was worth it.

Collage of B, Day trip to Bray, Sea Life,

We both loved the DART – I’d never done the scenic journey from Clontarf to Bray along the coast, and I felt like I was on holiday with friends: B loved it too, and was so enthusiastically loud and we got so many glares that I resorted to getting out the Jaffa cakes to quieten things down a bit!

Sea Life kept up occupied for about an hour – the aisles are very narrow and there were occasional buggy traffic jams, but our visit also coincided with shark feeding time, and that meant we had the place for ourselves for a while, which suited my daughter better as she could see more (some exhibits do not have glass walls and those were no good for her).

Coffee and a walk followed, and then a very happy trip home.

The previous weekend involved even more planning, but at least we went to familiar places: a Saturday walk into town and a visit to a new cafe, that could become a favourite as it offered cheesecake, a roomy disabled toilet and music – but not too loud.

Sunday involved two trips, complicated by the matches at the nearby sports stadium, that involved me parking in the middle of the road to move the bins that blocked our parking space each time we came home so my daughter could use the toilet.

In the morning we went for our second run with Rabbits and Runners, and B loved it even more than the first time, if that’s possible!

The afternoon saw us dodge the showers at the Hotter than July World Music Event – and I’m sure you’ve noticed by now how much we both like live music events, even better when they’re free.

There’s a bank holiday weekend in Ireland starting tomorrow, so the event planning for my daughter has begun already.

So you could say I didn’t give up my career as a PR when I became a full time carer. I still use the same skills, but for the most important client I’ve ever had: my beautiful daughter.

And that’s my reason to be cheerful for this week. Head over to Lakes Single Mum for more.

 

Creating a good life WITH my disabled daughter

‘Ordinary lives in ordinary places’ is the buzz phrase in disability policy right now, and you’ll have seen it before on this blog.

It appears to mean providing the supports and services that disabled people need to live independently in the community. But as far as I’m aware there’s no room in this policy for those with expensive high supports needs (severe/profound disabilities). The implicit assumption is that families will provide cradle to grave care and be responsible for ensuring that their loved ones enjoy a fulfilling life too.

I think that’s very unfair on my disabled daughter B, but for now I’m going to make best of it, and try to create a good life for both of us.

And this week we made a lot of progress.

Powerchair Training

On Wednesday I went to see B learning how to use a powerchair. It’s early days, but she has the most patient person I have ever met working with her. I’m so grateful she has been given this opportunity, and while she has a lot more progress to make, it was fabulous to see her reaching for the joystick, especially as it’s currently positioned in a difficult place for her to reach, due to her limited range of movement.

A dual control powerchair would give her more freedom, and conserve some of my energy too. So I really hope she succeeds in proving she can do this. I think she can.

Bowling

B enjoys bowling, especially with friends and when it’s quiet enough so she can hear the background music. It’s also one of the few sports she can do unaided, though when we went this week with the Rainbow Junior Arch Club, she needed a bit of hand over hand assistance to remind her what to do.

But I am not a fan! Especially as bowling alleys are usually hot, dark and noisy, and the sun always seems to be shining outside, where I’d much rather be. But a good life has to mean that I must try and enjoy B’s favourite activities, as well as bringing her to things I know we both enjoy – like music festivals. My eldest daughter always tells me that I can learn to love something if I persevere with it – she said it worked for her and green tea…. Going with the Club at a quiet time meant it was much more enjoyable for me, and I will try my best to go again.

Running in the Park

I haven’t taken part in an evening race for about 20 years, but I decided to be brave and try and run a 5K race pushing B on Thursday evening. It was organised by a friend of mine in aid of Snowflakes Autism, a local charity that helped one of my other children in the past.

It was like pushing a tank: her adult buggy definitely needs a service, and I might even ask Santa for a jogging buggy to make running easier still. But it was great fun and we even had some very welcome help along the way. And our time? 35 minutes and 22 seconds. Not too shabby ☺

So those are my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

Kildare Maze with a wheelchair or buggy #NotAnAd

Disclosure: this is NOT an ad, NOT a paid review etc etc

I got a bit over excited about escaping to the countryside this week, and indulged in some competitive cartwheeling and beam walking in the children’s playground at Kildare Maze. But luckily there seems to be no photographic evidence of that.

Kildare Maze, wheelchair, buggyIt was the first day of the summer programme for disabled children organised by the Rainbow Junior Arch Club: and while my daughter is now a young adult, she still enjoys many of the activities at the Club and the comfortable familiarity of the weekly routine and seeing children and adults she’s known for years.

But this was an adventure, especially as I hadn’t done any research in advance. That meant bringing everything that might be needed, from fresh clothes to nappies to several flasks of water, to a hot lunch and a soft dessert. Also lots of music CDs so she could rock all the way to Prosperous (and if you’re outside Ireland, yes that is the name of the little town closest to the maze).

Being Ireland, the first drops of rain began to fall as we pulled into one of generous disabled parking bays right outside the main reception. So they got that bit right. The disabled toilets? Not so much. There was one by the entrance and it was locked. Just why? It’s not likely to be overrun by passing tourists or vandals, so why discriminate against disabled people in this way? There was a lovely new toilet block within the complex with no disabled toilet and clearly no changing space, which would’ve enabled myself and my disabled daughter to stay longer.

There’s a roomy shelter in the grounds where we ate our lunch until the sun came out again and then we set out to explore.

There are two mazes, both with a purpose that encourages little explorers to linger – unless they suffer from claustrophobia like me. Both are large, and high sided, so you really can’t see where you are, and I was very grateful for my good sense of direction.

We began at the wooden maze, not picturesque, but the wide level paths made it easy to get around with B’s adult buggy and we enjoyed the activity too.

Wooden Maze, Kildare Maze,

After another social break, we tackled the green maze. With narrow paths smothered in hedge roots, this was not so easy to get around, and I worried about causing a jam if we met another buggy. The aim was to get to the watchtower: this is as close as we managed.

Watchtower, Kildare Maze,

And sadly, I don’t think there was any way of getting B to the top even if we had persisted until we found it.

Next on the itinerary was the crazy golf. Too crazy for me, I’m afraid, and I was secretly delighted when one of the children robbed my golf club. It was also a bit dull for B and pushing her round the course was not easy either.

pushing B , crazy golf, Kildare Maze

The last stop was the playground where B was happy watching the antics of all the children (and a couple of the adults too…).

Kildare Maze is just 45 minutes from Dublin City Centre via Google Maps, which took us down some scenic side roads where I briefly stopped to photograph this amazing sight, identifed by Facebook friends as Taghadoe, the site of an ancient monastic settlement and Round Tower, adjacent to a graveyard and the ruins of a 19th-century church.

Taghadoe,

Our verdict? A pleasant excision for a few hours, but definitely better for mobile children, including children with special needs. For us the best aspects were getting out of the city and spending time with friends in a beautiful area.

Countryside, Kildare Maze, Co. Kildare,

 

Outdoor fun for disabled kids with Rabbits and Runners

Disclosure: this is NOT an ad, NOT a paid review etc etc

I could have been packing for a week away, I was that laden down. The buggy was full, the buggy bag was full, and so was my new Mia Tui rucksack (which I can confirm is perfect for running!). Actually my disabled daughter and I were just going to Malahide Castle for a Saturday morning supported walk/run with a new group called Rabbits and Runners. But as usual I didn’t know what to expect, so I was prepared for anything.

You may have noticed that I’m back running again, and that I’ve also run while pushing my disabled daughter’s chair, and I’m sure I’ve made promises on here to take her running regularly, but it just hasn’t happened…

It always seems too hard.

I could always find something else to do.

Until last Saturday.

A friend had mentioned Rabbits and Runners, and I had nothing on that morning, so the two of us headed out to Malahide for 10.30 am.

As usual, bringing my severely disabled daughter to a new event made me feel anxious. Would it work? Would she like it? Would it be truly wheelchair accessible? Would we really be supported?

Well I can tell you now that the answers to those questions were Yes, Yes, Yes and Yes.

The worries I had melted away as I pushed her chair into the Avoca courtyard and a member of the Rabbits and Runners team found us, welcomed us, and immediately put us both at ease.

So what are Rabbits and Runners? Well they are a new volunteer group of young people trying to make a difference. They are organising monthly meet ups following the 5K Parkrun event at Malahide Castle. They use the same route, and support special needs children (and adults) and their families to get around the course in any way that works.

B and I were at the front (of course) and members of the team took turns to push her while I jogged alongside and chatted to her. As did anyone we passed or met along the way. She LOVED all the extra attention, and we both enjoyed the fresh air, exercise and pleasant company.

For me it was a joy to feel supported in a way that is rare. Usually it feels like it’s just me doing everything and responsible for everything.  Especially when we leave the house. On Saturday morning the load was shared, and that was a wonderful thing.

B and I loved Rabbits and Runners and want to go again, but the group needs more families to take part to make it worthwhile – so why not give it a try?

Find our more about the group on Facebook by clicking on the link below:

https://www.facebook.com/rabbitsandrunners/

 

 

My Sunday Photos: It’s Festival Time

Sunshine, live Rock ‘n Roll, dressing up, hot chips, cool ice-cream, vintage cars, stalls selling bric-a-brac and festival essentials (retro sunglasses for a fiver) and even beer if you bring your own. Just €10 to get in and all in a good cause. What’s not to like about the Rockin’ Road Festival? It’s Drumcondra’s answer to Electric Picnic. but without the crazy crowds and rip off prices. Especially brilliant when you have a disabled daughter who loves music, crowds and being out…

Louisiana 6
The Louisiana Six
view at the Rockin' Road Festival
You can even see the mountains!
S and B at the Rockin' Road Festival
B and a pal shootin the breeze 🙂

My Sunday Photos – a ramble up Killiney Hill

Killiney Hill is a local beauty spot and viewpoint in South County Dublin. From sea level it is a good climb, but there is a car park near the top, which is where this ramble began.

This is the first in a planned and agreed series of summer outings with one of my other children 😀.

Killiney Hill looking south 2
Looking south
Wild flowers on Killiney Hill
Wild Flowers
Scots Pines, Killiney Hill,
Scots Pines
Dublin, Killiney Hill, View, 2017
Dublin City