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.

 

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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

 

The best party ever? #AfricaDay2017

(Well the best since last year’s Rockin’ Road Festival anyway)

It’s that time of year again. There’s stuff happening every weekend, Dublin has come  alive again and we’re spoiled for choice. It’s actually impossible for us to go everywhere and sample everything!

Some events have become annual fixtures in my disabled daughter’s calendar of weekend activities, like the garden festival Bloom that takes place at the end of May.

But it’s good to go to something new and different, so I was very excited for both of us when I heard about Africa Day, to be held in the familiar grounds of Farmleigh House in Dublin’s Phoenix Park.

The event was free to enter, and you could pass a happy day there without spending a cent, if you brought your own picnic. No champagne and caviar though: it was strictly alcohol-free.

B and I arrived soon after it opened, and easily got parking and avoided the massive traffic jams that we saw when we left mid afternoon (we would have stayed all day, but once again lack of a Changing Place meant we had to go home so B could use the toilet).

So what is Africa Day, for anyone unlucky enough not to be there? Well, it was like the best party you’ve ever been at: it had everything: music, dancing, food, and lots and lots of colour, exuberance and joy,  and more happy smiles than you’d see at a wedding. Everyone was everyone else’s friend and determined that a good time was had by all.

Party Time 3, #AfricaDay2017,

There were three zones, based around three stages: you could call them the food zone, the kiddy zone and the party zone. We sampled all of them and there’s no prizes for guessing which one we liked the best!

We headed for the food zone first and pottered around the stalls before eating our lunch in front of one of the early performers. This area was not wheelchair friendly, being in a very bumpy field, yet the furthest corner housed a bank of Portaloos, including a very welcome wheelchair loo – I wonder how many people were able to access it though? (There is also a permanent disabled toilet at Farmleigh that is accessible).

We relaxed for a while in the kiddy zone enjoying more music and the parade of costumes.

African costume, #AfricaDay2017

And then we discovered the party zone, and we could have stayed there all day.

But the music and dancing wasn’t only on the stages, oh no! It was everywhere…

In front of the stalls in the food zone:

Dancers, food Zone, #AfricaDay2017

In the courtyard:

Dancers in the courtyard 1, #AfricaDay2017

And of course, in the audience in the party zone.

You really really should have been there…

Summed up, you should be here,

 

 

 

Panda Chocolate Muffins and other reasons to be cheerful

This week has been all about health matters relating to family and friends, with more appointments than I care to think about and a bit too much stress. The answer? Pinny on and into the kitchen to try and recreate an adorable idea I’d seen on twitter to make some extra special muffins for a friend in need.

Panda Cakes

In case you’re interested, I took the design from this post but made the muffins and icing from scratch:

http://letgoofbeingperfect.com/recipes/panda-cupcakes/

They certainly made me feel very cheerful! And I have a few other reasons too:

Outings

A bank holiday weekend means just one thing here: lots of outings with my disabled daughter B. You may have already read about our trip to Airfield Estate and Farm on the Monday: It was a great day out, and I especially love the incongruity of finding places like this within the city boundaries.

A farm in the city, hedgerow, field, .jpg

My eldest and youngest weren’t ignored either: I managed to book a babysitter for Monday night and bring them out to the cinema, something else to be cheerful about as long time readers will know how impossible that was for a few years.

On Sunday we spent a couple of hours at a rainy Farmleigh House and Estate. Spirits were definitely not dampened though

Earrings

I only have two piercings: one hole in each ear lobe, That’s it. They’ve been there for nearly 40 years, but I was tempted to let them go, let them close up. I was down to my last 3 pairs (all Christmassy) and getting more seemed such a hassle, because I have sensitive skin and there’s only one shop that can guarantee pain-free earrings and that’s good old M&S, but I don’t always like the styles they sell.

But I pulled myself together, told myself off for being such a martyr, and on Saturday we went for an extended trip to a large local shopping centre with a wish list of odds and sods and earrings. B loved the day out and I came home with these, which should  keep me going over the summer months.

So that’s it for this week, hope you had a good one xx

R2BC at Mummy from the Heart

Adventures in Airfield with a Disability

Disclosure: I was not asked to write this, nor did I get paid or get in for free: I just had good day out with my disabled daughter and wanted to blog about it.

Through suburban gates we crawled, past serried ranks of parked cars and a queue of restless parents and children snaking along the footpath to the entrance. A cool urban event it was not. It’s also not cheap for a family to visit, but since carers go free, I paid less to get in than I did for the coffee and cakes that were needed before we went exploring. It was also the longest time I have ever queued for coffee…  In saying that, everyone was good natured, the sun was shining, the surroundings were lovely, and for once I did not feel like scratching my own eyes out (I don’t do queues as a rule, especially when they take 30 minutes).

This was our introduction to Airfield Estate and Farm, a 35 acre working farm within the city limits with lots of family friendly activities and events. And in all fairness, I got the impression that Airfield was caught out by the unexpectedly good weather as I watched harried staff scurrying in all direction with trays of bottled water and snacks as the day wore on.

Because the weather was fabulous. Soon after we arrived, the clouds vanished and it was sunshine and blue sky for the rest of the day. Too nice to explore the house and its history, so I can’t tell you if it’s wheelchair accessible. It looks pretty though.

Airfield House 1

But almost everywhere was accessible: all the paths we tried are fine, mostly smooth surfaces and gentle inclines. I only spotted one set of the steps and it was easy to avoid.

Woodland playground, airfield .png

There’s a wonderful woodland playground; no wheelchair swings or anything like that, but it was fun to explore and smell the wildflowers, and watch and listen to the hordes of happy children.

“This is way more fun than walking!” (don’t ask)

“I’m the spider, and this is the web I’m making.” (climbing net)

Not an iPad in sight…

The most attractive viewpoint was the children’s hill fort and I made a valiant attempt to push the chair up the narrow path to the top, much to the astonishment of watching families, It didn’t go so well, and I had to make a red faced retreat before we caused a major human traffic jam.

Our visit to the farmyard area did not go so well either: the doors to the stalls were too high for my daughter to see any of the animals, and two visits to the Green Barn did not result in us finding the advertised céilí. And I’d say you know how much my daughter loves music unless you’ve stumbled across this post by accident!

But she didn’t realise what she was missing as she enjoyed the busyness and buzzy atmosphere, while I enjoyed the scenery and fresh air and sunshine.

Obviously we checked out one of the toilets too: it had a doorway too narrow for some wheelchairs, but was reasonably spacious inside and I could’ve helped B use the toilet if necessary, though without a hoist I would’ve risked damaging my back. Hopefully one day Airfield would consider installing a proper changing place toilet so that families like mine can stay longer.

Would I go again? Definitely and if you’re visiting for the first time these would be my recommendations

1. Get there very early on a sunny or bank holiday weekend.

2. Start by following the path around the edge of the estate, it’s gorgeous and a great way to get your bearings.

3. Bring your own picnic. And maybe a flask of coffee too…

 

 

All the fun of the farm

Farms don’t usually feature in the fun activities I organise to entertain my disabled daughter B. After all, they don’t generally feature live music, busy shopping streets or even chocolate cake!

But this particular farm trip went unexpectedly well. From our home to Newgrange Farm in Co Meath was a good 40 minute car drive, plenty of time for dancing down the back to her favourite tunes. And it all got better from there. Organised by the Rainbow Junior Arch Club, the trip was held on Easter Saturday, which meant the place was buzzing, but not too busy.

B petted the baby animals, laughed at the other children and even went exploring in the hay maze.


Sunday featured a big roast dinner with all three of my children at the table at the same time (hadn’t happened since Christmas) followed by a yummy cheesecake made by my eldest – my belt has been loosened..

And Monday was even better: B and I headed out to sample the inaugural Cruinniú na Cásca Festival that was providing free events all over the country. The most publicised was in St Stephen’s Green in central Dublin, but as that seemed aimed at families of small children, we took a chance and headed for nearby Smithfield instead, which promised interactive science activities, wall painting, slam poetry and artisan food and drink.

Best of all, there was lots of live music. Even so I wasn’t expecting to see bands I actually love including The Heathers and We Cut Corners, nor was there any advance mention of the elevated disabled viewing area, meaning we had a fantastic view of the stage and B loved every second as you can see if you click on this video snippet.

It was a wonderful way to end the Easter weekend: my reason to be cheerful for this week.

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