A happy busy 24 hours #R2BC

Sometimes I think I really can do this job – or I could if I had just one disabled adult depending on me and not two!

But back to our 24 hours of fun…

It all began on Friday with an 18th birthday party for the son of a very good friend. We arrived and left early (B doesn’t do late nights) but in between my disabled daughter had a wonderful time head dancing to her favourite DJs (Mick ‘n Dusty), smiling and laughing at everyone she knew and soaking up the atmosphere.

She was able to sleep in a little on Saturday morning as I’d entered us for the 5K Great Pink Run for Breast Cancer Research, which started at 11am instead of our usual 9.30 parkrun start. It was a wet miserable morning, but that couldn’t dampen spirits in the Phoenix Park where the run was held. I’d contacted the organisers in advance and had permission to take part with a large jogging buggy, and while I had to park at some distance, when we got to the start line the organisers suggested that B and I go in front and begin our run a few seconds before everyone else. This worked perfectly as it’s easier and safer when runners overtake us, instead of me trying to push through the crowds. We finished in 30 minutes 38 seconds, helped by a lovely lady called Val who shared the work getting up the hills – of which there were several! B was a little quiet, but enjoyed the crowds and the cheering.

In the afternoon we paid a return visit to the Rainbow Junior Arch Club for disabled children for the annual Halloween party. B was delighted to be back, but even she realised pretty quickly that she has outgrown it. So we left a little early and went shopping, another of her favourite activities.

I can tell you that she had a very long lie in this morning!

So that’s my cheerful post for this week, hope all is well with you too xx

Reasons to be Cheerful 20.10.19 B Smiley COLLAGE

 

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Lorenzo’s Last Laugh

STorm Lorenzo, Bastardstown, Changing Places

There’s not many people who would still be smiling at the end of a day cooped up in my old van, driving to a remote corner of South East Ireland in torrential rain, but luckily I was with three of those people yesterday. One was my lovely disabled daughter, plus a long time friend of mine and her daughter.

Why did we do this?

My friend lives in the UK, but recently discovered that her family’s ancestral home was a small townland in Co Wexford and she asked if I would like to visit it with her.

I would have to bring my disabled daughter with me, organise support at home for youngest, do the trip in a day, and check out toileting facilities in advance, but hey I like a challenge ūüėā.

Our visitors arrived on Friday afternoon, and we all enjoyed a really convivial evening with lots of food and wine before setting out early on Saturday morning and heading south under an ominous grey sky. Before long it began to rain, and then some. This week Ireland was hit by Storm Lorenzo, perhaps this was the tail end of the weather system?

But with relaxing company, the miles flew by until we pulled in at the Irish National Heritage Park for lunch. Lovely surroundings, tasty food, and most importantly, the only changing places toilet in the county.

B was thrilled when she saw it , and so was I: it was huge, clean and with everything we needed – a disabled toilet, hoist, changing bed, bins etc and it meant we could enjoy a whole day out without worry or damaging my back.

Next stop was a small village where we checked out the graveyard and beautiful church nearby for evidence of my friend’s family, but we found none. Then we spotted a much larger graveyard as we left, but decided to save that for another drier day!

I followed the twists and turns of the country lanes past farms, and cottages, through floods and potholes, until we drove round one last corner and came to a sudden stop in at the edge of a small cliff facing into a boiling sea, with brown sand and white foam, whipped up by the wild weather.

We stopped to breathe in the sea air, take a few photos of the townland, and then dived back into the van to get warm and dry.

Our last stop was Kilmore Quay for afternoon tea where we sat enjoying the hospitality of The Little Beach Cafe. And looked out at the rain lashed harbour as we fortified ourselves for the long drive home.

Saturday reminded me that you can always have good days no matter however difficult life seems.

Storm Lorenzo didn’t have the last laugh after all. We did.

 

The things they don’t tell you about disability: Osteoporosis

Once upon a time, my beautiful disabled daughter could stand straight and small in a tiny stander that looked suspiciously like torture equipment, but didn’t bother her at all.

Smiley 8 Stander standing

As the years went by, Bs legs began to stiffen and bend, and despite daily stretching for more than 20 years, they will no longer straighten.

But when she stopped using the stander, she enjoyed using a walker until she outgrew that too and no suitable replacement could be found: disability equipment is mostly made in standard sizes and designs, and my daughter is not ‘standard’ in any way!

I was disappointed as I always believed that sitting in a chair all day is not good for anyone, including people with physical disabilities, so she got daily floor time, and swimming as often as it could be organised.

However I’d forgotten one thing: the importance of weight bearing (though seriously, why is knowing everything my responsibility???) and when a DEXA scan to measure her bone density was ordered, I thought nothing of it.

It turns out that medication for seizures combined with inactivity put her at high risk for… osteoporosis. I thought it was an old person’s disease, but my darling daughter has been diagnosed with the condition, aged just 22.

So now she needs to take calcium and vitamin D and I have another urgent task: to get another stander and walker for her as soon as possible.

 

Summer of Smiles 2019

Summer of Smiles 2019
World Festival 2019, Alana Russell Memorial Run, our little bedsitting room, Zumba at Remember Us, Parkrun Marshalling, Meeting Place Arch Club, Hotter than July Festival in Smithfield, relaxing at a medical appointment

What does Summer mean if you don’t go on holiday and your children are young adults?

It could feel like a non event, I guess, the same of the rest of the year, but with a need for sunscreen and extra deodorant.

Some in Ireland are denying there was any summer at all – because there was no heatwave – yet I’m browner than I have been for years, and I’ve enjoyed the sunshine and showers, the cooler weather, fewer smelly bins, and less need to water the plants.

I made the most of it, and so did my daughter, as you can *probably* tell from the collage of happy smiles, yet the smiles were scarce at times, and it’s only in the last week or two that I felt she was really happy once again. I could not tell why she was sad, and she could not tell me either. But thankfully whatever was bothering her did not develop into anything significant.

It was also a summer of facing facts, of making choices when all of the options were less than ideal, of realising I have to find a better way to live, for myself and for the two young adults who depend on me. Time will be in shorter supply than ever, and there may be even less blogging and social media. However B’s place on her adult programme has now been made permanent, and that is one less worry, especially as she is so happy there, and the services provided make my life a little easier too.

Progress was made on some important projects during the summer. A lot of decluttering was done and, in related news, I did move in to B’s room, though I’m waiting for help to get it finished. It’s like a little bedsitting room now with two beds, two chests of drawers, B’s wheelchair and hoist, my desk, a telly and a comfy chair so I can sit with her in the evenings which saves heating the living room and means I don’t have to stray too far to help with whatever is bothering her during those hours. Our room is adjacent to the kitchen and B’s wet room, so it has almost everything we need close by. And as the weeks pass, I hope to keep making little changes that will make all our lives a little better.

Head over to Mummy From The Heart for more reasons to be cheerful:

R2BC at Mummy from the Heart 

When life takes away lemons

I used to love lemons. They evoke long languid days in the Mediterranean sunshine, gin and tonic sipped at fancy events, lemon cakes and Thai curries. Now I no longer eat them due to reflux, and you would rarely find them in my fridge.

Lemons are just one of the items I no longer enjoy from the supermarket of life.

And until this week, there was a terrible uncertainty over what else was on the banned list. Now it is much clearer.

But back to fridges for a minute (and if you’re¬†a long time reader you’ll know I bought a new fridge recently after the old one began¬†leaking into the floor, the final straw after a long series of¬†transgressions..)

The question is: what do you do with left over food: I know people who scrape every plate and tip the remaining contents of every serving dish into the bin straight after eating.

But what if you can’t get to the supermarket to stock up with all those lovely fresh ingredients?

What if money is tight?

If you have food allergies?

If you were brought up to be frugal, like me and put them all in little labelled bowls and boxes for later?

You see based on what I was told this week, there will be no trips for me to the fancy supermarket of life with aisles devoted to exotic holidays, fulfilling careers, trips to visit family, shiny new affordable homes, or girls weekends away.

The life I have now is apparently what I can expect for the foreseeable future, because the State trusts that I will not abandon the two disabled young adults in my care, no matter what.

I was trying to find a positive way to view this information when I thought of my fridge. As you do.

I thought about how I will be stuck with the leftovers of life, like the stuff in the fridge at home.

But that’s not as bad as it sounds. You see I always enjoyed the challenge of trying to make something tasty from an odd assortment of leftovers, so why not look at life the same way? Yes there’s a good chance I will never get to visit Paris or any of the other places on my bucket list, but I can visit everywhere within an hour or two of Dublin. That means city, country, mountains and sea. Can anyone really ask for more?

My disabled daughter and I share so many interests, while youngest is happy enough at home for short periods. Both are reasonably good sleepers right now, which makes a huge difference.

I can help other people online and in the real world, but I’m not going to kill myself trying to beat down the resistance to change here. I’m done with that.

I’m going to be more selfish, do more for me, stop saving for a rainy day – look outside, that day is here. I refuse to become just another downtrodden carer. You can keep your lemons, I’ll be making carrot cake instead…

Health Service Nappies driving you crazy? Try cloth! #NotAnAd

What? Is she mad?

I can just imagine the reactions to this idea.

I don’t know if it’s the same where you are, but in Ireland the Health Service provides free nappies (later called weird names like ‘Slip’ or ‘Pad’) for older disabled children and adults with incontinence problems.

Did you notice the word ‘free’?

You did?

So you’re probably wondering why anyone would consider turning their back on free nappies…

Here’s why:

1. They leak.
2. The only way to avoid most leaks is to fasten them so tightly you leave a mark.
3. They often split when you’re putting them on,¬†resulting in an unused nappy going to landfill, though I sometimes make repairs with Duct tape.
4. Only four nappies a day are allowed (general rule) so I always run out and have to source some in a hurry from elsewhere.
5. Asking the delivery people to leave boxes of nappies in the side passage if you’re out is no longer allowed. You have to stay in the house ALL DAY to wait for them. If you’re a regular reader of this blog you’ll realise that was the last straw for me!
6. Smelly bins.
7. Very full bins that incur large waste collection charges.
8. A shed full of nappies.
9. Lots of large boxes to bring to recycling every few months.
10. Cloth should be a more environmentally friendly option.

Reasons to avoid cloth nappies:

1. Fear of the unknown.
2. The cost of cloth nappies.
3. The washing required.

In fact moving to cloth is something I’ve been thinking about for a long time, especially as cloth does not necessarily mean Terry nappies and safety pins any longer.

The cost of buying cloth nappies is not a huge issue here as I already spend a lot on extra disposable nappies for when we’ve used up the health services allocation. Nor was I too worried about the washing as soiled nappies are very rare (my daughter uses the toilet as much as she can).

The main reason I didn’t do this before is that it took a long time to find a supplier: the one I used provides online advice on the best nappy to order for each individual. As a complete cloth nappy novice I’m sure I asked some very silly questions, but she was patient and finally I took the plunge and placed the order for just one nappy as an experiment.

When it arrived it looked huge compared to a disposable and I began to worry!

Disposable and cloth nappy
Disposable versus cloth

The cloth nappy and its liner was easy to put on, and appeared very comfortable. But it did look bulky and would it leak?

In fact it did leak the first time, but on the second attempt I fastened it more tightly and everything was still contained after four hours.

For now she wears it in the afternoons which works well. I did try overnight, but that resulted in a serious leak, and apparently the nappy will probably need an extra layer if she is to stay dry all night. Something extra to buy, and I haven’t done that yet.

The cloth nappy is easy to wash, dry and store, and once I have solved the night time issues, I really think we might make the change!

(Though I’d say I will still keep a packet of disposables for now just in case…)

Reasons to be cheerful about inclusion

There was a huge pile of paperwork waiting for me when I emerged from my week’s break with friends and family. But the most urgent was¬†not household bills or disability forms, but the need to confirm the summer activities for my profoundly disabled daughter.

It got me thinking how grateful I am that she has a busy schedule, and is more likely to be tired than bored. And when she’s bored, she lets me know! So it’s something I try to avoid…

Her busy schedule depends on inclusion. It depends on accessible venues, the understanding of event organisers, and acceptance of everyone involved.

But sometimes we can still feel like outsiders. Sometimes we go to events and realise that they actually aimed at young children, not 22 year olds with the intellect of someone much younger. It can be awkward.

Events that are designated as inclusive can be better, like parkrun, with a special mention for Tymon Parkrun which explicitly welcomes disabled children and adults. We’ve been to other runs that have a connection to disability too, such as the AsIAm autism 5K or the Alanna Russell Memorial Run. At all of them we tend to enjoy support rather than stares, and we feel part of something, part of a community, and not outsiders being allowed to participate. As a concession.

B also enjoys membership of a number of disability clubs: The Rainbow 13+ Club, The Rainbow Junior Arch Club, Remember Us in Balbriggan. They practice inclusion too, because most members have mild to moderate disabilities, and have speech and are mobile. Unlike my daughter. But while not everything is obviously suitable for B, the organisers never have a problem if I want to involve her in some way.

You see my daughter is different even by the standards of the disability community, but parents, carers and the disabled young people give us a stronger sense of acceptance, belonging and understanding. And that’s a much more comfortable place to be.

Other inclusive disability events include the recent disco night Bounce, and AbleFest, a music festival both for people with intellectual disabilities in July. One she attended, one we hope to attend.

Shopping centres are not my favourite place, but my daughter loves them for the people and the buzzy atmosphere, and they too are becoming ever more inclusive, with plenty of space and now Changing Places Toilets too, with the hoists that are essential if she needs to ‘go’.

I’m not expecting every service or event or activity to be inclusive for everyone – as a parent to two disabled young adults with incompatible needs, I don’t believe that’s possible. Life is messy, we’re not all the same, there is no one size fits all solution to every problem and every need. ¬†Just so long as they can access what they need to survive and thrive, I’ll do my best to be cheerful.

Now I’m off to see what inclusive events are on today so my daughter and I can get out of the house, especially as the sun is actually shining as I type this!

Have a great week and head over to Lakes Single Mum for more reasons to be cheerful xx

R2BC at Mummy from the Heart

When carers have to rest haha haha

It was 10.37. The dishwasher was finally doing its thing, and it was time for me to crawl into bed with my tablet and catch a bit of Netflix and rest…

But tonight even the crawling bit was difficult. A suspected cracked rib means that almost every movement is sore.

You can guess what the recommended treatment is for a cracked rib: lots of rest. The one thing not available to family carers like me.

My own gut feeling was to Google compression bandages, as I’m trying very hard to keep the area rigid, but they’re no longer recommended as using them can lead to pneumonia.

‘Ouch’ may have become my favourite word, but the pain itself is not that bad, it’s the frustration that this injury resulted from housing and equipment that is less than ideal, and the consequences of this injury mean that I will have to give up most of the activities that sustain my physical and mental health. At least for a while. Normally a cracked rib takes about 6 weeks to heal, but how much longer will it take if I cannot rest? It’s a scary and depressing thought.

I may have to go to the GP if the pain continues to get worse, but do I ask for extra help with my disabled daughter? Will I get it? Do I deserve it when there are so many other people in greater need?

In the meantime my only plan is to look for lots of reasons to be cheerful, so watch this space…

 

 

Thanks Dundrum Town Centre #ChangingPlaces

One minute B was chatting and smiling at my friend and I, as we all enjoyed a leisurely lunch, and then my disabled daughter’s mood suddenly changed. That usually means one thing: she needs the toilet.

Normally I would make a mad dash to get home before she has an accident, but not today. You see we were visiting Dundrum Town Centre, which recently became the first shopping centre in the south of Ireland to install a full Changing Places toilet. This is an extra large disabled toilet with the addition of a ceiling hoist and changing bed which means I can help my daughter to use the toilet without risking injury to either of us.

It was our first time to use a commercial facility, and I was very impressed: it was spacious, very clean and there were clear instructions on how to use all the equipment.

Getting in was not so easy – you have to obtain and return a special key via the information desk, and it’s NOT the disabled toilet key that I already have. You can buy the one for the Dundrum toilet from the same locksmith, details in this link:

https://www.dundrum.ie/visitor-info/shopmobility

I also had to ask where it was (I should have checked the above link!) and I found it a little cold as there was no radiator.

Apart from those minor issues it was a wonderful experience. I’m not exaggerating. Even at home I’m pulling and adjusting and bending and sweating every time B uses the toilet.

We were in and out of the Dundrum facility in about 10 minutes, and I didn’t feel the need for a lie down afterwards!

It’s also made me even more determined to find a home for B and I where I can install a ceiling hoist, because if I find it hard to manage her physical needs now, how difficult will it become in 10 or 20 years time?

And if anyone doubts the need for these facilities, ¬†I can tell you that when we emerged there was another family waiting outside to use it…

So thank you Dundrum, and I hope that every other shopping centre follows your example soon.

 

A battle won

Parenting one or more disabled children involves many unexpected roles, including becoming a fighter. In an ideal world a family would get information, appointments, a plan and advocacy support at the same time as a diagnosis. But that almost never happens. Instead families are pitched against each other for scarce resources all fighting a system that seems determined to deny our children what they need and deserve. But sometimes persistence pays off and I have to report that I finally FINALLY won the battle to get effective help and support for youngest.

This is giving me a bit more free time (less than you might think though!) so I’m doing a bit of catching up, from boring stuff like filing, paperwork (and finding lots of things to chase up, oops!) to fun stuff like my first proper run since I got injured.

Reasons to be cheerful 9.2.19

There’s also been lots of sleeping, apart from one night when my disabled daughter B was awake from 3am. For the first time ever I tried hoisting her onto the toilet in the middle of the night, but that wasn’t the problem. She wasn’t upset, just chatting and singing along to the music channel on the telly. Perhaps there was a full moon, I forgot to check!

The house has been calm and sometimes empty: less demands on me means more gets done, and time for the occasional leisurely bath instead of quick showers.

Of course I left the house a lot too: I caught up with friends, carried on bungalow hunting, and began the round of medical checks that are pretty essential once you’re in your 50s… And it seems that my eyes are healthy. Phew!

I know this is just a lull, and there will be more battles ahead, but for now I intend to enjoy the peace.

Sharing with Reasons to be Cheerful hosted this week by Mummy from the Heart.

R2BC at Mummy from the Heart