Lessons for a New Decade

“You need to practise self care so you can keep on caring,” said the course facilitator.

That was the moment the mask slipped.

The promotion of self care is not about the carer, it’s because the Irish Health Service has “no money”, so all it can offer to many desperate families is advice on selfcare. Not respite, not supported living, not more help, not more therapies, not better services. Just advice, so we can keep doing the same thing for longer and therefore not become a problem, a family in crisis, an emergency, an embarrassment.

Because that would NEVER do.

It was one of many lessons I learned during the past ten years.

I also learned that everything changes. Ten years ago social media was a source of wonder and hope, a way to deepen connections with friends and family, a way to ease isolation and find others facing similar difficulties in their lives, a place where you could have conversations with anyone, anywhere in the world. Now my accounts are locked down and I censor everything I post very carefully indeed.

In similar vein I learned that trauma means people may be triggered by the feelings and opinions and expressions of others. So I keep my big mouth shut much more often than I did ten years ago. Especially on here.

I learned that life goes on after someone you love dies. It’s different, there’s a void that can never be filled, but you learn to carry it with you through the days.

I learned you cannot stop people judging you, your family and how you live your life. But I’m trying to be less judgemental of others.

I learned that the wise woman who told me life never really settles was right, as there will always be new joys and sorrows, challenges and gifts.

I learned that most of the online advice on how to look after your mental health and improve your life comes with one unspoken caveat: not applicable if you’re a carer.

I learned that readers enjoy emotional posts, but not anything overly negative. Another reason I publish less! There will still be posts on here when I have some significant news about my profoundly disabled daughter. But I’m not sure how much else I want to share.

I learned that nothing changes when your youngest disabled child turns 18: You’re expected to soldier on, but now without information, training or parental authority.

I learned that even little things can send me into complete overwhelm. I nearly cried the other day when I heard that an important state document will no longer be posted out to me. Instead I have to go and find it online, hope my password works, hope the site works, hope it doesn’t crash, then download it, save it, print it and hope the printer doesn’t run out of ink. It might take me only 5 minutes, but might take 50. It becomes yet another chore to add to the long long list.

I learned that I want to be a parent but not a carer.

I learned that I have my limits, physically, mentally and emotionally, and they have all been tested over the past ten years. As I *may* have mentioned before, this crazy rollercoaster ride we call life is going faster and faster and my 60th birthday looms large. Already I cannot manage everything in my life, or give enough time to those who need it. So while many of my peers are beginning their well deserved retirement, the years stretch ahead for me with no offers of any break from caring. Ever.

I know it’s up to me to change this while I still can. Before I give up. I know my young adults deserve better. I also know I can only change myself and my life, so that is what I plan to do. So you won’t be surprised to learn that this is my New Year’s resolution.

I am no longer accepting the things I cannot change. I am changing the things I cannot accept.

Of course there were positive lessons too from the past decade..

I learned I love dancing, wall climbing and word searches, but not gardening or administration or housework!

I learned there are good people everywhere, including many who work within the Irish Health Service.

I learned I have a wonderful support network, which has never failed to be there for me and my family.

I learned that exercise and spending time with people in the real world is the best medicine for me and my feelings of overwhelm, anxiety and depression. And so I began 2020 by pushing B around a Parkrun in St Anne’s park. It was a beautiful, bright and crisp morning and my spirits lifted to be surrounded by so many other people determined to start the decade with hope and positivity. Maybe I can change the future after all.

(If you like this post and want to share it on social media, please use the sharing buttons below the photo, as obviously you cannot retweet from my now locked twitter account!)

St Anne's Park with effects

 

Fudge, family and elephant feet

**Disclaimer – I was not asked or given any inducement to mention the companies in this post, I just believe in giving credit where it is due**

Just back from my first trip overseas for 8 years, with only my profoundly disabled daughter for company. Mad? Perhaps, but good too.

Our 4 day break was by turns stressful and relaxing, then stressful again, but I knew I was on holidays when I found myself sitting in front of Sabrina the Teenage Witch in the middle of the afternoon eating fudge while B played with her toys. I’d put the show on for her, but ended up watching it myself 😊. Wild huh?

The trip began properly on Friday morning at 1.59 am, when B decided to wake up, maybe she was excited? At least it gave me lots of time to finish packing. We’ve done the ferry trip many times in the past and little has changed except there are no fast ferries now during the winter months, so it was a much longer journey, but at least it was familiar, and we were well looked after by the Irish Ferries staff.

Irish Ferries, trip to Wales

Our destination – Shrewsbury – was not so familiar. Which was good and bad (the one way system and the steep hills!)

Shrewsbury across the River Severn

Staying in a hotel with B was another first, and I had no idea how it was going to work. We were given a well appointed room for disabled people on the ground floor (which was raised from street level and reached by ramp at the front and a lift at the back of the hotel). However the room was designed for typical disabled people, not someone like my daughter, so she couldn’t use the shower chair for example (but bed baths were fine for a couple of days). The bed itself was a divan, and I couldn’t get the hoist underneath it, so I lifted her on the first night, which was quite dangerous after a long journey on very little sleep. I mentioned this problem at Reception the next morning, not expecting much, but during the day they lifted the bed using ‘Elephant Feet’ which I had never heard of before, and hey presto, we had a room that worked for us pretty well! So thank you Premier Inn, you really helped to make our stay with you as relaxing as possible given my daughter’s very specialist needs.

An elephant foot
Elephant Feet

Shrewsbury is a beautiful town, even during a rainy November weekend, with a population similar to that of Galway, but surprisingly it’s not a popular tourist destination, even though it has good transport links, lots of historic buildings, pretty cafes, riverside walks and small specialist shops, such as Roly’s Fudge, where you can watch the fudge being made..

Making Fudge, Roly's Fudge

We ate a lot and not just fudge! At gorgeous restaurants and pubs such as these:

We also enjoyed meals at home with the family, and B loved the cosy family atmosphere and being the centre of attention 😍.

Happy B in Family House

Of course I took B shopping too, to pick up some Christmas presents and gifts for the two young adults who stayed in Dublin. We even tried out the town’s Changing Places toilet, next to this gorgeous church:

Church, Shrewsbury
Gratuitous photo of the church because it’s much prettier than the toilet

So all in all, it was a great success, over too quickly of course, but now we’ve done it once, hopefully we can do it again …

 

A birthday week fit for a princess #R2BC

My lovely 23 year old still loves everything pink, sparkly and princessy, so when the organisers of the inclusive Tymon Parkrun offered to celebrate B’s birthday one Saturday and asked for a theme, the first thing that popped into my head was Pop Princesses, so we went with that, and she had a wonderful morning with running in tutus (including me), music, presents, attention and cake too!

Smiley Princess Tymon
A beautiful photo block showing B looking very regal presented to us by Tymon Parkrun to commemorate her birthday run

Every princess needs to go to a birthday ball too, doesn’t she? So we did that on Sunday when we took part in a charity Zumba ‘ball’ with friends, and she head danced and laughed her way through the afternoon.

On Monday she enjoyed a feast fit for a princess with Breakfast at Tiffany’s Avoca with friends.

Another cake was enjoyed on Tuesday with her friends at her adult programme, and a day later I brought her to a preview of the amazing Wild Lights Display at Dublin Zoo, which she attended with the same group and her key worker. Sadly this didn’t go so well for her, once again proving my point that you can never take anything for granted with my disabled daughter, except that she usually prefers something familiar. So maybe she’d enjoy a return visit next year. Also I’d like to go 😀.

WIld Light 2019
All I saw of Wild Lights 😀

Thursday, Friday and Saturday evenings were quieter than planned, as my van was needed by another family member, but we did go back to Tymon Parkrun on Saturday morning to volunteer, and enjoyed a walk in the Palace Botanic Gardens with friends on Saturday afternoon.

What more could a princess want?

Head over to Lakes Single Mum for more reasons to be cheerful.

 

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

 

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 😂.

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