Reasons to be cheerful 13.4.18

Shoving my Pollyanna hat firmly back in my head, here’s a few reasons to be cheerful…

…I fixed the TV screen. It was infused with a brilliant shade of pink. My disabled daughter thought it was pretty, but it rather spoilt some of the programmes I enjoy while I’m seeing to her needs.. (Hint: it was actually easy to fix 😂😂)

…When friends ask ” if there’s any way we can help”, and you know they really mean it.

…I had to go to the dentist to order a new mouthguard to stop me grinding my teeth away to rubble at night (carer stress) and not only did he clean them, but he managed to remove a little brown streak on an incisor that had been bothering me for years.

…I finally tackled my shoulder pain and went to a sports injury clinic where an hour of lying on a physio table and submitting to needles and deep massage felt like pampering. As I’ve said before, it’s amazing how your perspective on things can change!

…B and I went to nearby Farmleigh House recently, somewhere we’ve visited many many times before. It really is a magical place, so to make it more entertaining for me, I began picking out features that fitted classic children’s stories. So, ta da, I give you Rapunzel’s Tower, Treebeard (an Ent from The Lord of The Rings) and Professor Kirke’s house where Lucy found the Wardrobe that led to Narnia….

Check out more reasons to be cheerful over at Lakes Single Mum.

 

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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

 

The Dentist

Not everything happens when it should, especially with the seismic shift to adulthood when you have a daughter with severe disabilities. So much change is happening so fast that some things just slip off the calendar, and you barely notice.

And so it was that B did not go to the dentist for 3 years. In my defence, I used to get a text reminder every year from the local health clinic to make an appointment, and that stopped without warning on her 18th birthday.

My recommendation: send out a letter explaining this, and advising what to do next.

Since I didn’t know what to do next, I consulted Facebook – as you do – but wasn’t particularly happy with the replies, and so the issue of a new dentist for B got put on the long finger. For a long time.

But New Year Resolutions and all that meant I decided to tackle the family health checks. And I remembered bringing B to another health clinic one time for an emergency appointment to get her teeth checked when she was very upset for no apparent reason – and of course she can’t tell me why.

I rang them, and explained the situation.

“No problem,” I was told.

It wasn’t urgent, so I was happy to get an appointment in March at a time that suited – just after B finishes her day programme of activities and before the rush hour begins 😀

She was noisily delighted to see me, no phobia of dentists for my happy daughter!

After a 10 minute mobile disco dancing session in the car (as you do), we drew up outside the clinic, currently in a run down sprawling old building, but not for long, as there is a shiny new replacement about to open next door. But for me it’s not about looks. It’s about accessibility, and how much stress is involved in the appointment.

On those criterion, this clinic scored top marks:

We arrived early, there was free parking, including disabled parking.
It’s wheelchair accessible.
The atmosphere was calm, and there were some free seats.
Reasonably clear instructions for new or occasional visitors.
A very short wait! Which is always good.
A lovely dentist and dental nurse.

I’m in awe of dentists who check my daughter’s teeth, as she normally bites down hard on anything you put in her mouth, including fingers. Yet somehow these trained professionals are able to check her teeth without complaint or upsetting her. I don’t think she actually enjoyed the experience. But she certainly cooperated.

Best of all, her teeth and gums are healthy. Despite her love of cake and chocolate, it seems she needs no dental work at all.

I don’t feel quite such a neglectful mother now!

R2BC at Mummy from the Heart

Yesterday

All my troubles…
…Seemed a bit more manageable.

Yesterday was a good day for me, with several reasons to be cheerful:

Baking

A request was made for a homemade chocolate cake, and it was agreed that my reliable 5 minute recipe would do. The result? Three happy young adults, and a bit of stress free baking therapy for me.

Running

Entries opened for the Dublin Women’s 10 kilometre Mini Marathon yesterday, and I got my place, and it’s in the runner’s section at the front –  I earned an automatic qualification thanks to last year’s time. So no pressure, and I now have something to look forward to, as last year’s Mini Marathon was definitely one of the best days of 2017 for me. There’s something very special about being part of such a massive event that involves running around the streets of Dublin with 40,000 other women.

The start line, Dublin Womens Mini Marathon 2017
The start of the 2017 Mini Marathon

Parading

Due to the family crisis, I forgot all about St Patrick’s Day and the need to organise something fun for B to do, but yesterday the lovely people in Snowflakes Autism Support once again invited her (and me) to march with them in a local parade. You might remember these photos that show just how much she loves St Patrick’s Day, and taking part seems to be even better than watching…

Disability Rights

Yesterday was an historic day for the disability community in Ireland. After TEN LONG YEARS Dáil Éireann (the Irish Parliament) finally voted to ratify the UN Convention on the Rights of People with Disabilities. Every other EU country has already done this, and I am one of many people who protested with weary regularity to make this happen. I won’t be stopping now either, as this is just the start, next we have to ensure that the Government acts on the convention, and actually improves the lives of disabled people in Ireland. But it was a good start.

So yesterday showed what even one good day can do for my mood: 24 hours later and I can still feel the positive effects. You could call it a highover perhaps… Let’s hope it’s the first of many 😀

Written yesterday…Finished today…

R2BC at Mummy from the Heart

 

Snow days

I don’t remember snow like this since 2010. And it wasn’t like this. Because didn’t life continued more or less as normal? No red alerts, no nasty beasties or curfews involved, no bread shortages either! At the risk of becoming one of those older people who says when I was young, when I was young we all tried to get to work or school unless we were completely snowed in: as a child who lived a 7 minute walk from school, I don’t recall ever having a day off due to snow. Apparently we are due an actual blizzard later today, and that is something to take seriously. But for now, the media messages look like overkill. Especially to those of us who are bemused that an inch or two of snow is causing more of a crisis here, than several feet would in other countries.

Yesterday the overnight snow began melting early in the morning so B and I decided to test the principle that there’s no such thing as bad weather, just inappropriate clothing. The ski jackets purchased from Lidl during the last big freeze, the waterproof shoes I invested in before Christmas, and B’s super warm, super dry GaryB blanket were all put on, and we headed out to potter around the local area and forage for milk.

B, Smiley, GaryB Blanket, snow, #sneachta, #TheBeastFromTheEast

At lunchtime the sun came out.

Sunshine, #theBeastfromtheeast

So I decided to bring B to a local shopping centre, for a wander. The media messages meant the roads were empty (hooray)…

Adverse weather conditions?

But they also meant many of the shops were closed due to ‘adverse weather conditions’.

CLosed shops

Luckily some were open, and they kept us entertained for an hour or so, plus we enjoyed a welcome coffee and cake at Costa.

It was a good day. A good snow day. Hopefully today will be the same.

R2BC at Mummy from the Heart 

Waving not drowning

Hello, I’m back! *Waves*. It’s a risk to say I’m feeling a little better – at least some of the time – but with any luck it might continue, and I might even do some ‘proper’ writing soon. The miserable posts I wrote in anger over the past two weeks are safely tucked away in drafts, and may never see the light of day. So this post is not about drowning in despair, but is instead a celebration of some of the deeply unexciting, but reasonably cheerful things that happened in the past two weeks…

Talking therapy with someone who already knows our situation (so I don’t have to go over it all again) seems to be helping a bit. At least it means I’m not dumping my worries on my friends…

My badly needed new phone – I’m always a bit intimidated by new phones, but I’m loving the fingerprint identification – so fast – and the battery life – so long. I don’t need an iPhone, so this is a budget option that looks like a good choice so far, apart from the camera, which is not very impressive!

Screen Shot 2018-02-16 at 09.29.16
Sunrise over Dublin 16.2.18

 

I’m reading a book – always a sign my mood has improved. It’s One Small Act of Kindness by Lucy Dillon, in case you’re interested, and there’s a great review of it here.

Two weeks ago I managed my first 10 kilometre run of 2018. Too slow, but a good start. Then I did another 10K with a friend, seven days later. Perhaps I’m back on track?

My smear test results came back clear, great reassurance for an awkward and uncomfortable few minutes at the GP surgery. Go do it, if you haven’t already!

An at home dinner with my eldest turned into an hour long chat – rare as our lives are both ridiculously busy. It was lovely. We also went to the cinema. This time to see the latest Maze Runner film – not something I would have chosen, but surprisingly enjoyable.

And finally, guess who has been arriving home every day full of happiness and joy, as though to make sure I keep my head above water?

For more reasons to be cheerful, head over to Lakes Single Mum.

R2BC-badge-2016-1024x683

 

 

 

 

 

Battling anxiety by scaring myself silly! #timetotalk

It’s no secret that the ongoing family crisis here has had a negative effect on my mental heath. I’ve never suffered with anxiety like this before. The effects have been frightening, and that resulted in a negative feedback loop where the fear made me more anxious. I retreated, avoided people – even friends – avoided situations and activities that suddenly seemed too difficult. From talking to friends, some of this may be age related too – my peers are experiencing similar issues – a loss of confidence, feeling anxious about everyday chores and activities, afraid of doing something stupid, of others seeing it, of feeling stupid yourself and therefore wanting to avoid anything that might be challenging.

But if you know me at all, you’ll also know that I hate feeling fearful, I hate feeling weak, I hate feeling vulnerable, so I searched around my head for strategies that would improve things. And I remembered the advice that facing your fears – in a gentle way – should make it easier to cope with them.

So for the past week, I’ve been making a real effort to get out of my comfort zone.

‘Me’ time was prescribed for the weekend, and I was lucky enough to get a sitter for Sunday morning, so I went for coffee on my own and then to the gym. With no worries about having to rush home after training, I tackled the showers. It’s only taken me two years… But in all fairness, communal changing rooms are very intimidating for women of a certain age, especially those who don’t have time to do all the grooming and tanning and exercise that’s expected! And I had stupid little worries about whether the lock I had would work on the locker, would the key be safe while I showered (I had visions of it being washed away…). All my fears were misplaced: no one  noticed me at all and my plan to manage the locker/shower process worked perfectly.

Then there was another incident in the saga of the fridge, that I’ve mentioned more than once over the years! On pulling it out one day, I was horrified to see dust almost filling the vents in the back. Dangerous, I thought. Luckily Google came to rescue and told me that I needed to vacuum the fridge coils. I’d never heard this before, and it took me a few days to tackle it, especially as you have to remove the back cover of the fridge which says ‘Technicians Only’ in very large letters. But I did, and nothing blew up or went on fire either!

Cutting and taking up winter leggings for B – because her legs are a non standard length and only summer leggings come in capri length. (Her clothing issues are worthy of a whole blog post in themselves –  I promise to write it one day 😀). I was afraid I’d ruin them of course, but I didn’t, and she’s wearing them today. Result.

Back in the gym again, and there were two young men demonstrating their handstand skills. It was impressive, and you couldn’t miss the demonstration either. And you know I’m competitive, right? And that I used to do school gymnastics as a child? And that I can resist everything except temptation? So when I’d finished my essential training (it is essential, it keeps me strong, and keeps my back healthy, so I can carry on caring) I got my breath back and then attempted a handstand, and then two more. I was only able to hold them for a couple of seconds, but still! The guy behind the desk winked at me on the way out ha ha #55notdeadyet.

Finally, I have agreed to go for talking therapy, to keep others happy, but very reluctantly. Here’s why:

It eats into the free time I don’t have.
It requires me to talk about all the crazy stuff that has happened in my life. Again. And I find that traumatic.

So you could say I’m scared of counselling too, so that’s another reason to do it. And because today, February 1st, is #timetotalk day, I really should make the effort to talk about mental health, and I hope you do too.

Time to talk

Because scaring myself has made me feel better, this will also be my reasons to be cheerful post for this week: read more over at Lakes Single Mum.

 

 

Reasons to be cheerful 27.1.18

Unfortunately B and I cannot do parkrun this morning, so instead I’m going to run around hunting for reasons to be cheerful…

…I bought some new everyday wear gym clothes in the sales to encourage me to exercise even when I can’t get out. As an Irish celebrity said recently:

“If I put my jeans on in the morning, that’s it, I’m not going to the gym that day.”

And I find the exact same thing happens here.

…My disabled daughter’s telly died this week and as she cannot entertain herself, TV is very important to her. She also has an iPad, but in her opinion that is solely to watch videos of her favourite bands and she will protest if you try to use it for any other purpose! So a replacement telly was needed. I began looking at reviews online, but she does NOT need a 32″ flat screen TV in her bedroom! I knew there was a very old TV in the attic, but had no idea if it was still usable. But guess what? All I had to do was plug it in, attach the Freesat connectors, and bingo! Over 100 channels for B to choose from. It’s neat and sturdy and it works. Why can’t I buy a TV like that any more?

…Welcoming several new families to the special needs club I help to run and seeing how happy their children were to be there.

…The joy of collecting my eldest daughter from the airport on Sunday after she represented the Irish branch of the family at a wedding.

…My Zumba class started up again for 2018.

…Coffee with one friend and a lovely email from another.

…Approaching an Irish delegate to the Davos World Economic Forum about the apparent lack of a hoist in a picture of the beautiful disabled toilet she shared on twitter. She promised to raise the issue of changing places toilets. Result!

(Incidentally Davos and Davros are too similar for me not to think that the World Economic Forum is not full of villains. Anyone else?)

…Making an apple pie with one of my other children.

…Attending the first meeting of the new Human Rights Committee at the CRC in Dublin, which runs the adult day programme that B attends and loves. The Committee plans to improve the lives of disabled people and has assembled a proactive group with a variety of backgrounds and skills. It was a very positive two hours, and a great break from my usual daily activities!

So that’s it for another week. Head over to Mummy from the Heart for more reasons to be cheerful xx

 

 

This Dutch Dam is just about holding…

There’s a well known poem called Welcome to Holland that would be familiar to most parents of disabled children.

I am not a fan, but Holland has stuck in my head as an analogy for special needs land, especially as it is below sea level, so constantly threatened with being overwhelmed, all those happy colourful windmills like the educational toys we hope our children will play with, and the clogs we use to kick ass to get everything they are entitled to and need.

Holland is protected by dams, and I often think of the tale of the boy who stuck his finger in a hole to prevent the country from flooding, because my job is like that too. Constantly plugging holes in the house, the services, the disability issues, and anything else you care to mention.

I plugged a lot of holes this week, and while a lot of worry was involved, it is satisfying when a plan comes together!

You know that storm we had last night? Well I came downstairs to find a hole where my back gate should be, and found it in pieces in the back lane. Luckily, replacing the garden gates had finally reached the top of my ‘to do’ list after about 5 years, and a new gate was sitting in the back just waiting to be installed. One call this morning and the job is done. #feelingaccomplished.

Winding back to the weekend, Parkrun with B on Saturday was soggy but uplifting as usual – B was smiling most of the time, I promise!

Parkrun 13.1.18

She was also smiling a lot on Sunday when we popped into Omni Shopping Centre. I wasn’t smiling so much that day as following a couple of weeks of dodgy sounding noises, the washing machine finally decided to go on strike halfway through a wash, that included B’s favourite pink blanket…

I’d previously rung the manufacturers, and the eye watering cost of an engineering visit plus likely parts and labour would certainly be more than the machine was worth, so after 7 years of valiant effort, I decided it would have to go to that great scrapheap in the sky, and frantically googled reviews to find a good budget replacement. Then the decision whether to suck up the delivery and installation charge, or bring it home and do the work myself. That was decided by a sick child, meaning that leaving the house was not an option and I needed a replacement machine even more urgently. As you can imagine.

And I have a little tale to tell you now…

I waved off the delivery man at about 1pm on Tuesday and admired my shiny new machine, and all was well, until I tried to open the door. It simply would not budge.

I texted the delivery man to let him know, then I rang the manufacturer helpline and they sounded surprised, and told me to try again. I braced my feet against the machine and yanked with all my might, but there was a little black catch that was stuck.

The emergency catch worked, but that involves taking off the service panel, and was  obviously not for everyday use!

The retailer offered to replace it, and I was resigned to another morning sitting at home, when I was contacted by the delivery man. He was even more surprised, and so was I when he told me he’d opened the door several times.

It turns out these new fangled machines have a ‘child’ lock that you have to switch off before trying to open the door, or select a wash.

I had a very red face…

Epilogue: it’s a fabulous machine, except I cannot see the logic of replacing dials with electronics, surely just one more thing to go wrong??

Have a good week xx

R2BC at Mummy from the Heart

A life changing week?

It could have been, and maybe it still will be, I’ll let you know… In the meantime, here are some related reasons to be cheerful…

First up: the house alarm is finally fixed: there was a fair bit of trepidation in this house about burglaries over the past seven days, but luckily no-one told the local criminals. So tout est bien qui finit bien, as my French teacher used to say.

Next up, health stuff. It is January after all. On Monday that involved the removal of the tooth with the cracked root and subsequently an abscess too. I am very relieved to see the back of it, even though it’s cost me a small fortune over the years.

Today I got my regular blood tests and a smear test too. Hopefully the results will be life-affirming: I don’t really worry about these things now, and being a 24/7 carer has given me a completely different perspective. In fact, *whispers*, I almost enjoyed all this healthcare: there I was, sitting or lying down in warm welcoming rooms, one with lovely calming music playing in the background, someone taking care of me for a change, and nothing to do but breathe.

Back to the weekend and a trip North to meet the Kerr family** who let B try out their spare running buggy in freezing conditions in a Newry car park. She seemed very comfortable and happy in it and buying one would be a great idea, but I have to look at the logistics first – she can’t travel in it, so I would need a bigger van to take it and her wheelchair and a hoist too! I need to buy a new one sometime soon anyway, before the current (diesel) grannymobile becomes completely worthless. Decisions, decisions. It could change both our lives though, and prevent existing equipment getting damaged. Also it GOES ON THE BEACH! B used to love the beach, in all weathers, but she’s not been able to access one for a number of years.

Also this week: cake and coffee out with a couple of friends, #Parkrun with B, I finished the post Christmas clean up with a little help, our lovely home hairdresser trimmed all our hair into submission, I read a whole book for the first time in ages (thanks to Jax for the recommendation), I got the car fixed, and attended a very useful meeting about B’s future (she was with me, of course).

Finally today I went to the launch of some new bungalows: they seem perfect, and the builder is happy to make any necessary tweaks to meet B’s specific disability needs. But they are a long way from Dublin and B’s service, so I couldn’t make an immediate decision. And all bar one were reserved by lunch time…. But just the fact that more new bungalows are being built is a reason to be cheerful, there’s hope that we will eventually be able to move somewhere more manageable.

R2BC at Mummy from the Heart

** The Kerr family also run Aaron’s Army, a non profit organisation, that provides support to families wishing to experience assisted running and raises funds to provide them with a disability jogging buggy. I think it’s a great cause.