Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

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

 

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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.

 

Nostophobia

Nostophobia is the fear of returning home. Okay, okay, so I’ve been self diagnosing again, but without any meaningful help, it really is up to me to try and work out why I’m finding life so difficult. The why is the first stage in tackling the problem.

You see I had time to think today. I was able to leave the house for an extended period – 4 hours – during which time I went to my weekly Zumba class, and then flew drove very fast (but not faster than the speed limit) to Newry to post a parcel that I was unable to post in Dublin. Don’t ask. Apparently lots of and lots of new restrictions have been brought in since I last tried to send a parcel anywhere. And the price has gone stratospheric. The cost of the diesel for the trip was probably funded by the difference in postage between Dublin and Newry, *sigh*.

Anyway, I’m digressing. As usual. I know have a bad habit of trying to explain everything, whether you’re interested or not.

Back to the Nostophobia. I’d never heard of it, but it fits some of the issues that affect me. After an extended period away from home today, I began to feel normal again. Able to function, talk properly, drive safely, and make sensible decisions.

That all changed when I walked in through the front door, and my anxiety levels immediately went off the scale. I always said that this house would be too much for a domestically challenged person like me to manage on my own, and so it has proved. On top of that I am now caring for two young adults with conflicting needs, and coping with the ever mounting pile of household and disability administration. My ‘to do’ list just gets longer and longer, and that’s without even considering the stuff that other people do, like switching utility providers to save money, redecorating or taking up knitting!

When I’m in the house, I’m constantly under pressure and constantly on edge, there’s so much stress here, and within these walls are so many bad memories.

It’s another reason to look for a bungalow, as a fresh start might be just the cure I need. I want to say no to Nostophobia and yes to a home where I can breathe a sigh of relief when I put the key in the door. Where my home is a sanctuary, where I can relax and feel safe.

New house, new start, new me… Sounds good, dontcha think??

 

What’s It All For?

Everything is a struggle again. All the juggling, dealing with the on going stress of the problems I’m not writing about on here, trying to put my positive face on in public. The weeks slide by without progress or resolution. I feel my family has been abandoned, and I know so well that I’m not the only one.

And if I can’t write about the only topic that consumes my thoughts, how can I write at all?

I just haven’t got the heart to write yet another cheery post about our Easter outings. I planned to, I really did. I even took the photos and saved them in a little folder on my desktop. All ready to go. I might even give you a sneak peak later.

I was brought up to believe that I could follow my dreams, achieve whatever I wanted if I was determined enough, and of course those beliefs were backed up with the support of a cradle to grave welfare state: you paid into it when you were working, and used the services when you needed them. You earned enough to be able to buy a house, you could get a mortgage because your job was permanent. It may have been pensionable too. The security this gave people of my generation is impossible to overstate. But even for us, it’s starting to falling apart, just as many of us need the services we thought we were funding through our taxes when we were younger.

Perhaps it’s better that my children have learned the hard way that life is mean, life is tough, and you have to make your own luck, that the world is becoming a place where one needy group fights another for scarce resources and publicity. Except that resources are not scarce at all. The world is more wealthy than it’s ever been. But those who have the wealth are reluctant to share it with others.

I wish I could accept my life with grace, as so many others do who are dealing with far more difficult situations, and accept that it may not change, because that’s the way the future looks. But I was always greedy, I always wanted more out of life. More and then MORE again 😀. But it feels as though I’m getting less and less, that I’m trapped in a cage, partly of my own making. Yet people still ask me where I’m going on my holidays, even though I haven’t had a foreign holiday since 1996 (not a typo). People still ask me about respite, even though my disabled daughter has had only a handful of days over the years and none since 2015. My other qualifying child has never had respite. People still ask me how work is going, even though I lost the job I loved during the Economic Crash in 2008. People assume I get lots of support, yet the last time I felt that someone was really sharing the load was summer 2011 during a weekend at my Dad’s house before he succumbed to his final illness. Life is about to get trickier too, as my eldest and only non-disabled child begins a new job away in two weeks, though she may be home at weekends.

So I am finding everything very difficult once again, but I didn’t want this blog to become a moanfest. There are too many mixed messages on mental health for me to feel comfortable sharing my worries all the time:

Avoid negativity, they say: and I don’t want you to feel you have to avoid my blog.

Cut negative people out of your life, they say: yet I would hate for my friends to feel they had to do that to me.

Tell someone your problems, they say: yet even counsellors need counselling to cope with what they hear from clients, so who would want to burden their friends?

I heard a desperate woman on the radio in January who was facing repossession of her home and she told no one of her plight, “because everyone has their problems”.

Yet we’re told it’s good to talk…

Some people manage to talk about their problems in a way that makes you feel sympathetic, makes you feel privileged that they chose you as a confidante. Some don’t: I’ve called it emotional dumping, when someone pours out all their problems to you, and they feel better afterwards, but leave you feeling stressed and exhausted. Though airing my problems usually makes me feel worse. Except on here, for reasons I don’t understand.

The Government tells us to eat healthily, take exercise, switch off our phones etc as though our mental health is entirely within our control, and basically our responsibility. In fact many people struggle with mental health issues as a result of Government policy. Medication and counselling are pushed on people, yet they just deal with the symptoms, not the cause, which is often the lack of state services and support!

All I can do is keep going, doing lots of self care, even when I don’t feel like it, even when it feels like just one more thing on the desperately long ‘to do’ list. Even when I wonder why I am bothering at all.

So what’s it all for? I’m lucky that my disabled daughter’s zest for life, and love for those who love her give me a reasons to drag my weary ass out of bed every day. Because I am tired, physically, mentally and emotionally. But you’d keep going too, wouldn’t you, for this?

Bronwen in Farmleigh 2018

 

 

After I die

After I die, what will happen to my disabled daughter B?

B, disabiity, after i die

Yes, there are lots of people who love her and appreciate her, including her brother and sister, but who will take care of her? I don’t want her siblings to take on that responsibility, so who will make sure that she keeps smiling? Who will do all the things that I do?

Will she feel abandoned by the one person who was always there for her?

Can you explain death to someone who is severely disabled? Or will she just sink into sadness until I am completely forgotten?

What sort of life will she have? Will she be able to live with friends? Or people that she finds entertaining? Will anyone even consider that? Or will she be expected to be thankful for what she is given… After all, God forbid she should be entitled to anything. No worse insult these days it seems.

Will anyone have the patience to help her to feed herself? To clean up the mess afterwards? Or will they just feed her quickly, because they are under pressure to move on to the next person.

Will she be an embarrassment? She can be very loud, especially when she is laughing with delight. Perhaps her carers will think she is too noisy, and keep her away from other people. Take her to out of the way places where she won’t bother anyone. She’ll be quieter then too, and maybe they will think that she doesn’t enjoy outings, and stop them completely. It would be easier, after all.

Will anyone bother with her toilet training? Especially as she will always need nappies. Perhaps she should just ‘go’ in them. That would probably save time and money. Never mind her dignity and all that. Never mind her pride when she uses the toilet correctly. And then there’s health and safety. The equipment I use is old and needs replacing, but it seems that there are no companies that provide toileting equipment for floppy adults…

Will someone make sure that she is entertained: give her something to hold, something to watch. Or will she just be left to sit. Then she’ll be quiet, she’ll retreat into herself, she’ll be easy to manage.

Will she still get chocolate cake? Or will someone decide that she needs a healthy diet. Even though she adores sweet things.

Will people still talk to her, when her replies will not be in words?

Will she have loving caregivers? Or a succession of poorly paid and overworked helpers who do not have any time and energy to give to her.

Perhaps I am just being arrogant and unfair if I think that no-one else would look after her like I do – and I’m very far from perfect. I’ve seen comments like that about mothers like me. Perhaps she will adapt to whatever life throws at her, and use her winning smile to get what she needs. Perhaps I am wrong.

But you know what? I don’t want to risk being right. I’m her Mum, I don’t believe that I can be replaced. So I can’t die, I just can’t. At least not for a very long time.

(An old post updated)

 

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 

Our plastic straw story and some alternatives to try

Updated with information provided by the learning disabled charity hft.

This is what independence looks like for my severely disabled daughter B.

B, straw, independence

She can do very little for herself, but drinking is one thing she can do. Yet with the understandable concern about plastic pollution, this little bit of independence could be taken away from her. Which is upsetting?

But first I’d like to explain how we got to this point, about 18 years ago…

It was time to wean my daughter off bottles. I knew she was severely disabled, but at that stage I was all for everything being age appropriate, and I didn’t want her looking like a baby. I encouraged her to try all kinds of beakers and cups. Some she couldn’t lift at all, others she lifted but spilt the contents, none got near her mouth. It was a problem.

At the same time I was working with her to develop the building blocks of speech. I spent hours encouraging her to blow tissues off my hand, and more hours putting straws in her mouth to encourage her to suck through them. She couldn’t see the point of the tissue game, but when I inserted straws into cartons of fruit juice and sometimes squeezed the cartons gently, she got the reward of a little juice, and eventually she worked out how to do it herself.

She never developed intelligible speech, but at least she learned to drink independently. Important for her self esteem, giving her a bit of control, avoiding choking incidents, and giving her carer a break too!

Now plastic straws have become the emblem of the campaign to clean up our oceans. There’s pressure to ban them, and some organisations have already done so. I am not the only person to be concerned about this – disability groups in the UK are calling for a pause, and bloggers are too.

When I tweeted about this issue I was sent this article about alternatives that are already available, so in the interests of research and being ready for the change, I decided to try them out.

I immediately rejected Bamboo straws (not bendable), paper straws (guaranteed to get chewed and soggy) and glass straws (too dangerous if bitten), but we tried these three options found on amazon…

Straws

Metal straws

These are bent but not bendable and are long, so B doesn’t have to lift her drink if she doesn’t feel like trying. They fit her beaker and the spill proof lids she uses. They are cold and hard, but B seemed to cope with that okay, though she got fed up by lunchtime and I had to give her a plastic one. I will keep persisting with them, though I would worry about how hygienic they would be when used with a milk drink – despite the brush that is provided for cleaning.

Silicone Straws

Silicone straws are much fatter and softer than plastic straws. They don’t fit the spill proof lids she uses, so she needed close supervision while using them. She wasn’t keen on the feel of them and I was also concerned she would take too much liquid in one go and choke.

Biodegradable Straws

About four times as expensive as standard plastic straws, and they weren’t the long ones that B ideally needs. Apparently they start deteriorating on contact with liquid, but I have now been told that they are not toxic like plastic and will not cause problems even when reused. I also wondered which type of bin should these straw go into, and I now know it’s the food waste bin – so long as the waste is sent to an industrial composter.  B liked these straws anyway, so that’s a good start.

Conclusion

I don’t think the silicone straws will work for B. The steel straws are the correct length but clearly have a different mouth feel. I will encourage B to keep trying them, together with the biodegradable straws. But it would be great if the latter looked different to normal plastic straws, so we don’t get judged by other people who don’t understand. And can we have longer ones too please? Because sometimes that’s what she needs.

Finally, while I’m all for saving the world, it does feel like it’s all being put on the consumer to do this. Where in this campaign are the big companies and corporations, what are they doing? (Apart from producing expensive alternatives to plastic straws).

Skip the straw may be a great slogan, but please remember that some people will need budget priced alternatives …