Getting results for my disabled daughter #R2BC

August used to be the month when everyone goes on holidays, including most of the professionals who support my young adults, but not any more. It would be very ungrateful to complain about having too many appointments when so many families are fighting so hard to get anything, but it can feel a bit overwhelming at times!

However the appointments are yielding results (and information as per yesterday’s post).

Sleep

This week my disabled daughter attended a Night Positioning Clinic, which actually looks at all aspects of sleep, and finding a way to help her lie in bed that is both comfortable (so she can sleep) and therapeutic (so her body shape is maintained as far as possible, avoiding complications like scoliosis).  A sleep system is anything that supports the body in bed. Ideally B would sleep on her back in her soft sleep system that she has had for a number of years, but that has not worked well for a long time. So this week she was given this giant soft loose ‘W’ cushion (a bit like a bean bag) to put under her legs and with that she’s managed to sleep on her back for 3 out of the past 4 nights. So hopefully this will be a breakthrough for her.

Nappies

B is still using the one adult cloth nappy that I bought! I don’t think they’re as absorbent as a disposable nappy, but I’m using it almost every day, and hoping to buy more soon. I still need the disposables as well for now, and was a bit anxious when I heard that the health service was introducing a new supplier, especially when the new delivery didn’t arrive on the designated day, but they did arrive the next morning, and luckily I was in at the time.

Buggy

If you’ve been following my daughter’s story over the past few years you may have noticed that many of the photos feature her in an adult sized buggy, rather than a wheelchair, even though I vowed after her 21st birthday to use the wheelchair as much as possible to reflect her age.

BUT the buggy is a system with all the accessories you would find on a child’s version. Wheelchairs are not designed for Irish weather, or adults who need portable trays, or carers who need a chair with lots of storage. I still much prefer the buggy, and it’s also needed in case the wheelchair ever breaks, which has happened in the past. So I was devastated when one of the essential cables snapped. And then I was told that the manufacturer was no longer supplying parts for this model (it’s more than ten years old) and none of the Dublin based disability equipment firms wanted to know.

No guesses where I got details of a company that might be able to help.. Yep Facebook yet again. For all its faults, it’s a lifeline for families like mine. So yesterday saw me trundling down the motorway to lovely Laois to visit LifeStyle Mobility. Everyone there was so nice and helpful, and the buggy was fixed while I waited.

It was a rush to get it all done and back to Dublin before B came home, but I enjoyed the road trip, and even stopped to take this photo. It was great to get out of the city and get another problem solved too 💙

Screenshot 2019-08-10 at 11.48.36
Lovely Laois

Have a great week xx

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…

A better view

It’s not been a good day, and I scrawled a ranty angry post about the parent carer trap that I’m sure you don’t want to read, especially as most of it poured out when a friend dropped by..

So instead I will look forward to the long weekend, even though today’s abandoned paperwork will be hanging over me like a dark cloud.

Bank holiday weekends can be a bit lonely with everyone away, but thanks to social media I have a list of events that B and I can enjoy.

Expect photos, and a better view than this …

A better view

 

 

 

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…)

If you can’t beat ’em..

I’ve been increasingly annoyed by the barmy bike brigade in recent months – you know who I mean, the people who think that everyone should do every journey on a bike and if they don’t then they’re just being lazy, unimaginative and destroying the planet. They’ve been emboldened by the green wave in recent weeks, and recognising when I’m on the losing side, I got out my old bike this morning to go to an appointment when Google Maps told me it would be faster

And it was.

So perhaps I’m wrong when I argue that cycling is only for people with time on their hands who are fit, healthy, child free, financially solvent and most of all, NOT under time pressure?

I used to use the bike fairly regularly, but it’s been a few busy difficult years since I’ve cycled in the city, and I was interested to see what had changed now that cyclists are having a moment.

I can confirm that some things have not changed: It was still a scary, smelly and sweaty experience, and wet on the way back 🌦️

However, there are far more cycle lanes, and I noticed a big change in driver behaviour. They were much more aware, giving me a wide birth or crawling behind me until it was safe to overtake.

Cycling is also easier now I’m fitter, but that only happened thanks to my car (a story for another day).

On the downside my bike saddle is still uncomfortable, the front tyre has a slow puncture, and I’m still afraid the bike will get stolen.

I’m also afraid that I won’t find anywhere safe to leave and lock it when I get to my destination: that’s something motorists don’t really have to think about.

Another bug bear is not being officially allowed to cautiously turn left on a red light. But it’s okay to get off the bike and walk round the corner!

However the trip was a qualified success, so I will try to use my bike more, but there are only a few journeys for which it makes sense. Expenditure would also be needed on suitable clothes, possibly a helmet, a better bike lock, a new saddle, and a friendly local shop that can keep the bike in tip top condition!

After the appointment, I came home, dried off, and went back out again… after loading up the van with junk for the recycling centre.

So two journeys instead of one, not quite so much time saved after all.

Bike, cycling,

 

The Heron

Grey skies

Trees sag under the weight of humid heat

Breeze blows around the stink of waiting bins and stagnant water

Colors are dulled

But algae blooms toxic green

Shallow waters barely flow

Trudging over the bridge

Passed this way a thousand times

Nothing new

Then out of the corner of my eye, I see him

And the day is suddenly brighter

Pure white and soft grey

Standing proud and tall surveying his kingdom

The heron in the river.

Screenshot 2019-07-08 at 17.54.01

 

Some reasons to be cheerful

Okay so I was going to stay away, but reading this from the founder of Reasons to Be Cheerful reminded me of why I keep doing these posts, even if I don’t manage contentment as a result!

https://www.mummyfromtheheart.com/2019/06/the-importance-of-gratitude-r2bc.html

Be warned: today’s post won’t be stylishly written, as the demands on me and my time just keep escalating, and I learned this week that there is no end in sight. So every day is about survival – giving the two young adults in my care as much time, care and entertainment as I can manage along with household and disability management and admin. And bit of self care is needed too as you’ll see from the cheerful news below:

The week began and ended with my disabled daughter B and I volunteering at two different parkruns.

Screenshot 2019-07-06 at 11.46.48

Last Saturday night we both went to a 21st birthday party for one of her pals on her adult programme, here she is waiting for it all to get started.

Screenshot 2019-07-06 at 11.46.29

On Sunday her PA took her out for a few hours so I could reduce my stress levels by going out for a short run and also take youngest out to lunch for some one on one time with me.

A bad dream about the scary consequences of not tackling a household maintenance task   spurred me into action on Monday morning as soon as B left for the day and I still haven’t finished the decluttering..

On Tuesday B and I went to Greenan Farm and Maze in Co Wicklow for another wonderful day out with the Rainbow Junior Arch Club. There’s so much to see and do there, from farm animals to nature walks to history brought to life.

On Wednesday morning I met friends for coffee at the lovely Lovely Food Cafe, while in the evening I brought B to a Zumba class when our usual Wednesday evening activity was cancelled. She was in tears going in – I still don’t know why – but started giggling with joy as soon as the music and dancing got started.

Thursday saw me running in the Phoenix Park with my running group, and an evening trip to Tesco when a kind young woman spotted that something had fallen off my trolley (I was pulling it and pushing B in her wheelchair) and crossed the car park to get it for me when she realised I was exhausted.

More kindness on Friday when a friend on holiday spotted the bendy straws my daughter needs to drink on sale in a local shop and promised to bring back a couple of boxes for her.

Kindness is definitely underrated, and being on the receiving end of it this week really helped xx

R2BC at Mummy from the Heart 

 

Struggling

I turned 57 this week and while I had lovely run and lunch with friends to celebrate, this was a landmark birthday and my situation has really hit home.

You see my youngest turned 18 in April so legally my parenting responsibilities ended there.

Obviously I accepted a long time ago that I would be caring for my disabled daughter B for life.

But my youngest does not have an intellectual disability so I absolutely assumed that providing full time care for him would end this year.

It hasn’t.

There is no time scale on when it might and I just feel my life is really over now.

It’s not as though I’m any good at parenting him, the best I can say is that I’ve kept him alive. It’s not much of an achievement.

Why am I telling you this?

Because I don’t think I can manage a cheerful post this week, and anything I have half heartedly drafted is too angry for publication, so there will probably be fewer posts on here until I can get my head around things.

Thanks for reading.

 

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

Not another bloody hand massage! #CarersWeek

Are emergency department nurses offered free hand massages to entice them not to resign from their stressful jobs?

Or speech therapists, office administrators, housekeepers. No? Well why are little ‘treats’ like these expected to satisfy family carers who fulfil all the above roles and more, for little or no financial reward?

The week beginning June 10th is National Carer’s Week, and the role of the 370,000 family carers in Ireland will be acknowledged and highlighted, and thanked by a grateful nation who will then mostly leave them alone for another 12 months to get on the with their essential work with very little support.

Society still wants us to be saints, and if you look at the smiling kindly faces of carers in publicity photographs, that’s the image they are receiving.

Not photos of exhausted, resentful, angry carers with stained clothes and greasy hair. Or children juggling homework with changing nappies.

You see carers are not a homogenous group. Some feel privileged, some feel burdened, some feel it’s a private matter, some feel they have no choice.

Some care for a few years for an elderly parent, others face a lifetime of caring for one or more disabled children.

Some have plenty of support, financially and physically, with reasonably good services, as well as help from family and community, who live in suitable accommodation and who enjoy respite allowing proper breaks from caring and even holidays. Some are in situations so dire that they feel suicidal at times.

There are carers of all ages: Children who care for parents or siblings after school, perhaps missing out on activities and friendships.

Men and women who give up their careers to care for disabled children or elderly parents.

Partners of older adults who cope with the declining health of someone they’ve loved all their lives.

All make sacrifices, some willingly, some reluctantly. Few are truly acknowledged for what they do, or given the support to ensure that they and those they care for, can lead good lives.

My wish list this carer’s week would be for a tailored support plan for every family with regular reviews that could include services such as real respite, an end to means testing of benefits, suitable housing or adaptations, counselling services (in home if necessary), and future planning. What’s on yours?

As for me? If I have any free time this week, I won’t be getting a free hand massage. Instead you’ll find me at the gym, trying to work off the anger I feel about how carers are treated.

Happy Carers Week!