Creating a good life WITH my disabled daughter

‘Ordinary lives in ordinary places’ is the buzz phrase in disability policy right now, and you’ll have seen it before on this blog.

It appears to mean providing the supports and services that disabled people need to live independently in the community. But as far as I’m aware there’s no room in this policy for those with expensive high supports needs (severe/profound disabilities). The implicit assumption is that families will provide cradle to grave care and be responsible for ensuring that their loved ones enjoy a fulfilling life too.

I think that’s very unfair on my disabled daughter B, but for now I’m going to make best of it, and try to create a good life for both of us.

And this week we made a lot of progress.

Powerchair Training

On Wednesday I went to see B learning how to use a powerchair. It’s early days, but she has the most patient person I have ever met working with her. I’m so grateful she has been given this opportunity, and while she has a lot more progress to make, it was fabulous to see her reaching for the joystick, especially as it’s currently positioned in a difficult place for her to reach, due to her limited range of movement.

A dual control powerchair would give her more freedom, and conserve some of my energy too. So I really hope she succeeds in proving she can do this. I think she can.

Bowling

B enjoys bowling, especially with friends and when it’s quiet enough so she can hear the background music. It’s also one of the few sports she can do unaided, though when we went this week with the Rainbow Junior Arch Club, she needed a bit of hand over hand assistance to remind her what to do.

But I am not a fan! Especially as bowling alleys are usually hot, dark and noisy, and the sun always seems to be shining outside, where I’d much rather be. But a good life has to mean that I must try and enjoy B’s favourite activities, as well as bringing her to things I know we both enjoy – like music festivals. My eldest daughter always tells me that I can learn to love something if I persevere with it – she said it worked for her and green tea…. Going with the Club at a quiet time meant it was much more enjoyable for me, and I will try my best to go again.

Running in the Park

I haven’t taken part in an evening race for about 20 years, but I decided to be brave and try and run a 5K race pushing B on Thursday evening. It was organised by a friend of mine in aid of Snowflakes Autism, a local charity that helped one of my other children in the past.

It was like pushing a tank: her adult buggy definitely needs a service, and I might even ask Santa for a jogging buggy to make running easier still. But it was great fun and we even had some very welcome help along the way. And our time? 35 minutes and 22 seconds. Not too shabby ☺

So those are my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

When the summer season is the same (but sunny)

Well almost the same…

This year the days and weeks have meandered by, barely changing with the seasons. My disabled daughter’s adult service is year round, which is good for both of us, and it means she still heads off happily on the bus from Monday to Friday to all her activities and her friends. Occasionally I bring her out for the day, mainly as part of the Rainbow Junior Arch Club summer programme. My youngest is at home most of the time, regardless of season, while my eldest works two jobs, and they are now year round, so her busy routine barely changes either!

Over the years I’ve looked forward to the holidays, dreaded the holidays, and now I barely notice them, as we slide into the summer months, apart from the sun and the sweat. Life just continues. There’s still appointments to go to, forms to complete, meetings to attend, friends to see. It’s comforting rather than cheerful, but comfort is something to be treasured too.

So what else is new?

I could tell you about the broken boiler, the building work that’s going well, but is taking 6 weeks instead of 2, and all the usual ups and downs of family life.

But let’s look at the good things instead, a new Marvel film meant a rare night out with eldest and youngest, a coffee shop meet up to discuss club business (and more), and more festivals to attend with B. This time the Rose Festival in Dublin’s Clontarf, which is about a lot more than flowers. She wasn’t on the best of form, but these certainly made her smile!

So those are my reasons to be cheerful for this week. Head over to Mummy from the Heart for more.

 

The tale of the nails, the maze, the box and the pillow

My disabled daughter’s social worker once asked me to name the one thing that would make our lives easier.

“A handyman,” I replied.

It was not the answer she expected, and she never got back to me with any contacts!

For now I continue to muddle through the endless breakages, breakdowns, problems and issues associated with living in a very old house, with some help from friends and family.

I was reminded of that conversation this week when the shower riser rail crashed to floor and luckily no-one was in it at the time.

I’ve fixed it for now with three nails and some Duct tape. I’ve no illusions about this being a permanent solution, but I don’t even know who to ask for help, as I don’t want to pay for a plumber and I’ve still no handyman. But feeling cheerful that it’s safe to use once again .

And I’ve a few more reasons too:

The Maze

Ok, so I wrote about our trip to Kildare Maze earlier in the week, but the excuse to get out and enjoy a road trip and some real countryside and fresh air made me giddy and happy too!

The Box

My disabled daughter B never fails to surprise me. I knew something was up when I heard the giggle that told me she was doing something ‘naughty’. Well not really, but I played along anyway. I’d sellotaped a box to her tray to help support her elbow and make it easier for her to feed herself. It wasn’t very successful idea. But when my back was turned she managed to pull it away, and began trying to open it. It took her 20 minutes to do what she wanted, due to her limited hand function, but eventually she succeeded.

one
If I can’t see you, you can’t see what I’m doing!
Two
Will this work?
Three
Or this?
Four
I think I’ve solved the problem…
Five
But I don’t actually want the silly pink tray
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At last, I’ve done it!

Sleep

It was obviously too soon to announce that my sleep problems were over. Too much much to do and B getting a bout of constipation meant I’ve been struggling to string a sensible sentence together for the past week. But not on Saturday. Seven hours of unbroken sleep and I had my most productive day in a long time – without ignoring the needs of the children either.

Hope you have lots of reasons to be cheerful too this week, and head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

Sticking my old head in the sand and having fun doing it

I *may* have mentioned that I have a fairly scary birthday coming up soon, and I am in complete denial. I’m in fear that I may have to begin acting my age, wearing beige cardigans, and going to Neil Diamond concerts (not my thing, apologies if it’s yours). So if this post seems a little crazy, that’s why. I’m having a last hurrah, with the expectation of old age descending like a metal shutter some time next week…

In the meantime, I have all these reasons to be cheerful:

…My disabled and non-verbal daughter B clearly said ‘mum’. I don’t know if it was a word or just a sound but it was lovely to hear.

…Being asked if I was B’s sister at a communion party – it’s amazing what long hair and sunglasses can hide!

…The house now has two ramps for B, so she can enter and exit through the front door, like everyone else. And she’s enjoying it too.

…A flower in bloom, one I planted myself, and trained up a trellis that I put up myself, with the help of my eldest daughter and a drill.

Bloom, flower,, clematis, trellis.png

…Beating the kids at a fitness challenge at a local Family Fun Day, and B loving every minute of it.

Smiley, B, disabled daughter,

…Climbing the Wishing Tree on the top of the Hill of Tara to tie a wish for a friend, after much coffee, madness and cake…

If you enjoyed reading this, why not head over to Mummy from the Heart for more reasons to be cheerful.

 

A spoonful of sugar

I hope you’ve noticed all the positive posts on here? I’m trying really hard to stop moaning, and it’s helping me too. But the problems in my life haven’t evaporated with the summer sun, they’re still floating around and keeping my anxiety levels bobbing up and down.

I’ve been forcing myself to drink tea on shaky days, but without feeling much relief. In desperation one day recently I chucked in a spoonful of sugar as well, and the difference was amazing! Who knew that the biggest dietary enemy was just what I need to feel better? So finding something that helps is my first reason to be cheerful for this week.

And here’s a few more…

… I fixed the coffee machine. It had almost completely stopped working and I was considering throwing it out until my google searches finally revealed the solution to the problem. Result. And a great feeling of competence.

… After SEVEN years, I’ve finally got the garden looking reasonable and as low maintenance as possible. Well apart from my pots. Have to have a few flowers.

… A new low cost gym, a new Lidl and one of my favourite coffee shops are all opening just up the road. Perhaps I don’t want to move after all.

… Breakfast and a run on the beach with friends at a local seaside town.

Balbriggan beach, breakfast running,

… A mini holiday and a few outings when family visited for a long weekend.

Phoenix Park, family,

Lots of great news for my disabled daughter.

… After the training, the qualifying, the arranging, the day is finally here : I’m running in the world’s biggest women only race tomorrow, the fabulous Dublin Women’s Mini Marathon. Cannot. Wait.

Dublin Women's Mini Marathon,

… A fairly major birthday looms and I’ve decided to spoil myself a little bit. Watch this space 😀😀

Hope you had a good week xx

(Head over to Lakes Single Mum for more reasons to be cheerful)

 

A glimmer of hope and a productive week

There was a big breakthrough for one of my children this week, and a break from each other for both of us. It wasn’t respite, but it certainly felt like it.

I was so productive, I exercised every day, met a friend for coffee, sorted out the garden, made a massive dent in the paperwork and was able to respond to a couple of requests quickly, spent time chatting and watching TV with my other two children, and this was the laundry basket most days…

Laundry basket, reasons to be cheerful,

Perhaps it shows the importance of respite too? I got a break from the daily stew of emotional exhaustion, worry, overwhelm and guilt.  It was great.

I think that having hope for the future gives you more energy for the present, and this week gave me a glimmer of hope that made me feel very cheerful indeed. So that’s one short, but very important reason for this week.

R2BC at Mummy from the Heart

My dream home and other reasons to be cheerful

Life’s dramas just keep continuing with the past seven days including both a tragic death and a surprise wedding, sending emotions skittering in all directions. By Thursday I needed a breathing space and – you’ve guessed it – I headed for the beach. But I also wanted to have a closer look at a semi-detached bungalow I’d seen for sale. And it had everything I would be looking for if I got the chance to move away with my disabled daughter: converted for wheelchair access and use, within 30 minutes drive of Dublin city centre and with a glorious sea view…

Bungalow, wheelchair accessible, Portrane, Sea Views, affordable property

The lovely owner let me take this photo and even showed me around. If I could, I would buy it tomorrow. It’s great to know that my dream home does actually exist.

And another bonus – for once I did not feel insanely jealous of the average office worker, as I ran along the nearby beach in the sunshine.

Portrane, Rogerstown, beach, boats,So what other good things happened this week? Well I got to feel competent and useful twice in one week and that does not happen very often these days, as you know if you’re a regular reader:

oftencalledcathy 1 Tech 0

I helped a fellow blogger develop a Go Fund Me Widget for her side bar – helps me forget being called technophobe a few years ago, by someone who shall remain nameless.

Multi-tasking

I attended a disability conference on Wednesday – really I had no excuse as it was free and only 15 minutes walk from my house. It was great to catch up with other parents and also to put my worky skills to use by listening, live tweeting and typing up notes all at the same time, and then sharing them too.

Cheese on the menu

Apparently eating cheese is no longer considered an unhealthy habit. This is great news for someone who guiltily consumes a large block of it every single week.

Sleep

This used to be an obsession of mine, as you may remember. Lack of sleep and broken sleep brought me to the edge of reason at  times. But no longer. It’s true that I rarely get more than 6 hours, but I also rarely get up more then once in the night, and now I sleep in an adjacent room to my daughter, I no longer have to run up and down the stairs in the cold and dark to see what she needs.

Hope you had a good week xx

R2BC at Mummy from the Heart

Panda Chocolate Muffins and other reasons to be cheerful

This week has been all about health matters relating to family and friends, with more appointments than I care to think about and a bit too much stress. The answer? Pinny on and into the kitchen to try and recreate an adorable idea I’d seen on twitter to make some extra special muffins for a friend in need.

Panda Cakes

In case you’re interested, I took the design from this post but made the muffins and icing from scratch:

http://letgoofbeingperfect.com/recipes/panda-cupcakes/

They certainly made me feel very cheerful! And I have a few other reasons too:

Outings

A bank holiday weekend means just one thing here: lots of outings with my disabled daughter B. You may have already read about our trip to Airfield Estate and Farm on the Monday: It was a great day out, and I especially love the incongruity of finding places like this within the city boundaries.

A farm in the city, hedgerow, field, .jpg

My eldest and youngest weren’t ignored either: I managed to book a babysitter for Monday night and bring them out to the cinema, something else to be cheerful about as long time readers will know how impossible that was for a few years.

On Sunday we spent a couple of hours at a rainy Farmleigh House and Estate. Spirits were definitely not dampened though

Earrings

I only have two piercings: one hole in each ear lobe, That’s it. They’ve been there for nearly 40 years, but I was tempted to let them go, let them close up. I was down to my last 3 pairs (all Christmassy) and getting more seemed such a hassle, because I have sensitive skin and there’s only one shop that can guarantee pain-free earrings and that’s good old M&S, but I don’t always like the styles they sell.

But I pulled myself together, told myself off for being such a martyr, and on Saturday we went for an extended trip to a large local shopping centre with a wish list of odds and sods and earrings. B loved the day out and I came home with these, which should  keep me going over the summer months.

So that’s it for this week, hope you had a good one xx

R2BC at Mummy from the Heart

Like the Wicklow Hills

So the Easter holidays were like the Wicklow Hills – lots of ups and downs, with storms and sunshine turn by turn. Beginning on the highest peak, with the Great Ireland Run, dipping down to a fairly grim valley during the first week, followed by a wonderful weekend of outings with my disabled daughter B, and then a few days that went surprisingly well.

And you know what happens when busy people finally get to relax? The germs all queue up to take advantage, so yes, I’ve been on sick list since last Friday. And feeling a bit numb and uninterested in anything very much. Even taking photos. Even taking blossom photos before the high winds scattered the petals into pink drifts along the pavements. So you’ll have to make do with this old one instead.

cherry blossom

So I’ve a few half hearted reasons to be cheerful this week. It’s not been bad, just a bit ordinary, and perhaps I should be grateful for that too!

My fitness levels paid off over the weekend – despite the stupid virus I was able to keep going and even push my daughter into town on Sunday – something I found hard to do at all two years ago.

I’m reading a book again. In fact I’m rereading a book, and it’s the real thing, solid with pages just starting to yellow at the edges, the spine with the smile lines of a book that’s been well loved.

And it got me wondering why I’m still struggling to find new authors right now. Where’s the next Nick Hornsby, John Wyndham, Nevil Shute, Graham Greene, J.R.R. Tolkien, Anne McCaffrey? All suggestions welcome.

I’ve been playing game of thrones with the dandelion hordes – either decapitating them with a well aimed kick or pouring boiling water on them. Oddly satisfying and at least I’m not using chemical warfare.

A morning spent at a carers’ forum, billed as an opportunity for carers to express their grievances and suggest improvements directly to Government. I’m not expecting anything to change as a result, but it was a great opportunity to catch up with Facebook friends old and new.

With a bank holiday weekend and lots of appointments next week, things are about to get more interesting…

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

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All the fun of the farm

Farms don’t usually feature in the fun activities I organise to entertain my disabled daughter B. After all, they don’t generally feature live music, busy shopping streets or even chocolate cake!

But this particular farm trip went unexpectedly well. From our home to Newgrange Farm in Co Meath was a good 40 minute car drive, plenty of time for dancing down the back to her favourite tunes. And it all got better from there. Organised by the Rainbow Junior Arch Club, the trip was held on Easter Saturday, which meant the place was buzzing, but not too busy.

B petted the baby animals, laughed at the other children and even went exploring in the hay maze.


Sunday featured a big roast dinner with all three of my children at the table at the same time (hadn’t happened since Christmas) followed by a yummy cheesecake made by my eldest – my belt has been loosened..

And Monday was even better: B and I headed out to sample the inaugural Cruinniú na Cásca Festival that was providing free events all over the country. The most publicised was in St Stephen’s Green in central Dublin, but as that seemed aimed at families of small children, we took a chance and headed for nearby Smithfield instead, which promised interactive science activities, wall painting, slam poetry and artisan food and drink.

Best of all, there was lots of live music. Even so I wasn’t expecting to see bands I actually love including The Heathers and We Cut Corners, nor was there any advance mention of the elevated disabled viewing area, meaning we had a fantastic view of the stage and B loved every second as you can see if you click on this video snippet.

It was a wonderful way to end the Easter weekend: my reason to be cheerful for this week.

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