Reasons to be Cheerful 15.6.18

Another busy fortnight is almost over: fewer appointments and less training, but a lot of catching up to do! I’ve reconnected with my morning running group in the Phoenix Park, returned to my Zumba class, and successfully attended two disability-related Annual General Meetings with my disabled daughter B. Plus a physiotherapy appointment for my trapped nerves, and that’s on top of my caring duties.

Most of the really cheerful stuff took place over the two weekends (including a bank holiday here in Ireland on Monday 4th June).

Inclusive Zumba – last Friday night B and I went to a charity Zumba event. It was wheelchair accessible, loud and fabulous. She mostly watched and laughed, but I managed to include her in some of the routines. We’ll definitely be going to more events like this.

A simple trip to town – sometimes I haven’t the energy to deal with all the unknown challenges that B and I may face if I try to bring her to one of the many events held every weekend during the summer. And sometimes the familiar is just as enjoyable for my daughter, so last Sunday we spent a couple of hours wandering around Dublin City Centre and she had a great time..

Bronwen, Dublin City, 2018

Bloom – the previous weekend we had a wonderful day out at one of Ireland’s largest Festivals. You can read about the fun we had here..

Bloom 2018

Parkrun Volunteering – B and I gave out the tokens at the finish line of our local Parkrun recently. I enjoyed it, but B didn’t seem to think it was as entertaining as actually running around the course!

Mini Marathon – B had lunch with her sister while I pounded the streets of Dublin with 30,000 other women on Bank Holiday Sunday. Sadly my training was not sufficient to cope with the oven-like heat, and my finish time was 57.57 for the 10K course, slower than I’d planned. But I had great company at the start: not just my current running buddy, but also my training partner from the 90s, it was lovely to meet her again and discover that we are both still running. You can see us in this 1994 photo of the start line.

Mini Marathon 1994 Irish Times

For more reasons to be cheerful, head over to Lakes Single Mum, and have a good week xx

 

 

 

 

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Reasons to be Cheerful 1.6.18

Once again May was a ridiculously busy and sunny month, and I spent far too much time cooped up in a hot car driving to twelve big appointments for the two young adults I care for, formerly known as my two younger children. All these appointments took place during the hours when B is supposed to be attending her adult day programme, or my ‘time off’ as some people mistakenly describe it! I’ve also been distracted by other issues, but today I’m back with a positivity post 😀.

1. Funding for B’s day programme that she loves has been confirmed for another year. It’s not been made permanent yet, but I will keep hoping.

2. A few firsts – B voted with assistance in the recent referendum, she attended an inclusive Zumba class, and she thoroughly enjoyed being pushed around the inaugural AsIAm 5 kilometre Run for Autism. As you can see.

As I Am 2

3. I baked for the first time in ages, a healthy carrot and banana bread recipe that I clipped from a newspaper. It was delicious.

Banana and Carrot bread

4. As a lone female householder, I regularly get ripped off by the people I pay to do the endless maintenance jobs that are needed to patch up this old house. This week I got fed up with waiting and fixed a badly done job myself. It seems all I needed was a screwdriver and a paintbrush – to be used separately though! It’s good to feel competent occasionally 😍.

And that’s it for another week, hope you have a good one xx

R2BC at Mummy from the Heart

Conversion

It’s been a week of achievements, but I was finding it hard to convert them into cheerfulness. And then Saturday happened.

It began around 6am, as usual. Followed by a tough but enjoyable Parkrun at 9.30am.

Parkrun May 12 2018

Home again to collect youngest and head to his activity, B and I eating a packed lunch in the sunshine with good company again, while we waited.

Then back home so B could use the toilet, and gathering everything I needed to help my friend run the end of year party for all the special needs children and their families at the Rainbow Junior Arch Club. Exhausting but rewarding.

Finally there was an 18th birthday party of a family friend and BOTH my younger two came with me. We weren’t able to stay that long, but long enough to enjoy the pièce de résistance, a delicious birthday strawberry and white chocolate cheesecake 😍

For all this to happen I had to get my daughter and her wheelchair in and out of my van 16 times in the one day and hoist her 10 times (on my own which is illegal for anyone else).

More proof of why I need to keep fit and strong, so I can continue to give my disabled daughter and her siblings the life they deserve.

The rest of the week consisted of a bank holiday and four days of appointments, including B’s annual neurology and orthopaedic appointments. Reasonably good news from both of these: her seizure rate may have slightly improved and her physical condition has not worsened, so no change to medications or her exercise regime. Steady as she goes.

There was a big meeting on Thursday, which I can’t really write about on here. But if the promises made are fulfilled, they could make a big difference to the future of my children and my ability to cope too. Everything crossed! But I was so exhausted after all the appointments that I didn’t have the energy to feel cheerful, at least not until Saturday evening. Then the conversion happened, and suddenly I’m seeing last week in a completely different light 💙

R2BC at Mummy from the Heart 

Lovin’ where I live #R2BC

I know I often talk about moving house, but on a mild spring day like today, I don’t want to move too far.

And I was planning all sorts of faraway trips over the weekend, but after the stress and angst of internet outage (fixed by an engineer remotely this morning) and the panic when my van broke (fixed by me at lunchtime*) I felt too tired to do more than take B for a short walk around the local area. It ended up as a long walk, and I decided to take some photos to show you why I still love where I live.

We began the afternoon’s adventures by sharing coffee and cheesecake at the Lovely Food Cafe. Well, she shared the cheesecake, I didn’t actually share the coffee!

Then we wandered down towards the Park, with B getting giddy from the sugar, and we admired the local cherry blossom tree.

We strolled past the National Botanic Gardens and enjoyed looking at the tulips, and a very pretty magnolia tree.

We passed by one of the local traditional pubs…

Hedigan's Pub

… And then we headed for home via the path along the Royal Canal: There were boys jumping into the deep water between the locks, as they have done for decades, and an old woman feeding the birds, but I didn’t think it right to photograph them…

It was a lovely afternoon that we both enjoyed, and a great reason to be cheerful for this week.

R2BC at Mummy from the Heart

*I will get it checked by a professional after the weekend, just to be sure.

Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.

 

 

 

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.

 

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.

 

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