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.

 

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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!

Reasons to be cheerful about friends

How do you define a holiday?

For me it’s become any extended break away from my various roles and responsibilities. A chance to snatch at the memories of the person I once was.

So you might say I’ve been enjoying a week’s holiday, with visits from family and friends, and my day out running the 10k Womens Mini Marathon sandwiched in-between.

I had a wonderful time with my friends, as did my young adults. Far too much fabulous food was eaten. We went to the beach, despite some gloomy weather, and wine and conversation flowed in the evenings as we talked and talked about the world outside disability.

Then there was the Mini Marathon. After months of injuries, I only had 6 weeks to train for it, and I was determined to finish in under 60 minutes, if it killed me. And with roastingly hot temperatures during the run, it nearly did. But I was absolutely over the moon when I crossed the finish line.

It wasn’t all good, because as soon as started to feel relaxed a pesky little virus spotted an opportunity and BAM! it flooded me with germs, but I managed to remain cheerful thanks to the wonders of modern medication…

Then on Friday it was back to full on caring duties of the emotionally challenging kind and I didn’t do too well! But I’m hoping to enjoy a relaxing weekend as I will be entertaining my disabled daughter by bringing her to a couple of local events within walking distance, making everything easier and less stressful.

Hope you had good week xx

R2BC at Mummy from the Heart 

Reasons to be cheerful about Family

Do you love social media? I do. But I don’t need it, and I’m more than happy to put my phone down when I have real life company. And sometimes I do, like this weekend’s visit from my brother and sister in law who live overseas.

(And thank you to the friends who contacted me to check I was okay when I vanished from Facebook: that’s what online support and friendship is all about).

Don’t get me wrong, I love chatting with my friends, the access to information and support, the connections I’ve made and the opportunity to learn new skills and to use my brain.

But this weekend was all about the conversations over coffee, and spending lots of time out and about making memories with my three young adults.

So on Friday we went to Bloom, Ireland’s giant Flower and Food Festival. We visited the Irish Wheelchair Showgarden and my disabled daughter B got VIP access to the exhibit itself.

This year we didn’t even have time to see everything, and only managed to test about half the free food samples on offer.

But apart from one shower, the weather stayed fine and it was a lovely afternoon.

On Saturday we had a big fry up cooked by my brother before eldest headed off to work, then he and my SIL took youngest out to lunch and then we went into town for a potter around before a roast dinner cooked cooked by yours truly. A lot of food got eaten, so maybe it’s just as well that I will get the opportunity to run it all off during today’s 10K Dublin women’s mini marathon, now that they’ve headed for home.

Hope you had a good week too xx

R2BC at Mummy from the Heart