It’s a hard knock life!

Those were the lines delivered by my profoundly disabled daughter B on stage in a Dublin theatre on Friday via her big Mack communication device. It was a proud Mammy moment made possible by the inclusive drama group at her adult programme. It was also a great show with music and dancing and some natural performers who were born to be on stage and everyone got a standing ovation at the end. A wonderful night and thank you to the organisers.

And that’s the first of my reasons to be cheerful from the past fortnight. Others include:

…Waking up in the mornings without my hip collapsing in pain and soreness. Not every morning, but most of them. Hopefully that injury is finally on the mend.

…A random act of kindness from a neighbour who stopped to help me when he saw me struggling to put the hub caps back on my wheels.

…I completed my 50th parkrun on my own thanks to my eldest daughter minding her siblings and I missed my parkrun personal best time by just 1 second, but I was happy to dip under 28 minutes. My PB was set in 2017 when I was younger and a lot less stressed, so perhaps I can actually beat it one day.

50th Parkrun Fairview

… Great fun was had at a 13th birthday party that B and I went to, involving a bouncy castle and an inflatable guitar!

…More guitars at a festival celebrating buskers on the same weekend. Lots of rain did not stop B and I having a wonderful day out.

…Inspired by a post from the current host of this linky, Lakes Single Mum, I made Beetroot Soup, and both B and I decided it was delicious.

…B managed a whole day in adult cloth nappies. We’re getting there!

Have a great week xx

R2BC at Mummy from the Heart

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The myth of free time when you’re a carer

It’s no surprise that family carers are undervalued. That people think we don’t deserve a decent carer’s allowance or one that’s not means tested. That our children don’t deserve respite.

Because don’t we get a great break every day when they are at school? (Or adult services)

Well no actually, we don’t. But I would be a millionaire if I had a euro for every time that has been said to me. And I know it’s meant kindly, but it makes carers feel even more isolated and misunderstood.

Here are some of the things that carers do while their children are in school:

Sleep
Because many disabled children and adult sleep very little or need a lot of attention during the night.

Self Care
Exercise – because carers need to be fit for their very demanding job.

Attend personal medical appointments (anecdotally carers tend to have more chronic illnesses, mental health issues and physical problems like bad backs due to their caring role).

Disability Administration and Meetings
Medical and therapy appointments with your loved ones.

Chasing up appointments and services that have not happened, and services that have been delayed.

Form filling. More form filling.

Ordering and collecting medical supplies.

Meetings with service providers

Preparing for meetings, writing minutes of meetings, sending them out and following up on all action points.

Social
Spend time with other family members (in my case my youngest).

See friends and others in the disability community for emotional support and information.

Organise or help organise social activities for their disabled loved ones who might otherwise have no friends or places to go to on evenings and weekends.

Housework and Maintenance
Yes carers have to do that too, and it may involve cleaning up more mess than the typical household as well as more laundry.

Disabled children who regularly get distressed may damage the house or break household furniture or equipment so repairs and replacements need to organised.

Cooking: Many disabled children and adults have specific dietary requirements or will only eat certain foods, so different meals for different family members may need to be prepared several times a day.

Research
To rights, entitlements , therapies, information, equipment.

Researching  a hard to get game or toy that your child must have and you know they won’t understand or accept your failure to produce it.

That’s all I managed to think of over breakfast. What would you add?

Note: I know I’ve written about this before, but this idea that I sit at home all day doing very little is extraordinarily hurtful.

The things they don’t tell you about disability: Osteoporosis

Once upon a time, my beautiful disabled daughter could stand straight and small in a tiny stander that looked suspiciously like torture equipment, but didn’t bother her at all.

Smiley 8 Stander standing

As the years went by, Bs legs began to stiffen and bend, and despite daily stretching for more than 20 years, they will no longer straighten.

But when she stopped using the stander, she enjoyed using a walker until she outgrew that too and no suitable replacement could be found: disability equipment is mostly made in standard sizes and designs, and my daughter is not ‘standard’ in any way!

I was disappointed as I always believed that sitting in a chair all day is not good for anyone, including people with physical disabilities, so she got daily floor time, and swimming as often as it could be organised.

However I’d forgotten one thing: the importance of weight bearing (though seriously, why is knowing everything my responsibility???) and when a DEXA scan to measure her bone density was ordered, I thought nothing of it.

It turns out that medication for seizures combined with inactivity put her at high risk for… osteoporosis. I thought it was an old person’s disease, but my darling daughter has been diagnosed with the condition, aged just 22.

So now she needs to take calcium and vitamin D and I have another urgent task: to get another stander and walker for her as soon as possible.

 

Reasons to be cheerful: Getting Organised

Life is still giving me a good kicking, and that’s making me more determined than ever to find – and engineer – some reasons to be cheerful.

September always feels more like the start of a New Year than January, with the end of the summer, and the beginning of a new school year, while job changes, car purchases and moves for me have always happened in the autumn, so there is a flurry to bills to pay and things to organise.

So ‘organised’ is how I plan to be this month. Over the summer, I’d been randomly tackling various jobs but on Thursday I decided to put together a full list, something I used to prepare regularly, but the last one I could find was dated March 2018. And I was pleasantly surprised to discover that despite the chaos and trauma of the past 18 months, I was actually able to cross off most of the items.

My garden has looked very sad for a long time, so on a visit to the local hardware shop I grabbed the first six pack of plants I saw, and shoved them in the weedy containers in the backyard, and it does look a bit better as a result.

Screenshot 2019-09-08 at 16.24.50

Earlier in the summer I made plans to ensure my old van would pass its roadworthiness test (called the NCT in Ireland), including surprising my local garage by booking a service and pre test check two months in advance! But I still did a double take when the technician gave me the certificate and told me she’d passed… Such a relief.

I’m also getting organised ahead of the prospect of empty shelves post-Brexit in November thanks to some ‘junk’ mail consisting of vouchers for my local Lidl store that gave me €10 back for every €50 spent, and I rarely spend that amount in Lidl so it was actually a challenge! But it’s enabled me to stock up on essentials: extra important when you care for two disabled adults with very specific needs.

Then on Saturday I got the opportunity to dust down my rusty professional skills when I attended the AGM of a national disability organisation. I always enjoy the chance to do something that feels like ‘work’, and yesterday I was able to bring my disabled daughter with me to the event, so there were no guilty feelings either.

Screenshot 2019-09-08 at 11.45.34

Finally I discovered why my smartwatch did not appear to be logging all my ‘steps’, I’d blamed its low price, but it turns out that steps are not counted when you are pushing something, so as I walked to and from the AGM pushing my daughter in her wheelchair, it seems I clocked up 15,000 odd steps yesterday, and not the 9000 that my watch recorded. Am feeling particularly virtuous now 😀.

Head on over to Lakes Single Mum for more reasons to be cheerful and have a great week xx

R2BC at Mummy from the Heart