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 💙

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Lovely Laois

Have a great week xx

R2BC at Mummy from the Heart 

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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.

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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.

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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 

 

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

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 

Mad as Hell

Did that title catch your attention??

Good.

I’m just popping in to say that I’m making the blog public again, but I haven’t got anything inspiring to say right now and I don’t feel like trying to be cheerful just for the sake of it. Even though it would probably be good for me.

I do have a counsellor now, a fact I have probably mentioned already but as I’m already late getting the bedtime routine started for my disabled daughter B, I can’t be bothered to go back and check.

There is good news: I slept reasonably well for 3 nights in a row last week. As a result, I felt able to make some decisions and get some things done. Some fairly big changes are taking place, but not the ones I really really want. And yes B and I did pop down to mingle with the crowds attending the Spice Girls concert, but she did not appear to be very impressed!

I even mused out loud (ie on twitter) about going back to work. Mainly because I was live tweeting an autism conference and getting a lot of attention as a result.

I might test the water on that one. We’ll see.

Oh and I reduced my footwear collection to this:

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(Too much of anything feels like a burden, and shoes have never been a passion of mine).

So somehow a post that was meant to explain why I’m not feeling great has turned into something vaguely cheerful. Is that the power of blogging? Perhaps I should add it to the reasons to be cheerful linky after all…

R2BC at Mummy from the Heart 

A new toy and other reasons to be cheerful

It began with a torn page from a Sunday paper. Life was looking up in the summer of 2017, and I was determined to be brave and try new things. Also I needed a way to check how fast I was running, so when I read about this Kickstarter project for a budget smartwatch, I took a chance and backed it. As you know, it paid off, and I got my smartwatch in time for Christmas. It did everything I wanted and more, and quickly became an essential pice of kit. No more missed calls or messages, which can be so frustrating when you’re trying to organise something important for your children. So I was not happy when the watch broke for good last week. But I was happy when I found a bargain replacement that looks a bit like an Apple Watch and costs just £70. It also has great reviews, the battery is supposed to last for 45 days, and it appears to do almost everything on my wish list. So far I’m delighted …

In related news the wireless earphones that were free with my first smartwatch are still working, even though the watch is not.

Reasons to be cheerful 13.4.19

And I’ve a few other reasons to be cheerful too:

Friday was the last day I knew for sure I would have an empty house. So I made the most of it by tackling a head wrecking house maintenance issue. But during the breaks between stages I sat down and read a book instead of rushing around doing other chores.

With worries about the future mounting again, I also took a break earlier in the week to go for a short walk along Dublin’s seafront to clear my head.

A lovely message from a reader with a severely disabled child who found my blog  and said it gave her comfort for the future.

Oldest and youngest chose takeaways for dinner last Monday giving me time to bring B to the Rainbow 13+ Social Club in the evening, which she loved.

Our wonderful home hairdresser made us look presentable again.

When the health service gives you a week to respond to a letter or you will be struck off the waiting list and your busy but kind-hearted GP rings to make sure you’re not away and are able to respond.

After a long break, it looks like I will get two trips out to the cinema over the next couple of months with eldest and then a friend.

Finally yesterday was a wonderful day of inclusion for my disabled daughter, beginning with the park run at Tymon and ending with a 50th birthday party. I can tell you she went straight to sleep last night!

R2BC at Mummy from the Heart 

If all else fails, go shopping

I’m not promoting pointless consumption of stuff here, honestly. It’s my disabled daughter you see, she’s getting more demanding. She’s no longer content with quiet evenings involving videos and chatting to me as I potter between the sink and the cooker and the bins and the washing and well, you get the picture.

But there is one activity that always keeps her happy, and that’s shopping. She will brighten up as soon as I start to put her coat on, then laugh in happy anticipation as I push her and her wheelchair out of the house, through the two gates and into the van.

Once we get going, she is in charge of the music, and will head dance enthusiastically to her favourite songs — or give out loudly if a tune she dislikes is played.

The excitement builds up even more when she recognises the store or shopping centre, and if it’s big, bright and busy, well that’s even better..

(And as many of you have realised, she is very good at letting everyone within earshot know exactly how she feels!)

However daily shopping trips in the early evening rush hour traffic are not exactly an efficient use of time, and can be tiring and annoying, but I have realised there are benefits for the whole family.

I have fond memories of the days when I could do one big shop for the week. When I was in charge of the menu, the food and what everyone ate. But now my three young adults eat different things at different times, and forget to tell me when stocks of their favourite foods are running low. So I need to buy food and other essentials on most days anyway: if B and I shop in the evening, I have more time during the day to get other things done that she cannot help with, or would not enjoy. It’s almost a win/win. So I think four nights of shopping this week counts as a reason to be cheerful, don’t you?

Head over to Mummy from the Heart for more..

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R2BC at Mummy from the Heart 

Looking for Silver Linings

I’m afraid it’s been another of those weeks, and my heart goes out to several friends who have suffered loss and bereavement, but I’m determined to find some cheerful silver linings and turn some of the bad news into good…

The bad news is I don’t have the time – or interest – to do the garden any more and so it looks like this ↗️.

The good news is it means I’m helping to save the bees apparently.

The bad news is I will have to miss my beloved Tuesday Zumba class for the next few weeks.

The good news is it’s because I’ve finally got some counselling appointments. And I hope to get my Zumba fix from another class or event.

The bad news is my ribs still hurt a bit.

The good news is I have a great excuse not to bother with the vacuuming. I have to ‘rest’ and not do activities that hurt me.

The bad news is the beautiful disabled friendly bungalows B and I saw this week are on sale in the wrong place, at the wrong time. Probably.

You see I’m coming under pressure to defer any house move for now. It is difficult to turn down the chance to live somewhere that B seemed to love (see photo above), with everything we need for the future – apart from a ceiling hoist – already in place. Admittedly I am not convinced by the location – it’s a 20 minute drive from anywhere we might want to go, and public transport is almost non existent.

The good news is we enjoyed a lovely relaxing afternoon in the country including a pit stop at the local cafe where we felt very welcome.

The bad news is I’ve been super busy this week, and am feeling completely overwhelmed again

The good news is that between all the appointments and usual madness I am managing separate outings with each of my young adults. Even if they are for activities like house hunting that may come to nothing!

Let’s hope that next week is better, and head over to Lakes Single Mum for more reasons to be cheerful.

R2BC at Mummy from the Heart 

Two toilets in One week! #R2BC

It’s been another busy fortnight with 16 appointments of various kinds, plus fun activities at the weekend, including lunch out with friends, which B now really enjoys. One of those involved our first time to visit a commercial Changing Places toilet and I was delighted with how easy it was to use.

B got a new lightweight GaryB Wheelchair Blanket for Spring (just seen in photo) as her legs get so cold so easily now that she needs more than a pair of leggings covering them when she goes out.

I’m injured, which means enforced rest and filling the time with other things to ensure my two youngest do more than just look at screens. Starting by volunteering at parkrun tomorrow, instead of running..

Today though was a very special day as B and I headed out to North County Dublin to the official opening of the new premises of the hugely successful Remember Us Club that provides a social outlet for some 200 disabled children and adults, as well as their siblings and families. In a stunning achievement, they have raised enough funds to buy and kit out a permanent home for the club and all its activities and events. And it also has a proper Changing Places toilet, so we had to check it out!

We also got to meet a number of families who used to attend the Rainbow Junior Arch Club that B and I have been spending our Saturdays afternoons at for the past 18 years… It was lovely to catch up, and thanks to R for all your help and support and bringing over some badly needed coffee…

So that’s it for this week, more reasons to be cheerful over at Lakes Single Mum. Have a great week xx

Remember Us opening collage

R2BC at Mummy from the Heart