My Sunday Photos

 

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So we celebrated National Cake Day this afternoon. We were only 24 hours late.

The plan was to visit Drumcondra Christmas Market and stuff ourselves with the gorgeous pumpkin pies we found on our last visit, but sadly that stall was not there this time. So on we went to our favourite summer pit stop: The Lovely Food Cafe. I wasn’t sure if B would remember it, but she certainly did!

And they were clearly ready for us, because there was plenty of cheesecake.

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B knows the routine. We sit outside because it’s too squashed indoors, and luckily the weather was mild and dry today. I go in and order, then sit down and B stares at the door with all her might to will the serving staff to bring her treat as fast as possible…

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Finally the waiting was over.

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The silence was golden.

Then far too soon, it was all over, but the sugar hit very quickly indeed.

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And continued all the way home.

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No wonder I can’t do enough for this lovely young woman whom I am proud to call my daughter ..

 

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Being honest on TV about special needs

How often are people really honest about their lives, their feelings, their motives in public? Certainly not most celebrities or politicians. So it was refreshing and emotional to watch Johanne Powell talking about life with her severely disabled adult daughter Siobhan, on Ireland’s The Late Late show following an article in The Irish Times, which I found quite upsetting to read.

Most opinions I see about carers are polarised: either we are saints or we are whingers, when actually we are all different. Some cope well with life as a carer, some cope because they feel they have no choice, and some want more, and there’s nothing wrong with that.

My 20 year old daughter would be be similar to Siobhan in many ways, and I identified with some of the things Johanne had to say, especially the drudgery involved in caring, from personal care, to hours spent hoisting, to repetitive form filling, to the battles for services, to the endless laundry and cleaning of disability equipment.

My daughter and I both need breaks from each other – she needs to spend time with her peers, and I need time to do things that would bore her, or that she cannot attend, and also to recuperate from the physical effort of looking after her – including lots of exercise to get stronger so I can keep caring.

The most emotionally difficult part of caring for B is when she is upset and cannot tell me what is wrong or where it hurts. Today was one of those days, a day when I brought her into town to get a new pair of boots for her, and cake to celebrate national cake day, and she sobbed all the way down Grafton Street and I didn’t know what was wrong or how to fix it. It was heartbreaking to hear.

However most of the stress associated with her disabilities is caused by the State, and the lack of services and the uncertainty about the future and what will happen to her when I die. Right now I don’t even know if she will have a day programme in 2017 or when respite might be offered, which will be needed if and when I get sick.

Right now, I still want to be her carer. I still believe my daughter and I could have a good life together, and a lot of the time we do. Perhaps in ten years I will feel more like Johanne, who can say?

Yet I have realised that sticking my head in the sand about the future is not fair on either of us. I’m just starting to think about independent living options for B and how that could be achieved: ideally by a “gradual, slow handover” from the family home to her own home.

But I know I would find it really hard to let her go. This is how she greeted me this morning.

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I would miss that so much, and her company during the rest of the day too. And like so many carers, I’ve lost a sense of who I am and I don’t know what I’d do with myself if I wasn’t caring.

You see the problem is that most people cannot be honest about their lives. At least not in public. We have to consider the feelings of others and how the truth will affect them and how they would react as well. That is unlikely to be a problem for Siobhan or my daughter as they would not understand. But I can’t tell the whole truth about my life in public, even anonymously, and I never have. I’m sure that goes for most people. Even though we may find some things hard, we always have to protect those we love.

At one difficult point in my life I reached out for help to someone who had been in a similar position and was told:

“Everyone has their problems.”

At the time it was very hurtful, but I came to realise it was true.

So the conversation about carers also needs to look beyond what a few people are willing and able to say in public, so that the life needs of all special needs families and people with disabilities are considered. Let’s hope it happens, and quickly.

Good things and dark days

I hope I didn’t get you worried there. The dark days are not Tolkienesque, there’s no crazy Dark Lord trying to take over the world (well perhaps there is actually, but right now I’m watching and waiting like the White Council as other things are taking up all my time and energy). No, I’m referring to the fact that it’s November, just one month to Christmas, and already it is very very DARK. Well except when the sun puts out the occasional brief appearance, just to remind us that’s she’s there. So onto the good things…

Another radio station

I’m still in mourning for Phantom and TXFM and have left the preset in the car playing static, but in the meantime I’m listening to the internet station 8radio.com and it’s now on FM for a few weekends and best of all they played a song for me: Mrs Robinson – the version by The Lemonheads obviously.

An award and a night out

Okay so I did have to scrub some food off my dress, but apart from that the CDYSB awards went pretty smoothly, with no falls or stutters, a few shiny faced photos, and one or two nice ones that I will treasure, and most of all I will remember the lovely things my friends and fellow volunteer parents said. Because I’m just one of many, many people who kept the Rainbow Junior Arch Club going down the years.

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Shades of the old me, BC and all that!

An Instagram Science Challenge

Last week was science week and in an effort to distract my overactive mind and learn something new, I joined this challenge to find science related photos, and I even made some graphics too. Plus my son helped with some of the captions. You can find the results on my Instagram account here: https://www.instagram.com/often_called_cathy/

The challenge was the brainchild of Dr Naomi Lavelle who writes the Science Wows blog, a fantastic resource to encourage children to take an interest in science.

Fantastic Beasts and where to find them

Sorry, but I wasn’t thrilled by this film, I enjoyed it, but I won’t be counting the days until the next one in the series. But I was very cheerful about an evening out with my eldest and youngest. It used to be almost impossible, but now it sometimes works out. 😀

November Rose

Inspired by Lakes Single Mum – one of the reasons to be cheerful hosts – I snapped this blooming rose during the week, and looking at it certainly makes me feel better about the darker days ahead.

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So that’s it for now. Why not head over to Mummy From the Heart for more cheery posts, and hope you have a good week x

Finding Allies in the Special Needs Battle

As a special needs parent you become an army commander fighting battles on many fronts at the same time. But you usually have to do this with no troops, no weapons, and little understanding of opposition tactics. Because the State and the organisations  that are supposed to provide services often seem to be the enemy, withholding information, refusing to engage, and denying the help that you believe is needed. So you may be ignored, patronised, discussed behind your back, punished and accused. And your children may suffer as a result.

About ten percent cent of the population have some kind of disability or special need so you would think that such a large army of people would have clout, that politicians  would care about the issues involved and would listen. Far too often they don’t.

But sometimes you do find allies.

And you know all those people who knock social media? Well they mostly don’t appreciate the opportunities it offers. Like the chance to help your family and explain the issues that affect your children. I got such a chance on Thursday, when myself and my disabled daughter went to meet Senator John Dolan in Leinster House (the location of the parliament here in Ireland). Senator Dolan is also the CEO of the Disability Federation of Ireland.

The meeting was about Changing Places, why children and adults like my daughter need them for toileting and/or changing, how providing them would fit in with current disability policy and also provide business benefits, as well as ways to encourage organisations to install them.

The Senator was very receptive, listened carefully and was lovely to my daughter (who wasn’t particularly impressed with being at a boring meeting!).

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Where’s the chocolate cake and the music, Mum?

I also raised some of my concerns about how current policy seems to be ignoring the needs of those with severe and profound disabilities. And he listened once again. So I may have found another ally in my fight to make sure that my daughter – and others – have the best life possible.

And I can’t think of a better reason to be cheerful for this week.

 

What job would you suggest for my daughter?

** an update of an old post from a previous blog **

Don’t get me wrong. I would love to see emails pinging into her inbox offering her employment. I would love to see her heading off in the morning in her wheelchair to a paying job where she is appreciated for the talents that she has. Because she does have talents: she can radiate happiness and calm to others, soothing those struggling with distress or depression and she can pick a pop hit from the first viewing of a video, but somehow I don’t see her being hired by a record label.

You see she is is severely disabled.

And not the kind of severe disability that means you can still attend a third level institution .

No, my gorgeous daughter is non-verbal, and cannot use an iPad or any other form of assisted communication – but she knows how to express her feelings, and I’m very glad about that. But I’m not sure that smiling and frowning would be considered a sufficiently useful contribution in the average workplace

She is partially toilet trained, but needs a Changing Place with a hoist and bed to use a toilet outside of the home. How many offices have one of those?

Despite years of physical therapy, she cannot walk and her arm function is so poor that even getting a spoon to her mouth is almost impossible for her.

Because of her multiple disabilities it is difficult to assess her functioning age: but reports suggest that physically she is under 12 months, and intellectually about 24 months.

But perhaps she doesn’t really exist, or is not an actual person at all?

Because according to a report in The Irish Examiner yesterday: “Having a job is essential in order for those with intellectual disabilities to participate in mainstream society and take an active part in the community.”

The report also said that “3,200 disability allowance recipients” were surveyed about their attitudes to work. No-one surveyed my daughter. In fact since all respondents ‘said’ their answers, presumably no-one unable to communicate was included in the survey.

Once again the small number of adults like my daughter are being excluded and ‘othered’ by the conversations about disability.

I feel angry and insulted and it’s happening more and more.

I learned that at least one Minister in the previous Government believed that every young person with a disability is employable. Are we heading towards the workfare scenario in the UK that has led to the deaths of thousands after their benefits were withdrawn? Where my daughter would be called into an interview about work and perhaps her benefits would be cut when she didn’t answer the questions? Does the State and the Disability Organisations really believe that they can develop training courses for young people like my daughter, that will achieve what 15 years of intensive schooling has failed to do?  Equip her with the skills to go out and get a job?

And here is B with some of her favourite toys, and the equipment she needs to get through each day. And once again I’m asking everyone out there: What job you would suggest for my daughter?

 

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Ordinary lives in ordinary places: A birthday treat

Ordinary lives in ordinary places is the buzz phrase in the disability community. I assume it means that people like my 20 year old severely disabled daughter should be able to enjoy the same kind of life as everyone else. Realistically, that will never be entirely possible, but I’m doing my best. It means being brave, doing lots of research, asking for special treatment (something I hate doing) and being ready to leave an event if necessary (another thing I hate doing).

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But then one of those fortuitous coincidences happened. My dancing friend Jazzyville has finally recovered from a serious back injury and was to appear in a show near me, in a venue I knew to be disability friendly. The show promised non-stop music, dancing, action and lights, just the sort of thing my daughter B enjoys. My friend Margaret’s son also loves musical theatre and since both him and B have birthdays at Halloween, it seemed like a perfect birthday treat for the two of them.

And what a night it was!

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You might spot Jazzyville in this one 🙂

But will my daughter always enjoy opportunities like this? Under new disability legislation she will be entitled to make her own choices, and my experience is that she will always choose the safe and familiar.

 

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The “Why am I here?” photo before the show began.

 

I would be worried that even with a video of the dress rehearsal, she would still pick a trip to Insomnia and the promise of cake over a night out like this one, that saw her entranced by the spectacle on stage.

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She was mostly happier than this, but head dancing so much I couldn’t get a photo!

I hope I’m wrong. I hope she will always get to experience new things and enjoy them too.

A huge surprise

R2BC at Mummy from the Heart

I’m not often stuck for words, but when the Rainbow Junior Arch Club co-ordinator read this out at last week’s session, I didn’t know what to say. I still don’t.

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Ordinary people don’t expect to get prizes and awards after they’ve left childhood behind. I was lucky enough to get close to an award a few times with my old blog, and since I put so much effort into that blog, the recognition would have been nice, and would’ve made sense.

Volunteering at the club is just something I do, and have done for ten years or so. I do it in the same way as I clean my teeth in the morning. It’s part of my routine. I do it for my disabled daughter B, and for all the other special needs children who attend. Any time I think about quitting, I just have to see their happy faces and I can’t!

Anyway it was a huge surprise and much appreciated, and the best bit is that I get to bring 3 other committee members from the club to a celebratory dinner and dress up for the night. Though I’m assuming I’d better look respectable…

So that’s my main reason to be cheerful for this week, but I have a few more too:

Ringing up the local council, getting through quickly to a real person, who volunteered her name and promised to ring back, which she did. You’d nearly forget what friendly, efficient and human customer service is like. Lovely when you get to experience it.

Thinking the toaster was broken. Then discovering that it just needed a good clean. Oops.

A couple of good days when everyone in the family seemed to be happy.

Christmas shopping nearly done thanks to my laptop and some great suggestions from other bloggers.

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Watching great music for free in the street on a cold but sunny Sunday afternoon. Though I did help B to drop some money in the bucket.

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Finding an uneaten bar of chocolate when I cleaned behind my desk this morning. It’s not totally uneaten now though…

Linking up with Mummy from the Heart once again.

Twenty Years Young

My very special daughter celebrated her twentieth birthday last weekend. She’s still very young at heart and in every other way, thoroughly enjoying the Zumba party in aid of Temple Street Children’s Hospital that was the main event on the big day itself.

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Obviously the celebrations didn’t end there. On Sunday we went to Malahide, a coastal village in North County Dublin for a potter around, and also because there was a ground floor flat with glorious sea views on sale (I’m thinking of our future here!). She loved the busyness of the place, and the way that so many people said hello. A very good sign, I think. As for me, I was a bit intimidated by all the smart thin women and the very posh supermarket on the high street…

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Monday was Halloween. Trick or Treating was great fun with my eldest, but never worked too well for the younger two, so I usually turn out the lights at the front of the house until its all over. Then this year I heard about a Halloween Parade in town, on B’s favourite street too! Of course I was anxious. Would we get there in time? How long would we have to wait? Would people stand in front of her? Would she like it? Would she get scared?

Well we did have to wait, and she coped a lot better than I did, but it was worth it. She loved it and there were no barriers, so when the dancers spotted her, some of them came over to her specially and of course she adored the attention!

And the birthday celebrations are still not over, as I’m bringing her to a musical on Saturday week, a proper grown up event for a proper grown up young woman.

Note: I’m linking this up with Reasons to be Cheerful and a huge thank you to Michelle at Mummy From the Heart, not only for hosting, but also for encouraging me to take part. I’ve been having a little pity party for the past few weeks, I’ve reached out for help a few times, and this morning, I finally got the support I needed thanks to a Facebook Group.