Freedom

While I’m not some kind of anti state neo liberal nutter who dreams of living in a cabin in the woods with a shotgun, solar panels and a stockade, freedom has always been important to me. As a teenager, I vowed that no one would tell me what to do once I turned 18 (unless they were an employer). That didn’t work out so well, as some of you will know. Then I became a carer. And like many carers, it often feels as though my life is completely controlled by others: from the needs of those I care for, to the demands and policies of a state that (sometimes) provides services and supports.

But if I look hard enough, I can still find little nuggets of freedom buried away in hidden corners of my life.

Clear skies and busy streets

I’m back to full time intensive caring, but in a change from the usual pattern, it involves getting out of the house, rather than staying in it. I much prefer this, as you can imagine! So no cabin fever, lots of fresh air and exercise, the opportunity to put things into perspective when you see the troubles of others and freedom to wander and explore familiar and different corners of Dublin.

Poolbeg Chimneys, The Pigeon House, Freedom

Happy Hour

Thanks to needing less sleep than anyone else in the house, that hour between 5.30 and 6.30 am is all mine. Unless my disabled daughter decides on an early start too! Otherwise, I have an hour to catch up, clean up, caffeinate and shower and I’m then reasonably ready to face the day ahead. That hour of freedom is very important to me.

Coming and going

For years trips out in the car with my disabled daughter have had to be planned carefully to make sure there would be parking outside the house when we returned. The opening and closing times of the school just up the road have to be avoided as well as match days at the nearby sports stadium.

But now I finally have a disabled parking space painted on the road outside my house: I applied last November, but it took a team effort led by Ciarán Delaney and Senator John Dolan to make it actually happen. Now it finally has and I am very grateful to everyone who helped. It’s a public disability space on a public road, but it will make it much more likely that our parking issues will mostly be in the past, giving us a bit more freedom to come and go as we please.

Netflix in peace

Currently my evenings are spent watching TV with one of my young adult children,   so I have a lengthening Netflix list of must watch programmes… Luckily the iPad stand and some budget wireless headphones have come to the rescue and if you dropped by my house in the early evening you’ll find me preparing dinner with one eye on a pot on the stove and the other on a favourite show. While my children watch theirs. A bit of freedom for all of us, I guess.

Running fast

I know that running is not for everyone. I know it’s hard and tiring and slow and heavy and even miserable when you start, or start back. But if you can stick with it, running turns into something else entirely. You can hit a sweet spot where you can jog along effortlessly as you chat to friends, or run a bit faster when you want a challenge. And then you see a perfect stretch of path: long, straight, smooth with a slight downward incline. And your legs just want to go. So you do. And you run faster and faster and you feel like you could accelerate indefinitely.

You know what that feels like?

It feels like freedom.

And in a world where we all seem to have less and less control, that’s a very heady feeling 😍😍

So for me every golden nugget of freedom is precious. Search them out and treasure them as I do, it really helps.

Sharing with reasons to be cheerful, hosted this week by Mummy From The Heart.

R2BC at Mummy from the Heart 

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The meaning of minutes

I’m sure I read somewhere that the most powerful person at a meeting is the one who writes the minutes. Especially if the minutes are the only record of what was said and agreed.

That theory crossed my mind this week when I received a set of bland minutes from a meeting I attended on Monday night. They cover the facts given and the actions proposed, but say nothing about the words that were spoken. Are all minutes like this? It’s sad really, because the passion and inspiration from many of the speakers is completely absent: the minutes do not tell the full story.

I’m sure you won’t be surprised when I tell you that it was a disability rights meeting. Maybe a little surprised it involved an evening trip across the River Liffey. And perhaps amazed that instead of trying to find a sitter, I brought my two younger children with me. Including my disabled daughter B, even though I guessed that some might consider her vocal contributions disruptive. She should be heard and she should be seen, and I won’t let anything get in the way of reminding people that her needs are important too. Even when those needs may be a little different to those of the general disability population.

It was a small meeting: despite all the publicity, only about 30 people were present – out of the 300,000 or so who are affected by disability in Ireland. It just shows how tired and unsupported most disabled people and their carers feel.

But I really enjoyed it, because there was lots to inspire and digest:

A factual mini presentation about disability housing issues from David Girvan, and an impassioned plea for real change from Aisling McNiffe were among the parent and activist contributions that were preceded by some powerful words from the main speakers of the evening.

First up was Dr Tom Clonan, author, security analyst and busy advocate for his disabled son Eoghan. Here is just some of what he said:

The number of organisations agencies etc is mind numbing and little or no accountability. The situation is getting worse and worse. Disabled people becoming homeless is a policy. Levels of suffering completely unnecessary.

Meanwhile the Government has 44 media advisors. Choosing to ignore us. Because they can.

We need to make this a general election issue, and reach out to the able community.

We can make change against resistance: I know how to fight, and I will spend the next 25 years fighting.

👏👏👏👏

Graham Merrigan is a wheelchair user who lives an independent life and described his issues as mostly in relation to infrastructure, taxis, misuse of parking bays etc.

Local PBP Councillor Annette Mooney raised the issue of the still unratified UN Convention on the Rights of People with Disabilities (UNCRPD), and told the meeting her belief as to why it has not happened here, when almost every other country in the world has ratified:

They won’t ratify it because you’d be entitled to things. The main reason for not ratifying is money.

Why am I not surprised by this opinion?

Finally the gathering heard from Senator John Dolan, who is also CEO of the Disability Federation of Ireland.

On the Budget and ratification of the UNCRPD:

State signs the international treaty, and it’s like getting engaged. Ratification is the day of getting married. Ratifying means your starting a progress of implementation. It doesn’t have to be right straight away.

On community living for disabled people:

Some HSE staff are getting people out of institutions , others are putting them back in. You can protect an institution, it can be seen, while cutting a home help is unseen. We’re fighting to get people living in the community but as it stands the community is a very vulnerable place to be.

👏👏👏👏

If you only read the minutes, you’d think that attending this meeting was just a boring duty. It wasn’t. It was a pleasure and it was worth it, and I came away feeling less alone, and more understood. The minutes had no meaning for me. The quotes I’ve shared here give just a taste of what the meeting was really all about.

Note: I typed copious notes throughout the meeting and I hope I have reflected its spirit here. I should also mention that People Before Profit TD Richard Boyd Barrett was the MC for the evening.

 

When September Ends

Sadly the September I had hoped for has come to a skittering halt, but at least help has kicked in, and there is still hope, and still reasons to be cheerful. Like these:

Perfect Skin

Well obviously not perfect. At all. But after being told I really needed to get a mole removed – though no expectations of anything nasty – it was a lovely bonus when my skin was praised by someone who really should know what they’re talking about!

Happy Birthday

My beautiful eldest daughter turns 25. Impossible to believe that the little 5lb bundle placed in my arms so long ago is now a strong, confident, clever, energetic and caring young woman who is determined to make the world a better place. Love her so much ❤.

Walk This Way

I predict a lot of walking in the near future, and that gives me the chance to revisit and photograph favourite parts of the city like these.

Fairy Tree, Blessington Basin.png

And maybe even explore the nearly countryside…

Last Weekend

Was filled with running, music, cake and a very happy daughter who enjoyed it all. It’s impossible to feel down for too long when you share your life with someone who takes so much joy in hers.

B at Smithfield

Head over to Mummy from the Heart for more reasons to be cheerful and have a wonderful week x

R2BC at Mummy from the Heart 

Jenga

I was afraid it wouldn’t last, and now it looks as though I was right. That carefully constructed tower of support, structure and progress is getting shakier this week as some of the building blocks crumble away. I’m so afraid it will crash down. Each time the tower starts to fall, it’s harder. Each time my resilience cracks further. Each time I wonder how I will make it through the emotional debris. How I will scaffold the remaining blocks so we can make it through another winter with enough shelter from the storms that life throws at us.

Like a Jenga tower, our lives are already full of holes. Plugged as best I can, with the help of family, friends and services. Like most people, we muddle through, coasting one minute and firefighting the next.

One service came through for me today. I asked for help, and the call was returned. A plan was developed and I was kept busy. But best of all, there was an unexpected follow up call to check that all is okay. There are good people out there, and even when it feel like life is hurling Jenga blocks from all sides, there is always hope that the tower will not fall down completely.

 

 

Dull and domestic details can be cheerful too

Disclosure: I was not in any way paid or asked to include the products on this page, and the photos are my own.

I nearly cried this week when I accidentally knocked a treasured family photo off the wall and smashed the glass, while hoovering. But I didn’t. And while it felt like the last straw for a few minutes, my eldest reminded me how easily it could be fixed. Unlike the problems facing so many other people.

Because so far September is going surprisingly well. A transition from constant fire fighting to dull domestic and disability duties feels odd, but once there’s no disasters, it’s definitely a reason to be cheerful. And yes I went a bit mad with the alliteration there, sometimes I can’t resist it…

The change in the weather will take a while to get used to. For now, I’m mostly frozen. Yesterday I got chilled after a sudden shower of rain, and with a bit of spare time, I swapped my usual 3 minute shower for a reasonably leisurely bath. It was like a reunion with a long lost friend. Wonderful.

Talking of wintry conditions, I’m enjoying seeing all the warmer clothes in the shops and planning what to buy my disabled daughter as her clothes never last long, due to chewing, sitting, spills and stains, and holes from yanking unwilling garments into place. I’m thinking the pink and blue scarf and hat would be be perfect on her.

Autumn clothes

This undomesticated goddess got another boost this week and I could actually kiss those lovely Lidl people sometimes! Mostly when they bring out products that actually work like this limescale remover.

Toilet, Lidl limescale remover

I’m tempted to buy a lifetime supply in case they discontinue it like the chlorine spray that turned grey grout brilliant white again. If you’re reading this, lovely Lidl person, please start stocking it again.

So that’s my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart 

The new crime of infantilisation

It’s 3am. Your daughter is kicking her legs and giggling. You drag your weary ass out of bed and try to work out what she wants as she can’t explain – so you change her nappy, you offer a drink and adjust the bedding.

But your daughter is not 6 months old. She’s 20. And that’s years, not months.

So perhaps her mum can be forgiven for not always treating her like other adults.

Because I am her mum, and I do get it wrong sometimes.

“You talk to her like she’s a baby!” said my son to me a few years ago. And I realised he was right. I certainly didn’t talk to my disabled daughter B as though she were a typical teenager. But in my defence, she wasn’t, and while I’ve tried to change in deference to her age, it made me a bit sad to stop doing something she seemed to enjoy. I was reminded of that conversation again last year when I saw a tweet accusing parents of infantilising their adult disabled children, because they were opposing the closure of the campus-based homes where the adults currently live and moving them into small houses in local towns. This is Government policy in Ireland.

On further investigation I soon discovered that infantilisation is a big issue in the disability community.

Key complaints include using baby talk, over explaining concepts, talking to a carer instead of the disabled person, not listening to their opinions and over protecting them.

This kind of behaviour must be very upsetting for those with physical and sensory disabilities, and mild to moderate intellectual disabilities. And I regularly read articles by well known journalists that annoy me with the way they portray disabled people. But are all these concerns relevant for those with severe to profound disabilities?

What I’m seeing is that there is a tendency to pretend that my daughter has more abilities than (I wish) she has, and that might lead to her needs not being met, facilities not being provided, and a nod of the head being taken as agreement, when its just her weak neck muscles.

And most bittersweet of all is that although my 20 year old daughter has matured in some ways, she retains several traits and reflexes that are normally only seen in infants and young children. I was going to list them here, but perhaps that would count as infantilisation too?

I find it hard to accept that my daughter is exactly the same as all the intelligent articulate disabled people who may claim to represent her in the media, in policy making, at meetings and protests. I listen to all the policies being put in place for disabled people, and all the rights being asked for, but they don’t seem very relevant to her needs.

Disabled people do not want to be defined by their disabilities, but rather by their abilities, and that is fine by me. They don’t want to be described as vulnerable, and that is fine by me. They point out that all humans have the same needs for food, shelter and love, and that is fine by me too, but my daughter requires so much more help than they do to get her needs met.

Disability is now the preferred term for everyone who has additional needs, but the general public seem to assume that it means that someone can lead a normal life once they have a suitable wheelchair, home, personal assistant, equipment and accessible places to go.

Ratification of the UN Convention on the rights of people with disabilities should help with all those things, but not rights to a day service, respite, life time planning or transition to independent living, and no-one has told me how my daughter’s life will improve. Yet I’d love to know!

Take independent living. It’s being suggested that disabled people who live with their parents should be counted in the homeless statistics, because as adults, they should be living in their own home. I get that, but looking at all the options and the current policy of placing disabled people in little houses in the community, I would not be able to sleep at night. I’d rather continue sleeping in the alcove in the kitchen just yards from my daughter, so I’m there when she needs me at 3am. Or if there was ever an emergency, I can get her out quickly. I will do that for her. Would anyone else?

My daughter is also being gently eased out of the day programme she loves into ‘the community’, under another policy of the Irish State. Go to any shopping centre during a weekday and it is full of disabled people ‘in the community’. I am going to try and make it work for her, but I fear her enjoyment of life will be reduced and the improvements I’ve seen in her social skills will be lost if she ends up spending time away from her friends and familiar surroundings.

Yes trying new things is important, and both I and others in her life ensure  it happens all the time. But it has to be at a pace she is comfortable with, not one ordered by the State and its stupid one size fits all policies.

If you can read this this and object, you are very lucky. My daughter cannot read nor would she understand its complexity. Previously I would have explained that by giving you her mental age, but apparently that is no longer acceptable either! Yes she is an adult, yes she has years of experience, and a scatter of different abilities, but she also has many of the needs of a very young child, and someone has to ensure those needs are met. I’m afraid that only a mother would be willing to do all that needs to be done.

If all this adds up to infantilisation of my daughter, I make no apology. But I hope for forgiveness and understanding. All I’m doing is trying to ensure that my daughter has the best life possible.

 

 

Reasons to be cheerful 7.9.17

Several health and domestic worries this week as life gets back to busy term time normality means that finding reasons to be cheerful continues to be very important.

Parkrun with wheels

We finally did it. I ‘ran’ the 5K Fairview Parkrun pushing B in her adult buggy, and a couple of the fast runners who’d already finished helped push the buggy round the final lap. B loved all the attention, especially when everyone clapped as we crossed the finish line.

Fairview Parkrun 2.9.17 5

We’re still alive

My freezer was making ominous noises once again, and eventually I managed to remove this giant ice block with embedded hot dog roll, but only after defrosting the beast. So the fridge got filled with frozen food including a bag of prawns that I’d bought for one of the children in a moment of weakness: the health and safety police have me terrified of not cooking shellfish properly. But my dislike of waste won and I made a prawn curry. Not only was it delicious, but no one got food poisoning!

ice block

Tiger isn’t closing after all

Discovering that the local Tiger store was not closing after all gave me a random boost this week – it’s where I’ve discovered lots of little things that B likes or that help her, and all at a bargain price.

Getting over the fear

Thanks to the encouragement from all my online friends I went to get my chest pains checked and enjoyed a part of the Irish Health Service that works magnificently: my GP referred me to the free chest X ray clinic – and the service is so efficient (and friendly) that I was home again in 45 minutes. Yesterday I got a text from the surgery to say that the test results are normal. The pain must be stress-related so.

A kind gift

Summer can be a bit of a social desert as most people are busy with families, children and holidays, so it was lovely to catch up with some friends yesterday, including the inspirational Carol Murphy Haslam who is still facing life with a smile despite losing most of one arm to cancer.

Another friend brought this for me, and you know how I feel about kindness!

a kind gift, coffee mug.png

The magic of Twitter

I needed some recommendations for a readable book on quantum physics (don’t ask) and within 15 minutes Twitter had provided what Google couldn’t. What more could you ask for?

Up the stairs

I’ve been changing the sleeping arrangements in the house. Again. But sometimes you have to as children mature and especially when they’re facing into important exams. As part of the process I was moving wardrobes around and one of them got stuck on the return landing. Which caused fear of a different kind. But I felt fairly cheerful and competent when I finally got it unstuck and then into position in a difference room with the help of a duvet, a hammer, a chisel, and my eldest daughter!

Memories

I had reason to go through some very old files this week due to another panic not yet resolved. They’d been infiltrated by a couple of memories. One of B when she was little, and another of a very important day in my life, when apparently I was more concerned about mints? It made me smile anyway…

R2BC at Mummy from the Heart 

The Empty Room

What happens to an empty room? A room that no one uses?

It’s empty, and you feel the emptiness.

She’s not there.

Every day I open the door, pull back the curtains and open the window.

Every day it’s the same. Nothing has moved. The lingering scent of candles, perfume and hair spray gets fainter as the days pass. Blown away by the gentle August breeze. No empty mugs of tea, with little green rings in the base. No clothes discarded on the floor, no mess, no change.

Every day is quiet, oh so quiet. I’d even miss the podcasts, the American commentators that she loves. Her energy is gone, the whirlwind of activity. The gush of news every evening. The fabulous smells that fill the kitchen.

After a while the room seems to close in on itself. Stay away, it seems to cry as you dare to cross the threshold. Leave me undisturbed. As though it’s succumbing to a coma-like sickness. Pining for the person who is missing.

Empty inside.

 

The empty room belongs to my eldest daughter who was away for  2 1/2 weeks and has now returned, breathing life back into the room once more.

The fear

After a really good day, I woke up with chest pains this morning. Again.

I thought I’d kicked them into touch after they became unwelcome visitors in my life last week.

I’m sure they’re stress related, as they followed a panic attack in town – I was on a very tight schedule: I HAD to get a pile of schoolbooks and the only bookshop that stocks them had a bomb scare while I was there and we were all evacuated. The panic attack wasn’t brought on by the bomb scare, nope, it was that no one could tell me when the shop would reopen, and I HAD to be home for 3.30 to meet B off the bus…

I woke on Thursday with chest pains, which wore off during the day, and the same thing happened on Friday, but they were barely noticeable and quickly wore off. Yesterday I had no pain at all. But now they’re back, and I’ll have to get them checked out, for the sake of the children if nothing else. Because two of them depend on me for most things.

I laugh when I hear how most people attend their GP once or twice a year. Not when you’re a carer. Not only do your children tend to need the doctor more often, but most carers I know struggle with a string of chronic health problems, even those in their twenties.

Sometimes I wish I could tell absolutely nobody if I ever got a serious illness – I think it would be easier to cope.

But that’s not possible when you’re a parent or a carer, whether for elderly parents or for children, especially children with complex needs.

You see the fear is not about the illness. It’s about logistics. How to manage their care, how to find the time to attend medical appointments and fit everything else in, who to tell, and how and when to tell them. Those are the things that worry me far more than any illness.

I HAVEN’T GOT TIME TO BE SICK!

After my last hissy fit about this topic I eventually received a letter from the Irish health service confirming that a full home care package would be put in place if I get ill. Which is very welcome, but still means I’ll be directing everything from my sick bed. Today I was trying to plan for all the scenarios, emergency instructions for my children just in case the worst happens, as well as trying to relax a bit, while still doing everything on the list (apart from exercise, I did have the sense to skip that today!).

Tomorrow I promise to ask for an appointment with my GP and hopefully it will be a wasted visit and nothing serious will be wrong, and I won’t have to fear another string of medical investigations, and how to fit them into my overbusy life.

That’s my biggest illness-related fear, what’s yours?

 

 

Back this, back that

School is back, my back is sore, life is getting back in the normal routine, and I’m back to really needing to do my reasons to be cheerful! So here goes:

The house is empty today, and now it is clean too. Productivity increases exponentially here when all my children are where they’re supposed to be…

Getting back to normal after a week off  – I was even delighted to welcome back B’s morning carer when I answered the door at 6.40 am!

Back to the running group  earlier this week, and I might even manage a Parkrun on Saturday pushing B.

A walk and lunch with friends (and my daughter) on Saturday that left me with dreams of moving to a wheelchair accessible canal side apartment, close to the new tram stop.

That was until Sunday, when my desire to move nearer to the sea was reawakened by a beach picnic with B.  It was warm and fairly sunny, and would’ve been perfect apart from the occasional whiff of rotting seaweed on the breeze!

Poolbeg chimneys August 2017

And then finally last Friday saw the end of the Rainbow Junior Arch Club summer programme with a trip to Lullymore Heritage Park, which I really mean to blog about – just as I promised last year. Hopefully this time I will manage it.

I was worried about how this week would go, but all is unexpectedly calm this evening. Long may it continue.

Hope you had a good week, and for more reasons to be cheerful, head over to Lakes Single Mum.