Trapped at home

Going to the toilet is a basic human need, isn’t it?

So access to a suitable toilet should be a basic human right. Right?

Wrong.

If you’re severely disabled and cannot use a normal disabled toilet, or have other medical needs, you may be trapped at home, only able to go out between toilet breaks.

You may not be able to move from your wheelchair to the toilet because of the severity if your disabilities, or you may have incontinence or toilet training did not work for you, perhaps due to intellectual disability.

Many people in this situation have carers who find different ways to manage, at least for a while. They often change their children’s nappies on a dirty toilet floor, until they can no longer lift their growing offspring, or their backs suffer irreparable damage. I use a buggy that tilts so I can dress my daughter after using the toilet or simply change her. But both actions are exhausting and dangerous for me and sometimes even for her. I’ve looked at buying a wheelchair accessible camper van that would have a toilet on board, but none are available in Ireland. The alternative is to venture out between toilet breaks or be trapped at home.

Is this acceptable in a society that calls itself civilised and aims to be inclusive?

I don’t think so.

What is needed are extra large disabled toilets with a bed for changing and a hoist to lift the disabled person out of their chair, as well as all the other facilities you’d expect. These toilets are called Changing Places and I use this one in a school with my daughter at weekends.

smiley-disabled-toilet-changing-place

But there are only a couple of public facilities in the whole country.

And no one seems to care, as special needs campaigner Aisling McNifficent found out when she brought her disabled son Jack to the revamped cinema in the Liffey Valley Shopping Centre.

“Firstly I was 20 mins finding parking because there were no available wheelchair spaces, despite promises that more would be added with the new development. This is very important to us as Jack immune suppressed and can’t get cold or wet so we have to park near the door. Then I needed to change my son’s continence pad. I have spoken to several different managers about the lack of a changing area and was so upset when the new cinema was built without one! The only changing station is in the middle of the ladies toilet and is only suitable for a young baby. If it was even a standard size it would be better and situated in a wheelchair toilet but the wheelchair toilets are all just toilets.

“I’m so upset about the lack of facilities and the attitude of management who basically told us that we all have to deal with things in our lives! That is completely missing the point. Liffey valley shopping centre is very near to a number of facilities for the disabled, so it should be equipped to cater for EVERYONE. No help was offered, and we had to change our tickets for a later film and go into the shopping centre to use a larger disabled toilet there, and even that had no hoist or changing bed. I have been asking for a proper changing area since before the new build. There is absolutely no excuse. My concerns were not passed on. Or worse, nobody cares!

“We will not let this go. We go to the cinema A LOT as Jack loves it. and there are so many things he can’t do…”

For children and adults like Jack, a Changing Place is the equivalent of a toilet for the rest of us. If Liffey Valley and other places do not install them, the day may come when Jack will no longer be able to go to the cinema or anywhere else.

He will truly be trapped at home. And that is very very wrong.

jack
Jack

More about Changing Places in Ireland can be found here:

http://www.inclusionireland.ie/content/page/changing-places-locations-ireland

There are also a Facebook page and group:

https://www.facebook.com/ChangingPlacesIreland/?fref=ts

https://www.facebook.com/groups/ChangingPlacesIreland/

Shares and RTs of this post will be greatly appreciated. It has been written in support of Aisling, my own daughter, and the SEND bloggers’ #phantomloos campaign that takes place on October 31st.

 

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My Sunday Photos

October has been a difficult month for this family. So since I still can’t wrap my head around relaxation, or meditation, or CBT, I needed a distraction, and I found it in an Instagram picture challenge from Deborah at the clotheslines.ie using the hashtag #tcl31daysofhappy. The challenge got me back taking pictures again, and thinking about taking pictures, and that stopped me thinking about other things…

And people seem to like them, so here are some of the most popular:

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water-and-leaves-phoenix-park

man-reads-book-camden-street

music-buskers-smithfield

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Study links sugar and Alzheimer’s just in time for Halloween

Enough already!

It’s B’s birthday tomorrow, and the house is already full of goodies.

From yesterday, when she and I mixed a cake that got finished (badly) in the microwave after the oven decided to break down half through the baking process.

From today’s Halloween Party at her adult programme.

And there will be more tomorrow, because everyone knows how much my daughter likes cake. As do I.

But my excitement at the prospect of a cake feast was tempered when I read this article suggesting that everyone should stop eating sugar and most other carbohydrates to avoid Alzheimer’s Disease. Which I do want to avoid, and I suspect you do too. More than that, none of us would wish this dreadful disease on our children.

What a way to bring me back down to earth, and all the other families who are getting ready for the annual Halloween sugar fest, and a mid term break that may be peppered with pizza treats.

I wonder how families can follow this kind of dietary advice, unless they can keep the whole world at arms length, including the internet, the telly, schools, definitely hospitals, grandparents, pals and eating out at most restaurants.

Obviously sending your child out trick or treating is the last thing you’d want to do.

I would love to hate sugar and all its evil relations but I don’t. I didn’t really eat sweets as a child, but dinner was always followed by dessert, and good times always meant ice cream or chocolate or something sweet and delicious.

It was the way it was. No one in my family who had a sweet tooth got Alzheimer’s, and I’ll always remember my granny’s eyes lighting up at the sight of cake and cream even in her late 80s when she had Type II Diabetes, yet her eating habits seemed to have no impact on her very sharp brain. Ditto my Dad.

That’s not to say I don’t greatly admire people who can give up sugar and refined carbs. I agree they are empty calories, and I’m not a scientist, so I can’t argue with the latest theories that suggest that sugar and refined carbs are the real reason for the diseases of Western Society. My problem is that similar claims were made for other food types during my lifetime.

Now medical problems mean that I already have a long list of foods to avoid or cut down on, including so many things that make healthy food tasty, like garlic, spices, tomato and onion, as well as lemon and lime. I’m also supposed to eat a low fat diet, avoiding red meat and dairy too, plus chocolate, coffee and wine (I may ignore some of this advice). Cake is one of the few culinary treats that does not upset my digestive system at all, though obviously it doesn’t do much for my high cholesterol.

My diet would ideally be limited to white chicken and fish and a few green vegetables, plus a few nuts and seeds, and I would be thinking about food. All. Day. Long.

My children need me to be present and content, not cranky and hungry.

The mad thing is that apart from the treats, most people think I eat a healthy diet, mostly made from scratch, and including sugar free muesli, homemade soups, salads and dips, and lots of toast!

Everything in life is a risk, even the basic stuff we do without thinking: many people die each year getting out of bed, and more die when they can’t. Food is one of the things in life that I enjoy, and I intend to do so for as long as I can. And when there’s delicious cake and chocolate sitting in the press just waiting to be eaten, what am I to do?

My biggest fear would be that I’d miserably give up all the foods I enjoy and then get Alzheimers anyway. Or something even worse.

So for now I’ll stick to the old advice:

Moderation in all things

And

A little bit of what you fancy does you good

(Especially at Halloween)

Have a good one!
halloween-food-trick-or-treat

 

Reasons to be cheerful 14.10.16

It’s been a much better week. So far almost everything has gone to plan, though a lot of deep breaths were involved. Less stress meant I found the energy to get out and do some exercise too. And some other things, like…

…Rehoming and decluttering my bone china with a friend who collects it.

…Part two of my empty the shed campaign went well, with another huge load of junk gone to recycling.

…Watching the X factor again with my very happy daughter.

…A Smiley reminder from her of why I continue helping to run the Rainbow Junior Arch Club.

…A sunny Sunday afternoon at the wonderful inaugural busker’s fleadh in Smithfield with B, who loved dancing to all the music.

…Controlling my nerves at a carer’s meeting and standing up to explain my daughter’s lifelong needs to the politicians who attended. I found it tough though, and was ill again for a while in the afternoon.

…A Monday morning that went to plan: I had an empty house by 10am and I was feeling well, definitely an added bonus. That’s continued all week, so the planned trip to the GP has been put on hold for now. The relief!

…Yesterday morning I felt angry and anxious, but I managed to channel it into something vaguely positive – cleaning the porch, a job that badly needed doing.

…The end of the humid summer weather means it’s finally worth straightening my hair again, and I get to wear my new hat too!

So those are my reasons to be cheerful for this week, what are yours?

More reasons to be cheerful over at Lakes Single Mum.

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Autumn 2016 style

I was still wearing summer T shirts just two weeks ago. Now the heating is back on, the second duvets are on the beds, new fingerless gloves have been bought and a perfect evening at home involves cosying up to a real fire with Netflix on the telly. This is Autumn 2016 style in this house.

And here’s our pick of current viewing:

Luke Cage

luke-cage

If you like Narcos, you may like Luke Cage, even though one is a drama documentary and the other is based on a Marvel Comic. There’s a nihilistic fatalism about both, living on the edge today, because you could be dead tomorrow.

I enjoy the desperation, the determination and the bravado of the different characters. Were the comics really like this? If so I clearly missed out.

Similar film techniques are used too: the crime boss is shown enjoying the entertainment in his club while the criminals who work for him kill and are killed out on the dark streets of Harlem.

Luke Cage goes from hero to zero as criminals and politicians combine to position him as the threat to community order, helped by YouTube and the power of those who upload to distort the full story by only showing part of what happened.

I’m loving it…

Death Note

My son recommends this anime series which is apparently one of the popular of all time even with people who don’t normally watch anime. This is his description of the series:

“It’s about a kid in secondary school, he’s not fond of life, he finds this book called the death note, if you write someone’s full name in it they will die.

“He begins with good intentions by killing criminals, but then he begins to kill others too and it affects his mental health and the serious charts the changes in his personality and decline in mental health.”

Justin Timberlake + The Tennessee Kids

You’ve worked out by now that my daughter B loves music, of all kinds. But she and Justin go waaaay back. For a while it was a toss up between Britney and Justin as to who she liked best. She still loves to watch him dance, and I’m sure she’ll really enjoy watching this concert movie. It’s available on Netflix from October 12th 2016.

Designated Survivor

Recommended by my eldest daughter (and it’s on my must watch list too) this show stars actress Maggie Q (from Nikita, which we both adored) as a cool FBI agent, as well as Keifer Sutherland and Natascha McElhone.

America’s fate rests in the hand of a low-level official after an attack on Washington decimates the government in this gripping political thriller (from Netflix).

Happy viewing!

Disclosure – I was a member of the Netflix stream team on my previous blog. Membership gave me free Netflix and other nice stuff.

 

Imagining an independent life for my disabled daughter

I never thought I’d be in this place, almost 20 years after I watched my scrap of a daughter fighting for life in an incubator, just hoping she’d make it through another 24 hours. I never guessed that she would eventually survive and thrive and bring joy and happiness to so many, but be left with such severe disabilities that she will need life long support.

No empty nest syndrome here. The struggle for special needs services goes on and on. It is relentless, it makes no allowances for exhaustion or illness or old age or any other life events, when you are a special needs parent you are married to the fight until death do you part. And once your child becomes an adult it may become even more difficult. Because then the young adult in your care has no constitutional right to anything, and they may no longer be cute and loveable, so getting the public – or anyone else – to take an interest gets harder and harder.

My daughter B has just one more year to go before her first adult placement finishes. And I need to organise something else for her, so as soon as people returned from the summer holidays that we cannot go on, I began ringing and writing and emailing again.

And as I look at services for next year, I’ve started to consider the long term, what will happen if and when I can no longer look after her. And that’s hard, because I can’t imagine not living with her, nor can I imagine her living anywhere else, and I have nightmares about the reported abuses in residential services. All the talk right now is of personalised budgets and how these can enable disabled people to live ‘ordinary lives in ordinary places’ and I wonder how that can possibly work for someone as disabled as my daughter.

And when I see so-called success stories of people with disabilities living in the community I wonder are they just endorsing the current fashion for this idea, without mentioning any downsides? Sometimes I feel that my daughter and others like her are being excluded by a policy that cannot possibly accommodate her needs. Or can it?

My interest was piqued by this recent RTE News video from an Inclusion Ireland event featuring Fran O’Keeffe, a young woman described as having a profound disability   who was living in her own home on the family farm. How could this work, I wondered? So I was really delighted when Fran’s sister, Molly, agreed to tell me more, and this is their story.

Fran grew up on a farm with her siblings, who are all close. When she was born, her parents were told that she had a profound learning disability and would never be able to understand anything. Thanks to their determination and the hard work of Fran’s mother Nuala, she more than surpassed those predictions, though she is still at present viewed as non-verbal and has very limited expressive communication. She is finding her voice since her move into her own home.

After leaving school, she moved into residential care with a day service as well, but it was clear from early on that this type of service provision based did not meet Fran’s needs as a person. She began to get sick and sad and her family wondered if there were any other options for her.

In 2006, Molly who was based in Trinity College, met with a range of people from overseas who had successfully supported individuals and their families to manage their own personalised budgets, and she learnt how having control over their money could give people with disabilities choice about how they live their lives.
It was a light bulb moment. If Fran could have access to the money allocated by the State for her support needs, then she could live a life in the community doing things she enjoys with the people she loves.

“As a family we sat down and tried to imagine the life that Fran would want,” said Molly. “Then we tried to make it happen.”

But that was just the start of a 9 year journey to persuade the Irish adult care system to find a way to release the money and give Fran that chance. Fran was involved at every stage, the family listened deeply to her so that she could make choices, and Fran was clear about what she didn’t like i.e. a place or a person or an activity.

“It is not an easy option,” says Molly. “It may not be for everyone, and that ok. It should be about choice, what works best for the individual and their family”. The individual and their family need to be offered real options, information and time to explore and choose the best option for them.”

The process was at times very challenging on the family, who were constantly told “no” by the system, at every turn. Endless excuses were made: her funding could not be broken out of the block funding for the service provider. Even if it could be, the loss of funding would cause the residential care facility to close, affecting other residents. And so on and so on and so on.

But the family never gave up, they just persisted with the phone calls, letters, meetings, lobbying of anyone who might be able to help. In 2014, Fran and her family began to work in partnership with Possibilities Plus. (This is an organisation that was set as a pilot programme through Genio funding to support the individual and their family to plan, design and manage an individualised living arrangement. Unfortunately, PossibilitiesPlus is currently at full capacity).

Finally in 2015 everything came together and Fran moved into her own home supported by her own support staff and her family. There had been a carefully planned transition and once she was into her own home, the family began to see Fran flourish. Almost immediately, her health improved, and over time so have her cognitive and communication skills.

Fran and the family have faced lots of challenges over the past 16 months. What they have discovered is that for Fran moving into her own home is the first step of the journey to an ordinary life. They now understand that there is lots of work ahead to support Fran to develop her relationships and to find her place within her own community. This will be a slow and ongoing process. She also still attends the same adult day service, when she chooses to do so.

“In finding her voice, Fran is indicating that she is ready for more opportunities to do ordinary things in ordinary places surrounded by ordinary people. She’s is now and will continue to gain more control of her days. Like most other adults.”

At no time during our conversation did I think that Molly was an untried idealist, viewing the world through a rose tinted lens of unrealistic expectations. Like the rest of us, she and her family have fought the system, the bureaucracy, the unbending rules, the fear of change and she was pragmatic enough to admit that everything is not now suddenly solved for Fran for the rest of her life. Things will change and there will be challenges in the future. It is not the end, it’s the start of a whole new phase.

And I realised that while I can’t yet imagine my daughter living an independent life, I no longer think of it as impossible. And that’s a start.

frans-house
Fran’s home

Needing to be cheerful

My mood is not good again. Not good at all. I’m losing interest in the goals I set myself for this year, I’m putting on weight again, eating lots of toast and chocolate. I don’t know how to turn it around. Distraction is helping, but I just feel so helpless because I can’t seem to make things better.

Photography challenge

The Clotheslines has a photography challenge over on Instagram during October. Just what I need to drag my brain away from other things and get me out of the house too. Here’s one of the photos from the cutting room floor…

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Published

No not me, but another blogger whose writing I’ve enjoyed for years. Vicki Jeffels of Vegemite Vix is in print with from Pavlovas to Pork Pies, and if it’s anything like her blog, it will be a cracking (and very funny) read.

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Going up North

Another lovely trip to Newry with my eldest as a birthday outing, and the bargains are even better now with the change in exchange rates. Stocked up on pharmaceuticals and groceries as usual, plus a new purse for myself as a treat.

new-purse

I will be sharing this post over at Lakes Single Mum who is running the Reasons to be Cheerful linky this month.

Thank you for treating my daughter like a princess

I couldn’t have written the script better myself.

Dressed in her favourite pink, my princess and I headed down to mingle with the crowds heading for the All Ireland replay match between Dublin and Mayo. Excitement was at fever pitch, motor traffic was at a standstill and the pavements weren’t much better. Exactly how my daughter likes it.

And despite the fact that the crowds were really there to support their teams, they treated my daughter as though she was the real reason they’d all descended on our part of Dublin. And for that I’d like to thank them.

drumcondra-on-match-day

From the gallant prince who exuberantly cleared the way ahead through the crowds egged on by his friends (retainers?).

To the bands that began playing just as we approached them.

To the lovely woman (loyal subject?) who gave a her a free teddy bear from her stall. Not just any teddy. It was a GAA Teddy, the perfect gift for a Dublin born princess on match day.

To the officials (footmen?) who allowed us through the barriers to Jones’ Road without a ticket.

To everyone who smiled.

THANK YOU

You made my daughter feel like a princess today and a star in her very own fairy story.