Happiness is… being able to use a toilet when you need one

It was just a little accident.

Not the nicest way for my disabled daughter B to wake, but it was soon cleaned up, and she was full of smiles once again.

B, happy, 2017, Smiley, B

Until she wasn’t.

She began sticking her tongue out at me, it’s one of the ways she communicates her needs. But it can mean several different things. So I offered a drink first. But that wasn’t what she wanted.

She still needed to go. So I organised another trip into the toilet, with the help of her hoist.

If you’ve been reading about my daughter for a while, you’ll know that I’ve been toilet training her for nearly 17 years. Surely a world record?

But it’s not always easy. She’s non verbal so it can be hard to know when she needs to go. A regular toileting schedule helps, but enabling her to get to the toilet when she needs to requires a lot of things to go absolutely right. She has very weak muscles, so anything can upset her digestive system, from less exercise, to different food, to antibiotics or other medicines.

So she does have accidents, and they upset her, they’re bad for her skin, embarrassing, unpleasant and undignified to clean up.

And that’s at home. Things are ten times worse when we’re out and about. Because even if I thought it was okay, I cannot put my daughter on a dirty toilet floor to change her nappy: I wouldn’t be able to safely lift her back up again as my back is destroyed and she is an adult weight.

There is a solution: Changing Places Toilets. I’ve mentioned them before, with good reason, because they would improve the lives of children and adults with severe disabilities in so many ways – and the backs of their carers.

All our trips out, bar one, are cut short due to lack of these toilets, we can’t go far from home, and we can’t stay out for more than about 4 hours. Every trip has to be planned carefully so she gets to use the toilet just before we leave, and again as soon as we return. It’s very restrictive.

Smiley, disabled toilet, changing place
The only changing place we use – it’s in the school where the Rainbow Junior Arch Club is held

It could be why some people who have been involved in her life don’t see the point of toilet training her at all.

Some people seem to think it’s easier to let her soil herself and change her when they can: I’m pretty sure it happened in respite and may have been why she stopped enjoying it.

Did I actually make her future life worse by toilet training her?

People mean well, but if and when she lives apart from me – whether in residential or the community – I’m afraid the succession of minimum wage care workers are likely to do the easy thing, the thing they know how to do, the thing they do for others like her. They will change her at regular intervals, and after a while she will surely get used to it, as people get used to most things.

But it makes me so sad for her that it will probably be this way once I’m gone.

Unless there are some fundamental changes made to the lives of people with severe and profound intellectual and physical disabilities.

And that can begin with providing Changing Places Toilets as a standard in every new development.

They have the potential to change lives, change attitudes, it will give those people who need them the chance to take part in their local communities, to travel further afield without always worrying about the next toilet stop. It will make severely disabled people more visible, improve acceptance, reduce fear of the unknown.

And it just might give my daughter and others like her the dignity of being able to use a toilet, instead of being left to go in a nappy.

________________________________

Today is Changing Places Awareness Day: it raises awareness of the need for special disabled toilets that also include hoists and changing benches – the only kind that my daughter can easily use. They are not especially big or complicated – but they can make a very big difference to the lives of those with severe physical disabilities.

How you can support this campaign:

This link explains more about Changing Places Awareness Day:

http://changing-places.org/news/changing_places_awareness_day_2017!_.aspx

If you have a disability or care for someone who cannot complete this themselves, please would you do this survey and explain the importance of changing places.

https://docs.google.com/forms/d/e/1FAIpQLSeavpUMDHbsS6woZmYn-HQTunczLLGytVD6MJ-Xaj1GkWnqoQ/viewform

Finally I’ve written before about a friend’s campaign to get a changing place installed in a new major cinema development. You can support her petition here:

https://www.change.org/p/tim-richards-vuemail-com-access-to-a-fully-accessible-toilet-in-vue-cinema?recruiter=10336651&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=mob-xs-no_src-no_msg

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/

 

How do I recycle these, Minister?

“We have noticed that your bins tend to be extremely heavy. To be honest, disposing of your waste is costing more than your current charges.”

I received this email from my private bin collection company in 2014, and my annual charges were increased from a bargain €99 to €275 overnight. I’m expecting more of the same with the new pay by weight system announced yesterday by the Irish Government.

My bin is heavy because it is full of used adult nappies. Which are very heavy. But what options do families like mine have?

Nappies, pay by weight,

Apparently people with lifelong/long-term medical incontinence issues like my disabled daughter will get a €75 annual waiver. Anyone betting that will cover the likely increase in charges? No me, neither.

The Irish government keeps claiming that core social welfare payments were not touched during the austerity years, what they fail to mention is that many non core payments were cut. And many new charges were imposed. Including bin collection charges for many families for whom the service was previously free.

Of course there was no corresponding tax reduction or social welfare increase to reflect the savings made from outsourcing to private companies.

The result is that many people are struggling, and the imposition of pay by weight bin charges will just make things worse.

In my part of Dublin we have three bins for ordinary rubbish, food waste and clean recycling. There are strict rules about what can go in each, that few people seem to know about or follow. At the same time, some people are dumping more and more of their waste wherever they can.

There’s no incentives to recycle, it’s all about profit and punishment.

I used to be in favour of it, but now the whole thing feels like a con, with recycling being rejected due to contamination, and all the carefully sorted bottles being thrown in together by the collection truck.

It all smacks of a State that enjoys exerting control over its citizens, and not about saving the environment at all.

Because if it was about saving the environment, surely families like mine would be helped to source and use adult cloth nappies?

Disclosure: I am lucky, I will find a way to absorb or reduce these costs, but not everyone will be able to, and I wrote this after hearing a sneering radio presenter this morning predicting that the poor would be bleating on about their inability to pay. Something like that anyway. Also I am very happy with the service from my current bin collection company – just concerned about future price rises.

A spoonful of sugar

I hope you’ve noticed all the positive posts on here? I’m trying really hard to stop moaning, and it’s helping me too. But the problems in my life haven’t evaporated with the summer sun, they’re still floating around and keeping my anxiety levels bobbing up and down.

I’ve been forcing myself to drink tea on shaky days, but without feeling much relief. In desperation one day recently I chucked in a spoonful of sugar as well, and the difference was amazing! Who knew that the biggest dietary enemy was just what I need to feel better? So finding something that helps is my first reason to be cheerful for this week.

And here’s a few more…

… I fixed the coffee machine. It had almost completely stopped working and I was considering throwing it out until my google searches finally revealed the solution to the problem. Result. And a great feeling of competence.

… After SEVEN years, I’ve finally got the garden looking reasonable and as low maintenance as possible. Well apart from my pots. Have to have a few flowers.

… A new low cost gym, a new Lidl and one of my favourite coffee shops are all opening just up the road. Perhaps I don’t want to move after all.

… Breakfast and a run on the beach with friends at a local seaside town.

Balbriggan beach, breakfast running,

… A mini holiday and a few outings when family visited for a long weekend.

Phoenix Park, family,

Lots of great news for my disabled daughter.

… After the training, the qualifying, the arranging, the day is finally here : I’m running in the world’s biggest women only race tomorrow, the fabulous Dublin Women’s Mini Marathon. Cannot. Wait.

Dublin Women's Mini Marathon,

… A fairly major birthday looms and I’ve decided to spoil myself a little bit. Watch this space 😀😀

Hope you had a good week xx

(Head over to Lakes Single Mum for more reasons to be cheerful)

 

Hot wheels and cool news

You know how much my disabled daughter likes her adult programme right? Well I can tell you now that it has been rolled over for another year. Getting the news is great in all sorts of ways.

Timing – confirmation of her original placement did not happen until the week before she was due to start in September 2015. That was the fault of the Irish Health Service. This year they have hit their target of informing me before the end of May.

Future – there’s no certainty yet about that, but this year’s roll over is a hopeful sign apparently – either that her place will be confirmed indefinitely or that it will be confirmed on an annual basis. Here’s hoping!

This week also saw the staging of The Lion King, a special production that a group of disabled adults have been practising for all year: it was a mixed ability group, including some with speech and some with mobility. It was great fun to watch and B totally enjoyed taking part. As with last year’s Christmas play 😀

Christmas, The Lion King, Play, Angel, Bird, B, Smiley,
And today was another milestone day: after an 18 month wait, B finally got the chance to try out a power chair. I am really excited about this as she used to love using a walker when she was a child, and later driving her chair in school on the AKKA,  which is an electronically controlled mobile base that uses photo-electric sensors to follows a predetermined route, and the wheelchair user can control the movement using a switch like the yellow one in this old photo collage:

AKKA, Smiley,

A power chair for B would have dual control, so her carer could both prevent collisions and also use the power to take the strain of pushing, which could become very difficult for me as I get older. B was a bit unsure today, but hopefully she will love it once she gets used to the idea.

Power chair, first try, B, Smiley,

A little bit of freedom to make mistakes should be allowed too No-one wants to have everything controlled for them so I’m hoping the health and safety gods will look away occasionally and give her the chance to learn and maybe even break a few rules…

 

Why I’m angry about the Prime Time respite special

After watching the Prime Time programme on respite this week you would think that Official Ireland has a grudge against disabled people and their carers. We’re all an expensive annoying nuisance, and they wish we would just go away. So when we get angry and have to be given a bit of airtime, Official Ireland sets things up so that each interest group is guaranteed to piss off one of the others, and the smooth talking promises of the politicians are what remains in people’s memories.

Those poor carers, thank god something will be done to help them now. Now let’s have a cup of tea and watch something more entertaining.

That was the reaction that oozed from social media last night from those not actually involved.

While disabled people and carers were very angry on social media for different reasons…

Divide and conquer, yep that certainly seems to be Government policy in this area, as in so many others.

I put most of the blame for the programme squarely at the door of RTE, Ireland’s national broadcaster. Stuffed full of intelligent, highly paid people, there was no excuse for their presentation of disability issues.

It began at the beginning, when the presenter referred to the ‘burden’ that intellectually disabled adults placed on their carers. First black mark. Cue blood pressure spikes in disabled viewers all over the country.

You see any time that carers try to get their needs recognised, the publicity and headlines are always twisted around to suggest that these particular carers are being selfish and looking for sympathy because their lives are made so hard by the ‘burden’ of caring for their loved ones.

NOT TRUE

Our lives are difficult because the State will not provide adequate supports and services to disabled people and to their carers.

To make things worse, the show also featured parents discussing the difficulties of caring for their disabled adult children. In front of them. I guess most parents have to do this at times in meetings. But surely not on camera, on a programme where every detail would have been planned? Perhaps it was thought the disabled adults would not comprehend the conversation, but it made me uncomfortable, and I cannot understand why no one at RTE could see that this was very inappropriate.

According to Prime Time there are 28,000 people recorded as having an intellectual disability, and 69% of them live at home with their parents. That means 16,800 families where respite is needed. Yet respite beds are being closed all over the country, affecting the ability of carers to continue helping their loved ones to enjoy the lives they deserve. Respite is also needed in emergency situations, it’s a break for the disabled adults, a chance to mix with other people, and get used to being cared for by others, and perhaps a transition to living independently of parents before they die, instead of a traumatic transition after their death. These issues were covered in a much more balanced way on a follow up programme on Radio Kerry.

After the film there was a studio discussion with family carer Damien Douglas and Minister for Disability, Finian McGrath, TD. Personally I believe the Minister – who has a daughter with Down Syndrome – has made progress since he took office, and it was always going to be an impossible job to please everyone as there is a very long shopping list of disability and carer issues that need to be addressed. Unfortunately he said some unhelpful things on the Prime Time show:

On the postcode lottery for respite: “There’s better respite in parts of Dublin.” Perhaps, but many disabled children and adults in Dublin have had no respite for years, and that statement increases rural resentment at the idea that their needs are ignored in favour of families who live in the capital.

“I’ve restored the respite care grant.”  This provides a welcome income boost for many families but cannot be used to purchase respite if there is none available. Even getting a sitter can be completely impossible, especially if the disabled adult has high support needs.

“We need to build the respite services around the person with the disability.” That’s all very politically correct, but the needs and situation of carers and their families also have to be taken into consideration.

He seemed to accept the need for 2000 respite beds over the next 4-5 years : “I’m determined to fight for that. We’re now moving on to investment in respite services.”

“Already this year I’ve managed to get 182,000 respite nights for adults with intellectual and physical disabilities.” I’d love to know who got these!!!

“In the next few months we’re putting in €16.2 million to develop home support services within the home for those families who don’t want to send their children or young adults to services outside the home. I’m also talking to people with disabilities and they tell me they prefer to have the respite services in their own home paid for by the HSE.”  Cue an eruption on social media.

Take note: The anger about this issue isn’t going to go away any time soon…

 

 

5 reasons I’m not marching today #EnoughisEnough

Enough is enough posterI planned to march today, I made this poster and I shared it on Facebook. I asked who else was marching. The response was not encouraging. It was the same people yet again. But I still planned to go ahead, until the venue was cancelled. The one that made sense to me, the one where actual decisions are made about health, where I’d be standing shoulder to shoulder with people I know. And here’s another five reasons too:

One

I was talking about it over the weekend and someone commented that marching is something socialists do. When did that become a thing? In the 1980s my first march as a middle class student was with lots of other middle class students protesting over rent increases in student accommodation. Then I marched in support of the right of the 14 year old at the centre of the X case to go to the UK for an abortion in 1992. Then I marched in anger over the Government’s failure to improve the health service during the Celtic Tiger years, which caused so many needless deaths, including that of Susie Long. Remember her? I do. More marches followed, but yes I also noticed they were inevitably hijacked by the left wing parties, regardless of the views of the marchers.

Two

I would be marching at a location that has nothing to do with my children and the services and assurances they need.

Three

I am concerned that no-one will care that I’m there, because I’m always there. At every march and every demonstration. It’s new faces that are needed, I just look like a serial protester now. And since #EnoughisEnough is mainly about services for young children with autism, my presence is not really relevant.

Four

My face has never been a good fit anyway. Not poor enough to claim carers’ allowance any more, but not enough time or expertise to use my savings to find services privately. And anyway having to pay for everything when you can’t work drives carers into a poverty trap with no escape route due to their caring duties, as happened to Transitioning Angels.

Five

Will the march achieve anything? Except a chance for camaraderie and to let off steam (which is useful). Yesterday’s Sunday Mail reports that internal Government papers show that the health services cannot deliver on rights for disabled people. Due to funding choices, and disability not being a priority for most politicians, in my opinion.

I hope I’m wrong and I wish the marchers every success. But I’m going to sit this one out.

 

The Hub

It’s the word that got me first. What does ‘hub’ conjure up to you? I keep thinking of a hive of insects, which is obviously wrong. Or the hub cap covering a car wheel, often dirty and broken. Or the centre of a bicycle wheel with spokes heading out in all directions. Actually I think that last one is probably what is meant by a hub, at least in terms of the Hubs that are being set up for disabled adults under New Directions, to provide a base for accessing services in the community. However the name does not give me a warm fuzzy feeling, or suggest somewhere welcoming. At least not to me.

But I’m always willing to be converted, so I happily accepted an invitation to visit a Hub in Drogheda, about a 40 minute drive north of Dublin. Obviously I brought my disabled daughter B with me, so I could see what she thought, and whether it would suit her.

the-hub-drogheda

This Hub is a revamped building in the grounds of a Rugby Club in Drogheda, it was set up as a partnership between parent group Autism Support Louth&Meath, the Irish Health Service (HSE ) and non-profit Praxis, and parents sit on the steering group. It provides a service for 15 adults, all bar one have autism. and most have moderate intellectual disabilities. The adults spend 75 per cent of their time in the community and go out in groups or on their own – everyone has a personalised programme of activities. There are also group activities like yoga and music and the adults can choose to take part or not. There’s even an allotment with chickens!

the-art-room

Specific life skills are taught, like how to use a pedestrian crossing safely. Specialists come in to the centre to meet individual needs, such as occupational therapy. There are a number of different rooms for different activities, such as this lovely relaxation room.

relaxation-room

The Hub was wheelchair accessible but there were no changing place toilets for those who need a hoist for toileting or changing. Nor was there a medical team on site.

The atmosphere was quiet, friendly and purposeful, perhaps a bit too quiet for my daughter, who was a bit withdrawn during the visit. The adults at the centre all seemed content and occupied, which was great to see.

Perhaps there will be different kinds of hubs, maybe some will be more lively, and with a wider range of facilities, who knows? My daughter follows a very similar programme, and spends a lot of time in the community, but it’s not ‘her’ community, it’s a couple of miles away, and under New Directions, she’s supposed to be closer to home. Also her current service is on a campus – which means it has lots of specialist facilities that are not available in the community – but campuses “do not comply with the criteria.” This makes me sad.

I can see how hubs could offer a much better lifestyle for those with autism and mild to moderate disabilities, who can easily enjoy and take part in community activities.

But I’m not convinced yet that hubs could work better for adults with multiple disabilities and complex medical needs. My daughter seemed to agree, she was interested, but not excited.

looking-around-one-of-activity-rooms

 

A crazy week

My head is in a spin from everything that has happened over the past week, good and bad, and next week promises to be even busier, with 7 appointment for the children and myself on top of everything else. Last week saw the launch of Profound Ireland, in which I played a small part, as this new group will be campaigning for better supports and services for children and adults like my disabled daughter B, as well their carers. There’s also been a lot going on with he who shall not be written about on this blog. And finally the response to my post on respite continues, with phone calls from people who’ve been avoiding me for months (looks like you really do have to go public to get results, which is very unfair), but also the unexpected kindness, support and more, from the really lovely bloggers in the Irish Parenting Bloggers Group. I cannot find the words to thank them enough for what they did for me this week, including organising the delivery of this beautiful bouquet of flowers.

flowers, Irish Parenting Bloggers, .png

And there were other reasons to be cheerful too…

Meeting a twitter friend by chance in the street. When I say meet, he called my name, and I looked blankly back, never having seen a picture of him before! And it was really special to meet someone I talk to on-line in real life, it doesn’t happen that often.

Going to collect B from her day programme for an eye appointment and hearing her laughter at the end of a very long corridor before seeing her ..

Getting a buggy organiser. I love the internet, and without googling for ideas for a replacement changing bag and even a cup holder, I would not have discovered the joys of a buggy organiser: I believe you can never have too much storage when you’re out and about with a disabled person, another reason why I hate wheelchairs.

And talking of wheelchairs, the assessment for a replacement for Bs old model will happen this week after an 18 month wait. I really hope that the team will listen to the practical things I need to support my daughter’s lifestyle, rather than just focusing on health and safety.

Have a great week and head over to Mummy from the Heart for more reasons to be cheerful.