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/

 

In the real world, disabled children and their carers are at breaking point

Reprinted with permission from one of my friends over on the Spectrum Facebook page.

Just off phone to twins’ social worker.

I’ve told her if more help does not come I’m going public with our story.

I  also said if they refuse more help I want an actual sit down with all involved including government ministers and hse bodies with my children’s services and professionals and if its refused I will go through the media to request that sit down again and I will be like a pit bull until I get it.

I’m done being nice and I’m done being pushed around. 

We are so severely sleep deprived we can’t even be parents to our children any more, we are like auto pilot robots who are starting to malfunction and no child deserves that.

Spectrum

In a house of 5 children, 4 children with needs, 2 do not sleep, 2 are on serious meds, 3 are in nappies, 3 have no independent skills, 3 are non verbal, 2 have pica, one is hypoglycemic, one has severe social anxiety, 2 are aggressive, 2 smear shit, 2 self harm, 4 suffer meltdowns, 3 have no stranger danger and no awareness of any danger around them, 3 can’t dress them selves, 3 are extremely noise sensitive, 3 can not be in each others company for safety reasons, 3 need one to one supervision at all times.

I could go on but I’m depressing myself.

Another family that needs help urgently, but is being ignored. Right now it seems the only way to get help is to bare your circumstances in public and beg for help, and no-one likes doing that. You lose your privacy, you leave yourself and your family open to judgement, and sometimes your children still don’t get what they need.

So please can I ask again that disabled people, carers, siblings, friends and the organisations that represent us, work together to help families like this one, and all the other people I know who need help now.

 

“See me, hear me, support me and value me.” A carer speaks

Note: I loved the speech by family carer and co chair of the Special Needs Parent’s Association, Lorraine Dempsey, at the launch of Carer’s Week, so I typed it up, and she gave permission for me to share it here.

“I have a daughter who is nearly 14 and has multiple disabilities and she has brought me on a unique journey. I wouldn’t have always identified myself as being a carer. Carers week was not on my agenda, and it was only recently that I looked at the role of carers and asked do I fit with the title carer? Is that who I am?

I began to identify as a carer when I recognised that my role far outweighs that of a typical parent. It was also the loss of other roles that I once had in my life: like having to leave the nursing profession that I’d worked so hard to join. I was now providing nursing care for my own child, but without the same level of recognition, and certainly with no money for my efforts.

So what needs does my daughter have that go above and beyond?

When she was a baby she had to be fed, watered changed, caressed, cuddled and comforted, but she also had to be had suctioning and tubefed.

I was handed a tiny 5 lb baby and told: ‘There you are, go home.’

I kept my nursing hat on and for me that was my protection against the all the pain we were facing with a baby that was being sent home to die.

That was the beginning of my journey as a parent, and all the while I had this beautiful other twin who expecting me to be mummy, and nothing other than mummy.

As the years went on, I still didn’t see myself as a carer, things improved slightly, and the medical equipment left the house piece by piece. But the mobility equipment came in, getting bigger and larger, and less child friendly as the years went by. The bright colours were dropped and everything became black plastic.

My daughter is now entering her teens, and I have a one year old who is in nappies, but I also have a 13 year old in nappies, who still requires support to be fed, who requires support to enjoy her life. And she does. She rules the roost at home, and she really does enjoy life.

I now identify with the 11% of women between 40 and 55 who provide unpaid care.

I also identify with the 2/3 carers who don’t work full time. I left a well paid job as a nurse, I left my own income and my own identity and I’m lucky that I have a partner who can support both of us, but that means the state doesn’t support us, we’ve had to struggle to find everything for our daughter, and I want the best for her, and the best sometimes means basic equipment like hoists, ramps and toileting facilities.

Being a carer can be made a whole lot easier by simple things, by providing services in the community so we can go out and enjoy things in the community. We’ve all heard about care being provided in the community instead of residential settings, but the community isn’t ready for that and we need to fight for the community to be open. I want my daughter to live with us in the community, but I need support for that – I am never going to drop my caring role until I die or her life is extinguished early, and all I’m asking is to be heard, to be seen, to be respected, to be provided with some level of dignity for the role that I do as a family carer, for my children to have dignity to be supported as siblings of someone who needs life long care.

My baby who is learning to walk, talk and climb has been watching me and I have a video of her spoon feeding her nearly 14 year old sister. That’s normal for her. But I don’t want her as an adult to feel any imposition that she has to look after her sister, I want to know that the State will support her to be just her sister.

Carers Week enables us to shine a light on carers’ roles, our needs, our aspirations, it gives us recognition for the selfless role we have on top of our roles as mothers and fathers, wives and husbands, brothers and sisters, sons and daughters.

My name is Lorraine Dempsey, I’ve been a carer for just over 13 years: see me, hear me, support me and value me.”

Her speech is here from 37 minutes.

 

On celebrating the saints and scroungers during Carers Week

Because that’s how the public sees us.

Every story about the selfless middle aged woman* caring for elderly parents and disabled children feeds into the saint narrative, which reaches its peak during Carers Week and the annual carers’ awards. And while I’m very happy for those who win and enjoy the accolade, there are carers like me who find the whole thing a bit patronising: it’s like society feels that all we need to keep going is an annual pat on the head.

No mention of real support, pay for the work we do, pension arrangements for when we are too old to care, or anything that really matters.

The rest of the year we’re painted as scroungers.

Of course keyboard warriors like me were blamed when Leo Varadkar (likely to be the next Irish PM) had to row back on his rhetoric about being a leader for people who get up early in the morning. He had to add in carers, and others. But the genie was already out of the bottle, as the above article shows, giving permission to portray carers as whingy costly parasites, so long as it’s not Carers Week.

I write about my life as a carer, and luckily the words pour out of me head like a torrent: I don’t have to sit down and wonder what to write, instead I find myself jotting down thoughts whenever I have a spare few seconds, often when I’m doing something else as well!

But it is hard to find the time or energy to write when you’re a carer, so there’s very few of us who do, but I’d like to introduce you to two friends of mine. Like me, neither will be attending of the events for carers during Carer’s Week. Because they can’t.

This week is Carer’s Week. There will be a wide variety of events across Ireland for carers to attend – lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing – all to celebrate and treat the much deserving carers. But, how many of the nation’s carers can attend? I can’t. I’m housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.I have no one to relieve me so I can go to any of those events.

Read more at Transitioning Angels

We’re back to no sleep. But with Luca I think he has constipation issues again, he’s back on movicol.

Emmy was supposed to go for a blood test today but no one up to the hour drive there and hour drive home and we’re still a bit under weather so I cancelled the appointment, all I seem to do lately is cancel appointment after appointment

We’ve reached the stage where we get no energy boost at all, just permanemt tiredness and feeling flat, the weather isn’t helping. 

I bought cbd capsules for myself during the week, they should be here today, can’t wait to get started as I’m in a shit heap, constant fibro flare and pains in stomoch from IBS.

Read more at the Spectrum Facebook Page.

Both write about the harsh realities of extreme caring in a world that doesn’t really want to know, doesn’t want to think about it, doesn’t want to imagine that it could happen to them too. Even though it could.

 

*The peak age for caring amongst women was 45–49, with 11.2% of women in this age group providing unpaid care, amounting to 572,680 hours of care every week, according to the 2011 census.