Creating a good life WITH my disabled daughter

‘Ordinary lives in ordinary places’ is the buzz phrase in disability policy right now, and you’ll have seen it before on this blog.

It appears to mean providing the supports and services that disabled people need to live independently in the community. But as far as I’m aware there’s no room in this policy for those with expensive high supports needs (severe/profound disabilities). The implicit assumption is that families will provide cradle to grave care and be responsible for ensuring that their loved ones enjoy a fulfilling life too.

I think that’s very unfair on my disabled daughter B, but for now I’m going to make best of it, and try to create a good life for both of us.

And this week we made a lot of progress.

Powerchair Training

On Wednesday I went to see B learning how to use a powerchair. It’s early days, but she has the most patient person I have ever met working with her. I’m so grateful she has been given this opportunity, and while she has a lot more progress to make, it was fabulous to see her reaching for the joystick, especially as it’s currently positioned in a difficult place for her to reach, due to her limited range of movement.

A dual control powerchair would give her more freedom, and conserve some of my energy too. So I really hope she succeeds in proving she can do this. I think she can.

Bowling

B enjoys bowling, especially with friends and when it’s quiet enough so she can hear the background music. It’s also one of the few sports she can do unaided, though when we went this week with the Rainbow Junior Arch Club, she needed a bit of hand over hand assistance to remind her what to do.

But I am not a fan! Especially as bowling alleys are usually hot, dark and noisy, and the sun always seems to be shining outside, where I’d much rather be. But a good life has to mean that I must try and enjoy B’s favourite activities, as well as bringing her to things I know we both enjoy – like music festivals. My eldest daughter always tells me that I can learn to love something if I persevere with it – she said it worked for her and green tea…. Going with the Club at a quiet time meant it was much more enjoyable for me, and I will try my best to go again.

Running in the Park

I haven’t taken part in an evening race for about 20 years, but I decided to be brave and try and run a 5K race pushing B on Thursday evening. It was organised by a friend of mine in aid of Snowflakes Autism, a local charity that helped one of my other children in the past.

It was like pushing a tank: her adult buggy definitely needs a service, and I might even ask Santa for a jogging buggy to make running easier still. But it was great fun and we even had some very welcome help along the way. And our time? 35 minutes and 22 seconds. Not too shabby ☺

So those are my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

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/

 

The tale of the nails, the maze, the box and the pillow

My disabled daughter’s social worker once asked me to name the one thing that would make our lives easier.

“A handyman,” I replied.

It was not the answer she expected, and she never got back to me with any contacts!

For now I continue to muddle through the endless breakages, breakdowns, problems and issues associated with living in a very old house, with some help from friends and family.

I was reminded of that conversation this week when the shower riser rail crashed to floor and luckily no-one was in it at the time.

I’ve fixed it for now with three nails and some Duct tape. I’ve no illusions about this being a permanent solution, but I don’t even know who to ask for help, as I don’t want to pay for a plumber and I’ve still no handyman. But feeling cheerful that it’s safe to use once again .

And I’ve a few more reasons too:

The Maze

Ok, so I wrote about our trip to Kildare Maze earlier in the week, but the excuse to get out and enjoy a road trip and some real countryside and fresh air made me giddy and happy too!

The Box

My disabled daughter B never fails to surprise me. I knew something was up when I heard the giggle that told me she was doing something ‘naughty’. Well not really, but I played along anyway. I’d sellotaped a box to her tray to help support her elbow and make it easier for her to feed herself. It wasn’t very successful idea. But when my back was turned she managed to pull it away, and began trying to open it. It took her 20 minutes to do what she wanted, due to her limited hand function, but eventually she succeeded.

one
If I can’t see you, you can’t see what I’m doing!
Two
Will this work?
Three
Or this?
Four
I think I’ve solved the problem…
Five
But I don’t actually want the silly pink tray
Six .png
At last, I’ve done it!

Sleep

It was obviously too soon to announce that my sleep problems were over. Too much much to do and B getting a bout of constipation meant I’ve been struggling to string a sensible sentence together for the past week. But not on Saturday. Seven hours of unbroken sleep and I had my most productive day in a long time – without ignoring the needs of the children either.

Hope you have lots of reasons to be cheerful too this week, and head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

Kildare Maze with a wheelchair or buggy #NotAnAd

Disclosure: this is NOT an ad, NOT a paid review etc etc

I got a bit over excited about escaping to the countryside this week, and indulged in some competitive cartwheeling and beam walking in the children’s playground at Kildare Maze. But luckily there seems to be no photographic evidence of that.

Kildare Maze, wheelchair, buggyIt was the first day of the summer programme for disabled children organised by the Rainbow Junior Arch Club: and while my daughter is now a young adult, she still enjoys many of the activities at the Club and the comfortable familiarity of the weekly routine and seeing children and adults she’s known for years.

But this was an adventure, especially as I hadn’t done any research in advance. That meant bringing everything that might be needed, from fresh clothes to nappies to several flasks of water, to a hot lunch and a soft dessert. Also lots of music CDs so she could rock all the way to Prosperous (and if you’re outside Ireland, yes that is the name of the little town closest to the maze).

Being Ireland, the first drops of rain began to fall as we pulled into one of generous disabled parking bays right outside the main reception. So they got that bit right. The disabled toilets? Not so much. There was one by the entrance and it was locked. Just why? It’s not likely to be overrun by passing tourists or vandals, so why discriminate against disabled people in this way? There was a lovely new toilet block within the complex with no disabled toilet and clearly no changing space, which would’ve enabled myself and my disabled daughter to stay longer.

There’s a roomy shelter in the grounds where we ate our lunch until the sun came out again and then we set out to explore.

There are two mazes, both with a purpose that encourages little explorers to linger – unless they suffer from claustrophobia like me. Both are large, and high sided, so you really can’t see where you are, and I was very grateful for my good sense of direction.

We began at the wooden maze, not picturesque, but the wide level paths made it easy to get around with B’s adult buggy and we enjoyed the activity too.

Wooden Maze, Kildare Maze,

After another social break, we tackled the green maze. With narrow paths smothered in hedge roots, this was not so easy to get around, and I worried about causing a jam if we met another buggy. The aim was to get to the watchtower: this is as close as we managed.

Watchtower, Kildare Maze,

And sadly, I don’t think there was any way of getting B to the top even if we had persisted until we found it.

Next on the itinerary was the crazy golf. Too crazy for me, I’m afraid, and I was secretly delighted when one of the children robbed my golf club. It was also a bit dull for B and pushing her round the course was not easy either.

pushing B , crazy golf, Kildare Maze

The last stop was the playground where B was happy watching the antics of all the children (and a couple of the adults too…).

Kildare Maze is just 45 minutes from Dublin City Centre via Google Maps, which took us down some scenic side roads where I briefly stopped to photograph this amazing sight, identifed by Facebook friends as Taghadoe, the site of an ancient monastic settlement and Round Tower, adjacent to a graveyard and the ruins of a 19th-century church.

Taghadoe,

Our verdict? A pleasant excision for a few hours, but definitely better for mobile children, including children with special needs. For us the best aspects were getting out of the city and spending time with friends in a beautiful area.

Countryside, Kildare Maze, Co. Kildare,

 

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.

 

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.

Outdoor fun for disabled kids with Rabbits and Runners

Disclosure: this is NOT an ad, NOT a paid review etc etc

I could have been packing for a week away, I was that laden down. The buggy was full, the buggy bag was full, and so was my new Mia Tui rucksack (which I can confirm is perfect for running!). Actually my disabled daughter and I were just going to Malahide Castle for a Saturday morning supported walk/run with a new group called Rabbits and Runners. But as usual I didn’t know what to expect, so I was prepared for anything.

You may have noticed that I’m back running again, and that I’ve also run while pushing my disabled daughter’s chair, and I’m sure I’ve made promises on here to take her running regularly, but it just hasn’t happened…

It always seems too hard.

I could always find something else to do.

Until last Saturday.

A friend had mentioned Rabbits and Runners, and I had nothing on that morning, so the two of us headed out to Malahide for 10.30 am.

As usual, bringing my severely disabled daughter to a new event made me feel anxious. Would it work? Would she like it? Would it be truly wheelchair accessible? Would we really be supported?

Well I can tell you now that the answers to those questions were Yes, Yes, Yes and Yes.

The worries I had melted away as I pushed her chair into the Avoca courtyard and a member of the Rabbits and Runners team found us, welcomed us, and immediately put us both at ease.

So what are Rabbits and Runners? Well they are a new volunteer group of young people trying to make a difference. They are organising monthly meet ups following the 5K Parkrun event at Malahide Castle. They use the same route, and support special needs children (and adults) and their families to get around the course in any way that works.

B and I were at the front (of course) and members of the team took turns to push her while I jogged alongside and chatted to her. As did anyone we passed or met along the way. She LOVED all the extra attention, and we both enjoyed the fresh air, exercise and pleasant company.

For me it was a joy to feel supported in a way that is rare. Usually it feels like it’s just me doing everything and responsible for everything.  Especially when we leave the house. On Saturday morning the load was shared, and that was a wonderful thing.

B and I loved Rabbits and Runners and want to go again, but the group needs more families to take part to make it worthwhile – so why not give it a try?

Find our more about the group on Facebook by clicking on the link below:

https://www.facebook.com/rabbitsandrunners/

 

 

“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.

 

My Sunday Photos: It’s Festival Time

Sunshine, live Rock ‘n Roll, dressing up, hot chips, cool ice-cream, vintage cars, stalls selling bric-a-brac and festival essentials (retro sunglasses for a fiver) and even beer if you bring your own. Just €10 to get in and all in a good cause. What’s not to like about the Rockin’ Road Festival? It’s Drumcondra’s answer to Electric Picnic. but without the crazy crowds and rip off prices. Especially brilliant when you have a disabled daughter who loves music, crowds and being out…

Louisiana 6
The Louisiana Six
view at the Rockin' Road Festival
You can even see the mountains!
S and B at the Rockin' Road Festival
B and a pal shootin the breeze 🙂

A Family Affair at the Mini Marathon

How to explain the Mini Marathon and why it’s so loved by so many women? After all, isn’t it just a 10K race that takes place every June Bank Holiday weekend through the streets of Dublin?

Yet it’s so much more than that.

For me the highlight is the countdown to the start, with the nervous smiles among the runners, the anticipation, the watches being checked, water bottles discarded, goosebumps from the strains of Sisters, are doing it for themselves, and knowing there’s 30,000 more women at your back.

The Start Line, Mini Marathon 2017,

You feel like you’re part of something.

And you are.

It’s the biggest women only race in the world and one of the biggest charity fundraisers in the Irish calendar.

I’ve probably told you before that I ran it many times in the past, until life got too complicated! And that my first attempt was in 1992 when I was 5 months pregnant with my eldest. This week she walked it pushing her disabled sister, with the help of a couple of friends. And despite the rain that set in as I finished and they reached half way, we all loved the experience.

For me, almost everything went right. I wasn’t feeling well, but with the help of a really fast course, I crossed the line in a very satisfying 57 minutes and 15 seconds. Which means I qualify to enter as a runner again next year. And if I can keep that up, I will do it every year (once I have someone to mind my disabled daughter – or push her round for me).

And having something special to look forward to every June from now on is my  reason to be cheerful for this week. Head over to Lakes Single Mum for more.