Reasons to be cheerful – the simple things

It’s been another week of ups and downs, both of which have conspired to make me very late with this very important post with my weekly reasons to be cheerful. And yes it is important, it helps to keep me grounded and focused on the good things in my life, at least for while. It gives me a lift, and then I can tackle the problems. So here goes:

My severely disabled daughter B was very happy during the early part of the week helped by chocolate cake that she could pick up herself without it squashing into crumbs, and even a trip to Tesco was fun.

Got my van serviced, and despite its age, all it needed was a few new light bulbs. It got its annual wash and is now ready for the biannual NCT next week (the Irish MOT). Fingers crossed it passes.

My eldest daughter unexpectedly bringing me home a take away coffee on Friday. My eyes may have been moist. As I’ve said before: I hate crying, except when people are kind (or I’m grieving). Then I can’t help it. She also made me lunch, as it was a very stressful day, and I may write about that later.

You know I have a phobia of drilling, but I’m a dab hand with a screw driver (no sniggering please!) and doing little jobs like putting in door stops helps me feel more competent around the house.

Huge thanks to Fairview Parkrun, I really enjoyed my first time taking part, but I was beaten by a ten year old…¬†ūüė∂

That’s it for this week: head over to Lakes Single Mum for more happy posts.

 

Everyone’s disabled now, and that’s a problem

During the 20 years since B was born, she has gone from being mentally handicapped, to having special needs, to being severely disabled, to having high support needs, but now apparently she is merely ‘disabled’.

And I’m not comfortable with that.

It’s hard to discuss because it makes people very angry, as I found out this week on twitter.

Language has become an emotive issue on social media, with many people (like me) wary of some topics because we don’t know the current terms in use and the backlash can be ferocious if you get it wrong.

Some believe that changing language can change attitudes, and I agree: but the meaning of the favoured new words has to be crystal clear, especially in this area, where words affect attitudes, policies and the lives of real people.

Disabled is now the preferred term, yet someone walking with a limp can call themselves disabled, as one mother pointed out in a radio interview this week.

If that’s how the public and policy makers think of disability, then they will never consider children and adults like my daughter in their plans.

Families like mine feel betrayed, ignored and abandoned, by the state, the media, and even sometimes the disability community itself. The current public discourse simply denies the existence of severe and profound disabilities.

Worse, I’ve noticed a trend for the term ‘severe disabilities’ to be flung around like confetti at a wedding, especially for inspirational stories like the ‘severely disabled’ man who has a brownie bakery in the US. Great for him, but he bears no resemblance to my daughter. And a journalist I respect asked¬†on twitter to speak to a severely disabled person yesterday. I’d love to see her try to get a usable answer from my non verbal daughter. The only time that severe disabilities seem to be used correctly is in the reporting of medical negligence cases.

The denial seeps through every level of state and society: Through policy, language, and by ignoring any attempt to discuss the issues.

My eyes were opened in 2001 when I was searching for a school for my daughter and all I was offered was a so-called Day Development Centre (DDC) where she would get great care, but no access to teachers. When I challenged this, the existence of DDCs was denied by the State. So we took a case to court, and it was settled in my daughter’s favour. Because children in Ireland have a constitutional right to an education, and that means access to a teacher. However that’s the only right that has helped my daughter. As an adult, she has no rights, especially as Ireland has still not ratified the UN Convention on the Rights of People with Disabilities.

So clarity is needed, rights are needed, and so is understanding and inclusivity.

This¬†article has been doing the rounds, and is an explanation of why we should all use the term ‘disabled’, and I like most of it, apart from the last paragraph:

“We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most.”¬†

Because, you see, my daughter and many others like her, cannot do all those things.

Once again, her existence is being denied by being called ‘disabled’.

Personally I liked the term ‘special needs’ because it sounds positive, whereas disabled sounds negative to me, but I’m happy to describe my daughter as ‘disabled’, as long as her needs and disabilities are also included in its meaning.

I also do not believe that our lives are tragic or that my daughter suffers as this article seems to suggest, even if others feel that way. Nor would I describe my 20 year old as a ‘baby’ despite her functioning level (and that’s a post for another day).

I think if more support, more positive coverage, real rights and real help was provided to the disability community and their carers, then many of these issues would go away. For now the State is happy to sit back, do little, spend less, and watch us all fight each other.

There’s a long way to go. Only yesterday a well dressed tourist whispered “God Rest Her”, as he watched B in the street. “She’s not f*ckin’ dead yet!” was the reply I wanted to give. Instead I smiled, because I’m sure he meant well, and he’d probably never seen or read about anyone like my disabled daughter before…

 

My PR career as a carer

It’s true that events management was not my favourite part of public relations. But organising my disabled daughter’s activities beats the mind numbing bum wiping and form filling parts of being a carer any day.

During the winter it’s a no brainer: there’s her adult programme during the week, and regular weekend activities for her and her brother. I’m on auto pilot preparing for them.

It’s different during the summer months: her club organises a summer project but there is still a¬†lot of event management required from me, as the only parent of a young adult who needs a wheelchair.

So I found myself sitting at the kitchen table on Wednesday morning organising our first trip on the urban train (DART) to an out of town seaside resort (Bray) to visit the Sea Life aquarium with our friends from the Rainbow Junior Arch Club.

9am – I checked all the following:
Disabled parking at or near the station
Working lifts at both stations
How to wheel the chair from the platform onto the train
Accessibility of the aquarium
Availability of a disabled toilet (no changing places toilets, obviously as they are still a novelty in Ireland)

9.30 am – Make a packed lunch for myself and B – in case we couldn’t find anywhere that served mashed food – though I have mashed chips in an emergency. Pack buggy with every conceivable item we might need. No point in taking the wheelchair because (a) the weather, (b) no portable tray (c) not enough storage and (d) only the buggy reclines so I can fix her up after she uses the toilet (I had to lift her on and off, and my back survived this time, but MY DAUGHTER AND OTHERS NEEDS MORE CHANGING PLACES TOILETS).

10 am –¬†Half an hour to help my daughter use the toilet (including hoisting), put on a fresh nappy, get her into her outdoor clothes, and wheel her outside and up the ramp into the car. Phew!

But it was worth it.

Collage of B, Day trip to Bray, Sea Life,

We both loved the DART – I’d never done the scenic journey from Clontarf to Bray along the coast, and I felt like I was on holiday with friends: B loved it too, and was so enthusiastically loud and we got so many glares that I resorted to getting out the Jaffa cakes to quieten things down a bit!

Sea Life kept up occupied for about an hour – the aisles are very narrow and there were occasional buggy traffic jams, but our visit also coincided with shark feeding time, and that meant we had the place for ourselves for a while, which suited my daughter better as she could see more (some exhibits do not have glass walls and those were no good for her).

Coffee and a walk followed, and then a very happy trip home.

The previous weekend involved even more planning, but at least we went to familiar places: a Saturday walk into town and a visit to a new cafe, that could become a favourite as it offered cheesecake, a roomy disabled toilet and music Рbut not too loud.

Sunday involved two trips, complicated by the matches at the nearby sports stadium, that involved me parking in the middle of the road to move the bins that blocked our parking space each time we came home so my daughter could use the toilet.

In the morning we went for our second run with Rabbits and Runners, and B loved it even more than the first time, if that’s possible!

The afternoon saw us dodge the showers at the Hotter than July World Music Event – and I’m sure you’ve noticed by now how much we both like live music events, even better when they’re free.

There’s a bank holiday weekend in Ireland starting tomorrow, so the event planning for my daughter has begun already.

So you could say I didn’t give up my career as a PR when I became a full time carer. I still use the same skills, but for the most important client I’ve ever had: my beautiful daughter.

And that’s my reason to be cheerful for this week. Head over to Lakes Single Mum for more.

 

Facebook Overload

Social media seemed like this new bright shiny exciting toy back in 2008 when I first joined Facebook. Reconnecting with old friends and making new ones from all around the world. Sharing parenting woes, discovering new strategies, learning about rights and entitlements for disabled children, and how to claim them.

But in recent years that shiny toy looks tired and shabby.

Last week I looked at my Facebook feed and I couldn’t see any posts by my friends. Instead it was a confusing mish mash of ads, news items, and posts by people I don’t know in groups I forgot I’d been added to. ¬†I’m involved in so many groups and pages because I wanted to give back for all the help that was given to me. But it’s become overwhelming: that feeling that you have to help others every single day, or you’re a bad friend, a poor advocate. I know what I can do: I’m good at finding articles of interest to others, but sorting out the inevitable conflicts that happen on Facebook? I haven’t a clue. Wondering what to do has kept me awake at night, often over people I do not know.

So a year after I cut back on other social media, I’ve now cut back on Facebook too.¬†I’ve left most of the groups I used to belong to (apologies to all my friends who added me), and I feel better already. My feed is less cluttered with depressing posts by people I don’t even know, and instead I can see news from my friends and pages I’ve liked. Why didn’t I do this before?

I’m not sure what to do next, but there could be more cuts and mutes and blocks ahead.

Sorry Facebook, you’re overloading my life with too much cr*p. And it has to stop.

 

We’ll always have Paris

Except some of us won’t. Not everyone gets to go abroad, and I often get a little pang for the life I might have had at this time of year. I’ve never been to Paris, or many of the other places on my travel wish list: my last proper foreign holiday was in May 1996.

Me, Bellagio, May 1996
Bellagio, Italy, May 1996

I did have plans to buy some kind of disability friendly camper van or caravan, and travel with my disabled daughter, but that now seems unrealistic. The world of transport is moving so fast: I can’t justify the investment, when petrol and diesel vehicles could be banned in a few years time.

And there’s another thing: I’ve read a few stories about non verbal children and adults who’ve died of starvation, because their sole carer died and they were unable to raise the alarm. If my daughter’s future is living with me, just me, then she needs a safety system, she needs a stable home, a year round day programme and regular home help visits, to ensure that she will be found and cared for if anything happens to me.

Obviously this could change if real respite options that my daughter liked were made available. But I’m not holding my breath: I know the State has other priorities.

So instead I’m going to count my blessings and find some reasons to be cheerful:

Life in general

Life has got a little easier in the past six months, as things have improved for one of my other children.

Building work

It’s gone on a lot longer than expected, but it’s almost finished now, and hopefully our damp problems and other worries will be consigned to history.

Plumbing

Yes, everything went wrong at once, and our ancient and complicated plumbing system packed up too. It took four visits by the poor guy who thought that all he’d have to do was service the boiler, but it’s finally working again.

The Bargain Bin

The kind of luck I don’t get very often: spotting a new bargain bin in Penney’s (Primark in the UK) with T shirts on sale for a euro, and in the right sizes for B and I. We got first dibs and I found 3 in colours and sizes to suit. By the time I’d tried them on, they were queuing to rifle through my leftovers.

Bargain Baby Bottle Brushes

Maybe I’m showing my age, but I don’t believe a baby bottle brush should cost ‚ā¨10?

I tried all the usual places and that was the standard price, with nothing cheaper than ‚ā¨6¬†ūüė∂

So I held out until I had time to pop into Dealz and found one on sale there for ‚ā¨1.50.

Result.

And in case you’re wondering, I use the brush to clean reusable water bottles and coffee cups, and the old one had that disgusting looking black stuff at the base of the bristles…

The fridge is recovering from the heatwave

Never buy a Samsung American Fridge. I did, just for the extra storage. I believed the hype and the description, but I was so wrong. It leaks water. The frost free freezer has to be regularly defrosted, and the electronic controls cannot be controlled by the user: it is a fridge with a mind of its own. And in the hot weather, it was minded to warm up, so I’ve had to buy food on a daily basis and ensure that everything got eaten quickly too. Luckily, as the temperature outside drops, so does the temperature inside the fridge. I see less trips to Tesco in my future. Hooray!

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

R2BC at Mummy from the Heart

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¬†‚ėļ

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 Рthe only kind that my daughter can easily use. They are not especially big or complicated Рbut 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/

 

When the summer season is the same (but sunny)

Well almost the same…

This year the days and weeks have meandered by, barely changing with the seasons. My disabled daughter’s adult service is year round, which is good for both of us, and it means she still heads off happily on the bus from Monday to Friday to all her activities and her friends. Occasionally I bring her out for the day, mainly as part of the Rainbow Junior Arch Club summer programme. My youngest¬†is at home most of the time, regardless of season, while my eldest works two jobs, and they are now year round, so her busy routine barely changes either!

Over the years I’ve looked forward to the holidays, dreaded the holidays, and now I barely notice them, as we slide into the summer months, apart from the sun and the sweat. Life just continues. There’s still appointments to go to, forms to complete, meetings to attend, friends to see. It’s comforting rather than cheerful, but comfort is something to be treasured too.

So what else is new?

I could tell you about the broken boiler, the building work that’s going well, but is taking 6 weeks instead of 2, and all the usual ups and downs of family life.

But let’s look at the good things instead, a new Marvel film meant a rare night out with eldest and youngest, a coffee shop meet up to discuss club business (and more), and more festivals to attend with B. This time the Rose Festival in Dublin’s Clontarf, which is about a lot more than flowers. She wasn’t on the best of form, but these certainly made her smile!

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

 

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,