Dull and domestic details can be cheerful too

Disclosure: I was not in any way paid or asked to include the products on this page, and the photos are my own.

I nearly cried this week when I accidentally knocked a treasured family photo off the wall and smashed the glass, while hoovering. But I didn’t. And while it felt like the last straw for a few minutes, my eldest reminded me how easily it could be fixed. Unlike the problems facing so many other people.

Because so far September is going surprisingly well. A transition from constant fire fighting to dull domestic and disability duties feels odd, but once there’s no disasters, it’s definitely a reason to be cheerful. And yes I went a bit mad with the alliteration there, sometimes I can’t resist it…

The change in the weather will take a while to get used to. For now, I’m mostly frozen. Yesterday I got chilled after a sudden shower of rain, and with a bit of spare time, I swapped my usual 3 minute shower for a reasonably leisurely bath. It was like a reunion with a long lost friend. Wonderful.

Talking of wintry conditions, I’m enjoying seeing all the warmer clothes in the shops and planning what to buy my disabled daughter as her clothes never last long, due to chewing, sitting, spills and stains, and holes from yanking unwilling garments into place. I’m thinking the pink and blue scarf and hat would be be perfect on her.

Autumn clothes

This undomesticated goddess got another boost this week and I could actually kiss those lovely Lidl people sometimes! Mostly when they bring out products that actually work like this limescale remover.

Toilet, Lidl limescale remover

I’m tempted to buy a lifetime supply in case they discontinue it like the chlorine spray that turned grey grout brilliant white again. If you’re reading this, lovely Lidl person, please start stocking it again.

So that’s my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart 

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The new crime of infantilisation

It’s 3am. Your daughter is kicking her legs and giggling. You drag your weary ass out of bed and try to work out what she wants as she can’t explain – so you change her nappy, you offer a drink and adjust the bedding.

But your daughter is not 6 months old. She’s 20. And that’s years, not months.

So perhaps her mum can be forgiven for not always treating her like other adults.

Because I am her mum, and I do get it wrong sometimes.

“You talk to her like she’s a baby!” said my son to me a few years ago. And I realised he was right. I certainly didn’t talk to my disabled daughter B as though she were a typical teenager. But in my defence, she wasn’t, and while I’ve tried to change in deference to her age, it made me a bit sad to stop doing something she seemed to enjoy. I was reminded of that conversation again last year when I saw a tweet accusing parents of infantilising their adult disabled children, because they were opposing the closure of the campus-based homes where the adults currently live and moving them into small houses in local towns. This is Government policy in Ireland.

On further investigation I soon discovered that infantilisation is a big issue in the disability community.

Key complaints include using baby talk, over explaining concepts, talking to a carer instead of the disabled person, not listening to their opinions and over protecting them.

This kind of behaviour must be very upsetting for those with physical and sensory disabilities, and mild to moderate intellectual disabilities. And I regularly read articles by well known journalists that annoy me with the way they portray disabled people. But are all these concerns relevant for those with severe to profound disabilities?

What I’m seeing is that there is a tendency to pretend that my daughter has more abilities than (I wish) she has, and that might lead to her needs not being met, facilities not being provided, and a nod of the head being taken as agreement, when its just her weak neck muscles.

And most bittersweet of all is that although my 20 year old daughter has matured in some ways, she retains several traits and reflexes that are normally only seen in infants and young children. I was going to list them here, but perhaps that would count as infantilisation too?

I find it hard to accept that my daughter is exactly the same as all the intelligent articulate disabled people who may claim to represent her in the media, in policy making, at meetings and protests. I listen to all the policies being put in place for disabled people, and all the rights being asked for, but they don’t seem very relevant to her needs.

Disabled people do not want to be defined by their disabilities, but rather by their abilities, and that is fine by me. They don’t want to be described as vulnerable, and that is fine by me. They point out that all humans have the same needs for food, shelter and love, and that is fine by me too, but my daughter requires so much more help than they do to get her needs met.

Disability is now the preferred term for everyone who has additional needs, but the general public seem to assume that it means that someone can lead a normal life once they have a suitable wheelchair, home, personal assistant, equipment and accessible places to go.

Ratification of the UN Convention on the rights of people with disabilities should help with all those things, but not rights to a day service, respite, life time planning or transition to independent living, and no-one has told me how my daughter’s life will improve. Yet I’d love to know!

Take independent living. It’s being suggested that disabled people who live with their parents should be counted in the homeless statistics, because as adults, they should be living in their own home. I get that, but looking at all the options and the current policy of placing disabled people in little houses in the community, I would not be able to sleep at night. I’d rather continue sleeping in the alcove in the kitchen just yards from my daughter, so I’m there when she needs me at 3am. Or if there was ever an emergency, I can get her out quickly. I will do that for her. Would anyone else?

My daughter is also being gently eased out of the day programme she loves into ‘the community’, under another policy of the Irish State. Go to any shopping centre during a weekday and it is full of disabled people ‘in the community’. I am going to try and make it work for her, but I fear her enjoyment of life will be reduced and the improvements I’ve seen in her social skills will be lost if she ends up spending time away from her friends and familiar surroundings.

Yes trying new things is important, and both I and others in her life ensure  it happens all the time. But it has to be at a pace she is comfortable with, not one ordered by the State and its stupid one size fits all policies.

If you can read this this and object, you are very lucky. My daughter cannot read nor would she understand its complexity. Previously I would have explained that by giving you her mental age, but apparently that is no longer acceptable either! Yes she is an adult, yes she has years of experience, and a scatter of different abilities, but she also has many of the needs of a very young child, and someone has to ensure those needs are met. I’m afraid that only a mother would be willing to do all that needs to be done.

If all this adds up to infantilisation of my daughter, I make no apology. But I hope for forgiveness and understanding. All I’m doing is trying to ensure that my daughter has the best life possible.

 

 

Reasons to be cheerful 7.9.17

Several health and domestic worries this week as life gets back to busy term time normality means that finding reasons to be cheerful continues to be very important.

Parkrun with wheels

We finally did it. I ‘ran’ the 5K Fairview Parkrun pushing B in her adult buggy, and a couple of the fast runners who’d already finished helped push the buggy round the final lap. B loved all the attention, especially when everyone clapped as we crossed the finish line.

Fairview Parkrun 2.9.17 5

We’re still alive

My freezer was making ominous noises once again, and eventually I managed to remove this giant ice block with embedded hot dog roll, but only after defrosting the beast. So the fridge got filled with frozen food including a bag of prawns that I’d bought for one of the children in a moment of weakness: the health and safety police have me terrified of not cooking shellfish properly. But my dislike of waste won and I made a prawn curry. Not only was it delicious, but no one got food poisoning!

ice block

Tiger isn’t closing after all

Discovering that the local Tiger store was not closing after all gave me a random boost this week – it’s where I’ve discovered lots of little things that B likes or that help her, and all at a bargain price.

Getting over the fear

Thanks to the encouragement from all my online friends I went to get my chest pains checked and enjoyed a part of the Irish Health Service that works magnificently: my GP referred me to the free chest X ray clinic – and the service is so efficient (and friendly) that I was home again in 45 minutes. Yesterday I got a text from the surgery to say that the test results are normal. The pain must be stress-related so.

A kind gift

Summer can be a bit of a social desert as most people are busy with families, children and holidays, so it was lovely to catch up with some friends yesterday, including the inspirational Carol Murphy Haslam who is still facing life with a smile despite losing most of one arm to cancer.

Another friend brought this for me, and you know how I feel about kindness!

a kind gift, coffee mug.png

The magic of Twitter

I needed some recommendations for a readable book on quantum physics (don’t ask) and within 15 minutes Twitter had provided what Google couldn’t. What more could you ask for?

Up the stairs

I’ve been changing the sleeping arrangements in the house. Again. But sometimes you have to as children mature and especially when they’re facing into important exams. As part of the process I was moving wardrobes around and one of them got stuck on the return landing. Which caused fear of a different kind. But I felt fairly cheerful and competent when I finally got it unstuck and then into position in a difference room with the help of a duvet, a hammer, a chisel, and my eldest daughter!

Memories

I had reason to go through some very old files this week due to another panic not yet resolved. They’d been infiltrated by a couple of memories. One of B when she was little, and another of a very important day in my life, when apparently I was more concerned about mints? It made me smile anyway…

R2BC at Mummy from the Heart 

The Empty Room

What happens to an empty room? A room that no one uses?

It’s empty, and you feel the emptiness.

She’s not there.

Every day I open the door, pull back the curtains and open the window.

Every day it’s the same. Nothing has moved. The lingering scent of candles, perfume and hair spray gets fainter as the days pass. Blown away by the gentle August breeze. No empty mugs of tea, with little green rings in the base. No clothes discarded on the floor, no mess, no change.

Every day is quiet, oh so quiet. I’d even miss the podcasts, the American commentators that she loves. Her energy is gone, the whirlwind of activity. The gush of news every evening. The fabulous smells that fill the kitchen.

After a while the room seems to close in on itself. Stay away, it seems to cry as you dare to cross the threshold. Leave me undisturbed. As though it’s succumbing to a coma-like sickness. Pining for the person who is missing.

Empty inside.

 

The empty room belongs to my eldest daughter who was away for  2 1/2 weeks and has now returned, breathing life back into the room once more.

The fear

After a really good day, I woke up with chest pains this morning. Again.

I thought I’d kicked them into touch after they became unwelcome visitors in my life last week.

I’m sure they’re stress related, as they followed a panic attack in town – I was on a very tight schedule: I HAD to get a pile of schoolbooks and the only bookshop that stocks them had a bomb scare while I was there and we were all evacuated. The panic attack wasn’t brought on by the bomb scare, nope, it was that no one could tell me when the shop would reopen, and I HAD to be home for 3.30 to meet B off the bus…

I woke on Thursday with chest pains, which wore off during the day, and the same thing happened on Friday, but they were barely noticeable and quickly wore off. Yesterday I had no pain at all. But now they’re back, and I’ll have to get them checked out, for the sake of the children if nothing else. Because two of them depend on me for most things.

I laugh when I hear how most people attend their GP once or twice a year. Not when you’re a carer. Not only do your children tend to need the doctor more often, but most carers I know struggle with a string of chronic health problems, even those in their twenties.

Sometimes I wish I could tell absolutely nobody if I ever got a serious illness – I think it would be easier to cope.

But that’s not possible when you’re a parent or a carer, whether for elderly parents or for children, especially children with complex needs.

You see the fear is not about the illness. It’s about logistics. How to manage their care, how to find the time to attend medical appointments and fit everything else in, who to tell, and how and when to tell them. Those are the things that worry me far more than any illness.

I HAVEN’T GOT TIME TO BE SICK!

After my last hissy fit about this topic I eventually received a letter from the Irish health service confirming that a full home care package would be put in place if I get ill. Which is very welcome, but still means I’ll be directing everything from my sick bed. Today I was trying to plan for all the scenarios, emergency instructions for my children just in case the worst happens, as well as trying to relax a bit, while still doing everything on the list (apart from exercise, I did have the sense to skip that today!).

Tomorrow I promise to ask for an appointment with my GP and hopefully it will be a wasted visit and nothing serious will be wrong, and I won’t have to fear another string of medical investigations, and how to fit them into my overbusy life.

That’s my biggest illness-related fear, what’s yours?

 

 

Back this, back that

School is back, my back is sore, life is getting back in the normal routine, and I’m back to really needing to do my reasons to be cheerful! So here goes:

The house is empty today, and now it is clean too. Productivity increases exponentially here when all my children are where they’re supposed to be…

Getting back to normal after a week off  – I was even delighted to welcome back B’s morning carer when I answered the door at 6.40 am!

Back to the running group  earlier this week, and I might even manage a Parkrun on Saturday pushing B.

A walk and lunch with friends (and my daughter) on Saturday that left me with dreams of moving to a wheelchair accessible canal side apartment, close to the new tram stop.

That was until Sunday, when my desire to move nearer to the sea was reawakened by a beach picnic with B.  It was warm and fairly sunny, and would’ve been perfect apart from the occasional whiff of rotting seaweed on the breeze!

Poolbeg chimneys August 2017

And then finally last Friday saw the end of the Rainbow Junior Arch Club summer programme with a trip to Lullymore Heritage Park, which I really mean to blog about – just as I promised last year. Hopefully this time I will manage it.

I was worried about how this week would go, but all is unexpectedly calm this evening. Long may it continue.

Hope you had a good week, and for more reasons to be cheerful, head over to Lakes Single Mum.

 

3,000 homeless children and still no Government action #MyNameIs

My children are not homeless, but they could be. All it takes is illness, unemployment or bad luck, and that secure safe life you thought would continue forever can come tumbling down around you. I used to rent with friends back in the 1980s and landlords kicked us out twice to sell homes or to demolish them.

But I was young, earning a good salary and childfree, and accommodation was plentiful. There was never a problem moving to somewhere new.

I tolerated issues that I wouldn’t put up with now: like sleeping in a ground floor bedroom when the window could be opened from the outside 😶  But I was young and indestructible, unlike so many of the homeless families in Ireland right now.

Can you imagine coping with problems like these with young children to care for? Having to move every year or so, often to worse accommodation as rental properties becomes scarcer. Having to change schools, GPs, find other services in your new location, as well as trying to provide stability for your children.

And then the day may come when there are no more rental properties that will take your family. When the bank finally repossesses your house. When your relationship breaks up and you lose the roof over your head. Then you become a statistic, and for too long, an invisible statistic. One that other people don’t want to think about.

200,000 empty homes3,000 homeless children

Today is National Day Against Child Homelessness in Ireland, and it’s being marked by #MyNameIs posters throughout Dublin. There are 3,000 homeless children in Ireland and many more are at risk of homelessness, like my friend Tracy, who also has a severely disabled child. You can read her story here:

http://www.independent.ie/irish-news/news/it-worries-my-mum-so-it-worries-me-declan-9-scared-of-becoming-homeless-and-not-having-school-to-go-to-next-week-36064329.html

There are also 200,000 empty homes in Ireland, so something has gone badly wrong somewhere.

Some say that the homelessness is a deliberate state policy, and while that may be an exaggeration, it is certainly state negligence. A policy of leaving the supply of homes to the private sector, ignoring increases in population, the likelihood of home repossessions in an era of austerity, and introducing policies that cut the income of lone parents (who make up a large proportion of new homeless) have all contributed to the current crisis, but presumably the government figured that homeless people are not their voter base and could be ignored.

But they can’t be. Families have to be given accommodation. Right now it’s in hostels, hotels or hubs, all of which are unsuitable and all cost more than providing real homes. So it doesn’t make economic sense.

It doesn’t make sense for society either, because a price will be paid. Homeless families will pay it now. But society will pay later in broken lives and broken people who may need life long support, or worse. If you want children to grow up to respect the State, you need to treat them with respect during their childhood. Homeless children are being treated as expendable right now.

I see this getting worse, because the future planned for us all involves ordinary people owning nothing and renting everything, from cars, to houses, combined with a cashless society, precarious employment and work activation policies, so far more people will be living from month to month, never knowing when one false step will mean they lose everything,

This is not the future I want for my children, or the children of my friends and family.

We must say stop, before it’s too late.

What you can do:

  1. If you see one of the #MyNameIs posters, please take a selfie with one and share on social media to highlight and help end child homelessness.
  2. Follow @MyNameCampaign on twitter and MyNameIs on Facebook.

The Diary of Doom and other reasons to be cheerful

So last week I ran out of time and positivity, and no reasons to be cheerful got done. I’ve been feeling both guilty and a bit bereft since, especially as I’m heading into a stressful period, with school for my youngest beginning next week.

My head has been a disjointed mixture of happiness, stress, anxiety, fear and worry, so rather than inflict all those negative emotions on all of you, I’ve reconnected with the Diary of Doom, aka my journal, and hopefully I can park most of them in there. It’s a bit of a shame really, as something so pretty deserves to be filled with beautiful words, but still.

The Diary of Doom

I’ve taken a week off: From services, carers and my exercise programme.

B is at home all week, and eldest is away. So I can’t just pop out for a run and I’m doing lots of wheelchair pushing and a bit of yoga instead. And you know what they say about a change…

I cancelled the carers so I could switch off the alarms and escape from the schedule for a few days, even though it means doing everything myself. I’m actually enjoying it, but my back is protesting.

Of course, the paperwork and the admin doesn’t take a week off –
I have an appeal to complete within 21 days, a retest of the van, government deadlines to meet, and preparations for school. It’s hard to believe I spent most summers during the last decade down in Co. Wexford with the children. Bureaucracy has made that impossible now.

The nappies ran out, so one afternoon was devoted to chasing up the next delivery and sourcing some to tide B over. Their successful purchase was celebrated with cake, of course.

Cake, The Wooden Whisk,

There was a hospital visit for B, and despite all the health service bashing that goes on, she had an appointment and blood tests done in less than 2 hours.

One of my best friends for the past 40 years came to stay with her husband and daughter and we had a wonderful few days doing the tourist thing in Dublin, including only my second visit to the Guinness Storehouse, which has some very strange exhibits en route to the free pints at the top of the building!

A fish needs a bicycle, Guinness Storehouse,

Then there was the delivery of police traffic cones to ensure I can park the van outside the house even when all the parking space is taken by match traffic heading for the nearby stadium.  Huge thanks to #AbleHour, @cmcoughlan @SenatorJDolan  and @CMDIRL  for making it happen.

Finally, I’m delighted that my friend Carol is now blogging about cancer and disability, and here’s the link to her latest post: https://carolsramblingsblog.wordpress.com/2017/08/24/the-words-that-change-your-life/

For more reasons to be cheerful, head over to Lakes Single Mum who is the host this month.

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… 😶

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…