The end of the heatwave

And I'm glad.

I know that cooler temperatures will not please all my friends, so I will be celebrating with a guilty conscience. But a heatwave is not much fun for this family. It's the only type of weather when my stage of life becomes sweatingly obvious. The children don't enjoy it either, and none of us can sleep well, so to keep the temperature in the house bearable, I mostly stayed indoors with the windows and doors open and the curtains drawn trying to keep the house as cool as possible.

Now it seems to be over, so I can venture out more, and leave the curtains open!

So that's my first reason to be cheerful for this week's short post. Here's the rest:


  • The bed - a new addition to the kitchen that is already making a difference. 



  • The Rose festival - a lovely afternoon out with friends and Smiley too of course.



  • The GAA (Gaelic Games) championship matches have begun in the nearby sports stadium, so it's getting very busy lively around here at weekends - and if I'm tired and busy, I don't need to take Smiley far from the front door to keep her happy and entertained.



  • A couple of hours in a local pub with some friends old and new. Lots of laughter...



  • Taking a short break in Costa with a Mocha Latte (my latest obsession) and a blog post popping into my head all ready to be typed up on my phone. Gotta love technology!




Hope you had a good week too. For more reasons to be cheerful, head on over to Mummy from the Heart who is hosting this linky for the month of July.


My home town

I've been pondering my nationality again following the UK's vote to leave the European Union.

I've no passport right now, and I guess I was hoping they would become a thing of the past by the time I got to travel again.

Instead it looks as though I'd better make some decisions, and join the queues to get passports for me and my children, or our shopping trips to Newry could come to an end. Let alone any plans to travel further afield.

See I really don't know where I belong anymore.

Today my home town is Dublin, and has been for 26 years, yet I still haven't acquired an Irish accent, and only last month I was asked once again how long I was staying on holidays...

So the home town I'm writing about today is a small market town on the English/Welsh border where I grew up in the 60s and 70s when children still roamed free and computers were the size of small rooms.

The town was built where three rivers meet in a bowl in the hills, so it has its own microclimate and I learned to always ask about flooding whenever I moved house. We lived on a low hill, so walking down town and up home was my life for 18 years.

You walked past the Hospital where my Grandad died and a nurse lanced my swollen finger. Now closed. Past the Girl's Grammar school with its bridge across the road that linked the classrooms with the main school building. The school prefects used to patrol the bridge with elastic bands to press on any pupil who dared to try and cross with long loose hair. Still there, though perhaps the hair police are not! Past the bus stop where the bus failed to stop one time when I was seven.  Past the houses where my friends used to live and up the steep hill to home.

When I was a child, our home backed onto fields and that's where I roamed during the long hot summers. Because they were of course. I would wade through the cow parsley with binoculars swinging round my neck and a sun hat bouncing against my back being Nancy from Swallows and Amazons, or Laura from Little House on the Prairie. In the winter I became Lucy searching for a magical door into Narnia.

The town became my life, once I hit my teens. At its heart is the market square, where stalls were put up 'under the arches' every Friday, and two of the town's 17 pubs squared up to each other across the cobblestones.

The record shop was there too, where you could buy singles for 30p once they dropped out of the top 20. Yes, I was careful with money even then.

The cake shop where I got my first job and acquired a love of Chelsea buns and a work ethic that has stayed with me since.

Behind it, the town castle I never did get around to visiting...

Between the square and the big church is a small narrow street that housed the book shop where I spent my pocket money on Ladybirds every Saturday, the grocer's shop that delivered every week and the tiny cinema where I screamed through Carrie and was inspired by Grease.

Lots of teenage memories from eating chips and curry sauce while shivering in the bus station that's now a supermarket car park to parties on the island in the river behind the weir, or at free houses around the town. Scurrying home from lighted window to lighted window after the street lamps were switched off at midnight.

The magnificent views of the Welsh hills from the town and the gorgeous views of the town from the hills. The annual road race up one of the hills to the monument at the top. The bluebell woods, the flame coloured hill sides in autumn, the sound and sparkle of running water.

The show and the carnival. One of my best friends winning carnival queen. One set of traffic lights. Cruising up and down the main street in my boyfriend's car.

Returning and seeing the changes: the chain stores replacing the family run shops and boutiques, all the road markings and the street furniture. Decent coffee and more choice than chips. I still hungrily follow news of my hometown on line and admire the gorgeous pictures of which I have none!

My parents have died now and our home is sold. I still have friends living in the town, but there's nothing left of my family except a drift of snowdrops in the church yard planted in memory of my mum.

So that was my home town then, and Dublin is my home town now. Yet in many ways I belong in both places. We're all Welsh now, as the BBC commentator said after the superb win by the Welsh team against Belgium in the quarter finals of the Euro 16 tournament. I felt so much pride for the country where I grew up. Nationalism is heartwarming and inclusive at times like that. But the world has seen its ugly side in recent months too. I just want to be a citizen of the world, but post Brexit I'm worried that I will be forced to decide between Ireland and Wales. Please don't make me choose.

I've few photos of my home town, this is the house where my grandparents lived.
I've added this to the #livewhereyoulive linky over at Where Wishes Come From, which inspired this post.


The Bed

It's funny how appearances can be deceptive. I must've looked like a typical yummy mummy sitting in Costa in my work out gear on Monday morning surrounded by shopping bags. Apart from the other bags. The ones under my eyes.

But I digress. The bulging bags were full of cushions and throws from Penneys for my new bed. Wonderful I hear you say. Well in a way. I did enjoy the shopping, I even enjoyed putting the bed together.

But the reason I need one is all about my caring role. Smiley often needs me in the night and despite a baby monitor turned up to full, I'm so tired all the time, that I often fall straight back asleep when she calls me, especially as she generally chatters or laughs instead of crying. Then if I do stay awake I find the trek up and down the stairs in the middle of the night exhausting, and I'm only going to get more tired as I get older. So putting a bed downstairs seemed like a clever plan.

I'd been idly looking at sofa beds on-line, and taking measurements and worrying about what would work in the space, and then I saw it: a fellow blogger with a day bed that she no longer needed. Once I'd waved the tape measure around a bit, I didn't hesitate.

You know me, I have a terrible tendency to say yes to things without thinking them through. But on this occasion, it was the right thing to do and three days later I was heading across the city with my van to collect the partly dismantled bed, all the bits in labelled zip lock bags, so nothing could go wrong. And nothing did.


Okay, okay, so you can still see a label in the photo hanging off one of the cushions, and the throw I bought is not quite big enough, but it'll do for now.

Especially as it is *gasp* in the kitchen.  Yes, I will be becoming a modern day Cinderella, in order to sleep as close to Smiley as possible, but not in the same room.

A couple more things need to happen before I can move downstairs. In the meantime, my eldest and youngest are already using it to lounge on and I am enjoying their company. Who knows, when they see everything I do, they might even offer more help!

I also have a nice corner and I think this bed is going to make our lives better and easier in all sorts of unexpected ways...



Lovely Food and other reasons to be cheerful

It's been a crazy busy week, but mostly in a good way. Blog posts have fallen by the wayside as real life took over.

But I nearly let Smiley down last weekend. I made promises and decisions without really thinking them through. Blame the tiredness. So she missed all the festivals and activities I had planned for her and nearly got caught out without any toileting facilities. Then again she got to enjoy a walk and ladies' lunch on Saturday. That was the first of the lovely food. There was more on Sunday.

You see I promised the car to Angel on Sunday afternoon so she could attend an out of town gymnastic meeting, while she kept her brother and sister company in the morning so I could go for a run with a friend.

That meant that

1. I had no transport to bring Smiley anywhere.

2. I was too tired to walk into town.

Especially as I needed to factor in time to clean the house before the home help arrived. Mad I know, but at least the threat of a visitor makes me clean up, though it does result in the children getting less time and attention from me.

So Sunday afternoon was spent walking around the local area, doing errands, and eventually some lovely food was located in a local coffee shop.


I feel guilty mentioning coffee shops after giving out about them, but I do need occasional pit stops when I'm pushing Smiley around, because no matter how hard I train, it does get tiring. Plus it's good for me to sit down without the weight of all the undone chores sitting on my shoulders, as they do at home.


This café is next to a very busy road, so the drone of traffic is a steady backdrop, but the trees and a cooling breeze make it a relaxing spot to sit outside and watch the world go by. There was plenty of space for a wheelchair outside, but it would be cramped inside and the toilet is only small. Still I think we will be back on another sunny day.

And the week got better.

I had the first almost completely stress free day for more than five years on Monday. I can't begin to explain how much that means. I'd been putting my lack of energy and interest in life down to the menopause, but now I'm thinking that stress is the culprit: I got so much done on Monday, I took things in my stride that normally seem too challenging or not worth bothering about.

Is this a good sign for the future? I have to hope so.

On Wednesday I found the energy to bring Smiley swimming and coped with the stress of trying out a new pool. With the help of a physiotherapist from her old school, all went well, and she absolutely loved it.


So between lovely food and swimming for Smiley plus a day trip for the other two and haircuts for all (see 'Monday' above), I'm polishing up my maternal halo this week. I just need my vitamins now so I can keep this up for the rest of the summer!

Disclosure: I paid for the coffee and cheesecake. I'm just saying nice things about the Lovely Food Company, because it was so lovely...

Head on over to Mummy From The Heart for more reasons to be cheerful.



Tired but cheerful

I'm tired. Tired of being a round-the-clock carer. Tired of fighting for services for my teenagers with additional needs. Tired of worrying about their future and mine. Tired of everything being down to me as a lone parent. Tired of all the extra burdens the state is constantly putting on all households. Tired of feeling guilty. Tired of society's opinion of disability. Tired of what autism has done to my son. Tired of it all.


But I'm cheerful too:


  • Angel made the Sunday dinner - and kept her brother and sister company which meant that I was able to go for a long run.



  • Hanging out the washing in the balmy early morning, with a soft breeze and the birds singing.



  • A trip to Henry Street with Smiley - her favourite place and free to visit!



  • Two lovely people on twitter helped me to overcome my procrastination and start hanging a trellis in the garden. And I surprised myself by finishing the job two days later.



  • An unexpected shopping trip to Dundrum with Angel.



  • Working on a master list of activities for Smiley to prevent us from missing events that happen regularly (and Facebook hides them from me, of course).



  • A new candle to remove unpleasant smells. This one really works and looks nice too.



  • I'm running better than I have for years and managed 11.3 km in 77 minutes at the weekend.



  • A brief but companionable wander round town with my son.



  • A supported swim with Smiley at her old school. Less stress for me, more success for Smiley. I feel the need to write about it too, so watch this space.



  • Sunshine and sea views when I drove home along the coast road.




  • Seeing other special needs parents in the media standing up for the rights of our children, whether under or over 18.  Watching their determination and bravery helps me to keep going.


Head over to Mummy from the Heart for more reasons to be cheerful.


When Respite Worked for my Daughter

PC Warning: this does not correspond with the current narrative about what people with disabilities need. But with so many families in desperate need of respite, I had to write it.


A lot can happen in 13 years. Back in 2003 , there was only one school in North Dublin that catered for children with severe to profound disabilities and it was residential and run by a local order of nuns.

Smiley became one of only three day pupils attending the school and she seemed to love it from the start. Respite was offered but I did not use it until she was 12, and only then because it was suggested she should get used to it in case I ever had to go into hospital or similar.

It worked really well and this is why.

The school and the residential institution were on the same site. At toileting and mealtimes the children went upstairs to the residential bit and the nurses looked after their needs. These nurses were part of the staff, so Smiley got to know them very well, and they got to know her.

When she did go into respite, she just went upstairs after school as well, and stayed over with her friends from her class, looked after by nurses that she knew. No stress, no mistakes, just a break for all of us and a sleepover for her.

This model of respite worked for the rest of the family too.

You could request respite for special events and ask for it in emergencies too. I was never turned down.

Then the school was amalgamated into a major service provider, and they did things differently. That, plus new Health Service policies meaning that all the children who lived above the school were moved into the community, plus cutbacks thanks to austerity, meant that this model of respite was swept away.

Instead Smiley was offered respite at a purpose-built centre with other teenagers, some of whom she had met before. They seemed to enjoy staying there, but while my daughter was happy to be there for a few hours after school, overnight visits resulted in her coming home quite distressed. I tried to find out what the problem was, introduced social stories and had long conversations with the centre, but nothing seemed to help. She is completely non-verbal, so could not tell me what was wrong, but biting me and refusing all the food and drink that she normally loves made it clear that she did not like respite any more. So I had to stop it completely.

Now I am terrified as to how she will cope if I get ill.

So what of the respite run by the nuns?

I understand that all residential care is now seen as bad, and the model that worked for my daughter will never be available again, but perhaps some of the elements that worked for her could be provided in the future? In common with other adults who have complex needs, I think she needs centre based respite with people she knows of a similar age, non-agency staff who know the adults coming for respite and follow their personal care and activity plans, proper facilities for all disabilities, so that even simple - and fun - things like baths are available. Respite to be available regularly so that the young adult anticipates and expects it, and also to be provided when it is needed.

At the very least a respite centre needs to have the equipment that she needs for hoisting and toileting and staff with the time and dedication to  chat to her, entertain her and persevere with her toileting and stretching programmes.

If a small group of elderly nuns could organise this, how come the Health Service with all its resources and committees and strategies not manage something similar?




Summertime

And the livin' is easy. Well easier, anyway.

Post exams and my stress levels are slowly lowering from the danger zone. Things still make me angry and I erupt and spew forth, usually on Twitter. And then the feeling passes. My 2 month bout of severe vertigo seems to be easing. The days are less structured, my son is on holidays and so are the therapists, so fewer appointments. What shall we do today becomes a question that there is actually time to answer. I can't do what I want, but I can do what the children need.

Hopefully the sun will also melt the stress away - though it looks as though I may have to rely on rain washing it away instead. But since my son loves the rain, that may not be such a bad thing.

When the sun did come out, it was glorious..


On top of that, I have some actual reasons to be cheerful too:

A really good day


They do happen. Yesterday was lovely. I went for a group run in the Phoenix Park and ran faster than I have for five years. That sub 60 minute 10K is getting closer.. Afterwards a friend popped in for coffee, and later I collected Angel from work and we went out for a quick dinner and then to the cinema.

I tried edible flowers for the first time!


Smiley's Progress


She used the toilet so well last weekend that she only needed two nappies a day.

She is mostly sleeping through the night in her sleep system that means I often sleep through too, and more importantly it will prevent her from getting serious problem in years to come that could be expensive and unpleasant to fix. It shows what can be done when you have a really good service that provides a timely and personalised approach.

I returned from blood tests this morning to find Smiley and Angel watching Gymnastics together - it would be wonderful if she really likes this sport because then the sisters would share an interest and might spend even more time together. I think they would both enjoy that.

Autism is going better


And I can't say any more on here about that!


For more reasons to be cheerful, head over to Lakes Single Mum.