Looking for Blue Sky

The very last post and a new blog

noreply@blogger.com (C O'Reilly) — Sun, 14 Aug 2016 17:47:00 +0000

Yes it is.

After my public meltdown on here a couple of weeks ago, I found that I still needed to blog, but I couldn't do it here.

I think that autism has a lot to do with that: the early years of this blog largely became the story of how this family struggled to adapt to my son's challenges post diagnosis. Then I vowed not to write about it anymore, but it kept creeping into my posts, as it is still completely central to family life and how we live it.

Autism became the elephant in the room on here.

I can't write about it, but I can't write without it.

So I've started a new blog. It's a personal blog and it will feature Smiley, but there will be no mention at all of autism.

If you're still interested, please contact me at stilllookingforbluesky@gmail.com and I will give you the details.

Less blogging, more caring

noreply@blogger.com (C O'Reilly) — Mon, 01 Aug 2016 14:53:00 +0000

The last ever 'Poor Me' post on here, I promise...

Another blogging friend announces she's quitting and this blog sinks again in the tots 100 blogging index. I seem to have lost my way, lost my confidence and even lost my interest in writing. Nor can I keep up in with the relentless changes to blogging and social media.

I still jot down ideas, thoughts and even whole paragraphs, but rarely have the urge to write it up. I just wonder if anyone will be interested in the now very crowded blogosphere. Unless I promote it to death of course and that's not my style.

I still like doing the reasons to be cheerful posts each week as well as writing about Netflix, and there will always be a place on here for others to tell their stories, even anonymously.

But that might be all, because sometimes this blog feels like yet another pressure in my life, especially the need to be positive and find the 'blue sky'.

I know I'm becoming bitter and I know that's not attractive, and I need to leave it off the blog. Yet this used to be a place where I could offload so I can be cheerful in real life. Now I have to offload somewhere else.

My blogging also means that people assumer that I must have lots of free time, especially as I'm no longer in paid employment, when the truth is that I am very rarely alone at home, even on 'school' days. Normally one of my children is at home and needs my attention. And the things I do? Like blogging, Facebooking, watching Netflix, jogging, the gym? The main reason I do them is to prop up my mental, emotional and physical health so I can get up tomorrow and do it all again.

If you asked me what I want to do, I wouldn't have a clue, I no longer know what I like or what I want.

I told you I was bitter!!!!

Anyway, there will be no more misery on this blog, just the good stuff or coverage of specific issues. Or there may be nothing at all. Less blogging, and a lot more caring. We shall see.

Surviving the summer with Netflix

noreply@blogger.com (C O'Reilly) — Fri, 29 Jul 2016 09:48:00 +0000

It's good to have a distraction when your summer does not involve sun, sea and sandcastles, especially when you wish it did, and Netflix fits the bill perfectly. It's the silly season in the media, with endless repeats, stand in presenters, stupid surveys and sunburn stories filling the airwaves and papers. Not good and not a great way to entertain those of us stuck at home, whether we're trying to relax, or even while doing the chores. But Netflix is, and here's what we've been watching:

Stranger Things

No don't stop reading: I know that everyone is praising this series and writing about it, but perhaps, like me, you thought you wouldn't like it? I saw the trailers and publicity and wrote it off as another mild horror/psychological suspense series that would be too scary for me. Yes I'm a big baby, but I don't need anything else to keep me awake at night!

But with so many recommendations I ended up giving it a try and despite being put off by the opening scene, I was soon drawn in to the story, which begins properly as four young friends meet up for a table top gaming session some time in the 1980s and one of them disappears on the way home.

This is the most significant event to have happened in this sleepy Indiana town in living memory and gradually most of the townspeople get drawn in to the drama, for good or bad, as more and more strange things start to happen.

My memories will be of a distraught mother who is desperate to be believed, while those around her think she's losing her mind, resourceful friends, an upright cop, evil middle aged people in suits (a metaphor methinks?), superbiking, the loneliness of Middle America that reminded me of Winter's Bone, a film I adored, and Joy Division's Atmosphere capturing the mood of one of the saddest scenes...

Not to be missed, and there's already talk about a second series too.

Good Witch

I was prepared to dislike this show with its cheesy smiles, cliched lines and tired stereotypes, but actually I enjoyed it, and best of all it stars 'Mike' from Desperate Housewives. Remember him?

The Good Witch lives in the Grey House, a B&B, in another small American town. She doesn't have a wand or mix up potions, she just has the intuition or foresight to engineer events to help people with their lives. She does have an irritating tendency to speak in inspirational quotes and a bias against coffee though, while two of the teenagers irritated me greatly when they used the word 'cretin' as an insult, surely that is no longer acceptable?

Anyway a divorced doctor moves in next door and his son makes friends with her daughter. Teenage rebellion ensues, parents struggle to cope, and a succession of guests at the Grey House with a variety of problems keep the stories moving along.

I found it a heartwarming easy watch.

Rwby

My teenage son recommends this show, in fact he loves it so much that we're now watching it together. It's a US series inspired by Japanese anime, the production values (as my son would say) are not the best and there are plenty of plot holes, but it does have certain charm, and if you have a child on the spectrum, they will surely recognise themselves in some of the characters. A parent could get a good insight into the way their child thinks by watching it too, I would think.

The story? Well in the first episode a bunch of oddly assorted teenagers are set various tasks to enter a school for warriors, there's some impressive fighting scenes, but why do so many of the female characters resemble extras from sleazy rap videos? Subsequent episodes have featured more of the same, plus working through the usual crop of teenage problems.

Between

(Words provided by my 23 year old daughter who recommends this series)

Between is a sic fi drama starring Jennette McCurdy. It is set in the small town of Pretty Lake, where there is a mysterious disease outbreak that kills everyone over 22. Due to the outbreak the government quarantines the entire town and the series focuses on how these kids survive and fend for themselves.

Jennette McCurdy plays Wiley, the pregnant teenage daughter of the minister. Jesse Carere plays Adam, a 'hacker' who views the disease outbreak as a conspiracy from the beginning. Other featured characters include a convict, a rich kid a farmer who has just enlisted in the army and the town outsiders.

Soon we see the town descend into chaos as food runs low, young kids are left to mind themselves and people turn against each other.

Upcoming series

I'm especially looking forward to season two of the South American drug series Narcos (release date TBA) and also the techno-paranoia series Black Mirror, which is new to Netflix and will be available on October 21st.

Whatever you watch, have a great summer!

Disclosure: I have received free Netflix streaming, a streaming device and an iPad as part of my membership of the Netflix Stream Team, plus a few summer goodies too! But all words and opinions in this post are my own.

Reasons to be cheerful 29.7.16

noreply@blogger.com (C O'Reilly) — Thu, 28 Jul 2016 09:10:00 +0000

We're back on the rollercoaster here, with hopeful ups and devastating downs, but at least the ups mean I have some reasons to be cheerful for this week.

The Sewing Machine

Through the power of blogging and social media, I have been offered a sewing machine, thanks to Helen at The Busy Mamas. Mending and making used to be a part of my life, and needs to be again: no-one makes clothes that fit Smiley perfectly and my hand sewn alterations do not work that well. Her leggings regularly split too, as they are not designed to hold adult nappies, and a machine sewn seam will surely last longer. Hopefully I will be able to design and make items that you cannot buy in the shops, such as the adult bed bumper I need to stop her side bars scraping lumps out of the plaster. And yes she needs side bars to stop her rolling out. I might even get out my mother's old sewing book that I've kept for years 'just in case'....

Beach Wheelchairs

Doing a clear out of the attic and finding Angel's old wetsuit - just in time for Smiley to try out the new disability beach wheelchairs now available at beaches in the Dublin area.

Running with my daughter

It was toe in the water stuff. Just 2.5K, but running (slowly) while pushing an adult in an adult buggy certainly felt like a good workout! I will definitely do more of this. I enjoyed it, she enjoyed it, we both got medals, and I didn't have to feel guilty for leaving her at the weekend. So it's a win win. Now I just need to find some more fun runs that allow wheelchairs to take part.

Cake

One of Angel's friends popping over and bringing cake! On the same day that Angel insisted on bringing back Prosecco from the supermarket because "you only live once, Mum".

Trips Out

A lovely visit to Malahide Castle with my son. It looked pretty even in the rain.

Head on over to Mummy from the Heart for the reasons to be cheerful linky, and have a great week.

The end of the heatwave

noreply@blogger.com (C O'Reilly) — Fri, 22 Jul 2016 09:07:00 +0000

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

noreply@blogger.com (C O'Reilly) — Wed, 20 Jul 2016 13:16:00 +0000

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

noreply@blogger.com (C O'Reilly) — Mon, 18 Jul 2016 20:26:00 +0000

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

noreply@blogger.com (C O'Reilly) — Thu, 14 Jul 2016 16:27:00 +0000

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

noreply@blogger.com (C O'Reilly) — Fri, 08 Jul 2016 09:00:00 +0000

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

noreply@blogger.com (C O'Reilly) — Mon, 04 Jul 2016 08:28:00 +0000

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

noreply@blogger.com (C O'Reilly) — Fri, 01 Jul 2016 10:01:00 +0000

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.

SIX by M.M. Vaughan BOOK REVIEW

noreply@blogger.com (C O'Reilly) — Wed, 29 Jun 2016 07:35:00 +0000

Disclosure: I was given a free copy of SIX by Alma books to review, but all opinions are my own.

Imagine losing your mum, being uprooted from your safe and secure family life in the UK and having to start afresh in a new country and a new school where bullies lurk around every corner. This is what happens to Parker, the main character in the young adult sci-fi novel, SIX, by M.M. Vaughan.

Then your Dad disappears too and you have to find him, with the help of a hi-tech device he invented to help the family communicate with your sister Emma who is deaf. As the plot unfolds, Parker and Emma realise that their Dad, Dr Banks, was involved in a huge 'scientific' breakthrough that could change everything for the world.

As well as a compelling plot with lots of twist and turns and revelations, there's thoughtful touches too, like the children's anxieties over some of the more outlandish technology they find they have to use to get back to their Dad. And I liked this quote too:

A friend of Parker's parents had once mentioned that if you want to know what a person is really like, take a look at their bedroom.

But I totally fell in love with the book in chapter 20, when the significance of the book's title is revealed...

You'll just have to read it to find out.

When a Netflix series ends...

noreply@blogger.com (C O'Reilly) — Tue, 28 Jun 2016 08:32:00 +0000

Finishing a Netflix series can feel like the end of a friendship: A really good series that you look forward to at the end of the day, when your chores are done. So it's like a mini bereavement when you watch the credits on the last show.

The next night you're probably in denial as you frantically check google to see if there is another series not yet on Netflix. Anger when you find out there isn't. You desperately check Netflix again. Become depressed as you wonder how you will fill your evenings now that your beloved series has finished. And finally acceptance that you cannot change the situation, usually helped by finding something new to watch. And that is exactly what happened here.

The perfect antidote to Netflix grief? A new series of course. Especially one that makes you laugh like Grace and Frankie. I like that it's about older women (and men) even though I'm not that old. I'm sure you've seen it if you have Netflix. If you don't, it's another good reason to sign up. And again, there's no magic involved, except in the acting, of course.

To me it's like an old fashioned warm hearted family comedy, and there's not many of those on terrestrial TV these days. The ones the critics like always seem to be sharp and pointy and clever and a bit dull. Not Grace and Frankie though. Series two was more serious in parts and there were also moments of toe curling embarrassment and a few scenes when you might want to push the children out of the room, especially in the last episode, but mostly it was very, very funny.

And then it was over, and the grief returned!

But this time Netflix found something for me, and it is perfect.

Falling Skies

Weaver leads the 2nd Mass after another alien attack

As you *may* be able to guess from the picture, it's another series set in a post apocalyptic future, complete with cringy aliens, dodgy science, clichéd story lines, social commentary and poorly disguised political messages (though I totally enjoyed the dig at Goldman Sachs). I'm loving it, of course!

It's about a small group of survivors following an alien invasion. Our hero is a History professor and father of three sons, one of whom is missing. Tom Mason joins the 2nd Massachusetts Militia Regiment, known as the 2nd Mass, which becomes like a family, one that loses many members, gets dispersed, faces unimaginable horrors and dangers, but never loses loyalty to the group.

But the real star of the series is not the handsome history professor, but the grizzled, grumpy and sick old soldier Colonel Weaver, who has to dig deep to keep up the spirits of this motley band of survivors.

The series is not exactly plausible, but it is easy viewing and emotional at times too, and moments of inspiration when Mason and Weaver have to put aside their own fears and find words to comfort and encourage everyone else. If you like that sort of thing, I'd definitely recommend this show.

For all the TV shows and films I should have mentioned, check out the Netflix news over at Bumbles of Rice.

Disclosure: I have received free Netflix streaming, a streaming device and an iPad as part of my membership of the Netflix Stream Team. All words and opinions in this post are my own.

Grated Apple Cup Cakes: RECIPE

noreply@blogger.com (C O'Reilly) — Mon, 27 Jun 2016 07:52:00 +0000

I collect recipes like this for when I enthusiastically stock up on something healthy - apples, in this case - only to discover them still in the bag looking sad and tired a few weeks later,

Between that and the random feeding habits of teenagers, it always seems to be my job to try and create something from all the leftovers in the fridge (I hate food waste).

Sunday was dull and rainy in Ireland, and I felt too exhausted and busy to manage a trip out with Smiley, so baking was a good alternative to letting her watch videos all day. These are quick and easy to make - maybe a bit slower if you give a spoon to the kids!

After I posted a picture on Instagram, my friend Carol @ Jennas Flowers asked for the recipe: so here it is (and there's a printable version below too).

Grated Apple Cup Cakes

(makes about 12)

Ingredients

4oz/100gm butter
6oz/150gm brown sugar
1 egg
1/2 tsp vanilla essence
6oz/150gm self raising flour
2 eating apples.

Method

Put oven on at 170 degrees Centigrade.
Melt the butter in a large pan.
Turn the heat off.
Stir the sugar into the butter.
Whisk the egg and stir in, together with the vanilla essence.
Sieve in the flour and fold in.
Peel, quarter and grate the apples and fold in.
Spoon the mixture into about 12 cup cake cases, placed in a muffin tray
Put tray in oven and bake cup cakes for about 25 minutes.
Remove cup cakes from muffin tray and cool on a wire rack (or eat!).

I think they'd be extra nice with a crunchy topping of maybe demerara sugar and finely chopped walnuts, but I haven't tried it yet. Reduce the amount of sugar if you want a healthier version.

print recipe

Grated Apple Cup Cakes

by June-27-2016

Ingredients

4oz/100gm butter
6oz/150gm brown sugar
1 egg
1/2 tsp vanilla essence
6oz/150gm self raising flour
2 eating apples

Instructions

Put oven on at 170 degrees Centigrade. Melt the butter in a large pan. Turn the heat off. Stir the sugar into the butter.Whisk the egg and stir in, together with the vanilla essence. Sieve in the flour and fold in. Peel, quarter and grate the apples and fold in. Spoon the mixture into about 12 cup cake cases. placed in a muffin tray Put tray in oven and bake cup cakes for about 25 minutes. Remove cup cakes from muffin tray and cool on a wire rack.

Details

Prep time: 10 mins Cook time: 25 mins Total time: 35 mins Yield: 12

Getting organised and other reasons to be cheerful

noreply@blogger.com (C O'Reilly) — Sat, 25 Jun 2016 08:02:00 +0000

I must've tried everything at this stage: As a teenager I used little brightly coloured handbag diaries, in my 20s it was filofaxes in different sizes, some of which I still have, but I never fell madly in love with them. Owning one was expensive, especially the refills, which were never configured quite right for me. And there were lots of things that didn't fit neatly into the format. Nor could you customise a filofax. You needed a special hole punch, special paper, and it all cost ££££s.

My Mum used to buy the same Boots diary every year and sit down religiously on January 1st and fill in all the birthdays and other important dates. I tried that but it just didn't work for me. It was cheap and cheerful, but not portable or flexible enough.

I toyed with calendar apps for a few years, but (shhh) they are so slow and fiddly to use, putting in codes here and opening this and typing that, when you could just scribble down a note in a few seconds. But since I had my phone I was never without it, a definite plus.

Recently I've been reading about Bullet Journals like this one from Midlife Single Mum, which are beautiful diary organisers that you design yourself. And I've successfully borrowed the idea of monthly "to do" lists (though my list for June is worryingly up to 49 items with very few ticked off!) . They look gorgeous, but also a bit too complicated and intimidating for me.

What I needed was a system that was easy to use, flexible and used nothing that couldn't be bought on the weekly supermarket shop. So I found some free downloadable diary pages on the internet, printed them out on A4 paper and stuffed them in an ordinary lever arch folder. I can write in an appointment or event and add in the letter, or the event details printed off the internet. Okay so I can't easily bring it around with me, but I am home-based, so that doesn't really matter too much.

And my reason to be cheerful? I've just printed out July to December and am happily filling in all the important dates...

And there's more:

A lovely and unexpected lunch out with a friend on my birthday.

And another invitation for lunch from a walking group that rotates lunch and I dropped out because I just couldn't mange the catering bit! They've asked me back anyway. I was in floods of course, as usual when people are kind.

The exams are finally over and my son can relax for the summer. Hooray!

More reasons to be cheerful over at Lakes Single Mum.

Mum may die without respite for profoundly disabled son

noreply@blogger.com (C O'Reilly) — Thu, 23 Jun 2016 10:49:00 +0000

What do you have to do to get respite for a severely intellectually disabled young adult? One Mum believes that the Irish Health Service (HSE) would let her die before they help her family. She lives in Kerry and worked in the transport sector until she was floored by serious illness. She and her husband also care for their 19 year old son who has a profound intellectual disability, yet now when they need respite after she almost died in hospital, none is available.

This is her story**:

"My son Ben is a lovely, happy, friendly young man. But there is a lot of work involved in caring for him. And we used to have help. We got weekly respite for our son from age of 5 to 18 and spent 2 years having case conferences with the service providers and the health service to plan his future. We wanted a smooth transition to adult services for him. But when he turned 18 in March of 2015 he was just chucked out of his service. We have no idea why our son wasn't kept on. He never caused them any trouble. And neither did we. We had a very good working relationship."

Since then they been trying to cope with their son's difficulties without any outside help.

"Ben has very little language and is completely incontinent. He is also tall and strong. He does a lot of high pitched screaming and flapping, but we are lucky in that he doesn't get violent (the odd outburst with his little brother so they can't be left unsupervised). He also likes to break things and throw things. Its not malicious, its just a fascination he has. At least one morning a week we will wake up to him, his bedroom and anywhere he has sat, covered in excrement. I find that very hard."

Their lives got a lot harder when Nicola ended up in hospital with a serious illness at the end of February.

"I spent 2 1/2 weeks on life support. My family were told to make funeral arrangements. I am 39! When I woke I was told I would spend 2 months in hospital recuperating, but I had to leave after nine days, because nobody would provide help with our son. We made an emergency case to the HSE and it took them two months to arrange a meeting."

But there was bad news at the meeting.

"Our emergency respite application was rejected due to lack of funding. It also became clear that the majority of emergency cases stay on the emergency list for a minimum of 6 months. Meantime my life is in danger. If I don't take care of myself, with proper rest and recuperation, we don't know what will happen. I will never have full lung capacity again. Also I have problems with memory, coordination, balance and my hair is falling out. My husband asked today what constitutes a genuine emergency and we were told that we would be getting respite if I died. So I just need to die for my son's respite services to be reinstated......it's just unimaginable."

Can you imagine being told you have to die to get help? But not getting help may cause you to die? The HSE and the new Government needs to act now to end scandals like this, and stop ruining people's lives. And don't use the lack of funding excuse, the money is there, it's just being spent on the wrong things.

** Based on Facebook posts and printed here with her permission to try and help raise publicity for her situation.

6 things to do before I'm 60

noreply@blogger.com (C O'Reilly) — Mon, 20 Jun 2016 08:48:00 +0000

Yet another birthday as I hurtle into my mid 50s. It's shocking how fast they come around and how much less they mean. The only constant now is how much less time is ahead of me and the need to make every day count.

There will few presents - I can't think of anything I want or need that can be neatly wrapped into a small package and tied with a bow. The big things I desperately want - health and happiness for my family and friends and their loved ones - sometimes seem like an impossible dream. For myself I'd like a measure of contentment and acceptance of my situation, but without losing the drive to change things, make things better, make a difference while I still can.

Today I will indulge myself. Just a small bit. Angel made a few suggestions: getting my hair done, eating out, but none of them appealed. I was surprised to find that the only thing I really want to do today is write...

And what of the future? I've 6 years until another landmark birthday: If I followed tradition I guess I should be compiling a list of 60 things to do before I'm 60. But I'm thinking that might be a tad ambitious, considering that I can find it hard to find the time and energy to even do basic things like cut my nails...

So I've come up with 6 things to do before I'm 60 instead:

Go on a date - I did a bit of internet dating back in 2007, but I found it dull, time consuming and depressing. Since then I've been too busy to even think about it. There has to be a better way.

Portraits - I would like to brave enough to ask people I see in the street if I can take their photo. I'm always spotting people that I want to photograph and then kicking myself as I let them walk by...

Special needs - I want to have a long term support and service in place for Smiley by the time I'm 60 and for my son to be living independently.

Dublin Women's Mini Marathon - This race has a special place in my heart, but I want to compete as a runner, not a walker. I'm determined to get fit enough to meet the qualifying time once again.

Tattoo - Yes I've left it very late and I know it smacks of a mid life crisis, but the great thing about being middle aged is that you don't care as much about what other people think. My biggest problem is what design to choose.

The Camino - for years I planned to walk the Camino for my 60th, but I don't think that will be possible, so I'm hoping to walk the Sligo Camino instead! I've never been to Co. Sligo and since it's in Ireland it just might be doable.

So that's it, I'd better get started. Only six years to go...

An Afternoon in Temple Bar

noreply@blogger.com (C O'Reilly) — Sun, 19 Jun 2016 20:11:00 +0000

Temple Bar. It used to be an alternative arty place to hang out. Now it's a drunken debauched den of iniquity where the streets heave with rivers of beer and staggering stag parties. Or so the narrative goes.

The decision to venture into Temple Bar on a Saturday afternoon after an Ireland match was surely a moment of complete madness. Especially with a young disabled adult in tow. But there you go.

There was drink, a lot of drink. And a lot of excitement too. Smiley fed off the atmosphere and radiated it back to the happy revellers. The young people in Meeting House Square weren't staring at my daughter, they were smiling with her. Perhaps it was the beer goggles or perhaps the new generation really are going to be a lot more inclusive. Let's hope so. Because we had a great afternoon pottering around and I'm sure we will be back again soon.

On the street

Cute or creepy? You decide.

Loved this flower stall in the Saturday market.

One of several Hen Parties.

Watching this kept us amused for ages, and I really wanted to give it a try, not for the money, just for the craic.

I think this guy was showing off (but he didn't win)

A reluctant Hen also has a go..

Temptation

Lookin' good!

Loving it all :)

Especially this...

With And Without You (A Day with Smiley)

noreply@blogger.com (C O'Reilly) — Fri, 17 Jun 2016 19:08:00 +0000

If I'm lucky I get to sleep until 5.30am when the alarm goes off. Sometimes I think that Smiley can hear it too, because I hear her calling on the baby monitor at the same time. Today was one of those days: she wanted her wet nappy changed, and then I sat with her and had a quick coffee while the water heated up. I left her with the telly on, had a quick shower and dressed, ready for the day.

At 6.40 her home help arrives and between us we get her showered, which involves lots of logistics and hoisting and mopping - so I wash the whole extension floor at the same time. While her home help gets her dressed, I dig out and iron the clothes, and find her leg splints and put everything within reach.

Once she's hoisted into her chair, it's breakfast time and that gives me chance to help my other children while she is helped to eat and drink as needed. After the home help leaves I have a quick breakfast and a peek at Facebook and twitter on the laptop. Smiley enjoys watching it and joins in the chats with me and her siblings.

Then I pack her bag and hoist her on and off the toilet and get her ready in her chair for when the bus arrives at about 9.15 am to bring her to her (centre-based) programme.

I can fill the next 6 or so hours in a number of ways: spending time with the other children, shopping, cleaning or maintaining the house, administration, appointments for any of us, lobbying or advocacy for special needs or autism, or even some self maintenance so I can keep doing this!

It passes quickly and when she arrives home she has a drink and a small snack while I chat to her about her day and unpack her bag.

Then there's more toileting, followed by floor time: I encourage her to lie on her right side first to stretch the tight muscles in her neck -- with the help of Britney and a bit of massage and tickling, she does very well. Then her left side with the addition of a different splint - she can relax like this for a while, but I often sit nearby on the computer before heading across to the sink to start three different dinners.

Hopefully we'll all be fed by 7.30pm and then I'll clean up the kitchen to the sound of Smiley giggling and the Tweenies singing - and I'll join in with the dancing too. Some days it's the Bananas or the Rug Rats - the same shows she's been watching for more than 15 years. I do try different videos and shows, but she usually objects, at least when she's at home.

Finally we start the bed time routine: the washing, teeth cleaning, toileting, hoisting, pyjamaring, and a long stretching session to relax her muscles so that she can tolerate her sleep system, which is essential to prevent her body getting twisted. Then it's lights out and soft music on.

Sometimes I have to pop back and move her around until she is comfortable, but usually she is asleep by half past nine. And sometimes she sleeps all night.

So I am without her for a number of hours during the day, but that is an essential break for both of us! It's full on when she is with me, and I wouldn't have it any other way, I love it when she is happy and I love making her happy. But she needs more than just me and a care worker or two in her life. I believe that she needs the company of other young people, just as she would if she was in college or working at Google, and she loves company, there is no doubt about that. Apparently the activity she most enjoyed this week was watching one of the Euro 16 matches with a gang from her adult programme...

So please can someone help me ensure that the good life that she has right now can continue. Would you deprive her of that?

Reasons to be cheerful 16.6.16

noreply@blogger.com (C O'Reilly) — Thu, 16 Jun 2016 11:24:00 +0000

I'm still here. But I've been very busy elsewhere, supporting my son through his exams and publicly advocating for my daughter - something that makes me very uncomfortable but it has to be done, and so far it has been well received. The exams are also going much better than expected, and there's only two more to go. So that's my first reason to be cheerful for this week. Here's the rest:

A nature photography challenge that provided the perfect level of distraction - here's one shot that didn't make the cut.

Smiley won a competition for a Hairy Baby apron via Saucepan Kids. She wears aprons when attempting to self-feed and when helping with the baking. I think she likes this one!

Yes the sunshine was wonderful, but it involved a lot of watering, which is now being handled by the Irish weather. As a result, things are happening in the garden, seeds are germinating, most of my pot plants are looking healthy, and the weeds are not winning. There may be smug photos soon...

The Junior Cert examination survival kit for Mums: I have it on good authority that this particular red wine from Lidl never causes hangovers, though I've yet to test that theory thoroughly!

I went to a few hours of the Inclusion Ireland conference for people with disabilities and their families and attended a fantastic workshop on severe and complex needs where I actually met other similar families and heard similar stories, it was very comforting. And a bit empowering too.

After weeks and weeks of feeling ill, I *may* be on the mend. This could also be connected with my first reason to be cheerful as nearly everything seems to be connected to my stress levels. Hopefully this is the start of life getting better again.

Lots more reasons to be cheerful over at Lakes Single Mum.

Bloom, Bray and Boats

noreply@blogger.com (C O'Reilly) — Tue, 07 Jun 2016 09:42:00 +0000

Some background: In case you're wondering why I did all this on a weekend when I was feeling very ill and when my son was counting down the days to the start of his state exams this week: I decided that I could be happy and ill with Smiley in the sunshine or miserable and ill and under pressure at home. So with the help of Angel, we made sure that my son had company at all times and Smiley and I got out. Also in the back of my mind is the new Capacity Act and its implications that Smiley could be removed from my care if I can't prove in Court that I am giving her a good enough 'Good Life.'

Bloom

I was prepared to dislike Bloom intensely. An artificial festival about plants that I expected to be expensive, crowded and beset by traffic jams. But I gave in a few years ago when I was stuck in Dublin on a sunny Bank Holiday weekend and I needed an alternative to the Henry Street shops for Smiley. As always I was anxious that first time, wondering if it would be disability friendly or more stressful that I could tolerate. But I needn't have worried, it always seems well organised and they look after disability fairly well - free parking close to the event, no queues for the disabled toilets, and enough space to get around on the (bumpy) paths. It has so much to offer too: a wonderful music tent (where we spend most of our time), lots of places to buy coffee and cake, an amazing food market, playground, even a science display, and of course all the show gardens and lots and lots of opportunities to buy plants (we bypassed that section since my fingers tend to be more brown than green).

The Breast Cancer awareness garden

Our favourite coffee place

My favourite garden

Smiley enjoying the music tent

The fabulous food market

Bray

On Sunday we went to the Vintage Car Rally in Bray Co. Wicklow, with a lot of great help and advice from Twitter about accessibility, disabled parking space and toilets. All are there, even on the sea front, but they fill up on busy sunny days, like this one. We ended up parking in a housing estate and walking into town. I must've sweated pounds.

So why vintage cars? I used to be a car nut until I had to get a wheelchair accessible vehicle, and occasionally I still take an interest. Besides a good day out was promised. That we had.

It's all in the pose!

The best ice cream ever?

My first car. Almost.

I want this one, Mum!

Boats

I hate to say it, but I'm always a bit disappointed by this event.

Perhaps because I'd rather be doing the Dublin Women's Mini Marathon that is on at the same time - they won't let me push Smiley round, even though she'd love it. I've asked. But it got us out for a couple of hours and the ships looked fabulous in the sunshine.

I'm not sure how I'm going to top this next weekend...

On being a small person and trying to change things

noreply@blogger.com (C O'Reilly) — Sat, 04 Jun 2016 10:21:00 +0000

I wasn't going to do any reasons to be cheerful this week. There's been good days, but you've probably seen the photos of those. There's been bad days, but the less said about them the better, and there's been some dull days too, and what can I possibly say about them?

The sun has been shining and I'm making progress on the garden even while the the pall of exam stress hangs heavily over the house. Which is why I make sure to get out of it every day.

On the Saturday I went to a First Holy Communion Party with Smiley. Lots of cake was eaten and reminiscing about the PACUB days when a small group of Mums took on the Government in 2009 over proposed child benefit cuts, and probably made a difference too. It was one of the best summers of the past ten years, and whenever I wonder if the endless battling for my daughter and son is ever going to get them what they need, I remember how a small number of people really can change things (and apologies for another Lord of the Ring reference for those who are not fans, they just pop into my head, I really can't help it...)

And I remembered it again on the Monday when I attended a seminar on personal budgets for people with disabilities, to help me to understand better what Smiley and I will face in the future. I even managed to ask a question about the impact of changes to adult services on those with severe disabilities. And the new Minister for Disabilities listened, which was a start. Speaking out in public is not something I am comfortable with - I was shaking so much that I couldn't stand up when they passed the microphone to me. But perhaps it will get easier if I keep doing it. I'll probably have to. Someone needs to, and it looks like that person will have to be me.

A couple of other reasons to be cheerful:

Smiley feeding herself, and retrieving her pink toy from the pocket of her buggy. Both are difficult for her to do.

Fitting in two runs and a trip to the gym, when I managed the whole circuit for the first time in weeks (it's getting really hard now, but I'm seeing real improvements).

Hope you had a good week xx

For all those teens with aspergers who are being failed by the education system

noreply@blogger.com (C O'Reilly) — Fri, 03 Jun 2016 09:04:00 +0000

It's not your fault!

Many pupils with special needs are being failed by the system.

Secondary schools and the state examination system are not designed to cater for the needs of teenagers with aspergers syndrome and anxiety. Especially as they all have different needs, because they are all individuals.

Yesterday Renata Blower from Just Bring the Chocolate summed it up on the BBC

And this is for my son today, although I know he probably won't ever see it:

Billy Bragg - To have or to have not

"The system has failed, you don't fail yourself."

Carers need to have fun too

noreply@blogger.com (C O'Reilly) — Tue, 31 May 2016 08:52:00 +0000

Well we do, especially if the sun is shining and you don't have to spend all day indoors. Of course I probably should have been doing something useful...

I could've been the perfect autism parent and spent the afternoon ~~telling~~, ~~bribing~~, encouraging and negotiating with my son to study and do all the other things I like to see him do every day. But that would have made us both stressed and miserable.

I could've been the perfect housewife and spent the afternoon cleaning. I can't deny the place needs it. Badly.

I could've been the responsible neighbour and tidied the front garden. But that would've been boring for Smiley too.

I could've been the organised housekeeper and done the big Tesco shop with Smiley - which she might have enjoyed - but luckily Angel volunteered.

I could've indulged myself and gone to beach, leaving the kids with their big sister. But I didn't.

I could've tackled the pile of paperwork, but that would have been so depressing.

These are the choices that I make every day as a carer. What to focus on? What to leave undone? Who to prioritise? And because Smiley is in a proper day service right now, I can indulge both her and myself at the weekends and concentrate on doing things that we both enjoy, knowing there will be some spare time during the week to catch up on chores.

On Sunday the gorgeous weather made the decision easy. No way could I stay cooped up in the house, and Smiley deserved an afternoon out, so I abandoned the chores and the responsibilities and pushed her up the hill to the Rockin' Road Festival in aid of local charity Childvision.

How to describe it? Vaguely 50s themed with lots of costumes, old cars and bikes and plenty of rock 'n roll on stage too. There was the Dad dancing, Mum dancing, a granny singing 'psychological torture' to a young toddler in her arms. Some of the language was not child friendly but the atmosphere was. It was accessible and inclusive - Smiley wasn't the only child or adult with special needs at the event.

And it was sunny...

An almost perfect weekend

noreply@blogger.com (C O'Reilly) — Thu, 26 May 2016 17:32:00 +0000

As time creeps inexorably towards the summer state exams, life here feels like a car crash in slow motion, but rewind to last weekend and things were very different.

The sun was shining for a start, and the pressure was off too. Much as I love Smiley's Club, now that it's over for the summer, it was great to let her relax with her favourite videos on Saturday afternoon. Especially as she was still struggling with a head cold. Earlier we had been in town bringing my son to his drama group, so she did get out of the house. And so did I!

Smiley also went to sleep early, and that meant I got to make my son happy by watching an entire film with him: Avengers Assemble, in case you're interested.

On Sunday my weather App told me to head out early if I wanted to miss the forecast rain, so we did, and Smiley and I spent a lovely couple of hours pottering around Dublin's Grafton Street, listening to the buskers, taking photos of the sights and laughing at the antics of the ducks and pigeons in St Stephen's Green.

The only thing missing from the weekend was my first born: Angel was away in Limerick judging a gymnastics completion. Apart from that, it was almost perfect.

I'm linking this up with Reasons to be Cheerful, hosted this month by Michelle Twin Mum.