Protected: Shaking off the ashes of 2016 with no regrets

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Festive Cheer

Bye bye stress, hello joy and festive cheer.

Well that was the plan for Christmas anyway. Special needs stress had led to illness, had led to more stress. But during the Christmas break everything is on hold, offices will be closed and emails will go unanswered, so I put the ‘to do’ list away until 2017. I was hoping to put my over active brain on hold as well, but that didn’t go completely to plan. But the alarm clock got switched off for 9 days. Something I was looking forward to for weeks: it doesn’t necessarily mean a lie on, but it at least there is the chance of one, even if a lie on here usually means about 7.30 am. Good thing I’m both an Owl and a Lark, and I’ve banked some sleep already.

Also you do know these posts are mainly for me, don’t you? And maybe to encourage others to do the same, as I think I would drown under all the sh*t without this regular look at the good stuff. So here we go with the rest of it…

A neighbour telling me I have the loveliest tree on the road because the coloured lights, tinsel and handmade decorations remind her of her childhood. And two unexpected and absolutely wonderful presents to put under it: a hamper of delicious goodies from my student lodger and his family, and a homemade and iced Christmas Cake from a lovely woman who helps with my disabled daughter: chocolate cake of course, as it’s B’s favourite.

temmys-christmas-cake-2016-christmas-tree

Heading to a shopping centre with B to do some last minute Christmas shopping and entertain her for the afternoon and discovering that a lot of other people had the same idea. I nearly turned back due to the queues as they make me very uncomfortable and anxious. But I didn’t, and my daughter really enjoyed pottering around the shops and trying on clothes. There was more queuing to leave, but on the way home I was even more grateful that we hadn’t gone to the nearby Blanchardstown Shopping Centre which took people over an hour trying to leave according to radio reports.

B watching and enjoying Christmas Day telly with the family, instead of just YouTube. She even danced along to the carol service on the BBC.

The return of the children on Christmas Day and dinner with the three people I love most in the world.

My increased confidence in showering B. One day I may no longer need help in the mornings, especially when my son grows up, and then my 5.30 starts will hopefully end.

After three weeks of trying to coordinate diaries, I finally got to bring eldest and youngest to see Star Wars. Unless you’re a lone parent special needs mum you probably won’t appreciate how embarrassingly excited I was at the prospect of 2 hours and 13 minutes with no interruptions and no demands, and with entertainment provided too 😁

I’m reading a book for the first time in six months, and it’s all thanks to Netflix. A reader of my latest Netflix post suggested I try the books on which a series I raved about was based. And I have, and so far so good, I think I’m going to stick with it.

Hope you had a good Christmas too and for more cheerful posts, head over to Lakes Single Mum.

 

Out of this world

Some have said that this year’s Christmas offerings on Netflix are as thin as grandma’s gravy. But that’s not true if you’re a fan of science fiction/fantasy. And for anyone who got the gift of Netflix for Christmas, I’ve a full listing of my favourites at the end of this post.

And since TV and radio is mainly about repeats at this time of year, I would be bored stupid without Netflix, and my daytime chores have often been accompanied by catching up with the final episodes of Once Upon A Time and the Vampire Diaries.

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These are the two shows that have given me something to look forward to once the chores are done, and my disabled daughter is in bed with her daily physio finished.

Netflix, #streamteam, The Expanse, 3, .png

3%

Clearly a hunger games spin off, but then I got to thinking – societies have always had rites of passage to mark the end of childhood and The Process in 3% is just another one. In this one the premis is that only 3% of the population have the merit to live in comfort and young people have to undergo this rite of passage to be chosen. There were some unexpected and uncomfortable moments that I really enjoyed. The only jarring thing for me was that despite growing up in poverty as children, all the process candidates had perfect teeth!

Expanse

Another science fiction space series based on the novels by James Corey and set in a future where there is an uneasy truce between Earth, Mars and Ceres, a  working space station where the labour force is controlled through rationing of air and water. Then an ice freighter gets a distress call and everything changes.

It’s a complex story that can be hard to follow with a large cast of characters, but despite that I grew to love it. It’s stuffed full of anti heroes. One in a hat. I’ve always liked men in hats. And lots of desperate misunderstood people, trying to do the right thing and often getting it wrong.

More of this please!

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Other new programmes I still plan to watch this Christmas holiday include:

Sense8 Christmas Special – recommended by my 24 year old daughter who has watched it twice already.

Travelers.

OA – though I’m hearing mixed reports of this one..

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Other science fiction/fantasy series I have enjoyed over the past 2 1/2 years:

Stranger Things

Frequency

Falling Skies

Orphan Black

Continuum

Terra Nova

Luke Cage

Daredevil

Jessica Jones

Disclosure – I am a member of the Netflix stream team, which gives me free Netflix and other nice stuff. But all the opinions and recommendations in this post are my own, or written by my children.

 

Carers’ lives matter, Disabled lives matter, and Words matter too

It’s been a good week for family carers, with two substantial articles in the Irish Examiner newspaper about the desperately pressing issues that face them: lack of rights, recognition, supports and services, and the uncertain future due to current policies that could mean even more work, with even less support. Appalling that it took the death of an 11 year old disabled girl, Emily Barut, for this coverage to happen.

But it’s been a bad week for the disability community, due to the way these articles were written.

And the growing rift between disabled people and carers got bigger as the need for disabled rights was set against the need for carers’ rights.

I am a mother of three, and a carer of two, and I am not disabled. I only have a rough idea of how these articles might affect disabled people, so I can only comment in a generalised way. But I felt very uncomfortable reading both of them for lots of reasons, despite all the excellent points about what needs to change for carers.

For a start, I’d like at least three words to be banned from articles like these: burden, suffering and misery. Can you imagine how disabled people must feel to be regarded as a burden to their carers, someone who causes them suffering and misery? Feeling you’re a burden can affect someone’s self esteem and their mental health. I’ve seen it.

It is not your loved one’s fault if you find it difficult to care for them.

Nor is it your fault.

It’s just the way it is. Some people adapt well to the role and work of being a carer. Some don’t, and I don’t see why that’s a problem. Not everyone is cut out to be a teacher, or a politician or a plumber either! Not everyone has the skills, or the personality to cope. But carers usually don’t choose their caring role, it is thrust upon them. They have no choice. So please can we ban talk of parents and carers as evil and potential murderers of their loved ones. And please stop telling carers, “it’s not about you”. We should have an expectation of a good life of our choosing, just like the people for whom we provide care.

And individuals and families should not have to care alone for children and adults with disabilities. They should be supported by the community. Invited not excluded. Welcomed, not ignored.

As for the State? In a caring society, the State would take the lead in providing rights and services for disabled people and for their carers.

So why can’t we work together to make this happen?

Because carers lives matter, disabled lives matter and words matter too, so let’s learn from each other, because our lives and destinies are often linked together, so please can we respect each others needs and campaign together to make a better future for us all. Together we are stronger, so let’s close the rift that has been growing between us, and not open it further.

 

Here are the two articles

http://www.irishexaminer.com/viewpoints/columnists/fergus-finlay/we-need-to-help-little-birds-with-broken-wings-like-emily-fly-again-435930.html

http://www.irishexaminer.com/viewpoints/columnists/victoria-white/its-shameful-that-no-one-cares-about-the-carers-at-christmas-436230.html

Life, Hydra and reasons to be cheerful

I’m beginning to think that life resembles Hydra, because as soon as I head off one problem, another grows in its place. And the older I get, that faster they seem to grow and multiply!

hydra

But perhaps Hydra has an opposite, for good things. I’d love to know…

In the meantime, I’ve dug out some good things from the past week:

I got offered another social media job. Obviously I can’t take anything on at the moment until the future of my children is more certain, but it felt good to be asked.

I attended a focus group run by the Irish Health Service on respite, and met some amazing people including Johanne Powell who made such a memorable appearance on TV recently.

Everyone was where they were supposed to be. Every single day.

All the overseas parcels and all the Christmas cards have been written and posted.

It’s mild. I hate cold weather and I dislike hot weather. Fifteen degrees is absolutely perfect.

My daughter B has been enjoying playing with the balloons she was given when we met a friend for coffee last Saturday. Yes, at 20 years old, floor time is still important when you’re stuck in a wheelchair for most of the day, and balloons are always fascinating when you have a severe intellectual disability.

smiley-b-balloons-severe-disability

With independent women ringing in my ears, I took part in the annual battle of Mum versus the Christmas Tree. Me with a drill, the tree with a very tough trunk. And I won again.

drilling-the-christmas-tree

As an aside, couldn’t they teach basic DIY skills in school alongside home economics?

Christmas Tree 2016,.png
Okay so it’s only small, but it’s STRAIGHT for once!

Later that evening the children decorated the tree, in their own inimitable style. Shades of Miss Christmas Tree 2016 with that silver sash perhaps? Still, one less job for me.

christmas-tree-2016-silver-sash-tinsel

Head over to Lakes Single Mum for more reasons to be cheerful and have a great week.

When you don’t realise what the problem is

I’m one of those people who can’t always identify what is upsetting or worrying me.

Something I thought was just a niggle turned out to be much more than that when I finally managed to overcome it this week.

I live in a big old house with lots of steps – only the well insulated extension is wheelchair friendly, so that’s where my severely disabled daughter spends most of her time when she is at home.

The worst time is at night, when I have to leave her downstairs and go up to bed. She seems so vulnerable down there on her own, even with an impressive array of alarms and locks and a baby monitor. But I was finding it increasingly difficult to get out of bed into a freezing cold room and stumble down two flights of stairs in the middle of the night to find out what she needed. Sometimes I’d do it over and over again. So I usually went to bed feeling stressed, slept with one ear permanently glued to the baby monitor and woke up stressed too.

Finally this week it proved possible to sleep downstairs, just the other side of the partition from her, and in the warmest room in the house.

So on Tuesday morning I woke up refreshed and calmer than I have in a long time. Of course life had other plans and I then got hit with three bits of bad news that day. But I coped, and that’s an improvement too.

Other reasons to be cheerful for this week:

B’s bus driver bringing in my bins for me. A wonderful random act of kindness that he does regularly.

The father of my lodger installing my new oven – so that Christmas can actually happen here (the old one gave up half way through baking a birthday cake in October).

My eldest daughter bringing chocolate home for me after a difficult day.

The GP telling me I didn’t need another scope just a higher dose of medicine, and it’s working too. Terrified of how I’d manage the scope with no respite.

A long overdue coffee meet up with a friend, and B came too.

A successful protest outside the Irish Parliament with my daughter and other disability advocates, but sadly very little media coverage.

disability-protest-leinster-house-december-2016

Publishing a great post by a disability advocate about Ireland’s failure to ratify the UN Convention on the Rights of People with disabilities on another blog to widen its readership. It was a great to help and feel useful and competent!

Bringing B to visit a community disability hub in a nearby town – a base from where a small number of people with disabilities can access community life, which is supposed to replace day services in Ireland. I also got the chance to properly meet an autism mum who I’ve always admired. More on the hub when I have time to write about it properly.

Coffee and cheesecake outside last Sunday with B.

I have decided that my Christmas present to myself will be to uncancel my cancelled gym membership. In my defence I did look at gyms that appeared to be cheaper and would be quicker to get to, but they were mostly grim and not cheaper if I was to get the help I need to keep going. This helped too ha ha!

Milon, ICON gym, .png

More Reasons to be Cheerful over at Lakes Single Mum who is hosting this linky for December.

 

An Early Christmas Present From Netflix For Everyone

Disclosure – I am a member of the Netflix stream team, which gives me free Netflix and other nice stuff. But all the opinions and recommendations in this post are my own, or written by my children.

As you must’ve worked out by now, I’m a huge fan of Netflix for the busy carer who may be on duty and interrupted at any time of the day or night. With Netflix, you can watch your favourite show when you want, and go back to it when you can. It’s almost perfect, except when the broadband goes down.

During the summer months our broadband is pretty reliable, but the closer we get to Christmas, the more downtime we experience. Very frustrating when you finally get the chance to relax for an hour.

So I was thrilled to read that Netflix has given everyone an early Christmas present with the ability to download content onto smart phones and tablets. This will be a game changer for me, and will bring joy to many parents who can now easily download favourite videos for their children. I can think of so many situations when that will reduce stress for everyone, particularly special needs kids who spend so much time waiting, whether in A&E, in bed, in meetings, on transport, when a bit of entertainment will make the time pass much more pleasantly for everyone!

And Netflix seems to have organised a Christmas present just for me too, with the science fiction series Travelers streaming on Netflix UK from December 23rd. The travelers in the series go back in time and inhabit people in the 21st century to try and save the world from a grim future. Can’t. Wait.

travellers-netflix-streamteam

As a family we’ve also been watching a few shows, and these are our current recommendations:

Shooter

(Words from my eldest daughter who loves anything service or spy related)

This series is about a sniper and it based on a movie of the same name. Following retirement Bob Lee Swagger is persuaded to return to service because of a threat to the US President from a notorious Russian operative, and Swagger is the one person who should be able to figure out what this guy will do. But nothing is as it seems and Swagger soon finds himself in more trouble than he has ever been before.

Frequency

This science fiction series is about Detective Raimy Sullivan who discovers she can talk to her dead detective father in 1996 via an old ham radio. By sharing information they try to change events and catch a notorious serial killer known as The Nightingale, who was involved in the deaths of numerous women including Sullivan’s Mum. There are unforeseen and tragic consequences and lots of twists and turns – sometimes so many that it is hard to keep track, but I think it’s worth trying..

Shetland

A departure for me: Shetland is an old style cop show, that’s like a sub-Arctic Bergerac with Goretex and granite. I’ve always been interested in the psychological effects on people of living in remote communities, social isolation surrounded by nature that’s beautiful but deadly too, the long dark nights, and the good and bad of tight knit communities. All are explored here, including what teenagers think of living on an island that’s miles from anywhere…

Dad: “We’ve got the sky and the sea and razorbills and kittiwakes, what more do you want?”

Daughter: “Top Shop.”

netflix-shetland-streamteam

 

Happy viewing!