Thursday, October 23, 2014

A lot about friends

It's the start of a very busy and important week here, and hopefully I will have lots of wonderful reasons to be cheerful to report back next week.  But we're not there yet, so I've scratched around and found a few for today:

  • I got my ears syringed.  It's only taken me about 5 months, but I'm hoping that it will solve a weird problem that I've been having with my ears. 
  • Some very special visitors will be arriving soon.  I can't wait to see them, the kids are looking forward to their arrival too, and it will be an excuse to get out and have a mini staycation for a few days.   And they've told me to get my DIY list written up so they can tackle a few jobs while they're here.  What could be better?
  • Both teenagers have been to school every day so far this week, so my life is back on track for now.
  • My severely disabled daughter was given Botox in her tight leg muscles a couple of weeks ago.   Until this week I didn't see any improvements, but for the last two nights she's slept in her sleep system.  Not only does this help prevent further damage, but she tends to sleep through as well, which is good for both of us.

Over at Striking Mums, Kate is asking questions about labels this week...

1. If I gave you a label and pinned it to you and you were allowed to put just 3 words on it, which would you choose?

Probably "Don't", "Label", and "Me".

2. What labels that others have used about you do you think are spot on?

I've been called many things in my life but the most memorable are probably these:

Smelly
Pretty
Flamboyant
Failure
Writer
Inspirational Mum
Loyal Friend

They all describe different versions of me at different times, but I prefer the ones that stick as a result of my efforts, not because I have just done my job.  So I don't think that adjectives such as inspirational apply at all.  But others do for some reason!

3. Has having a particular label ever got you into trouble or held you back?

All the labels applied to me as a gawky teenager certainly affected my self esteem very badly.  Who knows how my life might have panned out if I still had my childish confidence?  Later a well known Irish Newspaper columnist told me in front of others that I was "not a proper writer".   Presumably because I was not a journalist on a well-known title, even though I did own an NUJ card.  But it still made me doubt myself once again.

4. Does or did one of your labels mark you out as very different from others in your circles?

Being called flamboyant: Until recently, I was often the one in my circle with the most striking make up and clothes.  Sometimes it's very noticeable indeed on old photos!  Back to camouflage again, allowing me to get into character and be the person I wanted to be.

5. Which label are you particularly proud of?

Excluding the whole Mum thing, which is the obvious answer, I would say that I would be most proud of being a loyal friend, partly because my friends are so important to me.  And the reason why would be a whole post in itself.

Click on the logos below for more posts


Ojos World


Kate on thin Ice Striking Mums

Wednesday, October 22, 2014

The future, imagined

It's funny the things that happen on-line, the people you meet and connect with.  People who have the same interests as you, something I never thought possible: I used to keep really quiet about being an adult who watched Dr Who and read The Lord of the Rings, but I don't have to do that any more.  There are also so many people whose politics I like, who worry about the present and think about the future.  And who, like me, have always read books that imagine how our future could look, even though it's usually bleak.

Now that's gone mainstream.  Between Divergent, The Hunger Games and numerous TV series, dystopian futures are having their moment in the sun.  So I got all excited when Jax at Liveotherwise blogged about dystopian fiction, and what was planned as a long comment on her post, grew into something else.

You see books like these are woven into the fabric of my childhood.  There was a bookcase of Penguin classics in our sunny dining room in Wales that I would raid whenever I ran out of library books, which happened a lot.  My Mum would find me hours later curled up in a chair or perched on the branch of a tree entranced by another tale by Nevil Shute or Graham Greene or George Orwell or John Wyndham.  I read them all, and many more.

Some of them wrote about the seedier side of life in the 20th century and some of them imagined a scary future.  These are the ones that I remember most clearly:

1984 and Brave New World.  Everyone knows them, or believes they do, but how often do we stop and think about how they have affected the world around us?  I know that the idea of Big Brother has affected my concerns about privacy.  Or 'obsession' according to my eldest daughter!  Remembering Room 101 means that I won't reveal my deepest darkest fears to anyone.  Just in case.  Whenever I see another reality TV show I think of Brave New World and opiates for the masses.  And I'm guilty of it too.  At the end of another stressful day, I plump for entertainment over education every time.

I found The Handmaids Tale by Margaret Atwood is uncomfortable read but it sticks in my mind and I see echoes of the imagined regime all around us in the increasing control over women in so many societies.  It must have seeped into my subconscious as I've been told it also inspired my fear of losing cash as a currency.

I barely remember The Dispossessed by Ursula K Le Guin, and it wasn't an easy read, but its exploration of the principles of anarchy certainly made me think.

A book that I've mentioned before because it was totally unforgettable is The Ice People by Maggie Gee.  Set in a frozen future where relations between men and women have also broken down, it is both terrifying and funny.  It also reminds me of why both men and women need each other, despite our differences!





And a couple of cheats:

The grandaddy of all dystopian fiction is We by Eugene Zamiatin as recommended here by my friend Kathleen at AutismHerd.  I haven't yet read it, but it's now in the queue on my Kindle App.

Peeking out in the photo above is another book that had a profound effect on me: Nickel and Dimed by Barbara Ehrenreich.  It's not about a dystopian future, it's about life in the US now.  Life when you are poorly paid, have no job security and no healthcare.  It's about people with untreated medical needs, people who work 3 jobs to eat, people who live in cars, and no-one cares.  And now we're seeing it in Europe too.

You could get very depressed after reading all these books, but I choose to see the hope in them, that while there is no such thing as a perfect society or government, there will always be people trying to make things better, always be the hope that things can change, no matter how dystopian the world becomes.


Saturday, October 18, 2014

Unpredictability and Style

I've decided that September is my favourite month of the year.  It's a time for new beginnings and good intentions.  Family life here is unusual at the best of times, but in September at least it was blissfully predictable.  That gave me head space, to do things for me, time to think, solve problems, get things done.  But now unpredictability has crept in again, and every morning I wake up not knowing what the day will bring, or what plans will have to be changed or adjusted.  This is when working on my reasons to be cheerful becomes more important than ever.  And I have a big one for this week!

Road Trip


Really, is there anything better than a road trip during school hours to lift the mood?  Especially when unpredictability meant that it had to be cancelled last week...

So yesterday, as soon as the school buses departed, I headed for Newry with my "sister", as the Sainsbury's check out operator described her.  It's a long time since anyone suggested that I had a sister.  Sadly she isn't, but she is a very good friend and fellow special need mum - we share the same hairstyle but have different accents!

These days Newry is a relaxing place to visit, and some of my overwhelm is gone now that I have most of the birthday, Halloween and Christmas shopping done.  The relief is fantastic.

I came home totally energised, and managed to sort out the teenagers, take in the Tesco delivery, put on a wash, clean the living room and hide all the loot before sitting down with my laptop at 6.

Productive days and happy children are a great start to the weekend.  And there was a bottle of (cheap Northern) wine chilling in the fridge too.

Click on the badge for more reasons to be cheerful hosted this month by Jo at Ojo's World.


Ojos World


Striking Mums


Style is the topic for the Striking Mums this week and how it changes after children.  In many ways that's hard for me as my style would surely have changed in the past 22 years whether I had children or not.  But looking back at photos of me in my 20s, the main difference now is that I wear longer sleeves and hemlines.

Kate on thin Ice Striking Mums


Here are this week's questions that Kate has set on style:

1. Would you describe yourself as stylish? Has your answer to that question changed since becoming a mum?

I am certainly not stylish like a yummy mummy.  Looking down at my jeans, runners and purple T-shirt, my style is more like that of a very mature student.  And I guess it always has been.

Chrissie Hynde was my style icon: I aspired to her "Don't mess with me" look, but often got side tracked.  The black eyeliner though has become an everyday staple, but I couldn't wear anything like black leather to my job in PR.  There I was expected to present a very polished front (not easy for a young Mum!) and I often got it wrong, and still wonder why there are no gentlewomen's outfitters where you could get kitted out office-style, from head to toe.

So my style is comfort and camouflage: comfort to see me through the days, and a camouflage that presents the person I would like to be to the world.

2. Describe a stylish outfit you wear/wore and loved.

That's easy.  There was this little hippy shop in Hereford near where I grew up.  You know the kind.  It sold incense sticks, silver earrings and little beaded purses.  And a few clothes too.  It was there that I found my "thin" dress:  black velvet, slim, over the knee, long sleeves, with a cut out back partly obscured by a big floppy bow.  It was almost impossible to dance in and you had to walk very slowly in it, but I enjoyed every second of wearing it, and my daughter did after me too.

3. How important is it to have an individual sense of style as mum?

That is an individual choice.  But keeping some sense of individual style may help balance the loss of  self-esteem that many women suffer through the demands of motherhood.

4. Are you ever embarrassed about how you look when you are out and about?

Not usually, but there was one memorable night when I had arranged to go to the cinema with my stylish eldest daughter, and I just threw on some runners and an old coat as I'd no time to get changed. She totally cringed and I never made that mistake again.

5. Do you judge people by the clothes they are wearing? Do you feel judged?

I hope that I don't judge people by what they wear, but when you meet someone for the first time it's almost impossible not to look at their style and make assumptions about them, based on their appearance.  When you meet a friend, you may try to work out their mood based on what they are wearing.  Don't they say that we dress for how we feel?  I know I do.  Bright clothes when I'm feeling confident and happy, black when I'm not.

6. Does having a sense of style all of your own help with self-confidence?

Absolutely, see above!

7.. A challenge – put together an Autumn outfit and post a picture of you in it on your blog. If that is too much, you could just photograph the items in the outfit. You can use things you already have or throw caution to the wind and go on a shopping spree.

I tried to take a night time selfie in yesterday's outfit, with a flash where my head should have been.  But I really don't think that you want to see it.  There are a couple of autumn outfits on this post.  And  the little blue number?  I love it nearly as much as my "thin" dress.




Thursday, October 16, 2014

The autumn of austerity?

So #Budget15 has been announced, and it left me pretty cold, in every sense.  There was much talk about recovery, and the end of austerity, and the sacrifices that were imposed on us.  I knew how it would go and the radio was switched off as soon as the Budget speech began.

The end of austerity?

Or just fallen leaves?

Do you see the recovery?  I see it in the city centre shops, in busy restaurants, in the shiny new cars on the road, and the white vans parked up as yet another trophy home gets a revamp.

Yes there is a recovery, but not a real one.  This is a recovery for the lucky few.

I won't believe in it until everything changes.

When I no longer see posts on Facebook from friends who have no money - today - for medicine and heat for a sick child.

When our young people stop leaving.  And start coming back.

When there is a social welfare payment for the self employed who lose their businesses.

When I stop hearing desperate people ringing radio stations because they are in excruciating pain with no date for the operation they need, while operating theatres lie empty.

The saddest thing of all is that this crisis could have been an opportunity.  A chance to sweep away all the existing bureaucracies, to create a fairer society, with a simpler tax and benefits system - perhaps even the introduction of basic income.  Instead there was the usual tinkering around the edges, with increases in some taxes and charges, and reductions in others.  Even sensible suggestions were ignored, such as restoring the respite grant to carers, or introducing a vacant sites tax to encourage more house-building.  It was a Budget for the business lobby groups with a nod to the next election, though most of us laughed at that.

There was so much more that I wanted to say, but family matters are getting in the way.  The Budget could have helped with them too.  But it didn't.

Saturday, October 11, 2014

Mistakes and Achievements

I wrote a post about autism this week, but I think it was a mistake.  Readers assumed that it was about my son even though he wasn't mentioned.  More posts were planned, but it looks as though this blog will have to become a completely autism-free zone, to protect my son now he is a teenager.  That's even though autism is the thread that runs through everything we do as a family.  I still write about it, and it's good to let go of all those feelings, but pressing publish would be better again, and I know that I can't.  It's depressing and I think my blog has suffered.  That's partly why I'm doing more linky posts, they keep me entertained, but perhaps not you...

So today it's all about my reasons to be cheerful and striking mums again, and apologies if some of this is not new.

I am five


I didn't even notice the anniversary, but my blog turned 5 this week.  It was begun with so little thought that it's hard to believe that I am still writing here, and that so many lovely people are still reading.  Thank you.



A successful election


Smiley didn't win, despite all the cakes I sent in to encourage everyone to vote for her!  But she did come second, and she is very proud in her new role.

A tidy house


It's not quite what you think, not everyone would be impressed, but it is a huge improvement.  The gaffe is no longer carpeted with small plastic toys or abandoned clothes.  Nope, my kids are starting to care about their surroundings and do something about it too.

The DIY queen


Well not quite, but I did manage to fix the broken toilet, the one that had been broken all summer...

And also on the toilet theme, my son not only set foot inside a shopping centre at the weekend but also minded Smiley while I made a quick trip to the Ladies.  On my own!

The Postman rang again


This week it was my turn to get excited when the postman rang the doorbell to deliver these.



One new Mia Tui rucksack for when I need to escape, and also.... well all will be revealed later.

And, finally


I also met up with friends for coffee, and for dancing.  Until Friday, it was as good as it gets x

More reasons to be cheerful over at Ojo's World.


Ojos World


Did you see the wonderful Lynda Bellingham on the TV this week?  I rarely watch daytime TV, but I caught this interview, and I could not turn away.  She was so inspiring about living life to the full in the face of terminal cancer.  And it was Lynda that Kate on Thin Ice was thinking of when she came up with this week's questions for her #StrikingMums series:

Kate on thin Ice Striking Mums


1. Tell us about a mum who inspires you.  What are her special qualities?

Six months ago I wrote about Five Women who inspired me.  But the one I remember the most is Everywoman, who could also be EveryMother.  She's not famous, she's not celebrated, but she is the backbone of the family and the local community too.  I wish I could be like her.

2. Are you happy? If not, what is stopping you?

Can anyone be happy all the time?  Is that perhaps too ambitious?  I embrace moments of happiness and hold them tight, like when my children smile at me, or laughing with friends, or singing along to the radio, or pausing to look at the pinky orange clouds as the sun peeks over the chimney tops.

3. What little things that don’t really matter do you allow to get to you?

I've learned to ignore so many things now, but anything involving waiting, such as traffic jams, checkout queues and automated phone systems, they drive me insane.  Other people can upset me too, especially when I worry that I've said the wrong thing.

4. Who do you need to talk to and why are you putting it off?

Oooh, I'll just go and check my "to do" list, there's bound to be a few on there ...

5. How are you inspirational? If you are not quite sure, ask someone close to you and see what they think. We do not always see ourselves as others do.

I am not at all comfortable with the idea that people think I'm inspirational!  It just make me feel like a fraud, because I am the most unlikely person ever to become a carer, and I'm only doing what anyone else would do if they found themselves in the same situation.  Which is: I'm a lone parent to three children, two of whom have different special needs.  I adore my children, but I don't really like life as a carer, so this blog is one of the ways that I try to improve my life and focus on the good things.  Perhaps that's why it's still going after five years...



Friday, October 10, 2014

A message to everyone who thinks they want tax cuts

Do you have a parent in hospital?

A child in school?

A nephew with special needs?

An aunt with depression?

A friend who was burgled?

A neighbour who is homeless?

Tax cuts for you will reduce the help they desperately need. But apparently voters would prefer income tax cuts to improved public services.  If you are currently choosing between putting food on the table or heating your home, then I can understand why that would be your priority, even though any increase in your income is likely to be quite small.  But 44% of you?

As for me, I pay my taxes and no longer claim means tested benefits.  But I'm afraid.  I know that tax cuts won't help the fight to rid the world of Ebola, or help provide a good service for Smiley when she finishes school next summer, or reduce the chaos in A&Es up and down the country.

I know I've said it before, but just remember that one day - if all goes well - you will be old.  And you might be vulnerable, sick or disabled.

And you will be looking for services.

And they might not be there.

Because another generation will have voted for tax cuts.  After all they will be following your example.

And so it goes on.


Wednesday, October 8, 2014

Could it be Pathological Demand Avoidance?

The first in a planned series of posts on what I *think* I know about autism.

When a child is first diagnosed with autism or aspergers, parents read all the well-known text books, are referred to the same websites, and advised to use the standard autism parenting techniques.  With the correct diagnosis, luck, early intervention, support and services, the child will hopefully be helped to achieve his or her full potential.  For most families there are lots of speed bumps and meltdowns along the way, because every child is different, and what works with some, does not work with others, despite the insistence of autism service providers.

But sometimes things are very difficult indeed.  It could be the severity of the autism, challenging behaviour, multiple diagnoses, or any of the other slings and arrows that get thrown at families, who sadly are often blamed when the child's progress doesn't go to plan.  The implication is that the parents are not "strong enough", don't try "hard enough", are too selfish, too selfless, too useless to be able to help their child.

Sometimes it's because they haven't got the right information.

If NOTHING seems to be improving life with your child on the autism spectrum, it might be worth checking out the signs of Pathological Demand Avoidance, a diagnosis that is now being recognised in the UK and Ireland.

Here are some of the signs of PDA:

Demand Avoidance


Were you one of those teenagers who yelled "Don't tell me what to do!"  I certainly was.  Children with PDA are a bit like this, and will find clever and creative ways to avoid doing what they're told.  Tell them to choose between two courses of action and they will find a third....

Imagination


This helps with finding excuses to avoid doing things.  It can also increase anxiety, as they can imagine all the frightening things that can happen, even in their own homes.  They may also have hypochondriac tendencies, especially once they can google symptoms, and nothing but reassurance from someone in a white coat will calm them down.

Destructive Patterns


Once they recognise that telling their children what to do won't work, parents may end up in an exhausting pattern where they make endless suggestions to the child, only for all of them to be rejected, either immediately or later.

Indirect or casual requests may work better.

Control


The need to feel in control is at the heart of PDA.  Control of the environment, control of the emotions of loved ones, anything to make the world a less anxious, more predictable place.  When parents get upset, so does the child, as it's scary, but apparent indifference may lead to cooperation.  Even too much praise can be frightening if it is unusual.

So keeping parents happy may be a priority for them and you can use that to encourage good or helpful behaviour.

Sociability


Children with PDA are often very sociable and charming, they like being around others, and may find it easy to make friends.  But their need to control everything and everyone may mean that these friendships don't last.  For example they may gather a following at the playground because they're great at organising imaginative games.  But the other children may not ask to see your child again.

Structure


Routine and structure may be resisted if it is being imposed by other people.  Mutual agreement may be the only way to achieve everyday things, both at home and in school.

Sanctions and Rewards


Reward charts are a standard behavioural technique for children with autism, and many therapists suggest applying consequences for behaviour that parents decide is undesirable by removing favourite toys or using time out.   Both of these strategies may not work at all with PDA, and just increase levels of anger and resentment.

Obsessions


As well obsessive interests - common when you have a child with autism - PDA children may get obsessed with people.  This may mean that they want to spend as much time as possible with that person, and constantly try to contact them when they are apart, which may annoy the other person and result in them keeping their distance.

Other features


Communications difficulties, up to and including selective mutism; difficult behaviour and volatile moods.

Does any of this sounds familiar?  If so it really is worth finding out more, especially as very different parenting techniques are recommended to help support and reassure children with this condition.


Information on Pathological Demand Avoidance:

National Autistic Society

Steph's Two Girls

Pathological Demand Avoidance Syndrome

PDA Society

PDA Resource