What I would tell that frightened new mum of a 26 week premmie baby

I know you're shocked and stunned, I know this seems completely unreal.  I know you think this is a nightmare and you're going to wake up and find that you're still pregnant.



You need to know.  This is real.

That tiny scrap attached to tubes and monitors that ring and beep and flash.  That's your newborn baby.  And yes she's fighting for her life.  But she's going to make it.

Your life is going to change utterly, but in many ways it will be so much better, and you will change too.  You will face challenges that you never expected and find strength that you never knew you had.  I won't lie to you: there will be battles ahead.  With an indifferent state and an uncaring bureaucracy. But you will find help, you will find support, and most of all you will find friends, old friends who stay in your life and new friends in the same situation.

Her suffering in the hospital will end, because she will be stabilised and they will find a combination of medicines to treat her.  Those bitter tears you cried with despair at not knowing how to help your daughter will be replaced with smiles of joy when she smiles at you every morning.  You have no internet to help you, just one book on cerebral palsy, and lots of well-meaning advice.  So you try desperate treatments.  You visit healers who live on remote mountain tops, you travel to the UK with a hired oxygen machine, you visit every type of therapist until you can't take any more disappointment. You look at adults with cerebral palsy and wonder which one your daughter will resemble.  Do not worry, she will look like herself.

Are you even wondering what you want for her on her 16th birthday, right now when all you want is for her to live?

To be happy?
To fulfil her potential?
To be kind and affectionate?
To be patient?
To be sociable?
To enjoy life?
To live the life of a teenager and enjoy music and dancing, shopping and friends?

She is and she will.

Dancing at the Teen Club


It's going to be different, but it's going to be okay.

-----------------------------------

For more about Smiley's early life click this link:

http://www.lookingforbluesky.com/2010/04/smileys-story-part-1-born-too-soon.html

World Prematurity Day is November 17th and there's lots of information about it here:

http://notevena.blogspot.co.uk/2012/10/WPDNovember17.html

Irish families with premature babies can find support here:

http://www.irishprematurebabies.com/


Mini post: Reasons to be cheerful 25.10.12

Reasons to be Cheerful at Mummy from the Heart

I've been set a task in my yoga class to find three reasons to be cheerful and three good things in my life, excluding the obvious stuff - family, friends, food and freedom.  Every week for six weeks.  So I'm going to hook up with Mummy from the Hearts weekly #R2BC linky to make sure that I actually do them!

Three reasons to be cheerful:

1. Smiley's IEP (individual education programme) was such a pleasure to attend.  The staff at her school have nothing but lovely things to say about her, smiling was mentioned a lot, and I heard about some new abilities.  I can't wait to try the Talking Tom Cat App with her at home (apparently she loves it).


2. A school meeting about aspie boy which confirmed that he WILL get the services he need in secondary school next year.  Such a relief.

3. Coffee with an Irish friend that I haven't seen for more than 10 years, because she lives in France.  It was lovely to catch up.

Three good things in my life:

1. The hedge planted by my neighbour that divides our front gardens.  It really brightens up my day whenever I return home.

2. My new €99 electric fire because I can't justify the time or cost of lighting a real fire in the living room every night when I often spend less than an hour in there:


3. The Rainbow Junior Arch Club: even though Smiley is 16 on Monday and the oldest child by far, she still loves going up there, and today is the Halloween party and her birthday party combined.  It's going to be fun :)


I'm on his side, and he's on my side

At least, that's the theory.

We're still trying to sort out the details.  Like the bedtime routine, where my aspie boy says that he is afraid to go to sleep unless I am in the room.  I have been trying to escape for months.   The slow retreat did not work, nor did keeping him up late.  In fact it ended in disaster earlier this week when my back went into spasm following a sudden move after sitting still and silent for almost an hour.  Even he recognised that something had to change.  During the bright safe daylight hours he thought that he could go to sleep on his own.  But once the light faded his night fears came back.  So we agreed on another idea.  A really good one.  He's still staying downstairs with me until late, but then we're both going to sit in his room to read for a while.  He has the book chosen - a Roald Dahl - and so far this means that he is getting to sleep much faster.  And that's a start.

Did you notice that I wrote 'we agreed on'?  I've been thinking about why I do what I do, and then don't do what other people tell me to do.  As the parent of a child with aspergers, I get a lot of parenting advice, but often it doesn't sit well with me.  And I was trying to work out why, and what sort of parent I am.  And then I wondered about other people and what sort of parents they are, and I came up with four different types.  Do you recognise yourself?  Or have I missed out any categories?

...The authoritarian parent tells the child what to do.
...The consensus parent negotiates with the children, and agrees a plan of action.
...The laissez-faire parent lets their children do whatever they want.
...The middle-of-the-road parent mixes up all the other styles.

You don't need me to tell you that I am a consensus parent most of the time.  Some people call me a push-over - I struggle with parenting plans that involve harsh discipline, or the imposition of rules and routines, and I find some child-rearing ideas scary and creepy.

Consensus parenting means that I always assume that my children are doing their best.  I like to think that we work together as a team, that we're on the same side.  I'm the kind of mum who says, "if you help me clear the kitchen, then we'll have time to go to the park".  This worked with Angel - even during the teenage years - but not so well with my son.

 

I've had to add some new ingredients to the parenting mix: patience and calmness.  Oh I had them before, but I didn't have to force them.  Now it seems that I do.

This morning he wanted to go up to the attic before school to get something 'important'.  Foolishly, I suggested that he took a shower first.  His voice started to rise and I could hear the panic setting in.

"But Mum, I might not have time to get it then!"

Alarm bells went off in my head.  What I wanted to do was 'make' him prioritise the shower over the game, as it's taken so long to get to this point.  But then he would just have a meltdown.  So I took some deep breaths and counted.  We went up to the attic together, and then he had his shower.

What makes it all even harder is that the latest thinking is that children with autism are highly tuned in to emotions, so not only should you sound calm, you have to FORCE yourself to be calm inside too.  Performing emotional somersaults in the process.  The advice usually is to feel your feelings, not to file them away in a box with a 'do not open' notice on it.   I'm finding that forcing myself to feel the complete opposite of what I actually feel is very stressful and I can go to pieces when I get a break from him.  The good thing is that it is working for him.  He comes home hyper and goes back to school calm the next day.  And he appreciates what I am doing -  he returned from a school trip with a present for me recently.  His own idea.  

I think he's on my side.

For more help on how to school your feelings during a meltdown, check out this link:

http://www.stressfreekids.com/9771/kids-temper-tantrums-and-meltdowns


Silent Sunday Test Post - please ignore

Achilles Heel

Every child has one, including mine.

And on Wednesday his achilles heel was discovered by another boy in the school.

Mayhem ensued.  And confusion. There was hitting and there was shouting and not just by my son.  But that's boys, right?

I think it was the disrespect to the teaching staff that was the last straw.

He was sent to the principal and came home in a very angry mood, not for the first time this term.  And I tried to calm him down.  Again.  But he's mostly happy in school.  He has told me so.  Yet many evenings are spent calming him down enough so that next morning he agrees to get on the bus and go back in.

On Wednesday he did calm down fairly quickly, but it took its toll on me, and on his big sister.  We had planned to leave the younger two with their (adult) babysitter and go to see a film - a rare Mum and daughter outing - but I didn't think it would be fair on anyone to go out with my son in such a volatile mood.

So we stayed at home.

Now I see that we could have gone, but, at the time, all the tension that I'd been bottling up and smiling through came tumbling out uncontrollably and noisily.  It was not pretty.

The next day there was more confusion as my son had told me that the school wanted me to go in for a meeting.  Apparently that was a misunderstanding.  They told him that he could not go on the school outing on Friday.  This was to be his punishment.  So his response was school refusal.  I got around that by taking him in myself and asking for a meeting with the principal.  This was useful and another meeting is planned next week to look at better ways to help him to calm himself when he goes into meltdown, and some other issues.

So my son ended up spent the morning helping the staff in the school and he enjoyed it...

That wasn't a punishment, he says, that was great!

AND the principal told him to be nicer to his mother, and that has to be good.  Maybe this week's crisis was necessary.  Maybe that lad finding my son's achilles heel was for the best.  I hope so.

Note: I still think that I should stop blogging about my son as he careers towards secondary school, but I haven't quite managed it yet, and he was happy for this to be published x

Reasons to be cheerful: The Blog Awards edition

After three weeks I'm already addicted to yoga, and our teacher is stressing the importance of being grateful, even when life seems difficult.  So here I am again, looking for some Reasons to be Cheerful.  Apart from Smiley's smile of course, and you must be sick of that by now. You're not?  Ok, well here's a little taster then...

My special girl :D

1. Blog Awards Ireland

I was late again.   I mean 30 minutes is enough time to drive the 32 km from Dublin to Naas isn't it? Surely I would have made it if it wasn't for the Saturday Mass traffic?  Anyway I got there and skulked by the wall while the first set of awards were announced, looking longing at the seated gathering, and wondering why I'd bought a ticket, especially as I really don't like going to events full of strangers.  Well usually not.

Then I heard the name of someone I'd been planning to meet.   Marie from Journeying Beyond Breast Cancer deservedly won the best health and well-being blog, and with her help I was able to find a seat with familiar names from twitter and blogging, including @NewFarmerette, @MagnumLady, @Limmster, @Selficience and lovely to meet @foxglovelane.  I was seated next to the very friendly Madeleine who I'd previously met at the launch of Blog Awards Ireland.

I wonder why my badge didn't win :)
It was a very entertaining evening, there was the tension of the awards, good food, great company, and mad moments such as the two minute ceilidh, the badge competition, wondering when we were going to see Susan Boyle, and then at our table we had one marriage proposal, one proposition, and a clutch of awards, none of them for us!  My nerves were at breaking point when they got to my category. Mostly because I was afraid that my name would be called, and then I would trip on the stairs or shake or something else completely mortifying. Once it was done and the winner was announced, then I could relax and enjoy the rest of the evening, especially this:


There may have been dancing later, but at about 10.30pm.  I got the text "when are you coming home, Mum, no rush", and you all know what that means. So off I rushed...

2. My daughter the student

Even though I miss my little girl, 'my daughter, the student' sounds pretty good, and all is going well for her so far this year.  Her main challenge  has been lack of money as traditional student jobs are hard to find right now.  But, thanks to the Olympics, demand for gymnastics classes is huge, and, as a qualified coach, so is she!  And she's been given another class to teach this week :)

3.  My brother has booked another ferry ticket

Yes he's coming over in November from Wales.  Now that I have lost my Mum and Dad, he provides the main support from the family.

4. Affection and help

My son became both affectionate and helpful when he realised that I wasn't feeling so good yesterday evening.  Which was lovely.

More reasons to be cheerful over at Lakes Single Mum.

Charity post for ONE: Motherhood unites us all


Once upon a time mums wore dresses and low heeled shoes.  They looked neat, they stayed home.  They cooked and cleaned and gardened and pushed the pram to the school.  And back again.  Everything else arrived.  There was the bread van, the fish van, the grocer's van.  They didn't drive.  Is that how it was?  Or is my mind playing tricks, just like my memories of summer sunshine.  Was my Mum happy with her life?  I never thought to ask her.  I did want my life as a mother to be different.  And it was.

Now mums in the Western World have so many choices, full-time mum, work at home, career mum.  But so many things are still the same: they love their children, they juggle the demands of life and motherhood and lack of time and even less sleep.  But sometimes life takes the choices away.

Even in Britain and Ireland, many mums and their families have been trapped by the recession.  They see their bright futures ebbing away.  How much worse is it for mums in the Third World?  Yet I bet we'd talk about the same things if we met.  How proud we are of our kids, how we worry about them, how we wonder "why" all the time.  And I'm sure my Mum was the same.

Making things better for our children - and theirs - is a challenge.  But it doesn't always take money to make change happen.

Unlike other charities, ONE is not looking for money. It is a grassroots advocacy and campaigning organization that fights extreme poverty and preventable disease, particularly in Africa, by raising public awareness and pressuring political leaders to support smart and effective policies and programs that are saving lives, helping to put kids in school and improving futures.  ONE wants our voices.  It wants us to join together to put pressure on Governments to implement policies that WILL improve people's lives.  That will make motherhood hopeful not fearful.

Motherhood unites us all.

So sign up now.


ONEMums

Together we are strong.

Together we are loud.

Together our voices can make a difference.

Written to support the recent #OneMums bloggers' trip to Ethiopia where they saw and reported on the work that ONE are doing and how lives are being improved and saved. More over at Seasider In The City.

Too much to do

I feel like a fraud.

Tomorrow I go to the awards ceremony for Blog Awards Ireland as a finalist and do I have a beautifully written post up on the blog?  Nope.  Oh I have plans, and dozens of half written drafts.  But it's not going to happen.  So I'm going to bore you with the reasons why instead...

Today I will...

...Cook, clean and care.

...Work.

...Find out if my bank account has been hacked.  Can three problems in one day be a coincidence?

...Sort out the socket that is now hanging off the wall. Is this dangerous?  I don't even know.

...Buy some strong painkillers for my back.

...Do one of the supermarket shops.

...Take Smiley for a hospital appointment.

...Meet with my son's service providers.

...Straighten my hair so I don't frighten the public.

...Organise a present for a friend of mine.

...Check out the other posts in the BritMums political round-up.

...Clean out my nice empty bin so those pesky maggots don't come back.

And these are the things that won't get done...

...Write the post that I promised to do in support of the #OneMums charity trip to Ethiopia.

... Apply for rebates on medical and travel expenses.

...Get multiple copies of the private reports I had to get done for my son as only one has been provided by the State.  And that was two years ago.

...Do my back exercises.

...Repair the cracks in the firebox so I can light a fire.

...Finish filling in the cracks in the inside window frame upstairs.

...Find out about archery lessons for my son.  Narnia and The Hunger Games have a lot to answer for.

...Start organising Smiley's Sweet Sixteen.  Well I've done the poster at least.

...Remove the new toilet seat from it's packaging and fit it.  A week is too long for it to be sitting in the hall.

...Bleed the radiators and find out how to do it again.

...Order new driving licence.

...Fix the wonky blind in the attic.

And that's just today 

PS I'm writing this while eating my breakfast, supervising Smiley, holding for the bank, and speaking calmly to my son. ..

REVIEW: Rock of Ages on DVD

It sounded like a really good idea: watch the new Rock of Ages DVD with a posse of twitter pals.  Get the kids in bed and enjoy a midweek movie break.  Tuesday 9th October was the chosen date and the box arrived with just 24 hours to go.  This is what was in it.

To wear:


To hold:


To watch:


I was late to the twitter party - what's new - so perhaps it is not so surprisingly that I didn't really get into the film either.  The story has a few interwoven plot lines: boy meets girl, he becomes rock star, they fall out.  Rock God Tom Cruise returns to his roots to play one last gig at failing venue run by old friends, Alec Baldwin and side kick Russell Brand.   Crusading Mayor's wife plans hand bagging of venue to rid town of vice,  and you can guess how it ends.  And you'll just have to watch it all to find out.  You'll have to, as I didn't: about half way through the film my son decided that he was tired...

I was hoping for The Rose 2.  What I got was Glee meets Spinal Tap.  It wasn't really for me, but lots of other partygoers enjoyed it:


Watch it with wine and a few friends.  Laugh at Tom Cruise's tattoos, sing along to Def Leppard, Foreigner, Journey, Poison, REO Speedwagon and Twisted Sister, and switch off your inner critic and you should have an enjoyable evening!

The facts bit:

This film has been rated PG-13 by the MPAA for sexual content, suggestive dancing, some heavy drinking, and language.  It's available now on DVD.

The photos:

Smiley and I both tried out the stuff to get us in the party mood:

I don't think she was impressed!

Failed Jagger impression

And a couple of stills I shot from the film..

The Rock of Ages Vice Squad
The Rock of Ages Rock God

Yoga, Aspergers and remembering my Mum

Share photos on twitter with Twitpic

Yoga books used to turn up in odd places in my childhood home.  My Mum was a yoga teacher, and she was always studying and planning new classes, always trying to improve the experience for her pupils.  Yet despite her style and elegance, I associated yoga with floaty skirts, big hair, unshaven legs and jangly earrings on women of a certain age.  I even went to one of her yoga classes.  She was great, but yoga seemed a very slow activity to a teenager like me who lived life at about 100 miles an hour.  I decided that yoga was not for me.  But as I've got older, more and more of my friends are eulogising yoga, and I began to wonder if I should give it another try.  It crossed my mind again when my son came home with his one bonus mark so far this term: for attending a yoga class.  "It was good," he said.

Still, I was surprised when I found myself circling around a strange school car park last Tuesday, looking for a space.  A woman I've only met once had included me in a group text about the yoga class and, as I was not feeling calm, trying it out seemed to be a good plan.

There were no signs for the class, and only the presence of anther punter self-consciously clutching a yoga mat by the door told me that I must be in the right place.

The women arrives in ones and twos, filled in forms, and arranged the room under the supervision of the teacher - who is a great ad for yoga!

There was no whale music, no scary clothes or designer water.  It was just friendly and relaxing.  And it did achieve something.  I was trapped, but in a good way.  I couldn't get at my 'to do' list.  It wasn't like a night out or a run that I could cut short and rush back, because the longer I stay away from the house, the more things pile up.  I could hardly disturb the relaxing ladies and clamber over them to get to the door, now could I?  I just had to stay where I was, do what I was told, and relax.

So now I'm counting down the hours till the next class.  And I must resist the temptation to get the mat beside the door...

Silent Sunday


Inspired by:

Why I've given up the fight for child benefit

I'm leaving PACUB, the group set up to defend child benefit.

Its supporters no longer represent my views.

You see I believe in universal benefits, paid for by taxes.

I think that everyone should pay taxes, even those on social welfare, so that they care about Government policy.

But everyone needs to be able to afford to pay tax, so I believe in the concept of a basic income.

I hate means testing.  I think it's expensive, demeaning and always unfair on some children.

I'm sick of hearing about why Michael O'Leary does not need child benefit.  It is not for him, it is for his kids.  Perhaps he gives very little to his wife for the kids?   PACUB knows that that happens in some families.

Child benefit has been the only payment to all families that is there for them no matter what happens or how their circumstances change.

I know this because - together with DCA for my special girl - it was the only income I had at first when my contract job finished.   It may be the only income for women and children fleeing domestic violence.  Without it people may die.

But the government and their media lackeys seem to have won.  They have divided us into little groups, all trying to fight our own corner and protect our patch.   Those who shout the loudest - and vote - are protected.

I'm sick of fighting.

Now there's talk about a two tier child benefit or giving parents food stamps instead of benefits.  I can't even go there.  Do you give your children vouchers for Easons or Smiths or Borders instead of pocket money?

And to the people who say that there should be NO child benefit, let me remind you of this:

Our children are YOUR future too.