We have ways of making you talk

Our house is not always very sociable.  We have too many ways of getting on the internet, and that's not to mention all the games consoles.  Going out is often not much better.  Faced with grown up conversation my children tend to retreat behind a DS and an iTouch.  Apart from Smiley of course. Tonight she is in respite.  With nothing planned I offered to bring Angel and CD out to dinner at their favourite eatery (of course!).

So off we went, armed with aforementioned DS, iTouch and the iPad.  I wasn't expecting much.  A chance to make CD walk somewhere - pizza works so well as a bribe.  Food cooked, served and cleared by someone else.  But we arrived, sat down, and Angel started to talk.  About school, the summer exams, the summer holidays, tattoos, gymnastics, all the usual stuff.  And before long, we had a three-way conversation going - just like normal people.  Or maybe not.

Giant pizzas were ordered by my children, but luckily leftovers can be taken home.   So guess how Angel prevented DS-playing on the way home?

'We have ways of making you talk'
Here are some samples of the conversation on the way home...and I'm not telling you who said what.

What kind of school do you go to anyway?

Then he came back as a flying Koala.

That's a wonky wall.

I'm the pizza delivery guy.

I haven't been outside all day.

All these resulted in shrieks of laughter.  Draw your own conclusions.

My KISS list for aspie boy's anxiety

My 9-year old son won't go upstairs on his own, even at home.  He follows me to the back door if I go into the garden.  I used to think he was just being difficult and annoying, but now I know that children with Asperger's or Autism are often anxious.  He tells me that he feels lonely and afraid, not that I'll leave him, but of monsters and bogeymen and other vague fears that he cannot put into words.

CD needs help in so many areas: with handwriting, social skills, sensory difficulties, but the two that worry me the most right now are anxiety and anger.  And they seem to be related.  After meltdown month, I persuaded the local services that my son needed help urgently, and so we are now in the system.  Not a lot has happened yet... a meeting with a senior registrar, some forms to complete, and then I was sent an invitation to a workshop on anxiety.  It's rude not to accept help when it is offered, so I went, even though I wasn't expecting much.  And, well, how wrong can you be? 

There was lots of useful information about anxiety, and I came home with the tools to develop a plan that I hope will help.  I now realise that CD's meltdowns are usually about something that has been brewing for some time.  He will have complained about it, but he complains about lots of things.  So I need to listen more carefully to his concerns in future and ask the school to do the same.  That's preventative measure number one.  

We were also told that children can be taught to calm themselves down, and that you should work on this every day.  Four types of activities were mentioned that calm children down and organise their sensory system - not sure what that means, but it was on the handout, which will get a gold frame if it works!

I have to be realistic about what I can manage right now.  So this is it...

My Anxiety KISS* List 

Listen: I am going to do this.

Predictability: All upcoming outings and activities to be posted on his 'Wolf' Calendar.

Exercise: Bouncing on the trampoline, extra-curricular activities (Judo starts today), pushing Smiley, and a personal trainer (Angel): am hoping this will further improve their relationship as well :) 

Deep pressure: I used to think that CD was weird when he asked me to sit on him.  Now I understand.

Slow Rhythmical Movement: Rocking chair and therapy ball...

Chill Out Zone: He has his den.

Relaxation: Breathing exercises at bedtime.  To be practiced every day to help him calm himself when he needs it. 

Choice: I do this already - he even helped choose his new school - but I will try and add more choices.

Social Stories: I still don't quite understand these, *sighs*, and the thought of writing them is a bit scary.  But apparently they can be downloaded from the internet.  And I already have one idea.  Now I just need to know how to use them effectively: what time of the day? How many times to read them?  Somehow I don't see our current bed-time story being replaced by a social story.

Meltdown strategy: Need to work on this one and have a plan ready.  

Time to press print....

I would love some feedback on this!

The madness of maths

Angel is good at maths. It's also her favourite subject in school.  But here's the thing: she may be giving it up.  Or rather giving up 'honours' maths and taking the easier 'pass' option in her final school exams: known as the Leaving Certificate here in Ireland. About 80% of her year are already taking the easier option.

So what happened?

Well she now has the results of the 'mocks'.  She is taking seven subjects, all currently at honours level.  In six subjects she got excellent results.  In one, she didn't.  For the first time in her life she failed an exam - maths - as did many in her class.  Now she's considering transferring to the pass course.  Even though there's every chance she would do well in the honours course in the real exams, because of the way the system works it doesn't seem to make sense to risk failure.

If she fails, she really fails.  All her other results will count for nothing.  Unlike most other subjects, if she fails maths, she fails to go to college.  To get there, she'd have to resit the whole final Leaving Certificate year and all the exams all over again (please tell me she's got this wrong!).  

There's nothing wrong with pass maths, but surely the education system should be encouraging brighter students to take the more difficult course.  I thought that everyone agreed that promoting maths is vital for the future of the Irish economy?  Are the mocks too hard, or were Angel and her friends unlucky?  And if passing a maths exam is essential, why can't pupils be given a conditional offer and resit before the college term starts if they should fail? 

I'm sure that in the next week or two, even more pupils will be choosing pass maths.  For Angel the choice is perverse: it seems that staying with honours maths will put her future plans in doubt.  And she will have the stress and worry about passing and all the extra course-work if she soldiers on.  Even if she gets extra help - known as grinds in Ireland - there is no guarantee that she will succeed.  Choosing pass maths means that she should easily get into her choice of college course, and even as I'm writing this I'm starting to think that it makes sense to make the change.

Except it doesn't make sense, does it?

This is Me Meme

This is me, but first it's about him...Aspie boy, aka CD.  Like many children on the autism spectrum he often seems to be surgically attached to his games consoles.  It really is like an addiction, especially as playing his computer does not always seem to make him happy.  Perhaps he knows this, because he is now asking for me to organise other activities.  Note that the organisation bit is my job *sighs*.  I now have phone numbers for a judo class and athletics training and I really hope he sticks with it this time, as he has started and stopped tennis, Taekwondo, basketball, swimming, gaelic football and probably a few others my sleep-deprived brain cannot recall.  Around the house he is now baking Brownies and sorting laundry: his choice.  He has also sketched two pictures.  After a five year drawing drought this was amazing to me...and the pictures were quite good!  But he's never tried to draw a person before, so I was delighted and a little nervous to be tagged for this meme by the lovely Nova.

These are the Rules:
  • Ask your child to draw a picture of you. It doesn’t matter how old they are…
  • Post the picture on your blog.
  • Call it the ‘This is Me Meme’.
  • Pop over to Tara’s post to add it to her linky too.
  • Then tag some others
So here is CD's effort: Angel calls it my Mr Tumnus look..
And just to balance things out a bit, here is a photo that CD took of me four years ago:

Somehow I think he is going to be a photographer, not an artist!

Finally, I'm like to tag the following:

In defence of teenagers

I love teenagers, especially my fabby 18 year old, Angel.  Perhaps I view her through a rose-tinted lens as my other children have special needs...but then I like her friends as well.  Teenagers can definitely be  bad for your health but now and again they need someone to fight their corner, so who better than a 48-year old Mum who uses embarrassing words and phrases like 'mates', 'hip' and 'pop princesses'?  One other small drawback to my plan: I know very little about teenage boys (no sniggering from my school friends please!)....

So this is why I think teenagers rock (another embarrassing word, obviously):

They're full of energy. Some of it seeps into me.  Which is a good thing.

They're enthusiastic and idealistic, especially about their favourite causes.

They're decorative, and liven up the place as they flit around like brightly coloured butterflies. Once they're through the Goth phase anyway.

They mean what they say and say what they mean, well most of the time. And you can tell when they're lying.

They're brave and willing to try new things....okay I know that involves drink and stuff.

When you have teenagers you can have a conversation that doesn't just involve Pokemon or Britney or Thomas or....(insert as appropriate)

You can start serving grown-food again at family meals.

You have someone who can really help around the house...if you can persuade them.

You have a babysitter.

So there you have it, a few reasons why teenagers are fabulous...and remember, they'll be looking after us when we're old.  Very soon we'll need them more than they need us!

NB: I'm sure I've written some of this before, but I can't find it on my blog!  Apologies if it seems familiar, middle age does terrible stuff to your brain.

Special needs Karaoke and other Teen Tales

It could have been the X-Factor.  A procession of talented teens took turns on the stage to sing their hearts out to Beiber, Jedward and Glee tunes.  They had the style, they had the moves, and they had the banter.  The only difference was that these teenagers have special needs. 

The event was a Karaoke night to mark the re-opening of the Rainbow 13+ Arch Club in a new home for Mondays.  It's a sister club to the Rainbow Junior Arch Club that I'm always plugging.  Smiley loves the Junior Club, but she is the oldest child by several years.  Like any other teenager she needs to hang out with her pals.  She has grown up with many of the young people at the 13+ Club, and they seem to enjoy her company, but she is at a different level: not being able to walk and talk is a bit of a drawback when you're a teenager!  Still she can dance....


She can also do other things: most parental competition is about what their children can do.  In special needs parenting it's often unsaid, but it's about what their children don't do.  But sadly they can develop new problems and bad habits as they grow older, as I've discovered.   We have lots of laughter and smiles in this house, but as she's got older, Smiley has got noisier.  And now she's starting to scream with laughter.   Sometimes my ears hurt.  On her IEP this year, teaching the meaning of 'Shhhh' was top of my wish list.  But so far we've made little progress.  It means I have to be careful where I take her, and avoid anyone who might easily startle.  Chocolate buttons and her iPod do help, but I don't think we'll be going to Mass any time soon.

On the plus side, Smiley's taste in music is changing.  She actually enjoys listening to some of my stuff now :D  Finally, I may be able to banish Britney from the house! 

Thank You

I just wanted to thank everyone who was involved in nominating and shortlisting this blog for the Irish Blog Awards 2011.  I was absolutely thrilled.  Okay, that sounds like a press release.  Actually I was shaking with shock and delight. You've no idea what it meant to me.

Thank you also for all the lovely feedback on Facebook and Twitter.   Support and encouragement came from so many unexpected places.  It just felt amazing to find out how many people enjoy reading my stuff, and then share it as well!

Finally, my thanks to everyone who reads and follows, and especially for all your comments.  I appreciate every single one.  Even though I sometimes forget to reply.

I hope I haven't omitted anyone or anything?  If so I apologise.  Now I need to write....

Going to the Go

Wonderdad - aka my father - has been sick.  This came as a shock to him.  He is never ill, and wears his 80 years very lightly indeed.   

But it all got a bit scary a few weeks ago.  I was on standby to drop everything and dash over to Wales.  Lists were prepared, options considered, friends contacted, and asked very nicely if they could help.  I even checked the airline websites, but of course you'd need a bank loan to get a last minute fare ... and who can get a bank loan these days?

Anyway, after talking to my Dad and brother, I felt that something wasn't right.  Having special needs kids and fighting for services gives you an acute sense of when you're being fobbed off..... I just knew that someone somewhere wasn't bothering to do their job.  It was time to kick up a fuss and say "THIS IS NOT ON" .   To be fair it was my brother in Wales who did most of the kicking.   And with a few investigations and a change of medication, my Dad is much more like his usual self.  I know this because he decided to visit me!

And yes there was another 'Go' Tournament involved.  My Dad first attended the Dublin Go tournament 11 years ago and shook up the Go establishment in Britain and Ireland by winning.   Apparently this raised its profile so much that more than 60 people attended this year, from Ireland and all over Europe.  My Dad did not win this time!

I've never played 'Go' and I was always fascinated that my Dad would choose to play a complex game of strategy to 'relax' after the working day.  Vegetating in front of the telly used to be my preferred option.  But now I notice that many of the older people I find interesting do a lot more than watch telly.  From crosswords, to literature, to toastmasters, to volunteering, they make a real effort to keep their minds active.  

Do you?

(I'm hoping that blogging will work for me...)

How to value the life of a child

Smiley at 6 months, still lots of medical problems!
You can't, would be my reply. Having seen Smiley struggle for life as a tiny 875gms baby, I would've given everything I owned for her to live.  And luckily, she did.  But not everyone thinks like that.  Across the world decisions are taken everyday about whether or not to save the tiniest babies.  And the decisions are informed by the high rate of severe disabilities - like Smiley's - in extremely premature babies, and the cost of caring for them throughout their lives.

I was thinking of this yesterday as I listened to the first ever interview by Riven Vincent who told BBC Radio 5 live's Victoria Derbyshire why she would put her severely disabled child in care.  All she wants is a little more respite, so that she and the rest of her family can get a break.  Currently everything revolves around her daughter Celyn and her 24-hour needs.  

It was the first time I have ever heard a parent talking on the radio about what is really like to care for a child with severe disabilities.  And I realised how lucky I am that Smiley does not have seizures or any other serious medical problems any more.

But then the phone lines were opened and to my absolute shock a woman identified as 'Clare' came on and said that she wasn't happy that so much tax-payer's money was required to look after children like Celyn.  She said that she would 'reject' a child of her own if it was born with severe disabilities, or have an abortion before birth if that was possible. 

There was more, but I don't want to mis-quote her.  I was shocked that she would be allowed to say such things on the BBC.  People with disabilities already suffer from discrimination, prejudice and anti-social behaviour.  These views, broadcast to thousands of people, will just make things worse.  

How many people think like this, I wonder?

Do the 'Clares' of this world not realise that disability can land at anyone's door at any time?  One day many of us will be old, vulnerable and possibly disabled.  Is it too much to hope that we will be looked after and valued as people if we are lucky enough to live a long life?   It was probably a combination of genes, a difficult birth and prematurity that caused Smiley's problems, but should she suffer for her bad luck?  I don't think so.   

Still round the corner there may wait

Did you read The Lord of the Rings too many times as a child?

Did you always want to go around the next corner "just to see"?

Did you always hope, that somewhere, some day you'd find a door into your very own imaginary kingdom where anything is possible?

When I took this picture I was reminded of those days ... as a child I would have walked towards the light, just in case...