Thursday, January 29, 2015

Reasons to be cheerful 29.1.15

We will ignore the elephant in the room - same elephant, same room - and focus on the good things instead.  So here are my reasons to be cheerful for this week.

Back in the old routine

Despite everything, I am getting out.  I met a friend for coffee and made a short appearance at my yoga and dance classes.  And I began a 6 week autism parenting course run by my son's service provider.  It's going to be interesting, and a bit emotional too I think, but hopefully I'll learn something useful.

From broken to fixed

There was a major panic mid week when our lovely new shower decided to stop working.  Cue phone calls to Kingston-upon-Hull, Mayo, Kildare and Dublin, while I gathered receipts from the builder and pleaded severe disabilities and a lovely man came round at 8pm tonight and sorted it all out.  Am feeling competent for once.


He thought I needed coffee, so he offered and he made it perfectly.


Even though things are stupidly busy, I decided that today was the perfect time to try Smiley out with the iComm App again.  And just look how good she is at making choices!

Responsible Adults

Arrived home from a walk with my son to hear the unexpected sound of the hoover.  Could we have a cleaning fairy?  Nope, it was Angel decluttering and cleaning her room.  Without being asked.

New books to read

Darkmouth, the book du jour, arrived on my Kindle App today and I can't wait to get stuck in.  And two of my friends have books coming out shortly.  Details to follow as events unfold...

It was one of those weeks when I thought I would have no reasons to be cheerful, but actually I've got quite an impressive list.  Well, I think so anyway.

Reasons to be Cheerful

Wednesday, January 28, 2015

Starting back with Striking Mums

My path through life has meandered all over the place as I've stumbled through rough patches and hit my head on low hanging branches, ending up uncertain and unsure of what I'm doing and why.

If this sounds like you, then why not join Kate on Thin Ice for her Striking Mums club.  You don't need to be a blogger, you just need to want to feel better about yourself and your life.  Which I do.

To take part, Kate throws out a few questions each week:

Striking Mums questions for the week beginning 25.1.15

1.  When I was young I was too busy to have hopes and dreams.  They were for other people.  I just wanted to party and do anything else that gave me an adrenaline rush, from driving fast cars to jumping out of planes.  I never stopped, at least in my memory: I hated staying in, I always wanted to be out somewhere, whether that was the pub, Wimbledon, the cinema, running on the hills, or just wandering around the streets of London.  "Live fast, die young" was the motto I adopted, and I was as surprised as anyone else to find myself still alive aged 30.  Not just that, but I was married with my first child on the way.

If I met that crazy young wan now, she would probably not recognise me at all and would look at my life with horror.  Many older people say they still feel the same as they did at 21.  I certainly don't. Not that I regret those years, they make me smile looking back at all the memories.   And they are a reminder that the old me is in there buried deep, and sometimes I need to bring her out, dust her down and have some fun.

2.  I grab time for myself wherever I can.  Feeling guilty about it is still a problem.  Because I'm a 24/7 carer, I feel I should be working 24/7, which is obviously nonsense, but I still can't entirely escape the feeling that I am cheating my children when I do something for myself.  It's not too hard to squeeze in some 'me' time if the teenagers go to school or their big sister is here to babysit, but it could get more difficult if she leaves home this summer.   I'm determined to find alternative help, if only there weren't so many other things that needed organising and sorting out, like the nappies that didn't arrive yesterday, and the shower that broke last night.  Not to mention the weekly autism course that I am attending.

3.  I'm actually happier with my looks now I'm older: once you don't want to see me in a bikini.  My hair is okay a lot of the time, my skin is good, and I'm only slightly overweight.  I'm over 50, so no-one cares anyway, apart from my children, and they are happy so long as I don't make any radical changes.  Or worse, embarrass them.

4.  My goals for 2015? Well I wrote about them already.  I'm making progress with them all, with the last one proving oddly easy to manage...

Kate on thin Ice Striking Mums

Monday, January 26, 2015

Do you enjoy giving up things?

There's lots of ways of dividing up the world.  Coffee or tea?  The Beatles or The Rolling Stones? Cats or Dogs? Soaps or Sci Fi?  And then there are people who get a sense of control over their lives when they give up things, while others just feel the deprivation.  Guess which camp I belong to...

And as it's January everyone seems to be in the middle of giving up things. If they haven't given up giving up of course.  But not me.  But perhaps I should.

It's something I've pondered in recent years as the menopause hit me like an out of control bus and my body began to rebel against decades of questionable nutrition and a few very bad habits.

I gave up smoking easily enough.  I woke one morning feeling terrible and decided on the spot that they had to go.  That was 11 years ago and I haven't smoked one single solitary ciggie since.

I've almost given up meat.  Not for moral or health reasons but because a lump of red meat sits in my stomach for hours like a giant lump of, well, meat.   And then there's the maggot problem with the leftovers that I've written about before.  No, once it's just the two of us here, I think I will only eat meat and fish when we're out and it's someone else's responsibility to clean up...

So I eat a mainly plant-based diet.  That's good, right?  Porridge or home-made muesli for breakfast, something veggie for lunch that I made myself, and probably toast for tea.  Looks very healthy doesn't it?

It is, until you add in the other bits.  The four cups of coffee, the chunks of cheese, maybe a sliver of cake, a few squares of dark chocolate, perhaps a glass of wine, and a handful of cashew nuts  Basically lots and lots of delicious things.  I don't binge eat, but I do love my treats.  They break up the day, and reward me for getting to bedtime without too many disasters.

The current thinking is that you should look at food as fuel.  Logically it makes a lot of sense, but I can't marry that idea with gorgeousness of a huge pile of moules à la crème with crusty bread, or a warm lemon meringue pie with a trickle of cream, or large glass of pink champagne.  Somehow I suspect that they are the wrong kind of fuel.  You can't reduce one of life's greatest pleasures to the status of coal versus oil.  It just doesn't work.

Besides, everything always seems more desirable when it's banned, even when you're not a teenager any more.  So diets of any kind are not for me.  They feel like strait jackets.  But I've huge admiration for anyone who can stick to them. 

I'd fall at the first (domestic) hurdle.  When I feel mentally and emotionally exhausted, chocolate works so much better than a banana.  But you can reward yourself in other ways, I hear you cry!  Well, not always.  If you are supervising children who interrupt you with their demands every five minutes, you can't abandon them to go for a walk, or sit down and read a book.  But you can enjoy a bar of chocolate, one sticky square after another.  Preferably hidden behind the teapot so the kids don't ask for one too.

I eat when I'm sad, I eat when I'm stressed, and eat to celebrate, too.  The only time I don't eat is when starting a new job or some other activity that is novel and busy enough to take my mind off food.  Or drink.  That's the other thing going on right now: Dry January.  Some of my friends have joined in, but the thoughts of promising to pass the wine aisle by for a whole month just seemed too depressing.  I'm having a slightly damp January instead, because I don't really fancy alcohol very much at the moment.  My choice, so it's not deprivation thank goodness.  I'm not losing any weight either as my non-alcoholc tipple of choice is Cherry Lucozade, and you can't get much more unhealthy than that.  But I've no plans to give it up any time soon.  Or anything else that I enjoy.  How about you?

Thursday, January 22, 2015

Sweet reasons to be cheerful

It's funny, I remember contacting bloggers ten years ago, when I worked as a PR in Dublin, yet until recently it seemed that parent bloggers were of little interest to brands in Ireland.  That is now changing, and I occasionally get invited to something.  And this invitation was once again thanks to the Irish Parenting Bloggers group, who were out in force for the launch of a new Irish family website.

I will draw a discreet veil over the early morning antics in my house, though you might be able to guess if you're a regular visitor here.  But then things got better.  Apparently the latest thinking is that all you need for a long and healthy life is a brisk 20 minute walk every day, so I parked one mile from the venue to get in my quota for the two days.  And it wasn't raining.

In fact it was one of those gloriously clear blue winter days that makes you want to whip out your cameraphone every few yards.  So I did.  Obviously that didn't help the brisk pace much, but still.

I even arrived at exactly the right time, Gandalf style, so there was no time to worry about being late, or panic about what it would be like.

It turned out that spending a morning meeting and catching up with some of Ireland's friendliest bloggers was just the break that I needed.  Normally I hate anything that even sniffs of networking, but the organisers had made it very easy: we were all squashed into a fairly small room with coffee and cakes on one side and photo opportunities on another, so it was not possible to enjoy either without chatting to someone.  So I did that too.

Disclosure: I wasn't asked to write this, but I was offered lots and lots of CAKE to attend.  

So I totally ignored my New Year health plans and felt very cheerful indeed.  Anyway, I walked it off, didn't I?  

Reasons to be Cheerful

Monday, January 19, 2015

How to tackle school refusal

You get a sick feeling when the alarm goes off on Monday morning.  It's not the first alarm, the one that has you crawling out of bed.  No, this is the reminder to wake your child for school.  The child who doesn't really want to go.  You climb the stairs, take a deep breath, and enter.  Using a calm and positive voice you tell him the time and ask him to get up.  He simply tugs the duvet over his head.  But you know that this could mean anything.  So you try again in 10 minutes.  Sometimes you get lucky, sometimes the dance continues until the school bus has been and gone, and then you taste that feeling of bitter failure once again.  Mornings like these are guaranteed to make most parents feel helpless, hopeless and useless.

Your child will be feeling miserable too.  True school refusal is nothing to do with your child being naughty or bold, but more to do with fear and anxiety.   They know you want them to go to school and they may want to go themselves, but they just can't.

When your child isn't coping, you're both dealing with school refusal every single morning.  As a parent the same questions got through your mind every time:  Will he go to school today?  What should I say today?  Should I try something new?  Why is nothing working?  What am I missing?  It's very easy to blame yourself.  To wonder what you could have done differently.  And you live with that guilt all day.  It stares you in the face every time you look at your child who should be in school.

Few statistics are available, but there is some evidence that school refusal tends to start or worsen during the teenage years.  Anecdotally it seems that some teenagers blossom when they begin secondary school, while for others the combination of additional demands, lack of understanding and the uncertainties of puberty prove too much.  And school refusal does seem to be more common among teenagers on the autism spectrum.  They face so many potential difficulties in secondary school: from their hatred of homework, to sensory overwhelm, not understanding instructions, and the lack of supervision in corridors and school yards.

Many teachers in mainstream schools are interested, aware and open to accommodating pupils on the autism spectrum.  But some are not.  Some appear to believe that providing a special needs assistant magically removes all additional needs.  Or they may believe that it is better for the child to be treated the same as everyone else and not be marked out as "different".

There are no easy answers.  How each family tackles school refusal will depend on the family dynamic, how the child's school operates and whether there are any alternatives.  The following is what I've learned so far, and I'd love to add to it, if you have any thoughts.

Options for when your child is off school

1. Deny access to consoles and computers for the duration of the school day, except for supervised educational purposes.  The child may accept and understand this as he realises that he should be learning during the hours that he is supposed to be in school.

2. Make life at home boring. Some parents have solved school refusal by making time off school dull and demanding, insisting that their child does school work and chores.  But not every child on the spectrum responds well to demands and consequences.  Sometimes it's about easing your child back into school in a way that suits them.

3. Spend the time with your child, doing agreed activities and hopefully they will begin to feel less anxious and you will have the opportunity to find out what is really bothering them.

How to help your child go back to school

If your aim is to get your child back into school, then sooner is better than later.  Your child is missing out on their education and the longer the absence, the harder it is to go back.  The fear of being asked why you were out and trying to catch up with what you missed is added to the fear of school itself.  For parents each day of school refusal means that plans have to be changed, jobs and appointments deferred and employment becomes almost impossible.  Yet when you're all stuck in the moment, days or even weeks can pass by with little progress.

1. Sometimes the solution can be found in standard autism strategies such as reassuring picture schedules that show each step of the morning routine or a reward chart to encourage school attendance.

2. If your child has already missed more than the legally allowed number of absences a year then it can be a good idea to contact your local school attendance service (TUSLA in Ireland) and explain the situation - and they may be able to provide some help too.

3. Teenagers may have specific reasons why they are refusing to go to school, and may not go back unless these can be addressed.  Working with your child may be the way to solve the problem: my favourite method is in The Explosive Child, and any family can benefit from using the techniques in this book, not just families living with special needs.

4. You've probably already been in contact with the school and your child's service provider, but once you know what is really bothering your child, then you can hopefully agree a plan for them to return to school with the supports or changes that they need to feel comfortable again.  I'm discovering just how many school rules can be broken or bent if you ask the right people in the right way.

Of course sometimes the school-related problems are so great that a return is not possible or school refusal becomes so chronic that there seems to be no way to ensure consistent attendance.  But your child is entitled to an education and there are alternatives.  Here is Ireland they include home tuition, home education or finding a more suitable school (which is a lot harder than it sounds).  There are also outside agencies that can help such the Middletown Centre for Autism.

School refusal is both complex and head wrecking for everyone involved, and the stories I've heard would easily fill a book, but that's for another day.  Wishing you the very best if it something that affects your child.


The following is a very important comment from one reader who found the first two options harsh:

“I’m scared that some people will continue punishing their children for school refusal when the issues are far bigger than they realise, and I'm scared some of these children will feel NO-ONE is listening to them and will take their own life. This isn't being overly dramatic, sadly I've had to try and help several families whose children have committed suicide, so I take the CHILD'S cry for help very seriously here, and it's the PARENTS' responsibility to listen to their child.

I feel a loving, listening approach is a better place to come from than a banning, grounding one.

Sadly some people out there don't seem ready or possibly able to take responsibility, and many deeply distressed children may be faced with equal hostility and stress from their own parents which can lead to them feeling there's only one way out. Ireland has the highest number of suicides of young adults between the ages of 15-22 in the whole of Europe, and I feel the way the education system is, is a part of that.”

Further reading:

Aspie in the Family

Friday, January 16, 2015

Reasons to be cheerful 16.1.15

So it's been another challenging week in special needs land yada yada yada.  Issues at home and indifference (almost) everywhere else.  I think the powers that be would like us to just go away where we can't bother anyone as we're messing up the Irish turnaround story that the Government would have us believe.  Anyway I've hunted around and found a couple of reasons to be cheerful for this week:


A major thing this week: I was notified of a price increase and I was just going to suck it up until I saw a post about how little others were paying.  A couple of phone calls later and I had saved myself €20 a month.

I was also hoping for better broadband.  The new package is supposed to be faster, but I was worried that it would keep cutting out, as is has in the past.  On Wednesday night our broadband got very sick, rallied on Thursday morning, and then died completely just before 5pm.  I spent over an hour trying to fix it, including a very long call to UPC - our supplier - who, as usual, tried to blame the modem, the cabling, Storm Rachel, anything that didn't involve their signal.  Then I discovered that the neighbours' broadband was down too, and UPC finally admitted that there is a fault in this area.  If that gets properly fixed, there will be very cheerful celebrations in this house!

Harry Potter

The films were watched over Christmas, and now the books are being read.  And not just a page a night either, they are being demolished.  They have provided hours of entertainment when the laptop and consoles are not available, and when the broadband was down.  Thanks JK, you may have introduced yet another boy to the joys of reading.

Meeting friends

Okay, so you've read this one before, but it highlights the positive side of special needs land, as I would never have met these three lovely women if I didn't live there.

Designing houses

For many years I wanted to be an architect when I grew up, until I found out that I wasn't studying the right subjects.  It didn't stop me being an amateur though, and for years I would doodle designs on scraps of paper whenever I was bored.  I designed the basic layout of the extension on this house, but I've done very little since.  Until this week, when I went for a run and recalled a conversation about the challenge of adapting a small terraced house for someone with a disability.  And I found that solving the problems in my head was a wonderful way to calm my mind.  Now I need to find a way to doodle it down somewhere.  Just in case.

Reasons to be Cheerful

Friday, January 9, 2015

Lessons learned from an International Autism Conference

If you care for someone with autism in Ireland and have not signed up with Middletown Centre for Autism, then please don't wait any longer.  I'd been to one of their excellent courses before, and today I attended their first International Autism Conference, and it was well worth all the arrangements and bribery of the children.  Not only were the speakers absolutely first class - of which more in a minute - but all the basics are FREE, including the conference, coffee, lunch and parking.  When you're used to everything connected with special needs being UBER expensive, there's something very special about a free event.  It feels like somebody cares.

It was a day of listening, chatting, putting faces to names and even relaxing just a little bit.  And I learned some important lessons too:

1. I need to get out more.

2. While much of the material was not new to me, I realised that I need regular reminders so that I can stop slipping back into unhelpful parenting habits.  Hearing it in a different way in a new setting and from a different perspective does make a difference.

3. It's good to step away from your child sometimes and see the bigger picture: where and how they fit in to the world of autism.  And perhaps how they don't, as well.

4.  You always get great insights into autism when you listen to an adult on the spectrum.  Today it was Damian Milton from the University of Birmingham, who was diagnosed with Asperger's soon after his son received a diagnosis of autism.  Damian's life story was inspiring and he talked about how autistics often believe that they are not listened to or understood in conversations with those who are not on the spectrum.  And vice versa.  He called this the double empathy problem, but as a minority group it seems to be a bigger problem for those with autism.  There was too little time to look in detail at solutions, but helping your child to find his tribe, a group of other people like him, seems to be very important.

5.  There are some really great-sounding schools out there, and there were moments that I wanted to stand up and cheer their representatives.  Between them, they mentioned many of the things that I'd dreamed off, but have not been able to find or get implemented.

... Whole school training for autism. "Because every teacher will be teaching these kids".
... A lunchtime club with an opportunity for sensory processing activities that improve regulation and thus reduce stress levels in pupils.
... Male classroom assistants.
... Effective home/school communication - parents are given mobile and e-mail details for key contacts.
... Lots of resource and sensory break rooms with a wide variety of equipment including bean bags, IT, allocated desks and even a kitchen.

6.  People with autism find it difficult to understand context, and this is the reason for rigid thinking and lack of flexibility, according to a very entertaining presentation by Dutch Educationalist Dr Peter Vermeulen.  He called it context blindness, and encouraged parents and educators to help children to find a way around it.

7.  Autism is a spectrum or continuum, so there are people - including many parents - who are on the cusp of a diagnosis.  Yet the discussions used two distinct groups for comparison: those with autism and those without.  There is little recognition of the group in the middle with a foot in both camps, and this was my only problem with the talks at this conference.

I had to leave before the end of the day, and I will miss tomorrow's presentations, but a complete blog from the conference will be posted on the AsIAm website.

And a huge thank you to a couple of friends for making it possible for me to take up a last minute ticket to this event.