Stinky boys and secondary schools

It was an emotional morning of appointments with aspie boy.  We met the psychologist who originally diagnosed him with Asperger's in 2009 - how long ago that seems, and how innocent I was then about the implications!  And our appointment was with the doctor who had admitted my son to the local hospital on that dreadful day in September when the lack of help for my son finally resulted in a crisis.  The doctor was delighted to see my son on a normal day, and the link between his anxiety and his anger issues was agreed.  The verdict? As you were, for the next while anyway.  And a follow up appointment in four months, so I feel vindicated at last.  He's being monitored.  They believe me.

Before the Asperger's diagnosis
Probably just as well, as Asperger's has been harder to handle since Christmas.  He's just been 'difficult'.  Almost everything is a battle, and then something you dread trying to organise is easy.  So he's being unpredictable too, and that is also stressful.  His anxiety levels are still high: he is terrified of catching something, that every bug is lethal, and every cut will cause him to bleed to death.  He has also been complaining of tiredness since Christmas and using it as an excuse to opt out of everything at school and home.  But there is no sign that he is tired, and I was delighted that the school has persuaded him to give up saying 'I'm too tired', for Lent.  Now that's the kind of sacrifice that could have really positive results!

So that leads me on nicely to the second appointment, a meeting with his new teacher.  Nice things were said, but some other stuff was not so good.  It's scary.  He is supposed to be starting secondary school in 18 months.  A lot of progress needs to happen in that time if he is going to be able to cope.  And how to choose a secondary school?  I have had very little help indeed with this dilemma.  You would think that I was the first person ever to query where to send a child with Asperger's and a high IQ.  

Earlier this evening

So far the only good advice has been from his school, from Irish Autism Action and from my pal Jazzygal.  As Jazzy says, I need to find the right school for him that will help him to survive and thrive during  those crucial teenage years.  But the local schools for kids with Asperger's are not highly academic, and the academic schools do not have so many resources for kids with Asperger's.

Do I prioritise the Aspergers or the academics?  I just don't know right now, but a decision will have to be made soon. And even if I find the 'right' school, there is also no guarantee that he will get a place...

If you have any good advice, I'd love to hear it.  

I've saved the good news till last.  I have an obsession with preparing for the teenage years well in advance.  With Angel I wanted to find the right school and encourage her love of sport, to keep her busy and away from less desirable teenage activities as far as possible!

With my son I'm working on the school and sports goals ...  but I have another big worry too.  Teenage boys can be smelly and careless about hygiene (although I don't remember this? Do teenage girls lose the use of their noses for a few years?) and that is something that worries me.  Finally last week he started taking daily showers, on school days at least.  It's taken many years to get to this point.  There was the decision of bath versus shower, then morning versus evening, the right brand of shower gel (the orange one from Lidl in case you're interested).  I started with one shower a week, and added an extra day for each birthday.  His 'tiredness' (and mine) was used to move the shower time from evening to morning, and his anxiety about bugs was ruthlessly exploited by me to persuade him that daily showers would be healthier.  Now I just have to keep it going....

Keep Calm and Carry On, a #specialsaturday post

What poems or mantras inspire me to keep going in the rollercoaster world of special needs?  That is the question for this week's #specialsaturday, the online campaign that aims to raise awareness of children with special needs.

I can think of two, both short enough to remember, and useful enough to repeat during times of stress.

The Serenity Prayer has got me through many overwhelming situations - and you don't have to be a believer...

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

And if you replace 'ring' with special needs, this quote from The Lord of the Rings also comforts me:

Frodo: I wish the ring had never come to me.  I wish none of this had happened.

Gandalf: So do all who live to see such times, but that is not for them to decide.  All we have to decide is what to do with the time that is given to us.

If you would like to learn more about Special Saturday then you can do so though the following ways:

Facebook – http://www.facebook.com/SpecialSaturdayTwitter – follow @Specialsat and use the hashtag #specialsaturday
The Blog – http://specialsaturday.org/
Wendy at the Savette Gazette –http://www.savette.com/category/special-saturday/

Young, stupid and full of paracetamol #dosomethingyummy

Her name was Alice.  She was 22.  She'd done all the right things.  Studied hard, done well in her exams and got a 'great' job.   Bought into the big dream that was sold to young girls in the 1980s: study hard and you'll live happily ever after.  So why was she in despair?  Why did everything seem so hopeless?  Looking back from the perspective of her late 40s it all seemed rather pathetic and stupid, but at the time she was very young, very immature and completely overwhelmed.  

The dream was just that.  A dream.   

The great job turned out to involve little more than adding numbers, faxing and photocopying.

The thoughts of 40 more years doing the same thing were terrifying.  Then other little things went wrong.  Alice had been wearing contact lenses for a couple of years, they had transformed her life.  Not only could she see clearly at last, but there was a huge improvement in her confidence, no more stupid bullies.  But then one night her eyes started itching.  And then they began ooozing.

Her 23rd birthday was a week away and the future looked bleak.

So she went upstairs with a bottle of vodka and a jumbo sized bottle of paracetamol.

About an hour later she had second thoughts and started to feel a bit stupid.  She rang the Samaritans.  She wasn't even sure why.  On the other end of the phone someone asked what she'd taken, and said 'hang on'.  Time stretched infinitely until that person came back and told Alice that the dose she had taken was not lethal (wrong).  Alice hung up.

The next day she had a dreadful hangover, but that was all.  Two days later she still felt ill.  So she went to the GP and just happened to mention the events of Saturday night.  She doesn't remember what the GP said but she will never forget the way his face changed as he listened to her story.

Hospital.  Alice had gone through the Looking Glass alright.  And shattered it.

The ward was full of people who had attempted suicide.  Some had been here before.  Some were regulars.  

Alice was in shock.  She wasn't really sure why she was there.  Even when the hospital doctor gently explained, it took a while to realise that he was actually telling her that she had taken a fatal dose of paracetamol, and because she hadn't sought help earlier it was too late to flush out her system.  She would live or she would die.  There was nothing anyone could do but watch and wait.

It didn't seem real.  It couldn't be.  She spent her days chatting to the other patients and trying to cheer them up.  

And the days went by and nothing happened.  Alice was one of the lucky ones.  She got better, she survived, and she never forgot that she'd been given a second chance.  She got out.  In time for her birthday party on Saturday... 

Some names and details have been changed.

This post, on the theme of survival, is part of a linky over at  Typecast, and has been written in support of CLIC Sargent, the children's cancer charity. For the last six years mums have been raising money by taking part in Yummy Mummy Week which will take place this year from 10th - 18th March 2012.

A Fairy visits NICU

I'm currently trying to write part 3 of Smiley's Story and, as I hunted through old files, I found this polaroid of her big sister visiting the neonatal intensive care unit in her fairy outfit.  I had thought it lost long ago...




Parts 1 and 2 of Smiley's story are Born too Soon and Failure to Thrive.

Now I know she's all grown up

Last night I sat on a bar stool next to my 19 year old daughter.  We were both sipping vodka and coke.  Another first, and a strange moment of calm during a very busy evening.  

You see on top of the usual mid term madness with the two littlies, there was a knot in the pit of my stomach about Saturday night.  Part of a whole tangle of knotted feelings which all relate to Angel's BIG PLAN for the summer.  Together with three of her friends, she will be going to Tanzania to volunteer in an orphanage for a month.  The trip is organised by a charity, and the girls have to pay to take part.  A major fundraising drive would be needed.

I didn't believe her when she first said it.  Then I started to panic: my baby girl going to Africa! Somewhere I've never been and I don't know much about it.  All kinds of unwelcome thoughts began to set up home in my head: the chances of catching obscure tropical diseases, flying on dodgy airlines, and plenty of other half-formed fears I dare not even put into words.

But once the girls signed up and paid the deposit, I had no choice but to be supportive and - as I found out - to button my lip.  You see my girl knows her own mind.  So I've had to wait to be asked for advice.  Which has happened occasionally.  And I've also been asked for spot prizes, lifts and other Mammy stuff.  But with months to go, the girls are already half-way to their target.  They're raised thousands of euros through church gate collections, a ferocious amount of bag packing - something I hate doing - and last night, a pub quiz.

I was worried about this too.  How would it go?  Would anyone turn up?  Would they raise enough money?  I so wanted it to be a success for her and I was far more nervous than she was.  

But I should have had more confidence in her abilities, and those of her friends.  It was held in the upstairs room of a lovely old city pub - with its own bar.  A friendly drama student was persuaded to do MC, and he was so good that he had two more gig offers before the evening finished.  The questions were varied and none of the tables found them too hard or too easy.  Oh and one of my teams came third and the other won a pile of raffle prizes - so my friends went home happy :D At the time of writing the quiz organisers are still fast asleep, but I'm pretty sure that last night's efforts made another big contribution to their fund-raising campaign.

Sitting on the bar stool with her took me back,  a long way back.  To those carefree days before Smiley was born, when I used to take her to the pub for Sunday lunch, when her Dad was working.  Just the two of us, sitting and chatting.  Last night it was the same, but different.  I realised it.  Angel really is grown up.  She's clever, she's well organised, she's competent and she's professional.  She also has a great bunch of friends, and she's going to be just fine, no matter where she goes.


Feeling the luuurve

I got just one Valentine's card this year: from my unwilling 10 year old son.






I'd say it could be the last.  In future I assume he will give a card to someone closer to his own age.  Who is not his Mammy! 


So I'll have to look for love in other places.  And I've found a kind of love here.  I was over the moon to see that today, St Valentine's Day, I passed 50,000 page views on this blog.  Many of them were probably spambots, but it's still the population of a large town.  Think Waterford or Hereford say.  Quite scary in ways!  Thank you to everyone who reads this stuff that I churn out and especially to everyone who comments.  I love comments!  Who knew that blogging-as-free-therapy could work so well.   And a huge thank you also to thejournal.ie for publishing my response to the Tony Humphries autism article last Friday.  It felt good to have a story published in real media.  


 So I'm feeling the luurve, hope you are too!


HAPPY VALENTINE'S DAY

Mother or martyr?

Q: How many Irish mammies does it take to change a light-bulb? A: None. "Sure amn’t I grand sitting here in the dark."


An old Irish joke perhaps, but is there is some truth in it?  Presumably the light bulb would be changed if the Mammy had company...


Am I becoming like this?  Uncomfortable thoughts have been swirling round my head recently.  I sensed a change in myself when I stopped 'working'.  As a career woman my hours were set, either I was at work, or I was not.  When I was in the office I just worked, the only break was the few steps to the kettle.  The money I earned was mine.  So any spare time and cash I could spend any way that I wished.  Of course much of both was spent on the kids, but it was my choice.


Now as a carer my work is 24/7.  There are no boundaries, there is no time off, so if I dare to take time out, it is time taken out of my job.  I feel guilty: 'me' time is like flicking through a magazine in the office when I should be working.  It doesn't feel right.  And as my income is mostly child-related, it feels wrong to spend money on things I like.  Now whenever I do anything that is not child or house-related I try to find a way to justify it.  


Running = keeping fit = looking after my kids for longer.


Coffee with friends on Sunday = a walk and cake with Smiley = keeping her happy.


Blogging = keeps Mammy's brain functioning = another job one day.


And so on...


I guess that in the past you did make your own bed and you did lie in it.  You probably had a lot of children as a result, and many mothers did not live long enough to see all their children fully grown.  Now many women choose to have a couple of children close together, so those 24/7 years only last for a while.  I have friends with teenage children who already describe themselves as empty nesters: they still worry about their children, but they don't need to look after everything for them.  As a carer, I could be a full-time mother - or martyr - for life


In the last five years I've lost both of my parents, and now I'm about to turn 50.  It certainly makes you focus on your life and I've already lived longer than poor Whitney Houston.  What do I want to do now?  Am I entitled to ask that question?



I think so.  Because I was delighted to get a bloggy award a couple of weeks ago.  And then shocked to find that I couldn't answer one of the questions, because in my busy life I'd forgotten to think about what I like and what I want to do.  


The award was given to me by friend Jazzygal, fellow member of the #50club, who has a fab and funny blog, which is also full of great advice for parents of kids with asd.



 Here are the rules:
  1. Thank the person who gave you the awardThanks again Jazzygal :)
  2. Link back to the Blogger (or Bloggers) who awarded you.  Go check out Jazzygal's Facebook page.
  3. Answer the following questions.  See below.
  4. Pass the award out and victimize ten other Bloggers letting them know, of course, that you've nailed them.  I may skip this one...
And here are the questions to be answered:

Favourite Colour? Blue of course :)

Favourite Animal? I haven't a clue, one of the big cats perhaps? They're beautiful, powerful and majestic.

Favourite Number? Oh I'd think I'd have to say 50, as things can only get better right?

Favourite Drink? As Jazzygal said: 'You mean there are people out there who don't know my favourite drink?'  Coffee of course, followed closely by wine ...

Facebook or Twitter? No way could I choose, they are completely different.  I can be a bit more daring on twitter, because followers come and go.  I've known some of my Facebook friends for more than forty years and I don't want to upset them now with a smart arse remark that they don't appreciate!

My Passion? Something I have to rediscover.  Maybe this will be the year when I finally get time to look at my life and what I want to do - just in time for my second half century..

Giving or Getting Presents?  I like giving presents if I really believe that I have found something special, but sometimes that seems impossible.  My Dad was never too keen on Hallmark days, and like him I enjoy unexpected presents most of all.  No matter what they are, they will always brighten up your day.

Favourite Day?  The last day of term, when I get to switch off the alarm clock.  Of course the children often wake me up early during the holidays too, but at least there's the chance of a lie-in.

Favourite Flower? Red roses.  I love everything about them: blood, beauty, drama, romance, tragedy and, of course, the film

I'm going to pass this award on to three bloggers (my apologies if you've been tagged before):

Christina at Mummy Beadzoid

Seonad at Touch & Tickle



Why the Tony Humphreys article upset me so much

Often the most dangerous theories are those which contain a grain of truth, and that is why this article is so upsetting to me.  You see I can relate to some of it, I can tick the boxes in each paragraph, and as my son was only diagnosed with asperger's syndrome in 2009, my feelings are still quite raw. 

And please note that this is a PERSONAL account.  Other parents of children on the autistic spectrum may have completely different views - I do not intend to offend anyone.

Tony Humphreys mentions research that suggests that the children of high achieving parents, especially engineers, scientists and computer programmers are more likely to have children with autism.  And guess what, family members on both sides have worked in these professions.  Such people are more likely to 'live in their heads' he says, and as a result there is an 'absence of expressed love and affection' in their lives.  Well anyone who knows me will know how much I adore my kids and how much I've done for them. 

And yet. 

My son's birth was difficult and I didn't bond with him as quickly as I did with my girls.  I was also accused of being 'cold' during the breakdown of my marriage.  Difficult and different behaviours were clearly shown by my son at school, but everyone assumed their escalation resulted from that breakdown. 

I imagine that Tony Humphreys would argue that they did.  

He might find it very easy to blame the parents for causing asperger's in my son, based on his theories.  And perhaps other people who read the article, even people we know, will do the same.  Perhaps my son will blame me when he is older....

And that's why the article hurts.  My son was less than 6 months old when I began to worry about his development.  I kept thinking that I had the solution: a tonsillectomy, counselling, resource hours.  And I gave him lots and lots of love.  But none of it was enough.  And to hear another expert on the radio today saying that many high-functioning children would do just as well with no intervention at all should have seen my son in his old school.  Suspension was the next step.  How would that have helped him?  And he was soooo angry.  And neither of us knew why.  Having an explanation and a diagnosis helps both of us.  With a diagnosis we have access to advice, information, services, support and a fabulous school where he is starting to fulfil his potential.

And I have to keep reminding myself that just because the some of the facts of my son's life may fit with Tony Humphreys' theories, it does not prove cause and effect.  

I do suspect a genetic component in asperger's syndrome and I see many aspie traits in myself.  But I don't think that I'm a refrigerator mum, do you?


The Top 5 Phrases that Drive me Crazy

Okay, I lied.  I'm back.  But I may be just popping in.  I'm taking part in this week's Listography. And it's for a very important reason....see No 1. below.


So here are the top five phrases that drive me crazy:


5. 'We offer the lowest fares blah blah blah', from the chief executive of a certain airline whose low fares I've never managed to enjoy because I usually have to fly at short notice.  Of course I still have to put up with the awful conditions and sneaky charges that the cheap ticket people obviously don't mind.


4. 'I'm not tired.'  Something I've been hearing from different children for the past 19 years.  I know they're tired.   I wish they would just stop saying it and go to sleep!


3. 'He needs a good smack'.  Said by people who see my aspie boy in meltdown.


2.  'We are where we are' - used by Governments right now to justify whatever cuts they plan to make.


1. 'There is no such thing as autism'. This unbelievable statement was in yesterday's Irish Examiner ** along with a lot of other upsetting stuff about it all being the fault of the parents etc etc.  Please don't be fooled. I think this is the start of a campaign to undermine support services for all vulnerable people, before they are cut, as they were in the UK this week.  






** It's also on my Facebook page.










http://i1208.photobucket.com/albums/cc379/katetakes5/listography-1.jpg

TAT

Since words aren't working I'm gonna give you pictures...And then I may take a bloggy break.  (But every time I say that I only last a few days, so we'll see) 


Many, MANY months ago, Heather at Note from Lapland started a meme that tagged bloggers around the world to find and photograph tat in their local markets.  I sulked until she added me to the list.  I had great plans, it would be a photographic project to keep me busy over the winter months.  And what happened? I visited ONE market.  But I did take some photos of other stuff that I found entertaining and liked.  So here for your amusement are...


This way!

Lovely Irish souvenirs

What do you do with this?

Did anyone actually buy this?

How the property tax could destroy communities

Is the property tax the final insult to people who have worked all their lives to buy a house where they assumed they could live out their days?  Up until now you could have the electrics switched off and the bins uncollected, but you would still have a roof over your head.  One you chose, one you paid for.  Now even this is under threat.  For most people getting the electricity switched back on again is achievable, but if you lose your home there is a good chance that you will never own another one, and could become dependent on the State - and how is this going to help?  The new €100 property tax will be affordable for most people, but no-one knows how high it will go, or how it will be calibrated in future to take account of property/site values and ability to pay.  There is even a proposal that unpaid property tax could be collected from the estates of dead people or when a house is sold.  Apparently elderly people living in their own homes could be an (in) 'efficient use of land'.  This could be the final straw that destroys communities all over Ireland.

Imagine a little street in Dublin (with apologies to David McWilliams).  A street of old redbrick houses, well-kept, in a nice area, where a property tax or site valuation tax would be quite high.  Who lives there? 

NB: any resemblance to real people is entirely accidental.

No 1 : Michael and Mairead and their four children.  Mid 30s, they both had highly paid professional jobs and bought their family home in 2004.   Mairead stopped working after the birth of child four as the childcare cost too much and now Michael's salary has been cut. In serious negative equity, they are barely able to manage the mortgage.  Will the full property tax push them over the edge?  Will their home be repossessed?

No 2 : James and Mary and one of their five grown up children.  They are retired civil servants in their early 60s whose pensions are not nearly as big as their neighbours imagine.  James enjoys golf and Mary is a pillar of the local community.  She chairs the local resident's association, helps out with Meals on Wheels and regularly checks on her elderly neighbours.  They are very worried about how they will pay all the new charges, but know that they will get no sympathy.

No 3: Ivy is in her 80s and her health is now failing.  She lives on her own and survives on a widow's pension.  The house needs work, which she cannot afford, but she fiercely values her independence.  Mary delivers her meals every day and Ivy knows she can ring her at any time.   Ivy is very worried about the property tax.  Will she be able to pay it? Can the Government take her house if she doesn't - as happens in the US?  Or will her children lose out?

No 4: Margaret is separated with two teenage children, who are great friends with some of the kids in No 1.  Her maintenance is just about enough for now and she minds the baby from next door, but she is not entitled to any means tested payments or waivers from all the new taxes and charges.  The property tax could mean she has to move out of the family home.  If she stayed and the tax becomes payable on her death, it could eat up the entire value of the house and more.  She doesn't know what to do.

No 5: Sinead and Dermot are in their late twenties, both working.  They bought in 2009 and can easily afford the mortgage as Sinead is self-employed so the bank would not take her income into account.  Their 6 month old baby is minded by Margaret.

No 6: Brian is in his late 60s and is in excellent health, but he only has a small pension.  Mary often brings him a meal and cleans up.  He is afraid that he won't be able to pay the property tax and that his children will try and make him sell up so they don't lose their inheritance.  Who will help him if he has to move?

I know that property taxes are paid elsewhere, but this is a NEW tax and it could become a very substantial cost that people cannot avoid paying from incomes that are already squeezed.  So what can be done?  There is a non-pay campaign underway, but with a proposed fine of €2,500, many will pay the €100 because they cannot afford to risk a fine of that size.  Then there's the 'penny protest'.  Well I'm calling it that and it's actually about cents rather than pennies, but basically it involves paying the €100 in cents, on the last day, in person.  I rather like that plan, but if anyone has any better ideas, I'm willing to listen...