How to educate a teenager with Aspergers

So when your child with Aspergers is ready to leave the relative security of primary school, what do you do?

In Dublin there seems to be just three choices:

No schools that specialise in Aspergers

Secondary school is where your child will experience the upheaval of the hormonal teenage years and be expected to sit all the State examinations that will impact on their future.  There is a lot of pressure to make the right choice.  But it is hard to find out which secondary schools can cater for 12 year olds with Aspergers and offer them places.  There is no definitive list, and no organisation that can help.  You may just have to ring as many schools as you can.

The secondary school that my son now attends is a mainstream school which also has resource units to cater for a number of pupils with Aspergers. He began there at the end of August and these are my observations and those of other families whose children have attended for longer...

Conform and Comply 


At school the teens are given great support, and there is good home/school communication, but every pupil, including those with aspergers are expected to conform to a strict code of behaviour and comply with all directions from staff.   If not they are punished.  Once upon a time I would have accepted this, but since becoming an autism parents I am not so sure.

This environment does seem to result in high levels of stress for some of the teens with aspergers.  Some would say they need to learn to cope with all this.   It's preparation for the real world after all.  But perhaps not everyone will make it out the other side.   I know that some don't finish school.  Some may not be able to cope with everyday life on their own, or typical office based jobs.  And that should be okay.  But issues at school should not be the cause of this happening.   So perhaps some teens need a different approach.

Alternative Models


What are the alternatives?

Special school? Would they really be able to provide the high level academic education that many of these intelligent teens need to stimulate and challenge them?

Home school? This works very well for some families, but not all. It seems to require a huge commitment of time, emotional energy, and often financial resources, which may not be possible for everyone.

Aspergers school? There are none that I can find locally. And I'm not sure what a school just for kids with aspergers would look like.  Should it accommodate all their quirks?  Or is this just mollycoddling?

In theory I would like somewhere where...

...Stimming would be acceptable.
...Every teen enabled to calm themselves in a way that works for them.
...Studying would be tailored to their particular interests.
...Sensory issues and needs would be respected.
...Where they are not treated as children who are bold, but as children who just need a bit more help and understanding.
...Whole school flexibility to make changes when a teenager needs it.

A pipedream?  Perhaps.  Poor preparation for the 'real' world?  Probably.  A good way to nurse teens with aspergers through the difficult teenage years?  I would think so.

But then I am a million miles away from being an expert.


Reasons to be Cheerful 24.10.13

I feel that I can breathe again after a tricky few weeks, so finding some reasons to be cheerful will set me up perfectly for a the mid term break which starts on Friday.  How did the weeks go by so fast?

So here are a few good things that have been happening...

...Secondary School is going better for my boy, well since this yesterday anyway.

...He's reading a real storybook in English.  It's age-appropriate.  And even better, it's one of mine!


...Smiley has her monthly night in Respite on Thursday.  And much as I love her, I'm really looking forward to switching off the alarm clock and getting a good night's sleep.

...My brother and nephew will be staying with us for a few days next week.  So there will be lots of good food and outings and fun.

...Catching my daughter doing a perfect pirouette in a patch of sunlight in the kitchen.  A precious moment.

...Same daughter realising that I was struggling and cleaning up unasked and unexpectedly almost every day.

...My first successful catnap.  You hear about the benefits of siestas, but my memory of falling asleep during the day was of waking sick and groggy, and unable to shake off that feeling.  This time it was different.  Though I woke with a jolt, within minutes I was no longer plagued with yawns.  Just a pity it happened in the yoga class.  Hope I didn't snore!

...Realising that it is still worth helping out with the organisation of Smiley's Saturday Social Club.  Watch this 6 second clip and you'll see why :)


video



Reasons to be Cheerful at Mummy from the Heart

Silent Sunday 20.10.13






The MMR vaccine and Aspergers


Here we go again.

Another letter.  Another decision.

I know how important vaccines are, I know how many lives have been saved.  But I still hate them. The idea of allowing someone to plunge a syringe full of god only knows what into your precious child goes against every mothering instinct that I have.  But I allowed it, over and over again with my girls, and nothing bad happened.

Then I had my son, and he had markers for autism.

Now I've never believed that MMR causes autism, but since the 1990s when I studied the Sinnott case I wondered if the MMR could switch on an autism gene?  Or intensify something that was already there?   Most people tell lies most of the time, as one of my Facebook friends pointed out last night.  So you can't really trust scientists, or the Government, or the Health Service.  And you can't really trust the anti-vaxers either.

What to do?  As usual I chose to compromise.

I spent a small fortune getting the single vaccines for my son when he was a toddler, and then ignored the primary school letter about getting a booster.  Well I did enquire about getting my son's immunity tested.  But they won't do that.  So he didn't get the second dose.

And then it turned out that he was on the autism spectrum all along.

He's not a baby now, so if there is a negative effect to the MMR, surely it would be less now?

I'm also tired of fighting the system.  Tired of researching every decision to the nth degree.  And the more I find out, the less I know for sure.

The bundle of paperwork sent home by the school actually included a form to be completed if you didn't want to have your child vaccinated.   Nope don't want to go there.   I presume that would be yet another black mark on our file.  So fatalism prevailed.  I signed.  After all, he has aspergers already...




When life is tough at home....go out!

Okay so I know this doesn't work for everyone, but it does for me!  I believe that when you feel old and tired and fat and dull, and stuck in rut, that is exactly the time when you have to do something, anything, to put a bit of life back into your life.

If you often feel cut off from the big wide world when you face into yet another day of laundry, dish washing, bottom-wiping, therapy, appointments, phone calls, cleaning, soothing, entertaining, listening and all the other jobs that fall to special need mums, then do try and schedule the occasional night out to escape from it all.

And I know it can be hard, believe me.  I have no family to mind my kids with special needs, apart from my 21 year old daughter, and she is not always available.  So I've had to source competent adult babysitters, and you can find them. Try asking SNAs at your child's school, or volunteers at your local special need social group, or on Facebook, or other on-line support sites.

Going out for me also means that things can get a bit lax sometimes.  Children may stay up later than they should.  They might get pizza for dinner. Their teeth may not get cleaned.  They may watch lots of rubbish telly.  But the guilt is not going to stop me.

What about the cost you ask? Well there are ways to keep it down.  My big night out last Saturday was to go to the Irish Blog Awards: my blue dress was £14.99 from Newry, my daughter babysat for free, the early bird tickets were €30, and I drove there and back.

And even though no wine passed my lips during the 5 hours or so that I was there, I had a ball.

Posing with a pal and the fab entertainment group  
This blog was up for an award in the Health and Wellbeing category: I didn't win, but since I blog about all sorts of stuff, that's not really surprising!


Lots of frantic Facebook posting and tweeting meant that I got to sit with a group of bloggers from the Irish Parenting Bloggers Group, many of whom were also up for awards, so there were lots of sweaty palms and shaky hands as the winners were announced.  And we did end up with a respectable collection of awards at our table.

There wasn't as much time to chat as I would have liked - there was a lot of lovely food to eat, entertainment to watch and of course the awards, presented by the most entertaining MC who I warmed to as soon as 'she' commented at the start that all bloggers are socially awkward (see it's not just me!) and even the winner of the best overall blog said that she more comfortable with writing than speaking!

I was also absolutely delighted that the award for best photography blog went to Foxglovelane.  I just LOVE Catherine's wonderful photographs.  

Finally I just have to say a huge thank you to the organisers of the event and the awards, I really enjoyed being a part of it, and I'm still enjoying it now....this is just some of what I found in the take home goody bag!


Roll on the next night out....


A few thoughts on Budget 2014

The Budget speech was on low, I didn't really listen.  Most of the proposals had been leaked in advance and it was just more of the same, cuts and pain for the sick and the poor.

But if you are a middle aged, middle class, well paid, professional man, just like so many of the TDs in the Dail, you were probably celebrating last night.  With the champagne that no-one else can afford.

I am glad that young families have got some help - but I suspect that the savings they make from the Under 5s GP visit card will be clawed back elsewhere....

This year it was the turn of pensioners to be targeted, with cuts to medical cards, telephone allowances and the death grant. I wonder will they stand for it?  Or will grey power get some of these mean cuts reversed as happened before?

I've lost interest in protesting, and it seems that everyone else has too.  We're all fighting amongst ourselves, and blaming each other for our economic woes, just as the Government intended. And even though I've given up the fight for child benefit I still have to change station any time I hear right wing commentators attacking this universal benefit that is the final safety net for families.   They won't entertain a tiny increase on tax for the rich to pay for it, but would be happy to squander thousands of euros to means test every family in the country.

And it just so happened that on the day that it was announced that there would be another cull of medical cards from the sick and vulnerable, I was reminded once again that there is still money in this country.  That the Government can find money for some projects.

My daughter had to attend a gymnastics judging course in Blanchardstown at the National Sports Campus.  Neither of us had ever heard of it.   Google Maps told us it was near the National Aquatic Centre, but it isn't on a bus route, so I piled the kids in the car and we headed out in the rush hour traffic to get there for 6pm.  

Now I'm all in favour of sport, but did this really need to be built at a time when so many people are suffering so badly?

Note the tree-lined avenues, the state of the art buildings, the sculptures.....

Is this the resurrection of the Bertie Bowl?



Do you reward your teen for doing what they should be doing anyway?


Yep there are still issues here with aspergers.  And I'm looking for advice, but without giving any details.  Because I promised *sigh*.

I've done the teenage years.  Twice.  But clearly I was lucky.  And I think that there is often a difficult dynamic between teenage boys and single mothers, whether or not aspergers or autism is involved.  As soon as my marriage ended my son used to joke that he was the 'man of the house'.  At age 5!  Now he can say it with a bit more confidence.  But I am still his parent, and I expect to have a lot more parenting to do before he officially becomes an adult in 6 years time.

I implemented a punishment yesterday - a withdrawal of privilege - and it almost backfired badly.  It made him angry.  And I understand that.  Punishments used to make me feel angry too.  But surely you have to stand your ground with teenagers or they will lose all respect for you?

But perhaps a reward system is needed too?

I guess I always thought of reward systems as something for young children.  And I was never a fan of linking pay or presents to chores or other everyday activities that I expect children to do anyway (there are actually very few of those!)  I didn't give out pocket money once I realised that it was being spent on sweets.  But I would always surprise them with special presents, treats or outings once in a while and because they weren't expected, they seemed to enjoy them more!

Is it time to change my mind?

Can behaviour be changed by introducing a reward chart for a teenager, perhaps linked with money that he can put towards the games that he is so desperate to buy?

And what will his sisters think when they see him being rewarded for doing things that they did automatically....



Memories of The Pogues and Philip Chevron

My favourite song of all time?  Smells like Teen Spirit.  My favourite album is The Stone Roses, and my favourite band?  Well that would be The Pogues (followed closely by The B52s, of course).


So I was very sad to hear the news that Pogues guitarist Philip Chevron had lost his battle with cancer during the week.  I knew that he was ill, but I didn't really think that he would actually die, somehow I just expected that The Pogues would go on forever: the neverending party.

I will never forget hearing them for the first time.  A raucous crash of a song that sliced through the bland daytime fare on Radio 1, like a knife through butter.  The energy, the attitude, the craziness, the wildness, I was completely hooked.  I saw them in Kilburn first with a couple of boy friends.  More madness, a lead singer who nearly didn't make it through to the end of the set, and I nearly got trampled in the pit when I fell off my heels - yes I know...... what was I thinking?

More gigs followed, though as the years have gone by, it's got harder and harder to get there.


Then I bumped into some of them in my local pub.  I was too shy to go over, but my ex did.  He was gone for while, but came back with these: the only autographs I ever got...


The Pogues have been the sound track to my adult life: soothed me when I felt sad, lifted me when I felt happy.   It's hard to find the words.  You know when you feel completely alive, when you're soaking up every second and nothing, nothing else matters, just the here and now, when you're hoarse from singing, breathless and scarlet from jumping up and down, and your face is shiny and hurting from smiling so much.  That's a Pogues gig for me.

Now there's a piece missing.

Philip, I hope you enjoyed every second of it all.  I certainly did.  Rest in peace.


The other kind of hangover

I'm sure I've written about this before, but perhaps you didn't hang around here then.

Yesterday was another difficult day with aspergers....or should I call it autism now?

I won't write about it here, as promised.

But I didn't promise not to write about the effect on me.

I'm on medication now, after hitting a really low point a few months ago.  And mostly that keeps me calm and helps me to deal with the stuff that happens.  It certainly did yesterday.  I no longer dive headlong into fight or flight.  I actually did quite well yesterday, and I did this morning too.  And things got done, and both children got on their buses and left for school.  So far, so good.

In theory I can now relax.

But what actually happens is that I start to get completely overwhelmed by what went on.  So I'm trying to work, but I know that tears are not good for keyboards, and shaky fingers and swirling thoughts make for stupid mistakes.

Just hoping that my Yoga class later will make some sense of the chaos x


Silent Sunday 6.10.13






Why I didn't breast feed. Part 1.

I must've been a 'let down' to my Mum.  She breastfed all three of her children.  Not something I remember, but she certainly talked about it, so I knew it was the thing to do if you had children.

But I hadn't given much thought to the business of babies before I fell pregnant with my first child.  I was broody, sure, but there was no real planning involved.  And in those pre-internet days I just got on with the pregnancy, swallowed the folic acid and gave up eating soft cheese.  Ante-natal classes were mostly about labour and birth.  How you fed your baby was not given much attention.  I knew that breast-feeding was the ideal but the truth is that it didn't sound very appealing.

And even now breast-feeding rates in Ireland are low by international standards - only 56% per cent even try it (ESRI figures 2012), so perhaps the things that put me off breast-feeding in the 1990s are still relevant today.

These were my impressions of breastfeeding - please do not take them personally!  I guess they need to be challenged but please be respectful...

1. Breast-feeding proponents in the early 1990s reminded me of my school headmistress.  They lectured you and expected obedience.  You were told that "good" mothers breastfed their babies, that it might be hard, but you mustn't give up, just grit your teeth and carry on.  It was portrayed as another chore, like changing pooey nappies.

2. I had this idea that to establish breast-feeding you had to stay in bed for the first few weeks, supported of course by your extended family and friends, who would look after the house, any other children and provide hot meals and anything else that was needed.  With no family in Dublin and just a handful of friends, who were also up to their necks in nappies at the time, I just knew that there was no way that I would get that kind of support.

3. Then there was the whole image of the breast-feeding Mum.  They seemed to see motherhood as a vocation, and they were mostly mothers in the home, who seemed to rarely venture out - a Mum in a cafe with a baby would always be bottle-feeding.  Breastfeeding sounded very restrictive, while bottle feeding looked easy and normal.  Especially if you were heading back into the workplace.


4. The horror stories around breast-feeding rivalled those of birth: bleeding cracked nipples, biting babies, mastitis, sleeplessness, exhaustion, but over months and months, not just the 24 hours or so of labour.  The thought of volunteering to put yourself through more pain post-birth was just too much to bear.

5. It also sounded like hard work: perhaps I'm  a control freak, but the thought of feeding every couple of hours - or even more often - terrified me.  How would you ever plan anything ever again? Well until you weaned the baby obviously.  And what about sleep?  Your partner can help if you bottle-feed.  And with a maternity leave of only 12 weeks back then, I needed my baby to be feeding and sleeping to some kind of schedule by the time I went back to work - I only just achieved that as it was!

6. No-one ever tried to persuade me to try breastfeeding, not while I was pregnant, or on the postnatal ward.  I may have been asked how I was planning to feed my baby and the SMA was handed over as soon as I mentioned bottle-feeding.  Every other mother on the 14-bed ward did the same thing - I don't recall seeing any babies being breast fed at all.  And so it went on.

When Smiley was born at 26 weeks, I was encouraged to express milk for her, and I did.  But it dried up after about 6 weeks, and no-one suggested anything to help the milk keep flowing.  By the time my son was born, my life was so busy that there was no possibility of putting in the time and effort to breastfeed, so the bottles were taken out of the attic yet again...

Times have changed and breastfeeding seems much more normal now.  But I didn't really take an interest.  That changed after I joined the Irish Parenting Bloggers group, and promised to share some of their posts from a recent breastfeeding blog march.  I read some of them too, and they presented breastfeeding in a completely different way.  They were written with great affection about the joys of breastfeeding, and I started to wonder if I'd missed out on something after all...

Like this one by At the Clothesline

But there was one other reason why I didn't try breastfeeding.  And you'll have to wait for Part 2 for that!

Details of the Blog March for National Breastfeeding Week by the Irish Parenting Bloggers Group can be found at Mama.ie.