Bye Bye Mainstream

If you had said two years ago that my son has special needs I would not have been impressed. Even last summer, after CD’s diagnosis of Asperger’s Syndrome, I would have told you where to go if you’d predicted that he would be leaving mainstream in 2010. Yet here we are.

Two years ago I still thought that CD’s volatile behaviour was caused by what had happened during my marriage break up. Last summer I believed the NEPS psychologist when she said that he needed resource hours and perhaps the school should apply for an SNA just in case. By Christmas I was exhausted - and I suspect his teacher was as well. It was clear that resource hours alone were not enough, and even an SNA made little impact.

Yet sometimes he would go for a while with no problems, just odd behaviours, and though he now ‘hates’ school, this is not unusual!

So I did nothing, until a couple of friends from the world of special needs told me that I could be heading for big trouble. And I listened - it wasn’t like the sometimes annoying advice you get as a new Mum. It takes guts for another parent to tell you that your child might have special needs or need extra help. They had no idea how I would react and they were taking a big risk.

This time I did listen, but it wasn’t easy to hear.

Myself and CD went to look at some other schools, just in case. I brought him with me so that I could gauge his reaction to smaller classes and other children with Asperger’s. He was completely cool about the whole thing - not like his Mammy.

Then suddenly we had the offer of a place, for this September, in the Asperger Outreach Class that we both liked the best. And about a week to decide.

I thought of the warnings from other parents, how his behaviour could deteriorate further without intervention, and how that intervention really needed to take place before he became a teenager. And I acted on their advice. Tomorrow is CD’s last day in a mainstream class. I’m still nervous about having made such a big decision, but I’m very glad I listened.

Do you watch TV?

This is the TV in the corner of my living room. It's old and needs dusting. It's also switched off. What you can't see from that photograph is that Angel and CD are also in the room, relaxing after dinner, and the TV is still off. Is this because I am some Supermum who can persuade her children to play board games, read novels or construct a scale model of Apollo 13 from toilet rolls and sticky back plastic? Definitely not....No it's because they are online. Angel is watching her favourite TV programme and CD is watching other people play video games on Youtube - don't ask.... Meanwhile the other telly is on, but only so that Smiley can watch a music DVD while she plays.

This is a recent thing: ten years ago I could happily have chopped up the TV with a hatchet. It seemed to rule our lives and was on all the time. RH, Angel and Smiley couldn't get enough TV in those days. Now it's the internet that is at the centre of daily life chez Blue Sky. Of course the internet has it's own challenges: Angel is nearly 18, so she gets to use the laptop and I have to trust that what she watches is ok. CD is just nine, and he uses the old PC, so I can see and hear what he is watching.

I'm seriously considering getting rid of cable completely. We don't need it. Someone on Twitter always has a link to whatever we want to watch online, so who needs to pay U** or S**? Everything is there. Buying exclusive rights to high profile sporting events does not stop them being available for free once you have a broadband connection.

But they don't see it. There was a full page report in a certain Sunday newspaper about S** last week and the expansion plans of its parent company. "This is a business on which the sun will never set," was the reported verdict of one media analyst. I wonder will she live to regret those words. Unless these companies find a way to control access to the internet, the next generation may not bother watching TV at all. And they certainly do not plan to pay for the 'pleasure'. Now I know that many people reportedly watch a huge amount of TV, and have access to more channels than ever before. But I wonder is it like 'peak oil'. Is this a TV-watching bubble that is going to burst when most people have laptops or iPads? Sure, we'll still be watching stuff, but perhaps it won't be on TV. The big TV will just be switched on to provide a larger screen for programmes streamed from the net via a laptop. No-one will go to the pub to watch S** Sports, because they can't enjoy a pint and a smoke anymore so what's the point? I think the writing is on the wall screen for old-style TV. Who needs it?

So does your family still gather around the box in the corner? Or do you all sit gazing at your laptops?

48 Not Out

Life is a bit like a game of cricket. All those curved balls....You miss some and you dodge others. But deal with them well, and you get a longer innings. I was thinking about that today, as it's my birthday and I wanted a metaphor to explain how I feel about turning 48. Not that great, as I'm no longer in my 'mid' 40s, and a number of my friends will reach 50 this year. Most people see that as a significant birthday, but many do not celebrate at all.

But I think we should be proud of significant birthdays. Reaching each one is an achievement. My Dad is now 80. He was christened 'wonderdad' on Facebook, because he works, climbs mountains, chases CD around the garden - and catches him - and generally acts like someone 30 years younger. There will be a big family party this summer, and I'm just so glad that he is healthy and happy. But he's been lucky .... and so have I.

Compared with 80, reaching 50 in one piece really shouldn't bother me. And if I have a celebration or a big adventure to focus on, then the sting of it will hurt less. For that reason I've organised something for every major birthday, starting with my 21st , which was a joint event in a Manchester night club. We got the venue for free midweek once we filled it with drinkers students... not that difficult to do!

I was expecting Angel when I turned 30, so it was dinner à trois, including herself. For my fourtieth I indulged my ungirlie obsession with all things automotive and signed myself up for a rallydriving course in County Monaghan. On the day there were a dozen 20-something boy racers ... and me.  I suspect they thought that I was the Mum of some poor sap who couldn't be trusted out on his own, and I'd say they got quite a shock once they realised I was taking part.  I wasn't quite as reckless as them behind the wheel, but I did manage some pretty fast corners and a few tolerable handbrake turns and the thrill of it was like nothing else I've ever done :D

I did plan to do this for my 50th, but it's probably a tad unrealistic right now. Perhaps I'll save it for when I turn 60. So I'm looking for alternatives for the big birthday in two years time.  All ideas welcome, just bear in mind my aspie-like social skills...

Today was lovely: glorious sunshine, the beach, the kids and me.  48 not out.  It doesn't feel so bad now.

Empathy?

It's 6 am in the morning, and a little head appears around the bedroom door. It's CD, my 9-year old with Aspergers Syndrome.

"Mum, can I get up now, please?"

"Yes, of course, you can."

Then he takes a few more steps and leans over and gives me a hug.

"You know if you're sick or it's a special day, I'll give you a much bigger hug than this."

"Thank you!"

"You're welcome."

"You know, that's a really lovely thing to say."

A slightly baffled silence and then:

"You're 100% welcome!"

With that he leaves the room and goes downstairs. All is quiet so I get a bit more sleep.

Perhaps this sounds like a normal exchange in your house, but for us this is just amazing. It's only in the past few weeks that CD has decided that it is safe to go downstairs on his own. Often the day would start with him screaming and cursing at me from his room because he did not wake up at the 'correct' time. So I recently got him an alarm clock which he can set himself. Also hugs from CD have not featured in my life for a long time, and I have really missed them.

I think today is going to be a really good day :D

Note: I apologise in advance for any formatting errors on this post: Blogger doesn't seem to be very cooperative these days.

Great Expectations

I guess everyone has great expectations about married life when they say "I do".  But what if those expectations are different?

I was thinking about this while watching SATC 2 this week - which was mildly entertaining so my mind did wander - and yes I am damning it with faint praise.  But I was fascinated by Carrie's marriage and her behaviour.  Is this normal?  Call me a lapsed feminist, but I was siding with Mr B*g.  What on earth was she thinking?

If Carrie likes something, Mr B*g buys it for her.  She sulks because the context is different.  Carrie takes a break, so Mr B*g suggests doing the same thing, and suddenly the marriage is in trouble.  Talk about an over-reaction.  As far as I could see Mr B*g was just trying to do what she wanted, but he didn't appreciate the neurotic nuances that she would read into his every move.  I think he just wanted a quiet uncomplicated life on the domestic front - aren't most men like this?

After a long day at the office he just wants to snuggle on the sofa, but Carrie is ready to party.  He says fine, off you go, but Carrie insists that he go too.  Then they have to come home early when Mr B*g gets too friendly with another woman.  And not like that either, he is just enjoying her company and smiling at her!

Am I right? Is there a mis-match here in expectations?

Things might have been very different if SATC 2 was set in Dublin, as everyone marrying in an Irish Catholic Church is required to take a pre-marriage course.  Perhaps expectations are covered in this: I wouldn't know as we got married in my home town in Wales.  There hadn't been a wedding with a full mass for five years so the priest - Father O'***** from Dublin - was even happier than the bride and groom on the big day.  He would have done anything for us...

But sadly not enough to ensure that my marriage would last: As you may have noticed, it is over.  And I'm sure there was fault on both sides... You see when I said 'yes' it was cos I was in love, and we seemed to like all the same things, so I was being a bit logical.  But expectations of marriage?  Wondering about that never crossed my mind.  Even though I should have realised that our differences might cause a problem at some point, what with me being from a different country and completely undomesticated and that - though I was straight up right from the start and refused to iron his shirts even when offered large sums of money.  

Of course when you throw special needs into the marriage mix, everyone's expectations get completely scrambled.  I wonder how Carrie would have dealt with that challenge?

Into the red zone

Is there such a thing as a stressometer?  Well if there is, I'm in the red zone.  It's mad, cos most of my health issues from earlier in the year are now resolved, and I thought I'd be fine then....maybe middle age makes you less able to deal with stuff.  I'm just telling you this cos I'm struggling to find anything entertaining to write about, and so my little blog may be  neglected for the next while.  I know that there are so many people in far worse situations, but at the moment this is all too much for me...

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CD is part of the problem.  Thanks to my many friends on Facebook, I have removed my head out of the sand in which it was so deeply buried, and together CD and I have chosen a new school where he will be in an Asperger's outreach class.  That deals with his education, but there are lots of other issues that worry me. So I'm on the phone everyday attempting to find out what he needs, and then trying and trying and trying again to organise appointments.

But I suppose it's my housing situation that is pushing me over the edge.  As many of you will know, the kids and I have not lived in the family home since 2006.  Where we are living now no longer works.  Not when you have a 13 year old in a wheelchair anyway.  Smiley is now sleeping in the dining room (which is also the only way to get to the kitchen) and I have no shower facilities for her (her school helped out by organising three showers a week for her during school time, but this was supposed to be just a temporary thing). Even the two steps up to the front door are now a problem. It's humiliating being in this situation after 25 years working. 

Basically I'm in separation limbo.  All thanks to the recession in Ireland.  Earlier this year, a plan was agreed that looked as though it would work, and I would be moving with the kids into somewhere suitable at the end of June.  But I hadn't reckoned with CD, the legal people, the tax people and anyone else I've forgotten.  

It is June now and I see no solutions....

It's not having what you want....

It's wanting what you've got!  With thanks to Sheryl Crow's Soak Up the Sun. 

I know I've been a bit moany and sad lately.  Been wallowing, and this was not helped by some of the articles about carers - written with the best of intentions I know - to promote National Carers Week in June.  They suggest that carers are unappreciated and unsupported, depressed and despairing.  Is that how people view me?

Now I know that some carers have a really tough time indeed, but you know what?  My life isn't so bad.  At all.  So here are some of the things about being a full time carer that make me happy :

I see as much of my children as I want :D

I don't have to commute, except to appointments...

I can wear what I like.  And for the price of a 'good' suit, I can buy a whole wardrobe of clothes from Penneys.

I can work on my blog, with the excuse that I'm 'keeping my hand in', for when I manage to land the perfect job.

I can say I'm bored, tired, stressed out and depressed and people will empathise - a privilege not given to many people in paying jobs, such as teachers!

I am my own boss.

I have time to renew old friendships and make new ones.

See, I definitely want what I've got.   Hope you do too....

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