Eddie and the Vikings

No it's not the name of an ironic post punk band, just a neat summary of an afternoon of fun for CD and one of his new friends (the NF).  Usually when friends come round, they are ushered into the playroom and only emerge for feeding and watering.  But Thursday was different.  An outing was involved.

To explain, I need to go back two days to Tuesday, when there was a rare family trip into town.  CD was down to his last long-sleeved top, which was in the wash.  So he finally agreed that he needed some new clothes: he hates shopping, but he won't wear anything that he hasn't chosen, and it has to be tried on to make sure that it passes the 'comfy' test.

During the trip he was startled out of his monologue on, I think, W*rld of W*rcraft, by a roar from the road and looking up he saw two of these:



And their passengers were waving their fists in the air and roaring 'fiercely'.

"I'd like to go on one of those," says CD. So Blue Sky instantly springs into action: this is not a computer game, it's an outing.  And if you're read some of my previous blog posts you'll know that every outing is a milestone for a boy who normally only feels comfortable and secure at home, and now in his new classroom as well.  The timing was perfect: it's the mid term break, and Smiley is in respite for two nights.

Fast forward to noon on Thursday and the NF arrives.  After about an hour on the Wii, we head into town for lunch, possibly the first DS-less meal out for about 5 years, and it went pretty well, mainly because the NF is a mine of interesting information.

"Did you know that there are restaurants in China where the omelets are cooked by robots?"  No, I didn't, and I'd worry about them using 3 in1 instead of Olive Oil.  I also learned that you get 'brain freeze' when you eat ice-cream because the cold shrivels the blood vessels.  I never knew this!  Then once the ice-cream has all been eaten, the conversation moved on to games...the NF is a match for CD who kept butting in with his "Can I tell you something?" line, even when he has nothing to say.

There was also an earnest discussion about this sign on the wall, which made no sense to either boy, once I'd explained that Eddie was not a charity:

Lunch was followed by a stroll across the river and down Grafton Street, otherwise known as Distraction Street:  every 10 metres or so CD, and particularly the NF, would stop to look at another busker or street artist.  They were very taken with this harpist...


In the end we only just made it to the meeting point on St Stephen's Green for the Viking Splash Tour*.  This is a light-hearted tour of Viking Dublin using a World War Two amphibious vehicle (a DUKW) and featuring Viking helmets and a trip in the canal.  It all started well - apart from heavy traffic, 4pm not a good time to see the City - we had a very funny and informative tour guide, the boys roared with the rest of the Viking 'crew' and even wore their helmets.


Then the guide mentioned that we would be entering the water shortly and the excitement in the rear seats rose to fever pitch.  Was it 'Viking Splash' time?  At the dock we put on life jackets and CD started to pray, whether for a big splash or a safe return to land, I never found out.  



Sadly there was no splashing on this trip - too cold perhaps?

By then I was starting to worry about getting home by 6 to meet the guy who was due to fix the hob after Tuesday's gas leak - yes it's been an eventful week!  No chance of that with CD and the NF.  As soon as the DUKW stopped, the NF was underneath checking out the propellers and asking how the steering worked while CD watched with interest.  The verdict: "It was brilliant, Mum, but I really wanted to get splashed!" 

And the gas man? Well he was late too...in fact he still hasn't showed up, so I'm learning a whole new way of cooking...

*This is not a sponsored post

Helplessness

I got a fright this afternoon.

It started really well.  Today is a bank holiday in Ireland, and it's not raining.  So for a treat I took all three children to the local pub for lunch. This does not happen very often now that Angel is 18, and she did walk a little ahead with headphones firmly attached to her ears.  But we had a lovely lunch, not cooked by me - hooray! - and all the plates were cleared.  Funny how that almost never happens at home.  And really I'm not such a bad cook....

Anyway we left the pub and the sun was shining and we were strolling home full of scrummy food when I felt a severe jolt as I was pushing Smiley in her buggy over one of the many cracks in the pavements hereabouts.  Then shockingly the buggy start to topple over....luckily - and I don't say this lightly - Angel ran round and held up that side.  We looked down.  And really wished we hadn't.  One of the bars that supports the structure of the buggy had sheared away, leaving no support on the front right hand side to keep Smiley and the buggy upright.  How we got her home I don't know, I was shaking and nearly burst into tears at the fifth near disaster over yet another bump.



Again - luckily - I always keep equipment in back-up and so she is currently sitting in the chair that she uses for school.  The problem is that this is completely useless in the cold and wet - it does not have a rainhood, foot muff, portable playtray or shopping net.  

But if I didn't have it, Smiley would be stuck in bed for the week, with perhaps some play time on the floor.  That would be her mid term break.

It brought it home to me just how helpless she is, and just how dependent I am on a back that's already damaged, and equipment that realistically could break at any time.  Her buggy cost over €1,000 so I just hope that it is still under warranty.  I can't give her the life that she is accustomed to without it.

I wish she didn't have cerebral palsy, or at the very least that she could have stopped growing 5 years ago, when I could still take her swimming in a public pool, still put her on the slide in the playground, still drag her buggy onto the beach and lift her into the sea.  Cerebral palsy is cruel.  Most children can do more and more as they get bigger, children with cerebral palsy can do less and less.  Or so it seems.

So as I did once before, I'm asking the following question:

Does anyone out there know how to ensure that teens and adults with cerebral palsy are able to live life to the full?

A Halloween Hoolie......for kids with special needs

A hastily arranged Halloween Hoolie was a huge hit yesterday at the Rainbow Junior Arch Club for children with special needs and their families.  As you can see below....

On a more serious note: We need more families to join, to keep the club vibrant!  So if you know anyone in the Dublin/Fingal area who might be interested, please spread the word.

And I will get back to proper blogging again soon.











I have a 'job'

Sadly it is not a paying job.  And it only lasts for a few weeks.  And I've done it before.

The PACUB campaign to save child benefit is back in business, and I've offered to help out.  There's only a few weeks left now until the next Irish Budget, due to be announced on December 7th.  Huge cuts to public expenditure are planned, and child benefit is likely to be targeted once again. You can read about PACUB here and here if you're interested.
 
So my blog may be a bit neglected for the next while....not only will I not have time, but actually working on the PACUB campaign is one of the most exciting and challenging 'jobs' I've had in a quite a while, so this blog feels a little tame by comparison!

But I will be back...

Not my children

This post is for Week 31 of The Gallery: Favourite Photo.

And where is my favourite photo?  Well it's at the top of my blog, so I get to look at it a lot.  And I still love it.

The photo was taken one winter's morning on Morriscastle Beach in Co. Wexford, Ireland.  Here I spent the happiest days with my kids.  We used to go down there all the time until Smiley got too big to pull her wheelchair onto the beach.  But we still have so many happy memories.

I'm a versatile multi-tasking Mammy

And now a versatile blogger as well! I was tagged for this award by Kathleen, who writes a great blog at Autismherd. The rules are that I have to bore entertain you with 7 things about me and then pass this on to 7 other bloggers.

Do any of you really want to know more about me? Probably not, but it would be very bad manners I think to ignore an award, so here we go.....

1. I am now one year old. Well my blog is. I started it so I would have something entertaining to do as the PACUB campaign to save child benefit was finishing. It's been fun and I've learned so much and made a lot of mistakes, still at that of course.... And for the 99% of you who never read my first post and wondered about my blog’s rather odd name, it comes from an old saying of my Granddad.

2. My eyebrows. During the 1970s eyebrows gradually vanished. Mine just grew more bushy and straggly by the year - much like my hair - until I knew I had to do something about them. But being impatient, I didn’t bother to find out how you pluck your eyebrows. I just went at them with the tweezers, thinking I was great altogether.  On arrival in class the next morning I was greeted by open mouths and then the girls started to titter. I’d plucked them the wrong way......from the top. I’m not sure what happened next, but I hope I got a very long fringe cut in....

3. I like to see the world in soft focus and apparently that's a good idea! It all started when it was discovered that I was very shortsighted at the age of 8 and presented with the most disgustingly awful NHS specs you've ever seen. So I only wore them to look at the blackboard and later to drive. People got used to me squinting and passing them in the street. Eventually I had to wear lenses/glasses all the time - to make sure I was chasing the right toddler! But when I tried full strength lenses, it was a shock. Did the world really have so many sharp edges? I actually felt sick and insisted on a much lower strength - but still legal. And so my eyes have had to work harder and have deteriorated less, I found out this week....and everything and everyone looks soo much more attractive in soft focus :)

4. I don’t wear lipstick, ever. It makes me look like a .......

5. I used to be on time for everything. Now my middle name is 'late'.

6. Watching too much TV is bad for your career... From all the outtake programmes I thought I knew how TV people behaved, there are always lots of takes aren't there? And giggles and fluffing your lines. Well that's what I thought. So sadly after one session recording a piece as a continuity announcer - which took a loooong time - I was never invited back. TV career: finished!

7. There's lots of funny stories that I can’t tell you about - though my friends might - cos I have a rubbish long-term memory. I look at it as proof that I’m not old yet! I also burned ten year’s worth of diaries on my 18th birthday, just before leaving home. Kinda regret that now, though since pseudonyms were not involved, perhaps it’s just as well.

Now I'm supposed to find 7 blogs to pass this onto, but sadly a lot of the blogs that I enjoy don't seem to be active or to take part in awards like this, so I'm going to chicken out!  


About the girls

This week was all about the girls...so I'm going to try and enter this post and the (not good) photo for Tara's Gallery at Sticky Fingers, since it fits the theme...

"Ah go on smile!"

Tuesday was the first parent teacher meeting of the year for Angel. As it's her final exam year I'm thinking there maybe more to come. In Ireland my experience is that secondary school parent teacher meetings are designed for maximum inconvenience and annoyance: even though the teachers are mostly really nice. A starting time of 1.10pm means that anyone with a normal job has to skive off for most of the afternoon, while anyone with more than one child has to beg bribe arrange someone to collect/meet their other little darlings. You go to the meeting armed with a list of teachers to see - 7 in my case - and this list almost certainly excludes the one teacher who has asked to see you....So you have to work that one out. Each teacher has to be queued for, and there are long bottom-shuffling lines of awkward parents trying to sit comfortably on chairs that were clearly designed for size 8 teenagers. When you get to the top of the queue you get about 5 minutes with the teacher. Well I do. I'm always stuck behind the one parent who manages to ask questions about their child for 20 minutes. TGF Twitter! Meeting the teachers you're always wondering if your child has managed to fit in any work between parties and laptop time. But it seems she has, so despite threatening to self-combust several times during the long long afternoon, when I finally left it was with a happy motherly glow.

Wednesday and Thursday were all about Smiley and her cerebral palsy. On Wednesday I met with her orthopaedic team to look at her legs, which are 'windsweeping', which is like one leg crossing over the other.  The prescription? A shot of Botox (I wasn't allowed any), an extra set of exercises and a sleep system, to keep the legs straightish at night.  On Thursday I met her paediatrician to discuss her development.  She is now weighs 43.8 kilos, or 7 stones in old money!  And is not likely to grow much more *breathes sigh of relief*.  Apart from that, she's changed very little, just got bigger and smilier, so everyone happy :D

 

It all becomes clear when you talk about it


Today was the first meeting at CD's new school.  Was I nervous?  A little.  Was I prepared?  Well I am feeling more motivated at the moment so I arrived with my list of points, but minus a pen.  I hadn't been back to the school since I enrolled him last term so it was good to see it again.

It's not like any other school I've come across in Dublin: there's a uniform yes, but the teachers do not mind if your child won't wear the jumper (too scratchy) or the tracksuit (too soft).  There's big classes and small classes (outreach units) and the children migrate between the two: so CD is now joining the big class for Maths and other boys are visiting his class to take part in science projects.

There's no Miss Brodie at this school: these teachers have names, and we all get to use them.  I didn't even know the surname of CD's teacher until this week!  I also have contact details for her and the principal.  And when I email them, they reply.  It's like an informal version of the home-school communication diary as promoted by Jazzygal.  But a face-to-face meeting with his teacher in September, is better than anything I have experienced before.

I'd forgotten how cheery and enthusiastic all the staff are at this school.  We met in the staff room, and people popped in and out, but somehow it was never a problem.  Our conversation meandered this way and that: we talked about CD's difficulties and how he is getting on in class. As a lone parent I can get bogged down by the day-to-day stuff -  and I get used to his behaviour!  So it's good to get a perspective from someone else who spends a lot of time with him.

He's doing pretty well, it seems: he listens to everything and is now earnestly advising the other boys on how to manage their behaviour - apparently this does not always go down too well...

My only niggle is on the academic side, but I understand that the boys need to learn to learn first.  There needs to be calm and concentration in the class, most of the time anyway.

I've also managed to persuade him to attend one extra-curricular activity: Football? No.  Hip hop? No.  My son is going to attend a course on 'Myths and Legends'.  Where did I get him from again?