Saying Yes to Respite

It took me 12 years to say yes to respite for Smiley.  When she was little we were offered Respite in this sad little house with a group of adults.  So that was a 'no'.

Nor could I see the point. Smiley is just such a sweetheart, and while she was small and portable, you could bring here (almost) everywhere.  It seemed unnatural to be parted from your child, and so it took years of nagging from my social worker before I reluctantly agreed to try Respite again.  This time with a gang of residential kids she knows from her school: basically she was just wheeled upstairs, so she knows the staff and the rooms. 

And Smiley has grown up in the last three years.  She's now the size - and weight - of a small adult.  I know that looking after babies is a 24 hour job, but you don't expect to be doing the same stuff when your baby is 13. 

Between showering, dressing, feeding, toileting, physiotherapy, the dreaded hoist that you need to use for every transfer,  strapping her wheelchair into the car, not to mention outings and entertainment, her care takes up a very large chunk of my day.  I adore her, but looking after her is physically very tiring, and as we both get older, it gets harder.  In common with all parents who have children with special needs, I’m trying to deal with challenges that I never expected to face.

She’s in Respite for one night right now.  And for the first time ever I was looking forward to it, and I don’t feel guilty about saying that.  After 5 weeks of caring for her  24/7 while the school was closed, we both need a break.  She needs time with friends, which I couldn’t provide over the summer.  Her brother and sister need time with me, and the chance to do stuff that we normally can’t.  I organised two activities today.  We had lunch on the run: no need to track down somewhere that both served mashed potato and had a decent-sized disabled toilet.  Yes, some are smaller than others!

A few weeks ago parents, carers and their children took to the streets of Dublin to protest about cuts to respite.  I went on the march, but now I understand much more clearly how they feel, and I wonder how long some of them have been caring: 20, 30, 40 years?  Caring is relentless.  You have to get up and do it every single day.  Except when your child is in Respite.  Tonight I feel light, like I have lost 2 stone.   I also feel privileged that Smiley has somewhere to go for Respite that works pretty well.  And that’s the key to it : you do need to be happy with the Respite arrangements.  If you are, then saying yes to Respite can be a really good thing, for the whole family.


I wrote this post last night as I had a lot of spare time!  Respite did not go as well as I would have hoped: yes she was well looked after, and yes I was told that she was happy.  But when I arrived to collect her at 4pm she was asleep and gently snoring.  Apparently she had stayed awake and giggling until 3am.  From checking the notes it looks that thought no-one looked at her communications book or the step by step instructions on what to do if she can't sleep that I had included in the carefully packed bag: I don't think it was opened except to take out clothes.   I've told them before to ring me at any time as this is not the first time she has struggled to sleep in Respite.  Also I was told that she seemed to be constipated.  Explained this one before as well.   It's because she likes to use the toilet, and did so very enthusiastically shortly after arriving home.  Mothers are always right aren't they?  No wonder it's so hard giving over the care of your child to some one else...

Just a small note: I know that I have written on this topic before, but that was a long time ago when I had almost no readers.  Anyway my view of respite is changing over time, so I reserve the right to write about it whenever I want!

School rules: Made to be broken?

In my school the issue was hair.  To be precise: loose hair.  And in those BC days (before conditioner) loose hair was pretty wild.  The school prefects used to prowl the corridors, and lurk behind corners armed with hair-snapping elastic bands.  Your way would be blocked until every last hair was safely tamed into submission. 

It was a school rule that hair should be tied back neatly, but most of the time the rule was ignored.  The army of elastic-band wielding prefects was only called upon every few months.  After a couple of days the campaign would end, we all sighed with relief, and then went back to looking like Kate Bush wannabees.

I was reminded of this yesterday when I heard about an Irish boy who has apparently been told that he can’t go back to school as he has dyed his hair.  Worse, his family claim that plenty of girls at the same school have dyed their hair: hardly surprising really since they are teenagers - no-one saw my natural hair colour after I turned 14. 

So it seems that very little has changed in the *ahem* 30 years since I left school.  And I have had similar issues at times with the schools that my kids attend - brilliant as they are most of the time.  But again there are lists of rules that simply aren’t enforced. 

This does not make any sense to me: I thought one of the basic rules of parenting is to have rules, clear consequences and always to follow through.  Why don't schools do this?

Could this be contributing to the problem of discipline in schools?

I resent being told what to do and always did, even as a child.  But I will follow rules if I think they are fair, and apply equally to everyone,  So guess what?  I don't make my kids stick to the school rules on dress and appearance, because other parents don't either.  As for the schools, perhaps they do not have enough staff or enough time.  I think it would be totally unfair on my kids if I made them different to their pals by scrubbing her face every morning (Angel) or insisting on the school regulation scratchy jumper (CD).

But meantime, the kids are learning that rules are there to be broken.  Perhaps this is why some people in public life seem to believe the same thing?

So what do you think? Are school rules made to be broken?

Meeting people in the real world is important too

Before Bebo, before Rollercoaster, before Facebook, meeting people meant actually meeting them.  Face-to-face.  And for parents of kids with special needs, it is just soo important. For support, understanding, and finding out all the useful information that the system doesn't tell you.

So I'm doing another promo post for the Rainbow Junior Arch Club, because we're about to start up again, and looking for new families to join us. We aim to provide fun, activities and friendship for children with special needs, and an opportunity for parents to relax and chat, and siblings to play.

If you are based in the North Dublin area and have a child with special needs, why not drop in one Saturday and meet us. The Saturday activity club is run by volunteer parents and we also organise trips and weekend away for the whole family. We open on Saturday 4th September at 3pm. Check out the club website here.

We try to be inclusive: our children have had diagnoses of Downs Syndrome, Cerebral Palsy, Autism, Prada-Willi and Angelmann Syndrome, or no diagnosis at all. But we know that our club does not suit everyone, and if you can't find a club that works for your child, why not set one up yourself? Yes there is work involved, but once you have a few like-minded parents and a venue, it's not impossible. Though it helps to have the backing of a national organisation like the Federation of Arch Clubs. This provides advice on all the boring-but-essential bits like child protection policy and insurance.

I know I've said it before, but when my kids were little, it was a Saturday sanity saver having somewhere to go where I knew they would be safe, happy and accepted, and I would get an opportunity to be with other grown-ups. I just want other families to benefit as well.

 Pictures from a family weekend away to Wicklow

Banoffee Pie - the recipe

Some of you wanted to know how to make Banoffee Pie after I wrote about Smiley's reaction to one made by my talented SIL.  So I asked very nicely and she has given away her secret recipe - for free! 

After all, what better time than the end of the summer holidays to bake something really special for the kids?  It just might stop them thinking about the dreaded 's' word, ooh for at least 30 seconds....and the pie may not last much longer than that.

For the caramel sauce:
1 (397g) tin of condensed milk
397g can condensed milk
175g (6oz) butter
75g (3oz) caster sugar
350g of digestives biscuits 
150g of melted butter
1 pot of double cream
2-3  bananas, sliced
1.  To make the toffee sauce, there are 2 methods:
The easiest is to boil the tin for 2 - 3 hours. Keep checking that the tin
is fully immersed in water. You will need to keep topping the water level
up.  The longer it is boiled,  the  thicker the caramel. 
A quicker method is to melt the butter and sugar over a low heat until the
sugar has dissolved and the mixture is golden in colour. Use a thick based
pan to prevent it sticking.  Add the condensed milk, stir constantly and
bring to the boil. Keep stirring until the caramel is thick and golden 
(for 2 - 4 mins). Cool.
2.  Melt the butter in a large saucepan and stir in the crushed biscuits
until the two bind together. Press the mixture into the base of cake tin
or pie dish. Chill.
3.  Slice the bananas and arrange  on  the biscuit  base.   Spread the
cooled caramel over the top. Whip the cream until it is stiff and pour on.
Grate chocolate on the top.

How can you resist this?  Just hide those bathroom scales and enjoy :)

A funny old summer in Aspergerland

A lot of things have changed this summer: we moved house, CD stopped playing outdoors with other children, Smiley got too big to bring to the beach, and as for Angel?  Well she's almost grown up, so there were lots of sleepovers, her first music festival experience and a trip to Biarritz and a French course holiday.  And there's still two weeks to go...

Since the interests of the other two are mutually exclusive:

CD likes staying in and playing on the computer.
Smiley likes going out and shopping.

Something had to give, especially while Angel was in France. It was me: so we upped sticks to Wales for nine days, where my family could help ensure that both children got to do a little of what they wanted.... and I got to do almost no cooking and even less washing up *celebrates quietly*.

So how to manage a holiday with the pair of them? Well Smiley just needs lots of time, attention and shopping trips, while CD needs a few rules: up, dressed and breakfasted by 10am, at least one outing a day, and bedtime by 9pm.  Smiley was fine, but how did CD get on?  Some things went really well, especially a trip to the local cinema.  The signs were not good that afternoon though:

"Mum, I don't want to go and see the 'A' Team now.  I've changed my mind."

There was no Plan B, so I insisted.  Especially as his cousin had arranged to come to the cinema as well, and Granddad has agreed to mind Smiley for the evening.  

Even on the way CD was saying, "What if I don't like it?"

"You'll just have to sit through it," I said.

So we went.  It was a tiny little cinema, but once the film started none of that mattered.  He loved it!  And was so vocally enthusiastic that I thought the scary-looking man two rows up was going to lose it with us.

On the Friday after we returned from Wales he had a final session with the one person I've found who was willing to try and help him.  But there was no point in going on with the programme for the moment, because while he is happy to listen, he will not participate.  He has taken on board some of the material, and has changed some of his behaviour: especially towards other people, which is clearly a good thing.

But in other ways his behaviour has been getting more and more Aspergerish: and there are new challenges every day.

I now have more questions than answers about life in Aspergerland.

Some things I have discovered:

He likes to 'nest'.  Though I think this is a male thing anyway: relationships always seem to mean waving goodbye to fun nights out and hello to 'Wire' box sets and 4-packs of Carlsberg.  CD has his little nest in the back room of our new home and he just recreated it at Grandad's house.  He would happily stay there all day and just come out for meals. 

He will listen to professionals but he doesn't want to talk: especially not about himself.  Typical male again perhaps?

There are people and activities that interest him: it's just the finding of them.  He loved his summer camp, so we'll be back there in the autumn for more courses.

He will not admit to liking anything unless he was involved in the decision: he still says he hates this house, and is trying to negotiate a date when we can look at moving somewhere else: to a house of his choice.

The house move was a game of will we/won't we that nearly caused me to lose my reason.   And I don't plan to do it again - the girls and I are loving being back home, and CD seems happy during the day, it's just at bedtime that he starts.  I'm sure there will be more changes, but hopefully no more really big ones.  At least for a while.

Banoffee Pie

She just knew.  Hopefully she understood, but maybe it was the excitement on everyone's face, or the reverential way the dish was carried into the room.  But Smiley just knew that the plain white dish contained something she wanted.  Something really nice.

We'd had a lovely lunch, and Smiley's cousins had brought the dessert with them as a last-day-of-the-holiday treat from their Mum. 

The dish went on the table, and the cream was carefully spread on top; Smiley's eyes following every luscious spoonful.  Finally, it was ready to be served.

Her young cousin was in charge, and getting out the first piece was a struggle.  Smiley started to giggle and her head was bobbing in anticipation of the delights ahead.  But somone else was also looking very excited...and so the first piece went to Grandad.  Smiley turned her head and watched with yearning as Grandad got the first taste.   Finally it was Smiley's turn.  Her mouth was open and ready as the plate headed towards her.  Then there was a contented silence for a few minutes.

Banoffee Pie.

After Banoffee!

Welsh cakes and other wonders

10 things I like about Wales - since I'm visiting and all ...

Welsh Cakes: warm and crumbly from the griddle, yum!

Road Rage, by Catatonia: just love those delicious rolling 'r's

Service Stations: yes I know the fuel is dear and Jamie Oliver would not approve of most of the food, but it is sooo comforting the way they pop up every 20 miles or so, just in case someone in the car needs something.

Welsh dragons: no I've not seen one yet, but with that flag they must be nesting somewhere in Snowdonia, no?

Mountains: talking of Snowdonia, the Welsh mountains really are gorgeous.

Rhossili Bay: Apparently we only visited 3-4 times, but this beach holds the happiest memories of my childhood.

Dylan Thomas

The Health Service:  Still amazing after all these years... I'd lost my repeat prescription but couldn't cancel the holiday so just went to a local surgery here in Wales with a pharmacy receipt.  24 hours later and there was three months supply of my medication waiting and available for me to take away at no cost. Nearly saved me the price of the ferry,  and oh it was lovely to feel looked after again, that people cared about you and weren't just concerned about making money out of the sick.

My wonderful Welsh friends: still in touch after 30 years.

My family :D