Night Clubs and Nostalgia

Pressing my nose against the glass I could barely see through the fug of smoke and hormones.  I was outside the local cafe, the hangout for all the cool teens, a shy awkward 13 year old with pigtails and glasses, but I wanted to be inside.  I wanted to be part of the fun.  

Fast forward a couple of years and I was a regular in that cafe.  That's where my teenage social life started.  And our town was not a bad place to be a teenager.  Apart from the recording studios and the parties, there was a cinema, lots and lots of pubs, festivals, carnivals, shows, youth clubs and for a while a night club of sorts once a week on a Friday night.  That was my first night club.  Lots of Chic and strobe lights and disco balls and shiny dresses with slits up the sides.  It was the same people every week, and I knew most of them.  I loved it.

Sadly pressure from local residents closed it down since and many of our other teen hang outs have gone too.  Funny how there has been more trouble from teenagers in the years since.  Coincidence?  I don't think so.

I got to thinking about night clubs after Angel returned from her post exam holiday in Majorca rhapsodizing about this giant night club, where she and ten other friends spent most of their week away.

I also went to a few clubs like this.  At one in Manchester I was the only person in the entire place dressed in black.  I didn't stay too long.  

I was also insanely proud of my Hacienda membership card, as I *may* have mentioned before, but the club wasn't my favourite place to go.  Apart from the night I saw a (very short) New Order set there, it was actually a bit dull.  In London, friends took me to Heaven and the Camden Palace.  But I just found them large and lonely.  There was also a night club at the end of my road in East london - the Shannon - but perhaps the less said about that the better!

Once I married and moved to Dublin going to nightclubs seemed a bit pointless.  But I do remember the Cathedral Club with affection - complete with a crucifix - or was it a dragon? - overlooking the dancefloor, which seemed very daring in late 1980s Catholic Ireland.   Now I am single again I have been persuaded to visit the odd night club...I've had a good laugh with my friends, but without the fuzzy rose-tint of smoke, short sight and lots of alcohol, they just look a bit sad...

I still like the idea of clubs where I know people, so it can take an hour to walk around chatting and dancing and making new friends.  And if they play the music I like, even better.  So my favourite nightclub was that well-loved but off-beat Manchester, institution, the Cyprus Tavern .  It was somewhere I could walk in alone, wear black, find friends, dance myself stupid and get my dinner - they had a late licence for serving chips...Happy days :)


Why the Irish Health Service is in such a mess

Okay so I hope you're not going to be disappointed now.  I think there are a million reasons why the Irish Health Service is in such a mess.  This is just one example, but if every little bureaucratic muddle like this one was reorganised and handled efficiently, a lot of money would be saved, and the time of well-paid, highly qualified healthcare professionals would be better spent...

This is my (latest) story

My son has not been sleeping well.  Not an unusual problem for children with Asperger's or Autism.  So one of his therapists prescribed melatonin.  No problems so far.  It was after 6 pm and I did the rounds of the late night chemists to find one that stocked it.  I succeeded.  The first shock was the price, but the pharmacist was lovely.  She must have noticed me blanching and suggested I apply for a long term illness card for my son - one of the schemes in Ireland that provides approved medicine and equipment for free for children and adults with long term medical needs.

She gave me the application form.  So the first challenge was to get it filled in and signed by the therapist who had written out the original presciption.  You can't just send the prescription in with the form.  That would be too easy.  It all has to written out again.   Luckily a follow-up appointment had already been organised.

So that was done and posted.  The next stage was really efficient...I received the long term illness book the following week.  I did a little happy dance :)

But then I discovered that even though I had the prescription and the book, I now had to go to my GP to get him to write the prescription INTO the book.

Next stop - the pharmacy.  There was a different lovely pharmacist on duty.  She looked at the book and told me that unfortunately she needed to confirm that the medications written into the book were allowed by the HSE.  These are the medications that were put on the application form.  Are you following me?  Two different departments perhaps?  One approves the card based on an identified illness and another approves the medications after you've got the card if they're on THE LIST.  At least this is what I suspect.

As it was a Saturday she couldn't ring the HSE, but gave me a small bottle of medication to tide us over the weekend and promised to make the phone call on Monday.  She did.  And just as I was groggily leaving another dental appointment I heard the good news that all was finally approved.  So now I'm heading out into the Dublin floods to collect....

Finally if you want to read something funny instead, head over to Northern Mum.  Just put the coffee down first...

Targeting the most vulnerable: Smiley's School

I was at a meeting last night.  It wasn't a political meeting.  It wasn't a meeting full of 'bleeding hearts' or woolly left do-gooders.

It was a meeting of a small group of parents, all of whom have children with complex special needs.  And I left it feeling very tired.

The first bombshell was a rumour that the Government is considering means testing Domiciliary Care Allowance, the payment that carers get for children with special needs.  It's a universal payment, a concept that seems to be out of fashion right now.  But they provide the ultimate safety net and help in a small way to pay for all the extra costs of rearing a child with special needs.  So important right now, when all other income is under threat for so many families.

We heard about the effects of staff shortages.  Limited nurse cover for children with complex medical needs and even more limited replacements due to the ban on recruitment in the public sector.  Is one nurse for every 16 children really an acceptable ratio?

Transport for the children is apparently being outsourced to save money.  So during the snow the school buses did not run, but the private ones did - otherwise the drivers did not get paid.  Not an issue for me, but a worrying change of priorities perhaps.

A haphazard approach to respite with some families getting lots - especially those that shout the loudest - some getting a little, and some getting none at all.

An extra child in some classes means that there is little one-to-one time for each child.  And all the group activities have to run to a tight schedule.  So if one child has an accident or a meltdown, the timetable has to be abandoned, and the children may have to sit and wait until the crisis has passed.

Each child used to be taken out of the classroom for individual speech and language sessions, occupational therapy and physiotherapy.  Now these therapists are mostly available for consultation only: the actual work is done by the teachers and SNAs .... on top of everything else.

Swimming used to be every week, and the school has its own pool.  But the older children only get it once a fortnight now - not enough time and not enough staff.

Despite this the school is still doing a fantastic job.  I do not know of anywhere else that would give Smiley so many opportunities to fulfil her potential and enjoy her life.  I do worry about the younger children who may miss out on all the intensive help that my daughter enjoyed.

The cutbacks are not desperately serious.  Not yet.  They just make me feel sad.  I know that Smiley still smiles a lot in school, as I get to see the photographs.  And she still gets excited when I tell her: 

"You're going to school now, on the bus!"

Long may that continue.

And just one more thing .... as I was writing this, something heavy fell through the letter box.  It was galling to find that the envelope contained  two glossy reports produced by the organisation that now runs Smiley's school.  That did make me angry...perhaps they were produced cheaply, but are they really needed at a time of severe cutbacks?

Celebrating niceness: a #specialsaturday post

Being nice is seriously underrated.  

"She's very nice," damns with faint praise.  As though you can't think of anything else to say about her.  People have to be clever or cool or fabulous it seems.  Nice doesn't cut it any more.  I don't know why, because people who are nice are the people who brighten up our lives.  And this week I'd like to thank the following...

...I was late as usual on Wednesday getting to the #Oct12Tweetup for a rare night out but Jazzygal and Nan-P waited patiently outside the pub for me to arrive.  The tweet up was a chance to put faces to the names and pseudonyms of some of the people I follow on twitter - a really interesting evening!  And two people said unexpectedly lovely things about my blog. 

...Coffee on Friday morning organised by Carol and Tori.  Sorry I couldn't stay longer.

...Smiley's social worker who arranged an impromptu meeting with the head of respite to discuss my concerns - which caused me to cancel her monthly breaks back in May.  (I was at the school for her IEP).  After looking at the records, it seems that she was so happy - and smiley - that the staff thought that she wasn't ready for bed and were allowing her to stay up very late.  It's never easy to sleep through in the respite dorms, as during the night there are peg feeds to be sorted, children to be changed and medicines to be given.  But it seems that Smiley was only getting about 4 hours sleep - no wonder she was cranky for days afterwards!  In future she will be put to bed with her pals at 8.30 or so.  And respite will start again in November.

...One of my best friends who still comes every week to help with Smiley's physiotherapy programme.

...My Dad who forgot about his own problems to do the fatherly thing and tell me to go and get myself sorted even though I had a week full of appointments for the kids.  And my friend who fitted in therapy appointments for me even though she is the busiest person I know.

Looking back, it's wonderful to realise how many people were nice to me this week and what a different it made.  What about you?

This post was written for Wendy's specialsaturday initiative to help raise awareness of autism and other special needs.  On facebook at  specialsaturday or #specialsaturday on twitter. 

My ‘Blogging for Therapy’ post for Netmums

It was a lovely surprise and honour when Kate from  asked me to contribute a post for a ‘Blogging for Therapy’ week on the Netmums blog  Netmums is the UK's fastest-growing online parenting organisation with over 1 million members and 4 million visitors.  Gulp!  

So here it is if you want to pop over and visit:

The Boy who cried Wolf

Aspie boy loves wolves.  There is always a wolf calendar in the kitchen that he can see from his seat.  It's a tween version of the daily schedule that many parents use with children on the autistic spectrum.  When he was younger, one of our favourite stories was the Boy who cried Wolf.  He loved it because it was about wolves, and I loved it because it emphasised the consequences of telling lies.  I have a problem with lies and liars.  I can only recall telling lies myself on 2 or 3 occasions and I felt terrible afterwards.  Perhaps PR suited me as a profession because I've got good at spin, in order to avoid telling actual lies.  

Perhaps I did not read the story enough.  I thought that aspies didn't tell lies.  But it seems that he has been doing exactly that.  Or, in his own words, 'half-lies'.  And now he is seeing that his lies mean that no-one now knows whether to believe him or not.  Even me.  You see the problems are at school and I'm getting one story from the school and another from my son.

I knew that school would be more difficult for him this year and I tried to prepare him.  All his friends bar one had moved on to secondary school, the teacher he loved has left and more work is expected of 5th year pupils.  So I was anticipating problems.  But not lies.

Almost every day he came home saying how much he hated school, tales about all the trouble he was causing and begging me to do something about it.  Now perhaps I should have noticed that the school was not contacting me, but I guess I was a soft target as I'm so worried about my Dad at the moment.  So I rang the school, emailed the school and even turned up one day, but the principal was too busy to see me.

Finally I received a curt note from the school.  This is an extract from it:

**** continues to tell you lies. I don't know how many times so far this year **** has told you complete rubbish yet you continue to believe him. 

After seeing this I took all his consoles and locked them in the garage and stuck the house rules back up on fridge again.  He was to get the consoles back one at a time if he behaved.   As I told him, dealing with anger and violence and social deficits is one thing, but I cannot help him if he lies to me.  Cue another enormous meltdown.

It also looks like my relationship with the school is now in tatters.  I've no idea how to get over this.  Worse, I'm now getting reports that my son is starting to misbehave in school.

This last weekend my son was in a downward spiral.  He barely ate.  He begged to be let off school today.  He says that all his classmates bar one are 'annoying' him.  He says the amount of work he is being given is 'abusive'**.  He says that no-one is listening to him or being nice to him.  I don't know what to believe.  I know he has control issues and I am so afraid that he is just playing a game.  Push me and push me and scream and scream just to see if he can control my behaviour - in this case getting me to go back to the school and 'fix' everything for him.  Which might mean him changing classes or schools or getting less homework or getting a home tutor.  But I don't think he'll be happy then either.  Somehow he needs to learn to enjoy the life that he has.  If only the autism service providers would do more than just organise meetings and provide some real help and advice....

**not true!

Desperate measure on the domestic front

Don't read if eating, just eaten, or about to eat, or maybe don't read at all...

My Sunday dinner was spoilt this week.

Which is a shame because it is a big production in this house.  Angel is rather partial to her Sunday roast, and I like playing the game of let's see how many meals can be made from one chicken.  So most Sunday mornings are spent peeling mountains of vegetables, preparing sauces and stuffing and of course disinfecting the kitchen after dealing with the raw meat.

I am very careful about raw food and leftovers and how I dispose of them.

So I nearly got sick when I went out to the smelly dustbin in the yard to find these little white wormy things crawling up the inside.

Yes, I had maggots in my bin :((  

Even typing the 'm' word makes me want to retch and brings back nightmare memories of hiding and shuddering behind the sofa during a long-ago episode of Dr Who.   

I didn't dare tell the kids.  I can imagine that aspie boy would have demanded an immediate evacuation and even I was afraid to sleep on the Sunday night for fear that they would creep into the house....

Do you ever wonder about the lovely life of a SAHM and carer?  All those child-free hours while the kids are in school?

Well last Monday they were spent cleaning maggots out of the bin.

I decided to do the dirty deed in the back lane - currently only used by a biker who revs up and down while our children are trying to sleep.  Some time later with the help of a large bottle of Jeyes fluid and gallons of water, the bin was clean and so was the lane.  Thinking my troubles were over I started to clear up and bring everything into the back through the rarely-used garden gate.  Only to find that it wouldn't close, having dropped off its hinges during the hour or so that it had been open.  As I *may* have mentioned before, I have a problem with drills, so getting it shut was finally achieved with a combination of a tent peg, WD 40 and a hammer.  God knows if it will ever open again!

And still on the list:  The case of the broken long life light bulb.  They have mercury in them don't they?  I haven't been able to find out if this is dangerous or not, but I spent a long time cleaning out the shed just in case... The kitchen tap is still dripping 15 months on, and a few bits have fallen of it too.  But it's not a normal tap apparently.   So a special solution will be needed.  I haven't found out what this is yet.  And let's not mention the fridge, which still struggles to maintain a safe temperature.  Then there's the one remaining light bulb in the kitchen:  The lovely light fittings were chosen when I was still married to the man who can fix all things and sometimes did.  Changing the bulbs requires a ladder, a screwdriver, a bowl of soapy water and someone underneath to catch any of the glass bits that I might drop.  Six days later and I still have only one bulb ....

Oh and for my Facebook friends, I hope this post explains why I was a bit grumpy last Sunday!

Fighting for Domiciliary Care Allowance for my son with Asperger's

I got this in the post today:

It is clear from your application that your child requires additional support; however, while the diagnosis of your child's disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that required for a child of the same age who does not suffer from your child's condition.  As a result your child is not considered eligible for Domiciliary Care Allowance.

I suggest that my blog proves otherwise!  But then the Department of Social Protection has probably not found it yet.  And it's not just me.  Apparently many children with Autism, Asperger's and similar diagnoses are routinely refused DCA at the first application, which is then followed by a round of appeals and reviews, presumably designed to sap the will of parents already struggling with the difficulties of rearing a child with asd.

Facebook friends have advised me to keep a daily diary of everything I have to do for aspie boy.  As I need to start the appeals process tomorrow, I started writing the diary today.   And here it is:

A Day in the Life of a 10 year old aspie....with no meltdowns
 (probably very boring to read unless you have a similar child)

At 6.15 am he calls me, so I go down to him, give him a vest and pyjama bottoms and wait while he puts them on.  Then we go downstairs and I make him a hot chocolate.  He goes into his den and plays.  At 7.30 am I go into him and remind him to get dressed by 8.  I give further reminds at 7.45 and 7.55.  At 8, I remind him to come in for his breakfast.  And again at 10 past 8.  I make drinks for breakfast and lunch.   Once he comes into the kitchen for breakfast I have to keep reminding him to get his bowl and cornflakes as he keeps running up and down the room. 
After breakfast I remind and supervise him in putting on his coat and shoes, and cleaning his teeth.  When the school bus arrives at about 8.30 am I need to see him across the road because he just 'forgets' to look out for cars unless reminded.
He comes in from school at 2.40 pm looking glum after a run in with another boy who has apparently threatened to hurt him.  I remind him that he needs to talk to his teacher.  He also has a mark on his hand and a pain in his wrist, which needs lots of plaster tape and Nurofen before he will use it.   It seems he refused to do school work on the strength of his 'sore' wrist and was given extra homework as a result. 
The school provides lunch to stop the boys eating rubbish, but my boy won't eat it, and while I put a drink in his bag, he often forgets that too.  So he is hungry and thirsty when he comes in.  But I still have to tell him to finish the drink in his bag and make him lunch, followed by 20 minutes in his den to calm down.  Then he comes into the kitchen and it takes another 55 minutes before I can get him to start the homework, and 45 minutes to complete it.  I have to supervise it all, to keep him on task, and then check it.  
Three dinners need to be made: Smiley only eats mashed potato, but he won't touch that, so I also make lasagne and peas for me and Angel, and spaghetti bolognese for aspie boy.  About 8pm I go in with medicine, a drink and a piece of dark chocolate.  He gets a 5 minute warning before his shower, which turns into 10 minutes as he asks for another hot chocolate.  Then I have to wait while he checks something on his laptop.  Into the bathroom, where my role as usual is to remind him of what he should be doing.  After the shower it's up to his bedroom.  I read him a story but he keeps forgetting to listen and tries to engage me in conversation.  Then I say good night, but because of his fears I have to sit on the end of the bed and wait for him to go to sleep. This can take from 10 minutes to one and a half hours. Tonight I was back downstairs by 9.45 pm.  Finally I got time to complete a long-term illness application for him and to complete this diary...

My (special needs) bucket list

(Another middle-of-the-night post)

...To get 8 hours uninterrupted sleep.  Or possibly a bit more.

...To eat an entire meal without having to get up from the table.

...To hold a real conversation with my son about something that interests me.

...To spend a full day on the beach.

...To climb another mountain or two.

...To go on a picnic with the kids without anyone screaming or running away from wasps, bees, flies, spiders, or any other bug you can think of.

...To go on a proper holiday where they drive on the wrong side of the road and I don't recognise the food on the menu.

...To have the time, energy and support to get another job.

And I promise to write something more cheerful soon x